Gently changing perceptions: DownSideUp, a blog we love

Tania writes:

I wanted to share a blog post with you I’ve just read from Hayley at DownsideUp

Hayley’s blog, about her journey with daughter, Natty, who has Down’s Syndrome, gets stronger all the time and this post is one that highlights the importance of what blogging can achieve: an increase in understanding and awareness without it being shoved down your throat.

Hayley writes with warmth, humour and compassion but as ex-Cllr Brewer discovered, she’s not someone you would want to tick off either.

I’ve been reading a lot of posts lately for the Mumsnet #ThisIsMyChild campaign and you can find my round-up on here Mumsnet.

There are quite a few SEN bloggers these days and it was a pleasure to discover some new ones. For me however, the cream of the crop is Downsideup, (though I am very partial to a bit of Just Bring The Chocolate when she’s around too…:))

So here is an excerpt from Hayley’s post:

MUSICAL and LOVING aren’t they?

Well, I guess I can dispel myth and challenge stereotype just as efficiently through family tales and amusing anecdote, so let’s take a light-hearted look at one of the first things most people say when they meet someone who has a family member with Down’s Syndrome…

dsu

“Oh, I hear they are so loving, and very musical too.”

Firstly I have to say that I never roll my eyes, or even inwardly tut, when people say things that bely their limited knowledge of Down’s Syndrome. That was probably me once. I too didn’t know it was a ‘baby with Down’s’, not ‘a Down’s baby’ before I began on this journey. If people’s intentions are kind and they have taken time to come and talk to us, then we shall be ambassadors and leave them with a positive image of the people they met.

But yes, I have heard that before, and I am putting a penny in a jar every time I hear it. One day we will go First Class to Bermuda on the contents of that jar 😉

Read the rest here

Add the power of your voice to #ThisIsMyChild

thisismychild-250As you know, Special Needs Jungle is delighted to be involved with the MumsNet #ThisIsMyChild campaign, reviewing its inaugural blog hop and if you blog (and if not, why not?) I do hope you will write your story and add it to the link.

The idea of the campaign is to raise awareness of what lies behind the child having a melt-down in the supermarket or having a screaming fit at the playground.  To those who’ve seen this, as MumsNet says, “Did it make you go a bit… judgypants? Did you think ‘well, that child could do with a firm hand’? Or did you think that there might be more to the situation?”

It’s happened to me, as I wrote some time ago in my Sidelong glances post and if you’re a parent of a child with SEN/Disability, 10 to 1 it’s happened to you too.

TIMC-solus

Now, no one’s perfect, let’s face it – I know I’m far from it. But if sharing your story can help make just one person pause before hoiking up those “judgypants”, it might be something you want to consider having a go at. If you don’t have a blog but have thought about it, this might be the opportunity you were waiting for. If so, Don’t forget to join MumsNetBloggers so you can enter the linky.

I’m roping Debs in to read all the linky blogs – two sets of eyes are better than one, after all – and will do a review of the ones that made the biggest impression in a week or so. We’ll be tweeting as many of them as possible too and adding some to our Facebook page, using the #ThisIsMyChild hashtag to help you find them.

Although we are lucky in that we special needs parents support each other via our blogs, Facebook, Twitter and online communities – for example, I’m a volunteer moderator at RareConnect for Son2 and my Ehlers Danlos Syndrome – it would be good if we felt more supported by the general public as well.

#Thisismychild is a great campaign and with the power of MumsNet behind it, it’s already getting lots of media coverage. Our Debs was speaking about it yesterday on Radio Kent (after 63 mins, for a limited time)

What are you waiting for?

Click here to enter your link and view this Linky Tools list…Powered by Linky Tools

#ThisIsMyChild MumsNet Special Needs campaign

Tania writes…

MumsNet have today launched a new “myth-busting and awareness-raising” campaign called #ThisIsMyChild.

thisismychild-250It’s been launched in response to requests from MumsNetters and supported by input from some of the leading charities in the field.

Its aim is to support parents of children with additional needs, inform everyone else, and open up a conversation about how we can all act to make life easier for everyone caring for children with additional needs.

I am delighted and very excited to have been asked to support the campaign and will be picking my favourite posts from a Linky being launched on Tuesday – so standby for that.

Debs and I will  also mention some of the posts here on SNJ as the campaign progresses.

For this campaign to be a success MumsNet need it to reach far and wide, so please share as widely as possible – via Twitter (@MumsnetTowers), on Facebook , Google+ and anywhere else. You can use the HashTag #ThisIsMyChild on Twitter, Facebook & G+ too.

Already up is a Gallery, Mythbuster, Strategies and Facts and Figures.

The Mythbusters have been collated with help from campaign partners, Every Disabled Child MattersContact A Family and Mencap, and with help from the National Autistic Society.

The strategies is worth reading: I recall once, after the committal of my mother’s ashes, far from home, we went for a pub lunch and ASD Son2 was upset, refusing to eat or drink and had his head down. A woman across from us stared and tutted disapprovingly the entire time until I had finally had enough, got up and challenged her. She replied that she was actually staring at me (which she wasn’t)! Rude and a liar! She soon left. It still makes me cross to think about it, six years later.

Anyway, the campaign is definitely worth joining in with, adding your special needs blog posts to the link when it’s launched,

In case you didn’t know, MumsNet has a whole section on Special Needs with lots of information.

Of course, bloggers who write about their children with disabilities are every week trying to raise awareness, so it’s great that MumsNet is giving all those blogs a boost and helping the cause in such a high-profile way.

If you haven’t been to the MumsNet site in a while, you should pop over as it’s not just for mums of babies, but has an enormous amount of information on parenting, skills & careers (MumsNet Academy) too.

blogfest_headerWhile we’re on the subject, I’m thrilled to say I will be on one of the panels at MumsNet BlogFest joining lots of high profile speakers at the event such as Prof. Tanya Byron, one of my favourite writers, Lionel Shriver, and Louise Mensch. (I’m sitting here going ‘Lots of high profile speakers….and me.)

It takes place on Saturday November 9th. I’ll be easy to spot, probably in the wheelchair with long-suffering Debs pushing. Please say hello if you’re going – I’ll be more scared than you!

He did it! Son1, 15, made the summit of Kilimanjaro!

Tania writes…

Luca Kili

Son1, Luca, made it to the summit with other team members

For those of you who have been interested in Aspie Son1’s expedition to Africa, a quick update.

He made it to the summit of Kilimanjaro! He wasn’t alone, of course. Luca was one of seven boys and three team leaders in their group to make the very summit, Uhuru Peak, Africa’s highest point on 23rd July 2013.

I had heard the numbers already from the wonderful Suzi at school, but did not know if Luca was among the ones who had made it to the very top as, despite strength and training, there are many factors that can intervene.

Congratulations to Luca and to all the boys who made the ascent, in both teams, shepherded by teachers, Sherpas and the action men from World Challenge, whether they managed the final push or not. Let’s not forget, they are all at a specialist school, although those still with physical difficulties would, of course, not have chosen to make the trip. And, they are all aged 15-17.

They have already laid a classroom floor and dug drainage trenches at their twin school, got to know the children, played football with them and cooked for them. They are now on safari before returning home next week.

I dreamed on Thursday night I was with my boy and he told me then he had made it to the top. It was such a vivid dream that I knew it must be true. But real-life confirmation came from Will Scrace’s mum, Collette, and made me burst into tears with relief – many thanks to Collette.

Thanks to everyone who has commented with kind words here and on Facebook – it’s really appreciated and will be something I can show Luca when he returns. If you’d like to leave a comment, that would be brilliant – they’ve all worked so hard.

Happy weekend!

Expedition Roll Call: (Added to when and if permission given)

Team 1: Luca Tirraoro, Will Scrace, Chad White

Led by: Richard from World Challenge, Mick Johnson from MHS

Team 2:

Led by:    

Kili teams

The teams before departure

 

 

Is parental co-production just smoke and mirrors?

Tania writes…

If you’re a regular reader of Special Needs Jungle you will know what big advocates we are of parental co-production when decisions are being made about services for our special needs children.

A booklet all about co-production in the South East SE7 pathfinder, compiled by all parties involved including parents, defines Co-Production as “Co-production is one approach within participation and in SE7 Parent Carer Participation is welcoming parent carers to the strategic decision making process as full partners from the start”

You can download this booklet yourself here.

smoke-mirrorThe reforms are now moving into a second phase in the pathfinder areas where those local authorities and parent carer forums involved are working out how to implement the ideas they have been testing out. At the same time, some of these pathfinders have been named as ‘champions’ and are tasked with guiding the non-pathfinder authorities how to get with the programme.

All along, we’ve said here on SNJ that cultural change is the key to making a success of the reforms. That you could change all the laws you wanted to but nothing would be any different unless the LA staff carrying out the new system fully bought into the new person-centred, outcomes-focused ethos, where the parents’ and the children’s views were central to the process.

The reforms were needed in the first place because of the bruisingly adversarial and expensive practice that had built up over the years where many working in SEN seemed to think that taking on parents and their special needs children was some sort of gladiatorial sport. And ‘was’ is the wrong tense, sadly. It’s still going on all over the country, right now, despite the reforms speeding along faster than a Japanese bullet train.

At one of these ‘champion’ meetings recently, a non-pathfinder LA staff member was heard to remark, “Why can’t parents just be parents and professionals just be professionals?” In other words, we like the system the way it is, with us in charge and the parents in their place.

This viewpoint is not unusual and, I am disturbed to report, it’s not even unusual in the very areas that are leading the reforms. Many of the people who should be leading the new way forward , injecting culture changes with positive enthusiasm, have either never got fully on board or were just pretending to be in favour while quietly hoping they would soon be able to say, “Oh, yes, parental co-production. We tried that last year. We didn’t like it. It took too much time. We’re too busy giving them what we think they should have.”

So, in order for these reforms to make a jot of difference, a rapid and urgent process of ‘re-education’ needs to begin. Actually, it needed to begin at the same time as the reforms began to be developed.

…Most of parents have additional needs themselves..,, the problems we come across regarding health are dealt with in house …there’s no need to bother the parents about stuff like that… [Précis of comment from a senior SEN practitioner at a recent reform conference. Name withheld to save their blushes.]

But who is going to lead this massive undertaking? Who is going to make all these people, many very senior, have a complete change of heart and begin to openly welcome parents at the decision-making table, to value parents’ views as highly as they value their own and those of their ‘professional’ colleagues.

Nothing, I fear, short of the threat of job loss and maybe not even then, is going to do this. These views that parents should only vaguely be seen (preferably from a distance) and definitely not heard are so very deeply entrenched. And if they are still held within pockets of some, if not all, of the pathfinder authorities after 18 months of reform development, how the bloody hell are we going to change them in those authorities who are completely new to the whole idea in the remaining time before Royal Assent?

And how long will it be before having parents at the table becomes tiresome? After all, we know their views, they’re just the opposite to ours, aren’t they?

They are hoping, no doubt, that parents and those fantastic, hard-working LA staff who do believe in this reform (because there are many) will become exhausted, marginalised and may give up, and the role of parents will become minimised and then, non-existent. Again.

I urge the Department for Education and Mr Timpson to take this warning very seriously.

Your reforms are in grave danger of becoming a battleground of dashed hopes and disillusioned and furious parents who have worked so hard, turning up for meeting after meeting, even when so often, half those LA and most of the NHS staff nominated to go didn’t put in an appearance.

Mr Timpson, you must make it your business to oversee a firm policy of ‘change your ways or leave’ for those within SEN up and down the country who think they can just wait it out and go back to business as usual. It’s like giving us a fab new toy but saying you can’t be bothered to get us the right batteries so it works properly.

Taking a firm stance is the ONLY way because the stakes are too high for thousands of parents and vulnerable children whom you profess to want to help.

And I do believe you want to make a difference. I do believe that your department wants to make a difference. But if you do not take speedy and deliberate steps to ensure a change in attitudes of the people who will administer the new system on a daily basis, I fear that it will be back to business as usual with parental co-production becoming a fond but distant memory.

The TES SEN Show – SNJ will be there! (Early bird seminar offer)

You might have seen a logo top left on the site about the TES SEN Show in London on 11th & 12th October.

SNL12-mini-imageThe big news is… SNJ will be there! Large as life, Stand 45, me and our Debs and maybe some other contributors as well, as it’s over two days. Even better – it’s FREE to attend the show and  workshops.

There are also seminars which attract CPD points for practitioners and there is an early bird rate until 24th July so don’t delay!

We’re so excited to be invited and are currently figuring out what to have on the stand – but you can guarantee we’ll cover lots of SEN resources about the things we write about – and of course the very excellent SNJ pens! It’s worth coming just for one of those.

We aim to be the most informative stand at the show – so why not let us know what kind of resources you think would contribute to a great stand in the comments below?

Check out the information below for all you need to know whether you are practitioner or parent. And don’t forget to stop by and say hello if you visit!

TES Special Educational Needs Show, London
Business Design Centre – 11th and 12th October 2013

Come celebrate a world of SEN at the UK’s longest running SEN show!

 image001

TES Special Needs London is back this autumn and it’s bigger and better than ever. It has the resources, ideas, advice and CPD to provide teachers, SENCOs, support staff and parents with the tools and skills to help all achieve their goals.
Special 21st year

  • Join us to celebrate 21 years of being 100% dedicated to SEN. Celebrations include VIP/Celebrity host, My SEN mobile app, Cake, Presents, special show discounts and competitions galore.
  • New CPD Seminars Always 100% dedicated to SEN: within our inspiring 2013 CPD seminar programme you will learn about the latest issues from top SEN professionals.
  • Fantastic free workshops
  • Discover thousands of resources to compare and buy for every kind of special and additional educational need.
  • In celebration of our special 21st birthday, we are giving all those attending the fantastic ‘My SEN’ mobile app that will ensure you get the most out of your TES SEN show experience. My SEN will be available for download to all attendees in August.

Register for free and get your hot seminars tickets now before the summer holidays begin!
Early bird discount ends 24 July after which only standard ticket price will be available.

  • Visit our new website for all the latest news.    

 

Special Educational Needs Reforms – sorry, what?

You know us, we talk about the reforms to SEN currently going through parliament. A lot.

It’s important stuff and if done properly, will revolutionise the experience of future generations of SEN children. And parents – i.e., you and us, are fully (in some areas) involved with the process.

pushchair[Cue screeching of Mclaren Major and wheelchair tyres…]

We’e sorry, what? What the heck are we talking about? You know, the SEN reforms! You know almost nothing? No way!

Yes way… And how do we know this? Because we ran a survey to find out. And not only was knowledge about the reforms much lower than it should be, but almost three-quarters of people answering were worried that the changes would mean their child would end up worse off, losing provision.

The results are in, and it would appear that the DfE and local authorities need to seriously address the issue of communication.

  • 90% of respondents were parents, the other 10% were either practitioners (7%) or parents who are also practitioners (3%).
  • 66% have a child who currently has a statement and 19% had children on School Action or School Action +
  • Of those who had a statement, 15% had to go to SEND tribunal to either get a statement or to get a statement fit for purpose.
  • 174 people responded to our survey (thank you). Of these respondents, 61% lived in Pathfinder areas. Our highest responses came from SE and NW England.

surveygraphic1One finding that we probably didn’t need a survey to find out is that the cost of a Tribunal is high – both emotionally and financially. Especially when LAs often insist on purchasing extremely costly external legal representation. This is one of the reasons why parents welcomed the aspirational Green Paper way back in 2011.

So why, then, do only 10% of our respondents believe the Government is doing the right thing with the proposed changes and 45% of respondents believe this is not the right thing? Some replies:

The government is working on the incorrect assumption that all schools care about SEN students”

Rushing the Bill through before the Pathfinders have done their work is wrong”

The new Bill does absolutely nothing to address the problem of inadequate resources or how to make LAs accountable”

Question: Is the Local Authority you live or work in a Pathfinder?

This was a real eye opener. Almost half – 48% – of all respondents did not know. Even more shocking, 41% of those who were in Pathfinder areas didn’t know and 4% said they were not. So within Pathfinder areas, 45% of respondents did not know that their LA was a Pathfinder.

Question: Have you been involved in developing the SEN reforms in your area?

6% of all respondents had been involved extensively (this was slightly higher at 9% in Pathfinder areas). However, 67% of all respondents had received no information from their LA (via any method) about the SEN reforms, this was only slightly lower at 59% for those who lived or worked in Pathfinder areas.

  • 50% of all respondents knew very little or nothing at all about the SEN reforms – and this was the same in Pathfinder areas which is really concerning.
  • 72% are concerned that their child will lose provision under the proposed changes.
  • Only 8% are convinced that children and young people will have the same legal rights
  • Only 31% know where to go to find more information, 41% do not know where to find it within their own LA.

I am shocked as to the number of teachers and parents who know nothing about this, especially SENCOs”

surveygraphic2The Local Offer

71% of respondents knew nothing, or very little, about the Local Offer – this was only slightly lower in Pathfinder area (66%).

We asked what people thought the Local Offer was and overwhelmingly, parents believed it was either just related to Short Breaks or cash related. Some responses:

Set amount of money per child with SEN”

An amount of cash held by the council for people with SEN within their area to be allocated as they see fit”

This is to do with Short Breaks, like we had under Aiming High – what short breaks are on offer locally

Only three people responded with any real accuracy: “A web based “mind map” of the journeys families take and how to access help along the line“. Several people still presume there will be a resource directory – which was met with ridicule based on past experiences.

  • 71% did not know who would be able to access the Local Offer (67% in Pathfinder areas)
  • 42% were engaged with their local Parent Carer Forum (but many commented that they would now be contacting them to find out more)
  • 53% knew nothing (or very little) about the proposed EHCPs
  • Only 8% think the School-Based Category (to replace School Action/School Action+) is a good idea, but 51% admitted that they did not know enough to make an informed decision
  • 66% knew little or nothing about the offer of Personal Budgets (this was 67% in Pathfinder areas)
  • Over 50% were unsure about whether Personal Budgets were a good or bad idea.

I think the idea is really good but there MUST be good LOCAL support for families, provided by people who know the area – not a national box-ticking company”

surveygraphic3Keyworkers

In the Green Paper, there was lots of mentions of Keyworkers for families and families were all delighted. However, once the draft Bill arrived along with the draft Code of Practice, Keyworkers became a good idea but not essential. We asked if families should be given the option of a Keyworker to support them through the process and should this offer be a requirement, rather than a recommendation and 76% said yes. In Pathfinder areas, this rose to 81% – and that speaks for itself.

We asked people to give general comments throughout the survey and I have chosen my particular favourite.

“What needed to change was LA/LEA/School accountability to parents and children so they delivered what they were supposed to deliver. The law in itself was good – it was just the power to enforce pre-tribunal that was weak”

It wasn’t a huge survey but still, there is much to be taken from it regarding the views and level of awareness of parents. Some of the changes were needed (e.g. education to 25, not having to wait 26 weeks for a statement) but the biggest change needed is culture change and the proposed Bill does nothing to address this (even if Mr Timpson has spoken of its importance). If it ain’t in the Bill, it means nothing.

So we would like to ask HOW will the DfE and Local Authorities ensure that parents, children and young people are involved and informed? This Bill is travelling fast so time is limited; they need to take action now.

Congratulations to the 5 winners of the e-book version of Tania’s “Special Educational Needs, Getting Started with Statements.” Emails with single use codes to download your book from Smashwords ebook hub will be landing in your inbox in the next few days.

Pie Charts: Marco Tirraoro (Financial Modeller & Business Partner Extraordinaire)

Summer’s here: Where are we in the SEN reform process?

Tania writes

Well, good question.

The answer is we’re here, there, everywhere and nowhere, depending on which county you live in.

cdc_timpsonjuly2013As the long summer break approaches (and enjoy it while it lasts as Mr Gove has it under his microscope – though I can think of better places for his microscope) let’s take a look at where we’re up to.

This is an easy exercise, as Ed Timpson, the Minister in charge, who certainly seems to be a very genuine and well-intentioned person, has written today to the Council for Disabled Children with his own round-up of the broad facts.

You can download the letter for yourself here but to summarise:
  • The Children & Families Bill has now completed the House of Commons stages of the Children and Families Bill and has just completed second reading in the House of Lords. Ed Timpson said, “I have very much welcomed the engagement of many sector and parent-carer organisations in the careful scrutiny of the Bill clauses. The debates in the Bill Committee and in the House were rightly challenging but also constructive.”
  • The CDC has worked with the DfE and produced a leaflet explaining in more detail the reforms to the SEN funding system. The leaflet explains clearly that the funding changes do not change the legal responsibilities of schools and local authorities for children with special educational needs.
  • The indicative Code of Practice has been published and a full consultation will begin in the autumn.
  • CDC and DfE have been discussing the arrangements for reviewing Education, Health and Care Plans, especially the reports parents and young people receive about annual review meetings and the year 9 transition reviews.

As we develop the Code of Practice, it will be important to write it in a way that supports a real improvement in outcomes for those with SEN in schools and colleges in order to meet the Department’s wider aims to improve attainment and close the gap. Ed Timpson MP, Education Minister.

  • The DfE is now thinking more widely about implementing the reforms, and how to manage the changeover to a new legal system from September 2014. It is not proposed to move wholesale to the new system from September next year; rather it will be the beginning of a period of gradual and orderly transition to full implementation.
  • The pathfinder champions are now holding their first regional meetings to support non-pathfinder areas, and have recently shared core learning points through a series of information packs, which can be found here
  • The DfE will be providing £9m in 2013-14 to support local areas to prepare for implementation.
  • Evidence from pathfinder experience and evaluation reports have emphasised the value of early engagement with parents and parent carer forums. (Hurrah!)
  • The DfE will be publishing more information in early autumn to continue to support implementation.
  • Additionally, not mentioned in the letter, the 20 pathfinder areas have all developed or are still developing their own versions of an EHCP and Local Offer, Personal Budgets, Transition plans and so on. Lots of money spent, lots of work carried out and quite a number of minds changed on both parent and practitioner sides about one another.

All very nice (or as my SEN barrister friend Gulshanah, would say sweetly and with a ton of barely-detectable cynicism, ‘That’s lovely, isn’t it?’

Recently, SNJ published two posts raising concerns in the bill, none of which seem to have been addressed so far. You can read the posts here and here to see the issues that remain. The letter doesn’t answer these questions, with the exception of the Annual Review question which is under further consideration. To make for easier reading, we’ve combined them into one easy to download PDF

senreformmontageWe do hope that these problems and omissions will be tackled in the autumn as the next parliamentary stages are started, as Mr Timpson says himself, “I am aware that there will still be some areas that you and others in the SEN and disability sector will want to see evolve further as we start the next Parliamentary stages in autumn. lt is very much the right time to raise these points so that we can continue the constructive dialogue between the Department and the sector.”

We, and we hope, you too, will be continuing to work as much as possible on influencing the bill through the channels that we are part of. It is so important to stress that everyone concerned with the bill has an opportunity to make their voice heard. For parents, this is most likely to be through their local parent-carer forum.

For parents who have SEN children,the upcoming consultation of the Code of Practice will be a huge opportunity to have your say. This is where the rules and regulations will be written and if your child doesn’t have a statement/EHCP, this is even more important. Read the draft – you don’t have to do it in one go, take the whole summer to comb through it and make notes.

Your voice may be the one that makes the difference. It’s easy to complain when you don’t like something, much harder to do something about it so if you are in a position to, do make your voice heard.

Later this week we will be publishing the results of our survey into how much SEN/D parents and carers know about the SEN reforms. They make for startling reading. As a taster:

  • 40% of respondents in Pathfinder authorities did not know if their area was a pathfinder or not.
  • 60% of those in Pathfinder areas had heard nothing about the Pathfinder
  • Just over 50% do not feel they know enough to say if the school-based category is a better idea than School Action/School Action Plus

We need as many parents and carers to be as informed as possible, whether or not they can be or want to be involved. Local authorities, schools, colleges, children’s centres need to do a better job of funnelling information through to parents about the reforms and about their local (voluntary and over-stretched) parent-carer forums.

There’s no space to tell you how to do that, though as an experienced charity PR, I have plenty of ideas. I would hope every Local Authority’s Comms Department do too!

Kilimanjaro Update – no casualties so far!

Tania writes…

A quick update on the 17 boys, all with some form of special needs, including my eldest, who’ve headed off from More House School in Frensham to climb Kilimanjaro and build facilities at their twin Shia School in Tanzania.

They’ve all arrived safely, are haggling and buying their own food and cooking for themselves, doing acclimatisation treks to prepare for the climb and even practising some Swahili. No casualties reported so far, though I am still worried that five pairs of pants for a month just isn’t going to cut it.

Below is from the front page of this week’s Surrey and Hants News by journalist Henry Ascoli who asked if he could focus more closely on Luca so that the readers would understand more about what a challenge it is for these boys in particular.

Fingers crossed they stay safe and I’ll let you know how they get on.

For me however, the challenge will be to get his younger brother into school for the rest of the week before Founder’s Day on Saturday, a morning that is always a test of endurance, high emotion and anticipation seeing which parents have deepest pockets to bid on the yearly auction (Hint: it won’t be us).

It’ll be hot, so I advise any new parent at our school to have fans, water and tissues (for joyful tears) at the ready, as the boys (all 400+ of them aged 7 to 18, except for those below) collect their end of year certificates and we laugh as Mr Yeoman pokes cruel, yet caring, fun of the sports teachers once again.

Kili

Asperger’s, anxiety, Angels and an African adventure

Tania writes:

Eighteen months ago, Asperger’s Son1 signed up for the trip of a lifetime.

His special(ist) school had joined up with World Challenge to organise a month-long expedition to Tanzania in Southern Africa. Participants would carry out project work in their twin school, Shia school, go on safari but most importantly, climb to the summit of Kilimanjaro.

Kilimanjaro

Destination Kilimanjaro

The school, More House, in Frensham, educates boys from 6-18 who have a variety of learning difficulties. They are bright boys, but may have dyslexia, Asperger’s, dyscalculia, dyspraxia and other similar disabilities and have a different learning style to that in mainstream. The school has a growing Learning Development Centre with an expert OT department.

So, a trip up a 5,895 meter mountain, the highest in Africa, is not going to appeal to every year 10-12 student. Especially the part where they had to raise the £4k plus cost themselves.

But Son1, whose difficulties are social and communication rather than physical (apart from a lifelong tendency to fall over nothing and break stuff just by looking at it) was up for it. He took part in the training and the fundraising and learned valuable skills along the way.

brotherly love

A brotherly farewell

And it hasn’t been only him who has had to learn skills – I have tried (and often failed) at not transferring my own anxiety to him. Anxiety is one of his major difficulties but he has learned to hide it to fit in and so it comes out in other ways, often aimed at us. We have learned to understand this and to breathe deeply and not shout back.

And so, today, 18 months later, the day of departure has arrived.

Top Dad, a former Royal Marine Reserve, has had endless fun “helping” (okay doing) the kit prep. He confessed that for weeks he’s thought it was him going up the mountain and is now devastated to realise he won’t be going himself.

Amber good luck Angel

Amber good luck Angel

So, checklist: Good luck amber angel and laminated angel prayer from (loopy) mum? Check. Immunisations? Check. Epipens for allergies? Check. Passport, visas, paperwork, four season sleeping bag (it’s freezing at the top), walking poles? Check, check, checkety check check.

Me with Son1

Tania with Son1

Tension has been high for the last 24 hours with Son1 answering every parental enquiry with a snappy, tetchy response. Anxiety hovered uneasily over Tirraoro Towers.

He said farewell to Son2, who is at home again, having decided school activity week is boring and not for him, thank you. He is an elegant school refuser. No shouting, no tears, just a polite decline.

kitcheck

Last minute adjustments from Top Dad

Anxiety joined us in the car on the way to school. I got a half hug when we got there, Top Dad was refused one. And then he was gone.

Will I see my amber angel again? Will we see Son1 again? Stay tuned. For those of you who have a spiritual side, here is my Angel prayer for my precious boy.

I  call on you, Archangel Metatron
And as many angels as needed
To protect my son, Luca on his travels
To surround him with protective angelic arms
And keep him from harm
And return him to me safe, healthy and happy
Guide him to get the most from his journey
And to gain in wisdom, compassion and spirituality
Help him to think ahead before he acts
And to keep going when he wants to give up
But most of all to enjoy his time
And know that we are all thinking of him
Thank you.

A spin around The Autism Show

Last Saturday, Debs and I visited The Autism Show at London’s Excel. Poor Debs fell over the dog a couple of days earlier and has her wrist in a splint so my long-suffering husband, Marco, came along as chief wheelchair-pusher and photographer, so thank you to him for putting up with my constant requests to go, stop, get closer, further away and turn left and left (I can’t remember right).

It was great to put faces to names and we excitedly foisted lots of our brand new SNJ pens onto people whether they wanted one or not.

We had an interesting chat with Mark Hayes from Autism Eye which is a great publication – free copies were available at the show. The magazine is also available as a digital download as well.

IMG_0971

Tania, Anna Kennedy, Debs

It was a whistlestop tour as I had to dash back to watch Son1 play bass in the school Jazz Band at a local Fayre  (they were splendiferous, if you like jazz take a peek at this. You can’t really see Son1, he’s the blond kid right at the back). Because of this we didn’t get time to see the Autism’s Got Talent show, but we did meet and have a chat with its founder, the tireless Anna Kennedy. Among her many achievements, Anna has started her own autism school, published a dance DVD for people with autism and hosted many, many events to improve the lives of young people with ASD, as well as having her own special needs children.

IMG_0961

Peter from SEN Mag, Tania & Debs

I was also delighted to meet in person, Peter Sutcliffe, the Editor of SEN Magazine. I have written for SEN Magazine in the past and subscribe myself – it’s a great source of information and ideas!

The award winning team from SEN Assist were also there. They make educational software for children with SEN and Adele, the company’s founder also works at Freemantles Special School, so she has plenty of young people to test her products on!

There were lots of stands with interesting resources, specialist schools, sensory equipment, legal services, and even products made by young people with autism from LVS Oxford. They teach their students real skills they can use in adult life, which of course, brings with it increased confidence and self-esteem. I bought some of their lavender sachets, my favourite scent (very old fashioned, I know!) Son2 decided when we got home that as he is a fan of lavender as well, I must have bought them for him. I have not seen them since but his room is smelling suspiciously fragrant.

IPSEA were on hand to give free advice in private cubicles and there was a big presence of course from the NAS and Ambitious About Autism

IMG_0969

Evelyn Hope Ashford & Debs

One great resource we will be featuring in more depth soon is Advocacy Service, Education Equality founded by Evelyn Hope Ashford. It is a low-cost advocacy SEN service and their advocates can also accompany you to meetings, tribunals and so on. Check out their website for more information.

We met so many amazing people in such a short amount of time! I really think the world of special needs is blessed to have so many energetic, dedicated and just bloody amazing people working to help children with SEN/D. Many, if not most of them are in the sector because of their own direct experience as parents of children with disabilities.

Finally, I end the post with an apology. I was due to co-present with Debs at the Wordswell Towards a Positive Future conference this Thursday. Unfortunately, I have realised after the weekend’s activities of Autism Show, Fayre and supermarket (how very dare I!) left me too exhausted to move on Monday, that it’s just not possible for me to manage the demands of travel and a day long conference. EDS and PoTS strike again!

However, Debs will be holding the SNJ fort and she has a brilliant presentation about parental co-production. I understand there are just a few places left, so if you are near London or can travel, tickets are just £30 for parents including lunch – and the chance to meet Debs of course and grab an SNJ pen – who could resist?

Other presentations will be from IPSEA’s Jane McConnell and Child Psychologist Charlie Mead, both of whom I am very sad to be missing. I am a great admirer of Jane and Charlie is one of my heroes for his brilliant work with vulnerable children.

If you do go, let me know your feedback – it’s a great line-up and our Debs is a complete star; I’m so proud to have her with me on Special Needs Jungle. We have lots of exciting things lined up in the next few months. The TES logo top left is a clue!

Did you go to The Autism Show? What did you think?

Evaluation of SEND pathfinder report – some nice weekend reading!

senreform2The Children and Families Bill has had a busy week, having a third reading in the House of Commons and then a brief first reading in the House of Lords.

It really would be nice, by the way, if the DfE could provide a little bit better public notice of these events for people who like to follow them.

I watched most of the Commons reading but just haven’t had time to write about it, although many interesting points were raised, particularly by the Labour Education spokesman, Sharon Hodgson and Robert Buckland MP, who has himself worked on many SEND tribunal cases.

If you’d like to watch the reading yourself, you can do so on parliament live TV here

The DfE has now published an “Evaluation of the SEND pathfinder programme” as a nice bit of weekend reading.

This report is the first of two volumes containing the evaluation findings from the first 18 months of the Special Educational Needs and Disabilities (SEND) pathfinder programme.

To recap:

Twenty Pathfinder sites, comprising thirty-one local authority areas were tasked to develop and trial: an integrated assessment process: a single, joined up ‘Education, Health and Care Plan’; and personal budgets across education, social care and health, and adult services as appropriate for children and young people from birth to 25 years.

Debs and I are parents-carer reps for Kent and Surrey respectively, part of the SE7 pathfinder group.

The evaluation’s key findings highlighted that the pathfinders have invested considerable resource to establish new processes including: the assignment of a key worker so that families have a single point of contact; the development of personal profiles through which families and young people can express themselves; adopting person centred planning approaches; and moving to a single EHCP document.

The general feedback around each of these developments has been positive. Pathfinders appear to recognise the advantages of working differently, and are positive about the impact of the changes.

Both the new process and the underlying ethos were seen as important. The changed approaches were reported to have increased choice and control for families. In all cases they were involved in the development of outcomes and agreeing the plan to meet these outcomes. The challenge of a shift to focus on outcomes was clearly demonstrated, with many key workers reporting finding the development of outcome based plans challenging.

It also noted that further workforce development and support for cultural change will be important moving forward. I should coco! Not only important, but absolutely vital and top of the list. And if we’re finding it a challenge in the pathfinders, imagine the job those other councils outside the trails that groups like the SE7 are to mentor are going to face over the coming months.

Still, I have been mightily impressed by the work being done and the positive approach that I’ve seen and I have high hopes still.

Problems remain however and we will have more to say, of course, about our opinions on this.

In the meantime, if you would like to read the report, you can find the page here

I’m now off to my youngest’s GCSE options evening. Really not sure how he got that old so quickly. Or me!

Carer’s Week: My son is a young carer

logoIt’s Carer’s Week, organised and supported by quite a few charities in the UK

Carers provide unpaid care by looking after an ill, frail or disabled family member, friend or partner. Carers give so much to society yet as a consequence of caring, they experience ill health, poverty and discrimination.

Caring Facts

  • There are over 6.5 million carers in the UK.
  • Every day 6,000 people take on new caring responsibilities.
  • Every year two million people take on new caring responsibilities.
  • Most carers (5.7 million) are aged over 18 and the peak age for caring is 50 to 59.
  • 1.5 million carers are aged over the age of 60.
  • There are 175,000 young people under the age of 18 who provide care, 13,000 of these provide care for 50 hours or more per week.
  • One in eight workers in the UK combine work with caring responsibilities for a disabled, ill or frail relative or friend.
  • If you are not a pensioner, or in full time education, you may qualify for £59 a week government allowance, but only if you earn less than £100 a week net.

To mark Carer’s Week, SNJ’s pal Angela Kelly, who is Tania’s co-chair at Family Voice Surrey Parent-Carer Forum, has written this moving piece for us about her own son who is a young carer…

****

Young Carers – Angela, Edward & Monty

Young carers are children and young people who look after  or help to look after someone in their family who has an illness, a disability, or is affected by mental ill-health or substance misuse.

Young carers often take on practical and/or emotional caring responsibilities that would normally be expected of an adult. The tasks undertaken can vary according to the nature of the illness or disability, the level and frequency of need for care and the structure of the family as a whole.

angelaboysThe above is a definition of the tasks a young carer undertakes in their daily lives, and it outlines it quite well.  What the statement cannot tell you though, are the sacrifices a young carer makes, which in many cases amounts to the loss of their childhood.  The social, emotional and wellbeing sacrifices are immense, but often not realised or noticed by the young carer.

However, in my experience  it would be difficult to find a young carer who would see their role in the same way.  Many of the ones I know would shrug their shoulders and tell you it’s “just life”, what they do, what they are used to, how they have been brought up. I have every admiration for them.

My older son, Edward, is classified as a young carer  to his younger brother, even though he has his own difficulties. Although he has my support (many young carers may not have this if they are caring for their parent or parents) there have also been many occasions when he has had take to take on the role of caring for his brother.

He has had his brother, Monty, sleeping in his bed on many occasions to enable me to get some sleep after perhaps two or three nights of tending to his very active brother. He has then had to attend school the following day.

He has tried to help his brother learn positive ways to behave and has helped to feed him when I, after an hour of coaxing, had given up, thoroughly exhausted and despairing at what life had become.

angela2He has missed out on all sorts of trips because I have been unable to take his brother along because his behaviour is too disruptive (there were never many willing babysitters!). He has not been able to join the local cricket club.  However the most heartbreaking is that he has been the object of severe bullying at school because his brother is ‘a retard’. He is, in fact, autistic with seizures and learning difficulties.

School never acknowledged the bullying and merely punished my own son’s retaliation to the bullies. I felt totally helpless.  He has also had to tolerate my guilt and anxiety at not being able to do many of the things with him that I wanted, and he needed me, to.  Instead we snatch the odd outing together and have lunch together now and then. Not really the mum and son things I envisaged when I dreamed of what having children would be like.

Despite all of this, the love they have for each other is amazing to see. They fight and fall out; which siblings don’t!  I do know that Edward would do anything for his brother (except watch CBeebies – there is a limit!).  His passion for fishing that he learned from his older siblings (who have moved out and are living independently) has caught  on and he has now hooked Monty into the sport, tiny steps so far but one day it might be a shared interest they could do together, so I am hopeful.

I asked Edward just now if he thought he was a young carer and he responded, “Nah, not really, it,s just what I do.”

Says it all really!

Angela wrote about a Day With Monty a while ago on SNJ. Read it here

Contact A Family extends free benefits helpline service

CaF logoThe brilliant charity, Contact a Family, is from today offering an extended helpline service.

Contact a Family has long been a source of information about the benefits system for parents of disabled children, however now – thanks to three years of funding – they will be able to offer more personalised advice for parents living in England.

From today (June 3), if you get in contact with CaF, they will be able to offer you an appointment with their welfare experts to discuss your situation. They will then be able to take you through the latest relevant benefits advice and run through any other financial help you may be entitled to maximise your income.

Senior Parent Adviser and welfare rights expert, Derek Sinclair said:

“At a time of huge change to the benefit system, this will provide a badly needed source of  free, confidential, high quality and up to date advice for parents. Our advisers will make sure that parents have the right information to make informed choices about issues.”

These include:

  • moving into work
  • benefit options when a child reaches 16
  • or how to use self-directed support to take greater control over how services are provided to their disabled child.

Contact a Family will also be offering a series of workshops across England  to raise awareness of the new benefits system. Get in contact with your nearest office  to find out more.

You can also access their quarterly welfare update in their What’s new e-bulletin and a range of resources to help parents make sense of the benefits maze. Sign up to receive your free copy.

Contact the CaF team of experts on freephone helpline number 0808 808 3555, email them on helpline@cafamily.org.uk or post a question on their Facebook page https://www.facebook.com/contactafamily

You can also:

  • Watch our video – meet the parent advisers and find out how they can help

Catch your kids being good with help from Maya Angelou

Tania writes:

“Catch them being good” is the oft-repeated advice to help encourage positive behaviour in children. And it’s good advice. But when your child has a behavioural disorder such as ADHD or Oppositional Defiance Disorder, it can be very hard to do.

For one, you are probably on your last nerve and your child seems to be determined to get on it. For another, you probably feel that you’ve tried all the ‘good advice’ and your child is resistant to all of it.

But, as the parent of two, now teenage, boys both of whom have Asperger Syndrome and one with ADHD and the other ADD, I would urge any parent in this position to keep trying with this particular piece of advice, even if you have to do it, at times, through gritted teeth.

Angelou quote 1It’s also difficult to remember, especially when you’re exhausted and the mere sight of the source of your angst, little Jane or Johnny, can make your stress levels soar. You’re constantly on the edge, waiting for the next crisis to blow-up. Parenting can feel like fire-fighting, with little time for fun.

Being a parent/carer of a child with special needs can be like being in a battle zone with other parents of ‘regular children’ sitting on the sidelines tut-tutting and always ready to tell you your tactics are all wrong.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”  Maya Angelou

The above quote by American writer, Dr Maya Angelou, is what ‘Catching them being good’ for children with behavioural issues is about. It’s not the words you use or the action you praise, it’s about the self-esteem you are building in your child by doing it.

These children may look like nothing bothers them but you would be very wrong to think that. Every harsh word, brush-off, dressing down and punishment is keenly felt as rejection and the constant message that they are bad, unwanted and not worth loving.

So how do you do it? How do you step outside your own heart-ache, despair and sense of parental failure to build up the self-esteem of the source of your stress?

Here are a few tips that worked for us. They may work for you, they may not, but watchfulness will give you clues as to what does work for your child. You have to build on this and not give up. Of course I am not a child psychologist, I’m a parent, like you, and so I am speaking from my own direct experience.

1. Make a list of your child’s difficult behaviours. This may include being super-fast to anger, screaming, hurting other siblings/children, being unable to sit still at the table, not responding when spoken to, refusing to wash or go to bed or walk safely outside etc. Making a list when you are sitting quietly and calmly can also help you begin to identify triggers for particular behaviours.

2. Now you have the list in your head, you know what to look out for. So, when your child has sat at the table for even five minutes, praise them. It’s tempting to ignore it while they’re being good in case mentioning it sets them off, but this is a long process and you will both learn as you go along. “It’s so nice to see you sitting in your seat, it makes me really enjoy being with you at dinner time.”

Angelou quote 2See, this is not just, “Well done for sitting still” which really means nothing. You are, instead identifying the positive behaviour and backing it up with a positive effect it has had.

Another scenario: If you have identified some potential triggers from your list and you realise such a situation is about to arise, don’t wait for it to happen and then react. Step in with your praise first.

Perhaps your child finds not being first in the queue really hard, or not winning on Sports Day overly distressing (both experienced by Son1). Just ahead of time, say to your child that you understand that they find not being first really tough to cope with and you will be very impressed if they can hold it together if the worst happens.

So here, you are validating their feelings so they know it’s okay to feel bad if something doesn’t go as they planned, but you are giving them another option for a reaction. Personally, in this situation, I would also offer a small reward.

If they don’t manage to hold it together, console them rather than reprimand them. I know that Son1 had no confidence that he could control this overwhelming need for being first, but by praising each small step and helping him see that he had done the best he could, helped him to eventually overcome it.

“I did then what I knew how to do. Now that I know better, I do better.” Maya Angelou

Don’t give them mountains to climb though, praise small positive behaviours and begin to build up confidence.

Will it work first time? Maybe, maybe not, but don’t give up. Because :

  1. Your child will begin to see that you understand what makes them tick and this will increase trust.
  2. You will begin to feel more in control because instead of throwing up your hands and wondering WHY s/he does this, you will know and be in a position to help.
  3. Eventually your child will begin to see that they have a choice over how they react to situations. This is a huge skill and something many adults don’t even know.

angelou quote 3“Nothing will work unless you do.” Maya Angelou

So, it’s not a quick fix, by any means. But my child was worth investing the effort in. From being the recipient of behaviour charts in reception, alienating other children and being, at times, uncontrollable, Son1, now 15, is in one month’s time joining a school World Challenge expedition to Tanzania to climb Kilimanjaro and  carry out project work.

I am immensely proud of him and the way he has been enabled to work out many of his difficulties with the help of his Dad, myself and his specialist school.

I hope this might help you with your child. Or maybe you have some tips of your own that you could share?

Sayonara, School Action and School Action Plus

Debs writes….

senreform3The Government is proposing to replace the current categories of School Action and School Action Plus with a new single early years and school-based SEN category.  This will mean that your school of choice will have to comply with clear guidance from the Government on the appropriate identification of pupils with SEN.  This guidance will include a clear process for identification and assessment of pupils, setting objectives for pupils, reviewing progress and securing further support.  This will be set out in the new SEN Code of Practice  – an indicative draft of the Code of Practice (COP) is already available.

Take a look at the Code Of Practice, specifically Section 5.4 looks at Identifying Needs, 5.5 looks at The Four Primary Areas of SEN and 5.6 covers Additional SEN support in settings.

Tania and I have written about the draft Code of Practice in previous posts which can be read here and further views here

One paragraph in 5.6 leaps out to me as a parent :

“It is the responsibility of educational settings in consultation with parents, and, where appropriate, the young person, to decide whether a child or young person requires Additional SEN Support. They must ensure that children and young people who receive Additional SEN Support have an identified SEN and that their progress has not been hampered by weak teaching or poor attendance”

Does your school consult with you?  Do you know now if your child is School Action or School Action Plus?  Did your school involve you in the decision to place (or remove) your child in this category?  Do you think your school will admit that your child’s progress has been hampered by weak teaching?

The Ofsted review of SEN (2010) found that nearly one fifth of the schools visited suggested that they provided additional SEN support when, in other schools, such provision was regarded as the norm.

Therein lies a huge part of the problem.  We all know there are schools where the staff will do all they absolutely can to ensure your child reaches their full potential and then there are schools which prefer to lay the lack of development at you and your child’s feet.  I am very fortunate in that all three of my children are now in schools that take the former stance and not the latter.  However, I do personally know of schools where there is not a chance in a million that they would ever admit they were perhaps the problem.

Ofsted reports do not always reflect the true representation of SEN in schools – we all know of parents asked to keep their child home for the day Ofsted are arriving or their Ofsted questionnaire somehow not making it home.  Would these schools be holding up their hands to say “oh sorry, some of our teaching is a bit weak”.

The proposed removal of School Action and School Action Plus is part of the Children and Families Bill.  After considering the Ofsted review of SEN (2012) and the Lamb Inquiry (2009), the Government believe the current system emphasises labelling children’s need according to the support  needed rather than the outcomes sought for the child and can lead to children being unnecessarily labelled as having SEN.  It also found that ‘there is a risk that the use of the SEN label itself leads to lower expectations or less vigorous intervention.

beaconThe Lamb Inquiry (20091) reported that SEN can sometimes be ‘unhelpfully collated’ with falling behind, and this may have contributed to the growing number of pupils at School Action and Action Plus.   Did you know that at the end of Key Stage 2, August-born pupils are 60 per cent more likely to be identified as having SEN than September-born pupils?

The Government believe that removing the need for a label of SEN, will challenge schools to improve the quality of teaching and learning for all pupils but what do you think?

Once again, we come back to the culture change needed.  The new Children and Families Bill and indicative draft Code of Practice do not totally reflect the aspirational Green Paper that so excited so many of us.  However, it is still a draft and as a mum, my main concern as I read through them is this tells us what the goal is but not we actually get here?”

What about the very basic communication to families and practitioner of the proposed changes.  If we can’t get that right, how do we propose to get all of the changes right?  Have you heard about the changes in your LA?  Take our quick survey and let us know – we will be sharing the results with the Department for Education.

There will always be great schools, management, LA Officers and staff (our Beacons of Good Practice) but there will also always be poor schools, management, LA officers and staff.   As long as that fact does not change, then does it matter what they call the provision of additional SEN support in settings?  What do you think?

Dr Tony Attwood’s views on Asperger’s and girls

Tania writes:

I was recently lucky enough to attend a conference given by both the world-renowned expert in Asperger Syndrome, Dr Tony Attwood and Dr Carol Gray, the inventor of the social story.

Attwood

Tania with Dr Tony Attwood

The conference was organised by Freemantles School, a special school for children with autism spectrum disorders in Surrey. I’m planning to write a post about Dr Gray’s presentation another time, but this post will focus specifically on one of Tony Attwood’s themes: Asperger’s and girls.

Tony Attwood has already written a book about the subject, so if this article piques your interest, you might want to buy the book to delve deeper (link at end of article).

As you know, I have two Aspie sons and have long suspected that I also am an closet Aspie (though my husband would counter that there’s nothing ‘closet’ about it!). After listening to Dr Attwood’s presentation, I could have cried – in so many ways, he was describing me!

It has been generally accepted that the prevalence of Asperger Syndrome in girls is about 1:4 of that found in boys, but Dr Attwood believes this to be more like one girl to every two boys.

The reason for the misconception is because girls with Asperger Syndrome present very differently to boys with the same condition and “fly under the radar of a diagnosis”.

Whereas boys are more often diagnosed in their primary years, for girls it is not until they reach secondary school that the difference becomes more apparent, because girls’ coping and camouflaging mechanisms and their skill at imitating mean that they appear to assimilate with their neurotypical peers.

The route to diagnosis also differs from that of boys and comes more often after a secondary disorder is diagnosed in adolescence such as Anxiety Disorder, depression, Borderline Personality Disorder, an eating disorder (as a method of control) or selective mutism (because they are overwhelmed).

Then, once a detailed developmental history is taken by a clinician, the diagnosis of Asperger’s becomes apparent (if she is lucky enough to have a knowledgable doctor!)

While her peer group moves seamlessly from childhood friendships into teenage talk, conversation and cliques, the Aspie girl finds herself internally cast adrift on a sea of choppy water and hidden whirlpools. She is unable to read the unspoken rules and meaningful glances that are so important to fitting in – though she often manages to cope by copying what the other girls do.

“Sometimes they do it so well that you wouldn’t believe it until the mask falls”, Dr Attwood says. He described the profile of ability in girls as:

  • Observing and trying to understand before the make the first step
  • Reading fiction or watching soaps to learn about inner thoughts and feelings
  • Decoding social situations in doll play and imaginary friends
  • Apologising and appeasing for social mis-steps
  • Being a chameleon

Aspie girls, Dr Attwood said, learn how to adopt a persona for different situations and they have learned to act so well that many affected girls say “They don’t know the real me”. The drawback of this chameleon tendency is that it can lead to depression.

Girls with Asperger’s can suffer intense fear of rejection, particularly surrounding their ability to make, but not keep, friends. They often have one friend who provides guidance and security.

I myself remember the isolation when my one friend was off school and the sheer terror at the thought of approaching other groups of girls, not knowing how to approach them or what to say. Would anyone have guessed that to look at me? Of course not.

And while fitting in at primary might be easier for girls, when they hit adolescence and they find that conforming to social convention goes wrong more often than right, the pendulum, Dr Attwood says, can often swing the other way.

This is sometimes demonstrated by the visible rejection of everything they feel they are not good at, i.e., being one of the in-crowd or the “popular girl cliques” and choosing to wear black clothes, tattooing, piercing, and sometimes, more worryingly, falling into promiscuity or the use of drugs.

For me, this is the girl saying, “You don’t want me? Well I don’t need you either; I can go my own way.” It is a self-preserving decision not to compete against odds stacked against her.

goth girlLinking up with other, similar ‘alternative’ people can bring friendship. Again from my own experience, I had a group of friends when I was 17 and 18 who were all a bit different in their dress and/or attitudes. They were mainly male. The best thing was, they accepted me, were happy to hang around with me and most of all, were not judgemental.

But Dr Attwood explained that social situations also bring other challenges for Aspie girls such as “social exhaustion”. Social interaction and the constant state of alert needed to sustain the “mask” is physically and mentally draining and requires periods of solitude to recover. Likewise they avoid “needy” people, only call people when they have something to say and prefer online communication which is, of course, completely controllable.

If you are the parent of a teenage girl with who has (or who you think may have) Aspergers, it is also important to be aware that they may perceive using their sexuality as a way to be popular, which as we all know (or know now we’re older) is never a good idea and is rarely successful at making female friends.

They are not good at character judgements and so may leave themselves at risk of what Dr Attwood calls “relationship predators”, who can smell vulnerability a mile away.

So what can be done to ensure that girls affected by AS benefit from early diagnosis? Well there is some good news: Dr Attwood has developed a new set of diagnostic criteria that is currently undergoing evaluation and that, when implemented, I believe will revolutionise the field and enable more girls and young women to access the help they need.

For more information about Dr Attwood, you can find his website at http://www.tonyattwood.com.au and his book about Asperger’s and girls here: Asperger’s and Girls

Take the SEN reform awareness survey and grab a chance to win!

Debs writes...

sen reform special needs jungleOver the past 12 months, we have received a deluge of questions and queries about the SEN reforms.  From this, we can only assume that the word is not getting out to parents (or practitioners) about the changes that are coming.

As we don’t like to assume anything (the words “ass” “u” and “me” spring to mind), we wanted to find out exactly how much you do know about the  SEN reforms including the proposed Education, Health & Care Plan, the Local Offer and Personal Budgets.

We have put together a survey – SEN Reforms: How informed are you?

Please take a few minutes to let us know what you know.  There is the option to add additional comments if you wish to some of the answers, but this is not required. We just know that many of you have a lot to say!

Anyone completing the survey has an opportunity to enter into a prize draw to win one of five copies of the E-book version of Tania’s “Special Educational Needs – Getting Started with Statements“.  You can download it in most formats or PDF if you don’t have a e-reader or app.*

We will publish the results along with posts answering some of the questions.

Please share the survey with as many friends and colleagues as possible – it would be really good to get a national view.

Access the survey in your browser here or go to our Facebook page and take the survey there

 

*Make sure you enter your email address to be in with a chance to win. 

Ebook winners will be chosen at random after the survey has closed at 5pm on 12th June 2013 and notified by email and sent a single-use only download code for the ebook from Smashwords. You may, of course, donate your winning code to someone else instead of keeping it for yourself, but it is only valid for one download. The ebook may not be transferred to anyone else after download.

Making the Disabled Children’s Charter a health priority

As you are hopefully aware, the beginning of April saw a massive shake-up in the NHS and the creation of GP-led Clinical Commissioning Groups as well as Health and Wellbeing Boards.

The Health and Wellbeing Boards bring together key leaders from the local health and care system to develop a shared understanding of the health and care needs of their local communities and how to address them. They are intended to drive local integration between health, social care and wider partners and reduce health inequalities.

EDCM logoBut with the many priorities that these new bodies will have, the charities Every Disabled Child Matters and The Children’s Trust, based at Tadworth in Surrey have launched our Disabled Children’s Charter for Health and Wellbeing Boards to ensure that children with special needs, health conditions and disabilities stay at the top of the agenda.

Because these children often need to access services from across the spectrum of health and care and specialist education services, they are especially vulnerable to suffer the effects of a lack of integration and cooperation between the providers of these services. This can lead to their needs not being adequately met or their families having additional financial burdens placed upon them.

charter_coverThis is why these two fantastic charities are calling on all the England’s Health & Wellbeing boards to sign up to the following seven key pledges:

By [date within 1 year of signing the Charter] our Health and Wellbeing Board will provide evidence that:

1. We have detailed and accurate information on the disabled children and young people living in our area, and provide public information on how we plan to meet their needs.

2. We engage directly with disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board.

3. We engage directly with parent carers of disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board.

4. We set clear strategic outcomes for our partners to meet in relation to disabled children, young people and their families, monitor progress towards achieving them and hold each other to account.

5. We promote early intervention and support for smooth transitions between children and adult services for disabled children and young people.

6. We work with key partners to strengthen integration between health, social care and education services, and with services provided by wider partners.

7. We provide cohesive governance and leadership across the disabled children and young people’s agenda by linking effectively with key partners

CTrustThe Charter is accompanied by a document: Why sign the Charter? which explains the value of the Charter commitments with reference to Health and Wellbeing Board statutory duties and powers, and signposts Health and Wellbeing Boards to resources that will help them fulfil each commitment. It also includes a guide to the evidence that Health and Wellbeing Boards could provide to demonstrate that they have met the Charter commitments.

The Government recently responded to the report of the Children and Young People’s Health Outcomes Forum by releasing ‘Better Health Outcomes for Children and Young People: Our Pledge’. This set out the shared ambitions for all agencies in the new health system to improve the health outcomes of children and young people in England. This Charter is aimed at providing a tool for Health and Wellbeing Boards to deliver on these ambitions for a key group of its local population.

The EDCM & The Children’s Trust have jointly sent the Disabled Children’s Charter to every Health and Wellbeing Board in England and asked the Chair to sign it.

You can support their campaign by sending an email to your Health and Wellbeing Board Chair and urging them to sign it too. Find your local Health & Wellbeing Board here or just search for your top-level Local Authority where you live and “Health & wellbeing board”

Looking at our own HWB in Surrey, the board does not have any representatives from the voluntary/community/minority services or any parent representation. I find this something of an anomaly in these new days of transparency and co-production.

What does your local HWB board look like? Does it give you confidence that it will sign up to and can deliver the Disabled Children’s Charter?

Download the Disabled Childrens Charter for HWB

Download the “Why sign the disabled children’s charter for health and wellbeing boards” document here

Help kick-start a project to make low-cost Sensory Stories!

Tania writes:
So many of the people I meet who are involved with special needs have an absolute passion for helping children with SEN & disabilities achieve as much as they possibly can.
Joanna Grace

Joanna Grace

Joanna Grace is one such person. Joanna works as a special educational needs and disabilities consultant and is also a registered foster career who has provided short break care for a child with special needs. She supports schools in SEN/D provision and writes educational resources.

Joanna is a big believer in the use of sensory stories and, after being dismayed at their cost, has set about raising funds through Crowdfunding site, Kickstarter, to make her own, low-cost “Sensory Story Project.”
But time is limited- she only has 18 days left to reach her funding goal to make a viable project. Funding on Kickstarter is all-or-nothing — projects must reach their funding goals to receive any money at all.

Joanna says, “I fear people look at it and think that because it got such a great start it’s bound to finish strong, but it is only me working on it. I’ve taken 42 days (that was the total length of the project) off work and I’m at my desk from when I wake in the morning until when I go to sleep and the strong start is me contacting everyone I know….but I’ve used them all up now. I don’t know how I’m going to get the project the rest of the way.

She’s written for Special Needs Jungle about it and about how you can help – and get something back for yourself. At the end of the post, you can find out more about Sensory Stories.

****

Should sensory stories be available to families?

Early on in my teaching career I remember a staff meeting (I worked at a school that catered for children with severe and profound special needs) spent discussing what we would spend the literacy budget on for that year. After much agonising we decided to purchase a set of sensory stories.

Sensory stories are a great resource for children with special needs. Sensory stimulation is vital to cognitive development and for children with profound disabilities who can’t access stimulation themselves sensory stories are a fun way of providing it.

Helping to tell sensory stories

Helping to tell sensory stories

For children who struggle with sensory processing sensory stories can be an enjoyable way to encounter and get used to new stimuli. And for everyone they’re engaging – who wouldn’t want to be told a story in which you get to taste something, smell something, touch something, see something and hear something?

But when the sensory stories arrived we were disappointed, they’d been very expensive and the stories weren’t very interesting, the stimuli weren’t very stimulating. I realised that even if they had been great, the price of them would have prevented most families from being able to buy them to share at home.

I know that many families of children with special needs and disabilities struggle to find money for a whole host of things: new equipment, transport, specialist clothing, new treatments etc. It seemed wrong to me that stories which would benefit their children should be priced out of their range. It’s played on my mind ever since and in January, with the launch of Kickstarter in the UK, I saw my way to change it.

I’m currently running The Sensory Story Project on Kickstarter. The aim of the project is to create sensory stories that will be affordable to families, so that they can be bought as birthday presents, read as bedtime stories and shared between the people who are likely to be able to benefit most from them. I only have until the 20th of May to make the project a success (I’m running out of time!)

Kickstarter is a bit like sponsoring, in that backers pledge an amount of money which is only claimed if the project is a success. If the project doesn’t succeed, no money changes hands. However, unlike sponsoring, Kickstarter backers get something in return for their money: rewards!

My project has a long list of rewards to choose from: guides to sensory learning, little sensory toys, t-shirts, sensory experiences and of course sensory stories themselves. Pop across and have a look at the project and see if there is something you’d like.

SNJ has backed the project and made a pledge, and we’d love to have you as a backer too. http://www.kickstarter.com/projects/sensorystory/sensory-stories

All About Sensory Stories

What are sensory stories?

  • Sensory stories are comprised of simple sentences (not babyish, just crisp and clear). Approximately ten sentences in a story.
  • Each sentence is paired with a rich sensory stimuli which is shared as, or after, the sentence is read.
  • A rich stimulus doesn’t need to be expensive, discovering them takes insight: simple things like darkness, or the bang of a drum are strong experiences. Sometimes the way you deliver an experience can determine whether it is a rich experience or not, so for example – touching a piece of cloth isn’t a great experience, it’s the same as touching your own clothes or your bedding, it’s not very interesting, but if it was corduroy and you were encouraged to rub your fingers across the ribbing then it would become an interesting touch experience.

How can sensory stories be used to benefit individuals with special educational needs and disabilities?

  • Sensory stories were originally developed for use with individuals with profound and multiple learning disabilities (PMLD). Individuals with PMLD may not be able to access sensory stimulation for themselves. It is easy to overlook just how much stimulation an able bodied child accesses themselves simply by reaching out to things or turning their head to notice things. Sensory stimulation is needed in order to lay down neural pathways in the brain. If children can’t access it for themselves it is important that we provide it. Beyond the importance of stimulation sensory stories can be used to encourage outward engagement with people and objects, to develop communication and to encourage social connections.
  • Children who experience sensory processing difficulties as a part of their condition, (as often co-occur in conditions such as Autism and ADHD) can be helped to encounter sensory stimuli and learn how to regulate and modulate their reaction to these stimuli through using sensory stories. For a child with sensory processing difficulties a day-to-day sensory experience may be overwhelming, as a high pitch noise or fingers down a chalk board might be to someone else. Parents of children with sensory processing difficulties report that with practice their children can learn how to cope with difficult stimuli. Sensory stories can also be used to introduce new stimuli in a fun and safe way, so that when they are encountered in life they’re not so alarming.
  • Sensory stories can be used to encourage engagement with literacy and communication, in this way they can benefit children with conditions not yet mentioned and also children without special needs, and even adults! The more senses you utilise whilst learning the more chance you stand of remembering something (I expect you still remember songs you sang at school, I bet there are certain smells that take you back to times in your childhood) I’ve used sensory stories in universities and at conferences and I’m willing to bet that the people I spoke to still remember them!

Please back The Sensory Story Project so that more children can enjoy these stories.

For more information about the stories please watch the short film at The Sensory Story Project and read the project description. You can also visit http://jo.element42.org to see other articles about sensory stories and to contact Jo.

To find out how Jo is getting on running the project you can follow her on twitter at @Jo3Grace

Our son’s rare disease sparked a search for answers- and support

Tania writes:

I am often contacted by desperate parents searching for help with finding the special needs solutions for their children.

It’s something that Helen never imagined herself having to do. She had never had to worry about SEN support for her son Jake, until he became a teenager and his health began to deteriorate.

He has since been diagnosed with a rare disease, Kleine Levin Syndrome. From having a healthy 13 year old, Helen found herself searching for answers, support and a way through the jungle of health, social care and special needs services.

Here is her story….

****

We never thought our world would be turned upside and we would suddenly be fighting for our son’s right to his education.  Our son Jake, was a healthy, happy 13 year old with predicted A grades at GCSE when he got sick.

He got sick slowly, in an unexpected way, it was so difficult to explain – but his behaviour was no longer normal.

kleineHe slept for a longer periods of time, he fell asleep in shopping centres, on woodland walks in the rain, every time we got in the car – and at the same time he lost his confidence, he did not know his address, what day it was, some days he could barely speak – yet nothing had happened to him, he had not had an accident or even a bad virus – but suddenly he was not the son we use to know. It was so much more than sleeping, but sleeping was the most obvious symptom and the easiest to talk about.

We were being told, don’t worry he is just a teenager – teenagers like to have lie-ins, sleep all day and barely grunt at you, and they can change into teenagers overnight! But teenagers still leave the house, can walk for two miles without having to sit down and sleep, teenagers can be woken and it is not like they are in a comatose state with pounding headaches and having hallucinations when awake, and although teenagers might choose to ignore you, our son just didn’t hear us some times.

We saw doctors, we saw neurologists, we visited CAMHS, we made our own private referral to London and we had the same response – it is very interesting. Who wants to be interesting? We wanted to know when our son would be back.

We noticed that despite seeing all these doctors and reading the reports about Jake’s condition, they were missing the point, they were not seeing everything we were seeing; the points we felt were key to his condition.

We wrote to our GP and our neurologist and told them in a detailed letter what they were missing – it was a hard letter to write, to describe everything our son could no longer do – but this letter struck gold, it was the best thing we ever did up to that point.

A week later we had an appointment with a paediatrician who, from our description and the tests he had had so far, suggested Jake  may have the rare neurological condition of Kleine Levin Syndrome.

We had never heard of KLS – we read up on it, Googled for information and learned that it was episodic and that the episode would end, but may repeat. Shortly after that, Jake was back, it was nearly Christmas and his last memory was the summer holiday. For a while, he was the bright young person who we had before – until it happened again.

It has happened a lot since. The episodes have been a variety of length from one to 118 days, with gaps in between episodes from 1 to 33 days – KLS affects Jake severely.

We went from 100% attendance to 30% at school and we realised that when unwell, Jake was cognitively unable to learn, he could barely write his name. Yet when he was well, he was a bright, able student who had just missed loads, with topics moving on at school so rapidly he could barely catch up.

In Year 9, we focused on just his core subjects, dropped the ones he was not continuing with and school agreed to half-days to reduce the stress, and for him to do catch-up work in the mornings. We muddled through, thinking it was all okay.

We’re in Year 10 now and KLS continues. Jake is still missing huge chunks of time and we think he is doing OK. But when his  first exams arrived,  Jake panicked because he realised he has not been taught what he needs to know to succeed and that to catch up involves him copying from books, working independently but on some days doing nothing as no one knows what work to give him because he has missed so much. We also asked the school to put in writing what would happen if he was ill for exams and missed them.

In all this time we have not been chased for school attendance as they have marked him as ill and school have looked to us for guidance – but we don’t know what the options are.

After having the exams and then having five weeks off for another episode, Jake returned to school to watch a video all day as they had no work planned and we saw “red” –  there has to be more help for him.

We discovered the Local Authority Inclusion Services, who might be able to help Jake have catch up education. They had not been told about us and could do nothing without medical records and a referral.

We sent them all his notes and they contacted school. At the same time we began researching education in more detail and although we had an IEP, we had no real support or action, so after broaching the idea with my paediatrician, she agreed that applying for Statutory Assessment might be a good idea.

We also approached local colleges to find out about his post-16 options and they had been in touch with school… and we found SPecial Needs Jungle and bought the book.

Two weeks after we got to this point, we were in shock; the Maths teacher rang us at home to ask if he can put Jake into exams early, so he has a chance to sit his GCSE’s twice, and he has had some 1:1 catch up in Maths.

His Science teachers wrote to us and invited him to attend a ‘catch up’ assessment day in the Easter holidays if he was well enough and the English team have delivered a copy of his curriculum, the books he needs and some research guides to my door at 4.45pm in the evening. We have also had our first meeting with our head teacher (we have dealt with the head of year and SEN department to this point), who is looking into offering us five hours of 1:1 support a week when Jake is well, looking at reducing his time-table further and offering us easier GCSE options.

All because suddenly we have asked for more support – we are still applying for a Statuary Assessment – we may only have four terms left, but Jake deserves the opportunity to achieve the best he can, and we know school were in the wrong, as otherwise the arrival of the Statuary Assessment notification would not have had the reaction it has had.

We have done a detailed report for the Local Authority, the form we received allowed for just a small paragraph, instead we have sent a lot of evidence of Jake’s condition and we can only hope they read it and  support us.

Kleine Levin Syndrome is hard to understand – if affects only around 1000 people world wide, most patients go undiagnosed for 7 years, and most grow out of the condition within 20 years, and go on to live a normal life, but in the mean time are robbed of their teens and twenties – have little or no qualifications and struggle to be understood…. we are hoping our case will be different.  To follow our story – then visit our parents guide to KLS – www.kleineLevinSyndrome.co.uk

Here is our video about out story:

A personal take on depression: Would you recognise it in your child?

Tania writes

It’s Depression Awareness Week, although with the state of the economy and the weather, it wouldn’t surprise me if most of the country was painfully aware of feeling a bit in the dumps.

Ah, see what I did there? Of course, there’s a difference to being a bit blue and being clinically depressed, and for parents of young adults, teenagers and even younger children, it is very important to know the difference.

For example, what is the difference between your child just having a bad day, or your teen often being irritable or secretive because that’s all part of hormones and growing up, and the onset of something more intractable that will require careful attention and treatment?

Granddad

Granddad

I was diagnosed with clinical depression at the age of 16, although I had always been an anxious child due to an often uncertain home-life. For me, I can trace the true onset of major depression back to the death of my beloved grandfather, who suffered an unexpected and fatal heart attack in front of me when I was just 12.

The adults were allowed to grieve; I was told to ‘put it behind me’, although how I was expected to have the skills to get over the shocking death of the only male constant in my life is beyond me. My, now late, mother, many years later, told me that, in retrospect, she regretted the way she had handled it, but in fairness, it was 1980, and things were different then.

That evening, I had to call the ambulance for my gran and explain what had happened. I was staying with them over February half-term, while my sister was at our Dad’s house.

The trauma of it still revisits me though, even now after adult therapy. It’s still raw, 33 years later. It makes you less able to cope with adversity in a healthy way. The detail is still etched on my mind. It changed me, irrevocably.

Today, I’m great in a crisis, but I pay for it afterwards – a delayed reaction. I’m ever-vigilant, the fight or flight response never far from the surface. It’s not an easy way to live.

Some Shocking Statistics*

  • 1 in 10 children and young people aged 5 – 16 suffer from a diagnosable mental health disorder – that is around three children in every class.
  • Between 1 in every 12 and 1 in 15 children and young people deliberately self-harm  and around 25,000 are admitted to hospital every year due to the severity of their injuries.
  • More than half of all adults with mental health problems were diagnosed in childhood. Less than half were treated appropriately at the time.

Depression can often be part of illness

Anxiety and depression are also features of Ehlers Danlos Syndrome, with which both Son2 and I have now been diagnosed, so I was predisposed, in any case.

Son2 hasn’t had any trauma, but with EDS and Asperger’s it was almost a dead-on cert that he would be affected. He has acute anxiety problems, but because of my experiences, I knew what to look for and he is receiving treatment. It won’t ‘fix’ him, but it may help give him coping skills.

Son1, who also has ASD, has anxiety issues too. On the face of it, he looks like he’s coping well with help from his specialist school, but I know it’s still there, waiting to trip him up and so parental vigilance is needed.

Luckily for both of them, their father is the ultimate laid-back Dad (or in their speak, “soft as a pillow”), so they have a great male role model and a close-knit family. Even that, I know, is not always enough.

This is the first time I’ve ever written about my own depression and it isn’t easy. I’ve been embarrassed, not wanting to show weakness. I can barely utter the words ‘mental illness’ in relation to myself. But just recently, since I’ve been ill, I’ve had to do a lot of reassessing. I expect I have felt the same way teenagers feel when they don’t want to admit they are depressed or that there is anything bothering them at all.

Just because your child or young person hasn’t suffered a huge trauma such as family break-up or bereavement does not mean they are not at risk of mental illness. Lack of confidence, being bullied, poor body image, difficulties at school can all be factors.

And that’s not even taking into account any special needs they may have such as Asperger’s, dyslexia or other learning problems that can affect self-esteem. Or they may just be genetically predisposed to it, especially if you or their other parent are affected.

young minds logoAs a parent, you need to know what you’re looking for and Young Minds, the mental health charity for young people, have lots of resources on their site for parents and for young people themselves. Take a look, even if you don’t think your child has a problem. Parents are often the last to know so knowledge is power. There is also a section for teachers on recognising and helping young people with mental health problems.

The usual NHS route for young people with mental health problems is via your GP and then to CAMHS, the Child and Adolescent Mental Health Service, but as you can see from the comments in this post that is a very variable service, depending on where you live. I really would advise checking out the Young Minds site as well.

I shared just some of my story to help raise awareness that depression can happen to anyone, at any age. But when it happens to a young person, without a vigilant adult, their problems can spiral out of control catastrophically. Self-harm is becoming more common, anorexia and other eating disorders are almost certain to include depression and far too many families are torn apart by the loss of a young person to suicide.

Teenagers are notoriously poor communicators; they are working on growing up and away, if they are able. Be watchful, be informed, keep talking. If you can’t do this without arguments, try this book, the 1-2-3 Magic for surviving your teenagers. It will show you how to begin to see them as young adults in their own right, and no longer just your little ones.

If you’d like to share your experiences, resources, tips or knowledge I’d love to hear them!

* Source: Young Minds

Raising awareness of children’s conditions so rare, they’re undiagnosed.

Tania writes:

Recently, when Debs & I went to Westminster, we met Renata Blower, a Mum who blogs about her life as the parent of a child with an undiagnosed rare disease.

RenataI was impressed by Renata immediately, as she has the tenacity, courage and drive to make a difference that I see in those who find themselves negotiating a very different parenting journey to the one that they originally envisaged.

Renata’s son, and to a lesser extent her other two children, have such a rare condition that it has no known diagnosis. She is working with SWAN UK (Syndrome Without A Name), a project of The Genetic Alliance UK to highlight today’s first ever Undiagnosed Children’s Awareness Day. Below is some of Renata’s story and if you’d like to read her blog in more detail, I will add the link at the end.

RareConnectTo coincide with Undiagnosed Children’s Awareness Day, a new community forum is being launched today on RareConnect, the very excellent platform hosted by EURORDIS and NORD Rare Diseases organisations that brings together people from around the world with specific uncommon conditions to share knowledge, support and experiences.

In this, their 40th Community (congrats!) RareConnect have partnered with SWAN UK, SWAN USA, and the Wilhelm Foundation to create a community especially for undiagnosed brain disorders. This community will be a place for caregivers of children with undiagnosed brain diseases a place to connect and share experiences across the five main European languages.

There are two types of Undiagnosed Brain Diseases. The first is ‘Stagnant’ where children are very sick from a very young age often at birth. They have severe congenital dysfunctions in the development of the brain. The other, ‘Progressive’ is where children are usually symptom-free at birth. Some of them have symptoms that are not related to a severe brain disease. At some point in their childhood, they start to exhibit different types of symptoms that worsen and often progress into a very complex neurological profile.

These Diseases are often fatal. To read stories of families affected by undiagnosed brain diseases, visit: https://www.rareconnect.org/en/community/undiagnosed-brain-diseases
For any parent who has no easy way to describe their child’s condition, never mind a proven pathway for treatment, finding others to share their frustrations and difficulties with is vitally important.
Here now, is an extract from Renata’s story.
****
On Saturday 13th April 2013 I will be celebrating Undiagnosed Children’s Awareness Day, probably at home, perhaps with an acquired bit of Easter chocolate, but undoubtedly with a huge sense of pride.

UCAD-widget-logo1I guess I don’t talk that much about Dominic (and of course Elliot and Lilia as we know they have a milder form) not having a diagnosis. I accepted a long time ago that finding an answer to why this had happened and what it meant we might face in the future might never happen.

Although the unknown is one of the hardest things an information junkie like me could possibly be asked to embrace, it is probably what has saved me. It is only when a new test is suggested that my compulsion to throw myself into hours of late night research starts again. Thankfully this doesn’t happen that often any more. I say thankfully because it’s exhausting, physically and emotionally, to be endlessly poised to find out whether your child is about to be handed a death sentence or a not, and geneticists aren’t doctors who are in a rush, so you can be driven mad by worry but then have to wait for a year for a follow-up appointment to find out the results of the tests. If the test results don’t go missing somewhere along the line that is.

Living in limbo with this level of anxiety about the unknown is disabling in itself, planning for a future you don’t know whether you’ll ever have leaves you scared to makes plans but racked with guilt if you don’t. At some point you have to make a decision to let it go but accept that it will lurk like a dark shadow over ever illness, every appointment, every form you fill in and every conversation about your child’s (unknown) future.

Tests to try and diagnose Dominic are few and far between now quite simply because we’ve done them all. The conclusion, if you look at the results printed in his notes, is that Dominic is normal. Ahh, I love that word as it holds so much importance and yet is so often meaningless. Dominic’s version of normal, the ‘there is nothing wrong’ test results, are in conflict with the five volumes of Great Ormond Street Hospital notes and the child that is tube fed, having growth, blood sugar and thyroid problems (linked to a small pituitary), unable to stand or walk, hypermobile and tires incredibly quickly (for a full list have a look here).

In fact the only test that has shown any issue is an EMG (electromyography) which tests the muscles and nerves to see if they are working properly. We found that his muscles were normal and his nerves were normal, however they did eventually discover that the communication between nerve and muscle (at the neuromuscular junction) wasn’t working as it should (after disbelief lead them to repeat the test 5 times). Of course all the testing for the conditions that are known to affect the neuromuscular junction came back… you guessed it…normal, and a muscle biopsy (his second) came back… yup… normal again! At this point most medical professionals shrug, or scratch their heads before giving up trying to figure it out… so feel free to follow suit.

This has been going on for 6 and a half years. If I was still on tenterhooks for a diagnosis after all this time I would be sat in the corner twitching… well far more than I am currently. Our only hope for a diagnosis is the Diagnosing Developmental Disorders study, which is trying to create an online catalogue of genetic changes and what problems they cause for children. So the answer we get might get would be little more than a string of numbers and letters locating where the genetic code has hiccupped. Even so it would answer the question ‘why’ Dominic has the difficulties he does, even if it can’t tell us much more about what to plan for in the future– at the moment.

I say at the moment, because science never stands still and advances in genetics happen almost weekly it seems. I find it hugely exciting to be part of something that I truly believe will change the way complex children are diagnosed and something that will help us begin to understand the code that makes us who we are.

You can read this post from Renata in its entirety, and please do, at this link  

Below are some more links you might like (of course you will!)

Renata Blower on Twitter  | Just Bring The Chocolate on Facebook | SWAN UK on Twitter | Swan UK on FaceBook

You can find out about the other 39 RareConnect Communities hereRareConnect on FaceBook | RareConnect on Twitter

Read more posts from parents of Undiagnosed Children at Renata’s Blog Link Up

Parent Carer Forums

Debs writes….

Tania and I are both co-chairs of Parent Carer Forums and we do mention them quite a lot.

Tania Co-Chairs Family Voice Surrey with the lovely Angela.  Angela shared her experience of meeting Mr T with us on Valentine’s Day.

I KentPEPsLogo92dpiRGB_web2Co-Chair Kent PEPs with the fab Sarah, who knows when to reign me in and also is one of the most organised people I know.  Sarah will be the person who has printed everything off before our meeting and the one who replies to emails quickly.

What is a Parent Carer Forum?

A parent carer forum is a group made up of parents and carers of disabled children who work with local authorities, education, health services and other providers to make sure the services they plan and deliver really meet the needs of disabled children and families.

The forum represents the views of parents in the local area but does not advocate for individual families. There is usually a steering group of parents who lead this and listen to the views of other parents in the local area to make sure they know what is important to them. Forums are keen to make contact with as many parent carers as possible.

In England there are now forums in almost all local areas.

Who can join a parent carer forum?

Forums are ‘pan disability’ which means that parents or carers of a child with any type of additional need or disability are welcome to join – as they are likely to need to access services and support. Joining your forum does not mean you have to commit lots of time. In most forums you can join and receive information, and you then decide if you want to get more involved at your own pace.

Taken from Contact a Family website 

We are all part of a National Network of Parent Carer Forums (NNPCF) which is  a network of parent carer forums  across England. It too has a steering group made up of parent carer representatives from across England.  NNPCF make sure that parent carer forums are aware of what is happening nationally, and that the voice of parent carers is fed from local parent carer forums into national developments, working with the Department for Education, the Department of Health, and other partners.

Contact a Family support the work of the National Network of Parent Carer forums and offer us relevant training and a variety of conferences and regional meetings.

If you would like to find out if you have a local Parent Carer Forum, then we have added a page to our site with their details for you.

If you are a member of a Parent Carer Forum steering group, we also have a group on Facebook which you are welcome to join.

Gcontactetting involved with your local Parent Carer Forum is such a great way to have a say and really help to influence decisions made about services in your area.  Most of the forums are always looking for new members to participate so get in touch.

Pathological Demand Avoidance group bids for charity status

debroarke

Deborah Rourke with Tania

The most popular post on Special Needs Jungle continues to be about the condition Pathological Demand Avoidance

Last week I met Deborah Rourke, who wrote the post – it turns out she lives close to me so I hope we will see a lot more of each other.

There is to be a PDA Awareness Day on May 15th, and Deborah writes here about the group’s plans.

****

Pathological Demand Avoidance syndrome is increasingly being recognised as part of the autistic spectrum. One group instrumental in bringing about this change is the PDA Contact Group,  a supportive website filled with contacts and information.

It has a forum where parents, carers and siblings can ask questions or simply vent their concerns. Our membership numbers over 2000 now and the forum is busier than ever with the number of enquiries for support and information is increasing.

LOGO1It is fast becoming clear that the group must consider the future and start thinking ahead. Awareness and recognition of PDA is greater than ever before and it is perhaps time for the group to develop its role in response to this change in status.
PDA may not have made it into everyone’s vocabulary, but it is on the agenda for being taken seriously by a wider range of professionals.

Our immediate aims are for the PDA contact group to become a registered charity and we are currently campaigning for 15th May every year to become PDA Awareness Day.

The National Autistic Society has put on several informative PDA conferences across the country and we feel workshops and seminars as well as participating at wonderful events such as The Autism Show,at Excel London 14/15 June is the way forward.

With help from government grants and kind donations, our future aims are to ensure accessible information is available in every GP surgery, play-centres, nurseries, schools, to further help raise PDA awareness and provide vital information across the board.

We are very excited and overwhelmed by all the generous offers of help, support, donations; it will provide us with the much needed resources to begin to provide some of the above services.

Please do not hesitate to explore our website: www.pdacontact.org.uk (a new one is on its way, to better manage the increase in demand).

You can now also find us on twitter: http://twitter.com/pdacontactgroup

Other recommended PDA information sites: http://advocate4pda.wordpress.com

http://www.cafamily.org.uk/medical-information/conditions/p/pathological-demand-avoidance-syndrome/
Supportive Facebook group: http://www.facebook.com/groups/7165353156/
National Autistic Society: http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

Autism Acceptance? It’s so much more than that…

Tania writes:

It’s Autism Awareness/Acceptance Day, Month, whatever… lots will be written today about what autism is and what it isn’t.

No one expects to have a child with an ASD/ASC, whatever they’re calling it this year. Once you have the diagnosis, it’s like entering a parallel universe of impenetrable mazes with multiple dead-ends, where people speak in strange acronyms and expect you to understand what they’re talking about.

You can get lost in the battle to secure services, support, suitable education and the funding thereof. As your child or children (in my case) grow, you will encounter different challenges such as transition to adulthood, training, independence.

If your child is five or six, you’ve probably not even thought this far ahead. This is just as well; it would be too much to cope with. We are now at this stage: my boys are 15 and 13.5 and both have different levels of need and what one may manage, the other may not.

superbabeOne thing we have learned – just when you think you’re doing okay, something comes along to trip you up and you have to take stock and look for new solutions. You are constantly operating at your maximum tolerance, so that when something comes along that you didn’t expect, it is easy to experience meltdown or even breakdown.

People on the outside often do not understand this and may judge you accordingly. This says more about them than you.

While working for better understanding, treatment and life chances for people with autism or any other condition is a necessary and constant crusade, for those families affected, it is much more personal. It can often be just as big a battle for self-acceptance and coming to terms with a diagnosis and that this is the way life now is.

For me, recent health issues have meant I have had to accept I am not superwoman and reassess my goals. After five years of not claiming school transport, I have now had to admit my limits and ask for a taxi for them. It’s a compromise; I won’t ask for both ways because  they need the security of knowing if they’ve had a bad day, it’s over as soon as they’re in the car with me.

Universal Truths

But whatever your personal circumstances, I believe there are universal truths, and not, for that matter, just for parents of children with autism, but for any parent of a child with a disability, medical condition or rare disease (named or not), so you can just substitute the word ‘autism’ for any of those.

We’ve been doing this a while now, so I feel pretty qualified to offer the following, based on my own experiences:

1. If you have never cared for a child with autism, you don’t know what it is like. Even if the parent seems fine and happy, you should never make assumptions of what it’s like being in their shoes.

2. It’s different for every family affected. For example, if you have a child with high functioning Asperger’s, it is likely to be a very different experience to life as the parent of a non-verbal, severely autistic child. This is even more true if your child has medical needs as well.

3. It’s hard work – mentally and physically, wherever they are on the spectrum. Some people cope with certain aspects better than others. Sometimes you will feel like you’ve been run over by a steamroller but you will eventually peel yourself off the floor like a flattened cartoon character, because you have to.

4. Stress and worry are likely to be your constant companions; maybe even depression. What do you expect? You’re only human. It’s okay to admit it and to seek help for yourself. In fact, it’s preferable than pretending everything is fine.

5. You will be judged. There will always be people who think they can parent your child better than you can. You will learn not to care.

6. You are likely to end up with more friends who have children with special needs than those who don’t.

7. You will feel like running away. Or worse. You almost certainly won’t end up doing either.

8. You will learn to smile when people tell you they don’t know how you cope, or that you do fantastically well. Inside you may well think, “If you only knew…” You may actually want to punch them, but it’s probably better to resist.

9. You will grieve at some level for the life as a parent you had envisaged before you actually were a parent. Then you will get over it and get on it with. After all, what’s the alternative? But at odd times, this grief will revisit you. This is normal.

10. You will read studies that tell you autism is caused by any number of things, most of which you will feel, at some point, are your fault. None of them are. Autism probably has lots of different triggers which result in similar symptoms. Read the studies, or don’t, they won’t change your reality.

All that matters is that you try to be the best you that you can on any given day. Some days will be good, some days (sometimes whole weeks) are better forgotten. Others can accept that or not; they can choose to be your friend and love you without judgement or not. You have no control over that.

Accepting yourself for being flawed and imperfect can be much harder than accepting your child’s diagnosis.

It’s what makes us human.

Highlighting your SEN Beacons of Good Practice

Debs writes….

beaconWhen we visited Mr T last week, along with other mum bloggers, we discussed the excellent help that several of us had experienced (as well as those aspects of the system which had failed us).  We then talked about  how this information could be developed into “Beacons of Good Practice” that the Government could highlight as examples to other areas who may not be doing so well.

Who you would nominate in your area?  I am lucky because I would be able to point out a few “Beacons” with ease.

The first one that springs to mind is our “VI pre-school worker”, an equivalent of Portage for VI children in Kent.  When your child is born with a disability or SEN, you often don’t know quite what to do for the best, where to go for advice or information, what to expect for your child with educational provision or even their mobility and independence.  As J was born with a specific diagnosis, we didn’t have to look for the help we would need, it just arrived – in the form of Peggy, our VI pre-school worker.  Our Specialist Teaching Service in Kent offers a service specific to children with VI and when they are notified of such a child, they make the contact with the family so the family doesn’t have to start looking for them.  How much easier this made our life.

Peggy was our pre-school worker or as we liked to call her “the lady who brings the fun” and she made it all so much easier for us.  She also allowed us to “enjoy” our son.  So often, fighting to find the help you need makes your child a burden and you become his carer, secretary and advocate.  Having Peggy took a lot of that away and we got to enjoy J’s early years immensely

I can still remember the issue of encouraging J to walk.  With most young children, you hold out your arms and give them big smiles and even demonstrate what you want; obviously with J this wasn’t an option.  However, I also remember not worrying about this because I knew I could ask Peggy.  She was great, she had loads of ideas, lots of suggestions and more importantly, was able to advise that it would take patience from all of us. We worked tirelessly for months and then J rewarded us by taking his first steps independently towards Peggy during one of her visits; I can still remember how loudly we all cheered and how pleased he was with himself.  Peggy shared with us that this was a first for her – to see one of the children she supported take their first steps – and I know that this is recorded on her visit report in his file, so it made me feel like we had given something back to her in return.

jamieOne of the most rewarding things was that Peggy always involved J’s twin sister when she visited.  When we were trying to work on J’s touch and sensitivity, Peggy kindly brought along warm spaghetti, rice pudding and jelly for J to play with.  We sat there with the nice separate pots but J was not interested so Peggy suggested that R play with them – at which point my beautiful daughter promptly mixed them all together and then threw them in the air.  Our faces were a picture.  The “sketti mess”, as it became known, landed on J’s head and slid down his face.  We watched in horror, waiting for the scream but instead we got the deepest, most infectious belly-laugh ever.  J then proceeded to help his sister throw the “sketti mess” around the room whilst shouting out “sketti mess” (and we did not have laminate flooring or a leather sofa) but his fear of touch was addressed!  Making R part of the visit and activity was just one of Peggy’s talents, she totally understood that J was a part of our family and we all needed to be involved with him and his development for it to work well.

Peggy was not just our VI pre-school worker, she was also our key worker – even though that was not her specific job title.  She knew the world of VI inside out and happily shared the information with us.  What really helped was that she gave us the information when we needed it.  We were not inundated with leaflets, books and advice enmasse (which is often the case), we were provided with the relevant information at the relevant time.  Every family is different and some of us like to think ahead and some like to live in the moment so, having a key worker (or a practitioner who knows the benefits of key working) ensures that the family gets the most appropriate person-centred service.

Our Specialist Teaching Service – VI provided exactly what a family in our position needed.  We had support, advice, and information  available, when we needed it.  It provided us with someone who helped us when it came to nursery and someone who knew the local schools and actively played a role in J’s transition.  The success of this Good Practice is easy to see – spend an hour with J and meet this confident, outgoing little boy who is keeping up (and sometimes ahead) of his sighted peers.  He is a bit cheeky and a tad outspoken – but then again, he is my son and I wouldn’t have him any other way.  If you read my post about J’s diagnosis, you will see how much life has changed for us since we first heard the news.  Without the Specialist Teaching Service – VI, I doubt we would be in the same place as we are now.

So who would be on your list of Good Practice?  In Kent PEPs, we recently launched Good Practice Awards so parents could tell us when they were happy with a service, maybe you have something similar in your area?

Over the next month or so, we will share with you our other Beacons of Good Practice but we want to hear from you – what works well in your area?  What service made a difference?

Special Needs Jungle meet SEN Minister, Edward Timpson

So the big day arrived and of course, it was raining. Tania and I headed into London, to the Department for Education, to meet the Education Minister in charge of the SEN reforms, Ed Timpson.

Unfortunately, there was ‘the wrong kind of ice’ on the conductor rail and  so I sat at Waterloo for half an hour while Tania updated, “At Wimbledon and moving”, “Now at Clapham”, all the time watching the clock.

Eventually we arrived, and the lovely Jon arrived to escort us up to Mr T’s office.  While we waited for the Minister to finish another meeting, Jon introduced us to some mums who blog about their own special needs children and who’d come along via Tots100 – one all the way from South Wales and another from up in Manchester. Hats off to them for making the effort!

We received a very warm welcome from Mr T, who didn’t look at all daunted by the prospect of meeting several passionate SEN mums.  Then again, perhaps he missed his vocation in life and an Oscar could have been his for the taking if he had chosen a different career route.

snj-ET

Debs (left), Mr Timpson, Tania

The mums gathered had children with varying difficulties and were at different stages of the process of trying to secure support, but the main thrust was of the outrage and distress parents felt when they were forced to fight for what their disabled children needed.

The Minster asked us to share with him one thing we would change or we considered an issue.

The one thing that was very noticeable was the amount of nodding heads from all of us as each person relayed their concerns or suggestions – it was very clear that as parents, we all know our children and we’ve all had similar experiences and issues.  The solutions we suggested were all similar too.

I felt a genuine sadness that the bad bits – the bits  you think only happen to you or in your area – were  happening to many others across the whole of the country

Parents often feel they are not an integral part of any decisions made about their child – often they are talked at, rather than talked to.  The whole process can become, and often is,  adversarial, with parents feeling that it is often just a case of the LA showing us who is in charge.  As parents we want to engage and play a role in our child’s life but legislation alone won’t make this happen.

Aside from Tania & myself who, as you know, are involved in our own areas developing plans for SEN reform as part of the pathfinder, one mum was taking part with her family in the trials themselves (and we’re looking forward to hearing more about it from her soon) while others were less knowledgeable about the stage the reforms are at. I suspect that may soon change!

It was telling that most had felt a lack of support and signposting but there were several mums who could point to excellent help they had had and we think this could be developed into “Beacons of Good Practice” that the government could highlight as examples to other areas who may not be doing so well. What a great incentive, to have your service win such an accolade!

Tania & I raised our concerns about the massive task of culture change needed to drive forward the Children and Families Bill and to ensure it meets the outcomes it was initially designed to produce, but more positively, we also tried to offer some solutions to that and will be sharing our ideas and contacts.

Key working (and a named key worker) were the one thing we all agreed with.  Parents want to have the confidence that practitioners within different agencies (and sometimes practitioners within the same team) will actually speak to each other. As that doesn’t happen at present and there are not clear signs that it will be happening anytime in the near future, there was also the recognition that parents need someone who is just there to help them (independent advocates), someone who knows the system and the resources available, someone who can be your guide through the local offer.

charlie

Charlie Mead

Another point your intrepid SNJ advocates raised was the huge potential for “nurture groups” to create a backbone of support for vulnerable and troubled children within schools.  Children sometimes present with what appears to be an SEN, but this can be exacerbated by unmet emotional or social needs.

When given the right support through this type of group, can then integrate back into universal services.  Tania talked about the great work that child psychologist, Charlie Mead, has done with the use of nurture groups in a previous post – Special Needs Jungle in the Telegraph – what I really think and we hope that Charlie will be able to share his experience with Mr Timpson, who was extremely interested in the concept. If commitment and funding for nurture groups can be mandated or at least added to the Code of Practice, this could be a real way to help families and children succeed.

Generally, the meeting was very positive.  Mr T did appear to listen to what we were saying and he was very keen to stress that the Code of Practice was an “indicative” draft, which will be informed by the findings from the pathfinders and SEND pathfinder partners.

desperatedanHowever, as parents who don’t often get to bend the ear of “The Man That Can”, this was our chance to indicate to Mr T and his trusty team that the indicative draft is at present rougher than Desperate Dan’s chin.

We will be working with other parents and practitioners to try to influence plugging the gaps and, in fact, Tania is attending a Code of Practice workshop next week.

We were given the contact details for the Minister’s team and asked to let him know of anything that was working well and were all told to “keep blogging”.

We can promise him, and everyone else, that we most certainly will.

Rough Draft SEN Code of Practice published

SEN Reform imageLate yesterday, the DfE published the “Indicative draft Code of Practice” as a “work in progress” to go with the SEN/D provisions in the Children & families bill, now going through parliament.

The DfE describe the Code of Practice thus:

The SEN Code of Practice is statutory guidance that provides practical advice on how to carry out statutory duties to identify, assess and make provision for children and young people’s SEN as set out in the Children and Families Bill (currently before Parliament).

The Code also sets out how legislation and regulations concerning children and young people with disabilities works alongside this.

The DfE says a subsequent draft for formal consultation will be produced later in 2013. After this, a final draft will undergo Parliamentary scrutiny in time for it to come into force alongside the Children and Families legislation.

This Indicative CoP is a sort of rough draft devised from early pathfinder learning and from the consultation that took place when the earlier versions of the C&F bill were published.

Additionally it published ‘Illustrative Regulations” and an “SEN Evidence Pack” pulling together the information that has informed the Bill.

It just isn’t possible to write an in-depth analysis of an 86 page document and two additional publications here in less than 24 hours. We’ll be bringing you that in the course of the next few weeks.

Debs and I will be busy reading over the weekend, as on Monday, we’ve been invited to meet the Minister, Ed Timpson. I also have a few other great ideas to mention then as well. (I bet he can hardly wait)

So far, I’ve got through more than half the Indicative CoP and so here are some initial points:

References to statutory duties 

The text uses the word MUST to refer to a statutory requirement and SHOULD to refer to guidance which is a non-statutory requirement.

It emphasises the need for a fully engaged Health system through Clinical Commissioning Groups and other health bodies.

Clinical Commissioning Groups (CCGs) and, where responsible for children and young people with SEN, the NHS Commissioning Board, will be full partners in the new arrangements for securing the provision to meet these needs.

This is obviously a great idea, but, judging from what I’m reading in the press about the difficulties CCGs are facing before they’ve even fully launched, one can’t help but feel…uneasy at best.

Parental Involvement

Parents/carers figure heavily in the document, particularly in relation to helping for develop services at a strategic level and on a family level about schools fully involving parents when it comes to how their child will be helped.

Some teachers and indeed, many parents, will find this quite difficult for many reasons and this is why culture change on both sides is vital.

The CoP document talks about Parent-Carer forums and the support and remuneration they need to be fully engaged, although it does not detail what this should be.

Schools and colleges need to ensure that they fully engage parents and young people with SEN when drawing up policies that affect them. Pupil forums should always ensure that there is representation from pupils with SEN. Schools and colleges should also take steps to ensure that parents and young people are actively supported in contributing to assessment, planning and review processes.

The knowledge and understanding that parents have about their child is key information that can help teachers and others to meet their child’s needs. Enabling parents to share their knowledge and engage in positive discussion instils confidence that their contribution is valued and acknowledged.

2.2: Person-centred planning 

A key approach that ensures that parents and carers, children and young people are actively placed at the heart of the system is person centred planning. A person centred approach to planning means that planning should start with the individual (not with services), and take account of their wishes and aspirations, and the support they need to be included and involved in their community. It aims to empower parents, children and young people so that they have more control over assessment and decision-making processes. It enables continual listening and learning, focusing on what is important to someone now and in the future, and acting on this in partnership with their family and their friends.

The integrated arrangements for commissioning services for children and young people with SEN must promote the involvement of children and young people, and their parents, carers and representatives in decisions which relate to their care, and in the development and review of a local offer of services, derived from commissioning plans which reflect the strategic participation of local young people and their families. CCGs will want to engage with Healthwatch organisations, patient representative groups, Parent-Carer forums and other local voluntary organisations and community groups to do this.

Really, will they? As far as I can see, health/patient/parent engagement is at a very nascent stage and in many areas, embryonic or not even a twinkle in the eye.

Let’s be hopeful though. If it’s mandated, they’ll have to at least make an effort. Won’t they?

3.2 Keeping provision under review 

Joint commissioning is an on-going process and local authorities and their partner CCGs must keep the arrangements under review.  Local authorities also have a duty to keep under review the special educational provision and social care provision in their areas for children and young people who have SEN .

This will be a full time job for someone. In Surrey, an SEN Quality Assurance officer has been appointed already and so presumably this will be part of the role’s remit.

Two new Health Liaison Posts?

The document talks “Designated Medical Officer for SEN”.  This person might, apparently, be an employee of an organisation such as a CCG or NHS Trust. They will have responsibility for co-ordinating the role of the health body in statutory assessment and MUST work strategically across health, social care and local government.

They must… have good relations with local commissioners who are partners in the joint arrangements for SEN, working to ensure effectiveness in co-operation, and encouraging and supporting the optimum use of flexibilities for joint working (e.g. through partnership arrangements and pooled budgets).

They must provide a means for the local authority to access expert medical advice – for example, on whether or not a child can attend school, or on medical evidence provided in support of a school application – but may also be required to provide or facilitate access to, advice or support for the health community on SEN, particularly when health services are preparing reports on children. Whilst the advice and support may be provided by a number of health and care professionals as appropriate, the designated medical officer must be an identified, qualified and registered medical practitioner, with the appropriate training and/or experience to exercise this role in relation to children and young people with SEN.

The search had better get underway in LAs and CCGs across the land if they’re to stand a hope of finding such a person and training them in the ways of the different authorities they’re supposed to work across.

Social Care Services Liaison person

Another role is a similar function within social care. Social care teams have a range of duties and responsibilities towards children and young people with SEN.

Social care departments may find it useful to designate an officer or officers to support their social care teams in undertaking these duties and to act as the central point of reference for the local authority’s SEN teams on matters related to social care.

Although ‘may find it useful’ may be taken as meaning, sweep it under the carpet, there’s no money in the pot.

Section 4: Local Offer

There is a long section on the Local Offer of services and the document underlines the point that a “Local Offer’ should not be simply a list of existing services but should be used to improve the local offering for children with SEN/D.

The accompanying Regulations document is aimed at providing a common framework for the local offer. They specify the requirements that all local authorities must meet in developing, publishing and reviewing their local offer:

  • The information to be included

  • How the local offer is to be published

  • Who is to be consulted about the local offer

  • How children and young people with SEN and parents will be involved in the preparation and review of the local offer

  • The publication of comments on the local offer and the local authority’s response

There is a lot of information on the proposed Local Offer and SNJ will talk in more details about this in another post but enough to say at this stage that a ‘common framework’ is still not a ‘minimum standard’

5.6 Additional SEN Support

The big question has been what will replace the School Action & School Action + levels of SEN that are being abolished along with the statement.

The answer is here and it’s called  Additional SEN Support

But, to me, it all seems to depend on:

  1. The strength of the school’s SENCO
  2. The training of staff.

It’s fine to say, as the document does, that all teachers should be teachers of children with special educational needs, but we all know that mainstream teachers are trained to be mainstream teachers and a HUGE programme of extra training is going to be needed if there are not structured levels such as exists at the moment.

The document talks about all the tasks that a SENCO should be carrying out, but when my boys were in mainstream, the SENCO (who was great) was also a year head, class teacher, head of PE and Deputy Head.

In my personal opinion, a SENCO should be just that. A SENCO whose sole duty it is to identify, organise, monitor and review the progress of children with an SEN. They should be listening to those children and, where appropriate, organising nurture groups to support those whose support needs may look like a SEN but may, in fact, stem from an unmet emotional or social need.

Additionally, they should be monitoring the quality of SEN provision from the school’s teachers and be liaising regularly with parents (and it does say that in this document).

It’s a full time job all by itself. And they should be part of the school’s senior management team.

Before providing a child or young person with the Additional SEN Support, a rigorous assessment of SEN should be undertaken by the institution using all available evidence/data sources, such as attainment and historical data, the child or young person’s development in comparison to their peers, information from parents and, if relevant, advice from external support services.

How will this be funded? It will be 1. “agreed locally” and be from “the delegated schools budget”, but early on in the select committees they were talking about clawing back the delegated budget. So what’s it to be?

That’s it for now, we’ll have more next week, when we’ve had time to read it in detail.

You can find the DfE main document page here

You can find the Indicative draft Code of Practice here

You can find the Illustrative Regulations draft here

Please do add your opinions in the comments below or on our SNJ LinkedIn group

Co-production is the key to SEN culture change

Tania writes:

Last week I spoke at a top-level conference for council Chief Executives and Leaders from the SE7 – seven local authorities across the south-east of England.

I was there as part of the Surrey pathfinder, to talk about how parent involvement had become integral to the SEN reform process. Parental participation was demanded by the government and in the Surrey pathfinder, it has become much more than just ‘joining in’.

I’d like to share my short speech with you because I know that we, in Surrey and the SE7, are among those leading the way to culture change for everyone involved in special needs & health and social care provision for children and young people.

I’m not saying Surrey has changed yet at the ‘coalface’, but a change is gonna come…

If all this is new to your school, SENCo and local authority, whether you are a parent or practitioner, please read this. As I said in a post the other day, the DfE wants culture change training to start now. But to coin a phrase – if you’re going to HAVE something different, you have to DO something different.

Let me know what your thoughts are in the comments…

***

My name is Tania Tirraoro, co-chair of Family Voice Surrey. I also run a “Times Top 50” website called Special Needs Jungle that aims to help parents whose children have special needs & disabilities.

I started that website as a direct result of the experiences I had of trying to get statements for my own two sons who have Aspergers and other difficulties. It was adversarial, stressful, frustrating, at times emotional – and we had it easier than many, never having to go to tribunal.

In the five years since then, I have heard so many parents describe horrific – and hugely expensive – experiences of battling to get the help their children need. Of quite disgraceful treatment by local authorities, considering that those parents were only asking for support…

I don’t think it’s unfair to say that parents were viewed by professionals as grasping, demanding and, quite frankly, a bloody nuisance – interfering with their jobs ‘delivering’ services to ‘the client’ (in other words, children)

co-production tree

Click to enlarge. Image from http://www.govint.org

Parents have been left at breaking point, bewildered and angry as to why they should have to fight for what you would think anyone would want for any child – the right support provided in a timely manner.

You might look at me and think I’m one of the “sharp elbowed middle-classes” the right-wing press like to sneer at. But that’s not where I came from and I’m in this to help those parents be heard, who don’t even know they’re allowed to have a voice.

So. Here we are. The government decided enough was enough. Things had to change – and what was more, parents were mandated to be a part of it. Imagine that. I can only guess at the gasps of horror from SEN departments across the land.

But, I have to say, and I know Susie [Campbell, Surrey’s Pathfinder Manager] will agree that- in Surrey at least–  the sky did not fall in on County Hall and it’s all working out quite nicely so far.

From a starting point of mutual suspicion that has taken time to overcome, we’ve worked to build up a relationship that has steadily improved – because we wanted it to work.

We now operate what we’re calling co-production – working together as equal partners – this is a revolution in thinking and really, it’s as it should be!

Parents representatives sit on every workstream of the pathfinder and on the Local Change Board.

I have seen guards come down over time and views shared in a measured and respectful way –  but of course it hasn’t all been plain sailing – as in any sphere, it can depend on individual personalities and it’s up to everyone to make sure this is managed.

On the whole, parents have discovered that practitioners don’t have horns and practitioners have discovered that parents have valuable insights that they may not have previously considered. This can only be for the benefit of who this process is all about – the child.

There is still a long way to go with: culture change for many within local authorities and with confidence for parents outside the pathfinder – there’s no magic wand.

But the genie is out of the bottle and when the pathfinder is over, parents aren’t going to away quietly and those with whom I work within Surrey don’t want them to – and neither does the government. We’re already involved in other work for example the Disabilities Expert Group and Gap Analysis for SEN provision.

This is going to be the new normal – But – and this is a big but – it needs to be sustainable.

Parents came into this as hopeful and willing volunteers, but now that the benefits have been realised and we are working as co-producers, local and national government need to look to how they can support the continued involvement of parents as we ALL work together to improve outcomes for children and young people with SEN & disabilities.

***

So – what’s your opinion of the reforms?

And – if you’re in Surrey, see this link for our upcoming conference on the SEN & health changes

Government acts on calls for SEN ‘duty’ for health provision in reforms

senreform3The surprising and extremely welcome news today from the Department for Education (DfE) is that there will, after all, be a legal duty on health providers to deliver the provision detailed in the health part of the Education, Health and Care Plan that’s currently being developed under the SEN reforms.

Clinical Commissioning Groups are GP groups who, under the new health changes, will plan local health services and who will be called on to organise the health requirements of an EHCP, including specialist services such as physiotherapy, and speech and language therapy.

Since the first draft legislation was published for the Children and Families Bill, parents, charities, SEN legal experts and local authorities themselves have been expressing concern that there was no duty on health to provide the services in the EHCPs. There was only a duty to “jointly commission” – the ‘abracadabra approach’ – which everyone knew was never going to be enough.

The government has bowed to this weight of expert opinion and today, in a press statement, the SEN Minister, Edward Timpson said,

“We are putting health at the centre of our reforms in bringing in this legal duty. It is a significant step forward for children and young adults with special educational needs, and I know that many parents will welcome it.

The duty will mean that parents, and children and young adults with complex special educational needs, will get the health services that are right for them.”

Christine Lenehan, Director of the Council for Disabled Children said,

“Many children and young adults with special educational needs depend on health services. I am really pleased that their needs are being taken seriously. This legal duty should help to improve their lives.”

However, Health Minister Dr Dan Poulter said:

“We are determined that children and young people should be put at the heart of the new health and social care system. That is why we and many other organisations with the power to make a difference recently pledged to do everything possible to improve children’s health. This is an example of that pledge becoming a reality.”

disability sDr Poulter is the only one who does not make the specification “with special educational needs”. He instead refers to the recent pledge “Better Health Outcomes for Children and Young People

A quarter of all children with disability do NOT have special educational needs but do have significant health needs. They will not be covered under this announcement under the current way the Children and Families bill is worded.

Views on health from the House of Commons Children & families Bill Committee

In today’s HOC Children & Families Bill committee hearing, Srabani Sen, chief executive of Contact A Family, said that including disabled children has the potential to cost less to provide provision because it will be more coordinated and simplified. She said that this is where working with parent-carer forums is beneficial because by involving parents at a strategic level designing services you end up with better targetted services.

In her evidence, IPSEA chief executive, Jane McConnell acknowledged the work that had gone into bringing about a duty on health as it had been previously said it wouldn’t be possible. However, she went on to say that that although now it seemed there would be an Education & Health plan, if put under scrutiy by the Trades Description Act, the proposed EHCP would fail because there is still not a duty on social care.

Mrs McConnell said that this should not be a big step as social care is administered from within the local authority, so it should not be as big a challenge to achieve. If there is, she said, a single entrance into the plan then there should be a a single path to redress.

Mrs McConnell explained that she had been told that the current Tribunal already has the expertise to oversee all three strands of a plan in a dispute over provision so it should be given the power to do just that. Otherwise, there would be a reliance on parents to go to three different points for redress, which, if it is a single plan, does not make sense.

So, a huge step forward, acknowledged on all sides but:

1. Still no duty on social care

2. Still no inclusion of children with disabilities who do not have special educational needs.

What do you think?

Read about today’s other developments in SEN reform – Pathfinder update and champions named, as well as more views from the HOC Children & Families Bill committee

SEN reform progress report: ‘pathfinder champions’ chosen

senreform4It’s been a bumper day of announcements and happenings surrounding SEN reform.

First of all, came the publication of a list of local authority groups who have been appointed “pathfinder champions” as they plan to implement the reform to special needs provision in England.

At the same time, a joint report on progress across the pathfinder programme, was published, including headline results from a survey of 65 families with completed education health and care plans. The report is available for download from the associated resources section of this page.

But, quite unexpectedly, the DfE announced a much called for duty on clinical commissioning groups (GPs who plan local health services) to secure any health provision required in the upcoming education, health and care plans for children and young adults up to 25.

Hard on the heels came the House of Commons Children’s & Families Bill committee meeting with a stellar cast of speakers that anyone knowledgeable about the SEN world will be familiar with.

Wow! This is too much information for one post, so Debs and I have prepared TWO posts, one about the new duty and one about the first two points.

Read the “New Duty on Health” post here. (The link will be repeated at the end of this post)

Progress Report & HOC Committee

The progress report and headline survey results is a largely upbeat document about, surprise surprise, progress made. It does seem that, as you would expect, the smaller, more compact authorities are further along in some areas where reorganising services is a more straightforward.

The report, while interesting and informative, does rather over-focus on the positive aspects of various pathfinders and while this is to be expected, highlighting particular achievements, it would be useful to see what isn’t working quite so well and where some of the larger challenges such as the scale of work needed to provide the Local Offer and its necessary IT framework mentioned.

It was, however, gratifying that they mention the parent-carer involvement of the SE7 because, certainly in Surrey and Kent, we do feel this is of particular note. You can read the document in full here

In fact during the House of Commons Children’s & families Bill committee hearing in Westminster today, Christine Lenehan of the Council for Disabled Children noted that, as she visited the various pathfinders, she found that some of most effective ones are the not those with the most plans but those that have concentrated on building climate for culture change to happen.

This, Mrs Lenehan emphasised, will be essential otherwise people will just be focusing on scaling up the pathfinders rather than looking at how you make an entire system change and so that it helps individuals in the system.

Mrs Lenehan said that true success was working with empowered parents, empowered young people and being able to bring creativity to some systems that have struggled to be creative, because there are far too many professionals who do what they do because it’s the way they have always done things. She noted that in her experience some professionals happily seemed to admit that their jobs would be far easier without the interference of parents!

Brian Lamb, the author of The Lamb Inquiry in 2009 and who spearheads Achievement for All said during the select committee that, “Essentially the more you involve parents both at school level and the strategic level, the better the outcomes you get.”

He welcomed the concept of the Local Offer of services for SEN/D in terms of what the government has painted as the picture around it, rather than the language that now exists in the actual bill.

Pathfinder champions named

From April 2013, the ‘pathfinder champions’ will begin to support councils who local authorities across England who are not involved in the pathfinder as they prepare to roll out the reforms.

The DfE says that the champions were chosen based on a mix of skills, experience and regional factors. Each region will have its own pathfinder champion but in some areas, the role will be carried out by a partnership of pathfinder local authority areas.

The pathfinders are:

London Bromley & Bexley
South East SE7 (consortium of seven LAs) and Southampton
South West Wiltshire
North East Hartlepool
East Midlands Leicester City
East of England Hertfordshire
West Midlands Solihull
Yorkshire & Humber North Yorkshire & Calderdale
North West Greater Manchester Group (Wigan, Trafford and Manchester)

The SE7 consortium consists of Surrey, Kent, West Sussex, East Sussex, Hampshire, Medway and Brighton & Hove. Obviously with Surrey and Kent being our own areas, we are both very pleased that the SE7 has been designated.

The champions cover a broad range of authority types. In some city-based authorities, it is a very different system where, for example there may only be one new health Clinical Commissioning Group (CCG) whereas for example in Surrey there are 5.5 (half of the .5 is in Hampshire) and so coordinating provision will be much more complicated. In addition, in Surrey the SEN department is divided into are four geographic sub-quadrants as it is such a big county and I’m sure this isn’t the only LA that will face such complications.

The work of the pathfinder champions will be informed by a set of ‘principles of emerging practice’. There will be an updated version of this document on the pathfinder website from the end of March. Translated, ‘principles of emerging practice’ are ways that those involved with the reforms have found to be the most effective and practical steps to implement the reforms.

Two further SQW evaluation reports will be published at the end of May and September. The first of these will include further progress made, feedback from 10 case study areas and a final update about the SEN Direct Payments Pilot Programme.

Read the post on SNJ about the new duty to provide health provisions in an EHCP here with responses on it from the SEN Select Committee hearing

You can watch the replay of the HOC C&F committee from 5th March 2013 here

Not: As we publish, the committee is still going on, but for our purposes, most of what we needed to hear has been said. If anything else interesting is said after 5pm, we’ll update.

Rare Disease Day: Son2 has Ehlers Danlos Syndrome

facebook-profileTania writes:

As you will know if you are a regular reader, Son2 has Asperger Syndrome. He also has ADD (no H in there, he doesn’t move much!)

Last year, while researching information for the forthcoming Rare Disease Day for work, I came across a case study on the Rare Disease UK site about a young woman who had struggled with a group of different syndromes, including hypermobility, Raynaud’s Syndrome and POTS (Postural Orthostatic Tachycardia Syndrome).

It was a light bulb moment…

son2eds2Son2 was born with an unstable ‘clicky’ hip that took a long time to heal and as a toddler, he had suffered with Reflex Anoxic Seizures, a frightening condition where shock or pain can cause the heart and breathing to suddenly stop. The sufferer then has a seizure-like episode, with eyes rolling, the skin going grey and then falling into unconsciousness.

In fact, as they are not breathing and their heart is not beating, they are clinically dead. After some seconds, thank God, adrenalin always kicks in, restarting their heart and breathing and they come round.

RAS is caused by an inappropriate response of the vagus nerve triggering a cardiac event. It is a rare heart arrhythmia. The brilliant charity that helps people with RAS and other blackout conditions is called STARS and I was involved with helping them for a long time.

Son2 would have these episodes up to three times a day, usually triggered by anxiety or frustration. By the time he started school, the attacks had diminished into ‘near misses’, where an attack would start but we were usually able to get him to a horizontal position to help minimise the effects and equalise his blood pressure.

It was, as you can imagine, a very distressing time, but as with everything we have encountered as parents, we made it through, just taking every day as it came. Of course we knew nothing, then, of what was to come in the years ahead with both sons’ Asperger’s.

As Son2 grew older, his Raynaud’s would cause his lips to turn blue when he got cold and he began to suffer from joint pain and dizziness. We did not connect the different problems he experienced into one larger whole – why would we, when they were so different? We were worried that his dizzy spells were signalling a return of the RAS, which, if it goes away in childhood, can recur at puberty.

But when I read the case study, everything fell into place. The young woman had eventually been diagnosed with Ehlers Danlos Syndrome. I was convinced this is what Son2 had, so I decided to do some more research and follow it up with my doctor.

My research revealed that EDS has six different types of varying severity and the difficulties experienced within each sub-type can also affect people in different ways. EDS can cause multiple dislocations, joint pain, fatigue, easy bruising and stretchy, fragile skin among many other symptoms.

RareConnectAs my work involves a forum run by RareConnect, and I knew they had an EDS forum, I contacted my colleague there, Rob, who helpfully gave me some numbers and links for EDS information.

As a result, I called up Lara from EDS Support UK who gave me the name of a specialist. I went to my GP for a referral, worried she might think I was an over-protective mother. Luckily, she knows me and trusted my instincts. Although she was no expert in EDS, when I gave her the information I had and the name of the specialist, she was happy to refer us.

Soon after, we went to see Professor Rodney Grahame, who is a world expert in EDS in London. He carried out measurements and a physical examination of Son2 and listened closely to his medical history before agreeing that he did, indeed, have EDS Type III.

edsSon2  already had OT at school and now also has a physiotherapist, we have had a special programme designed for him at our gym (he is 13) and he is waiting to see another specialist paediatrician regarding a further potential issue that Professor Grahame noticed.

We saw the Prof. privately for speed, although he also sees patients on the NHS. All Son2’s other treatments are NHS and so we are on a waiting list.  For the physio, the letter instructed us to wait six weeks from the date of the letter before we could ring up for an appointment!

The EDS RareConnect forum that I mentioned, which is run by EURORDIS, the European Rare Diseases Organisation, has lots of information, research articles and the chance to connect with others. It’s also multi-lingual.

If anything I have described here rings a bell, do check out the links in the article to find out more. It’s quite amazing to me that because of work I was doing to help others, I ended up discovering something about my own son that will make his life better (even potentially longer) and my great thanks go to Rob Pleticha at RareConnect and Lara Bloom at EDS UK for helping me on my way.

Rare Disease Day is on February 28th. You can find the Facebook page here

If your child has been diagnosed with a rare condition, the National Children’s Bureau has an information support sheet. You can download it as a PDF here

Special Needs Jungle has a new LinkedIn group!

LIgroupWe have exciting news!

Special Needs Jungle now has a brand new group on LinkedIn. While there are a couple of other SEN groups there, the Special Needs Jungle group is aimed at anyone on LinkedIn involved with 0-25yrs special needs and disability issues in the UK.

This includes health, education, mental health, social care, childhood illness/rare disease & its implications among other issues. And you are welcome whether you are a practitioner , parent/carer or another individual or professional with an involvement in these areas.

We aim to offer a chance to learn from each other by sharing knowledge, experiences, news, best practice and views you may not have previously considered!

There is so much knowledge available from many different sources and we’d like to offer a place for you to contribute your ideas, views, resources and knowledge.

With so many changes on the way in the wider area of special needs, it makes sense for knowledge to be disseminated and shared as widely as possible.

The group is managed by myself and Debs, so you’re sure to have a warm welcome. We’ll be on the look out for great contributions for the SNJ site as well, so don’t be shy in your suggestions!

Join, share, contribute, make yourselves at home!

If you are a LinkedIn user, you can ask to join here

Early Years Development Journals from NCB

NCB-LogoThe NCB (National Children’s Bureau) website has some brilliant free resources for parents, carers and practitioners available for download.

One is the Early Years Development Journal.

“The new Early Years Developmental Journal is designed for families, practitioners and others to use as a way of recording, celebrating and supporting children’s progress. It is also for people who would like to find out more about children’s development in the early years. It supports key working by helping everyone involved with a child to share what they know and discuss how best to work together to support development and learning.

This Journal is particularly useful if you know or suspect that your child or a child who you are helping is unlikely to progress in the same way or at the same rate as other children – whether or not a particular factor or learning difficulty has been identified and given a name.”

Before you start to use the Journal, you should first read the ‘How to Use’ guide, which you can also download.

There are also specific journals for children who are deaf, visually impaired or have Down’s Syndrome on the same page.

Debs says:

“I was introduced to the Developmental Journal for children with a visual impairment by one of our Consultants.  I was asking how my son’s development compared to other children with VI because I didn’t think it was fair to be comparing his development to a sighted child.  Thankfully, our Consultant was Alison Salt (Consultant Paediatrician – Neurodisability) who was one of the people involved in helping to develop the journal for VI children.

The journal became our bible and it went everywhere with me.  We took it to assessments with Alison Salt, his VI play specialist used it to set targets, we used it with his nursery – it was invaluable as it meant we were all working together with the same information.  We were able to see what my son was able to do, what gaps there were in his development and within the journal for children with VI there are also suggestions on activities.

As a mum of a child with visual impairment, I found it really difficult at the beginning to think outside the box – so many ideas for helping a child to develop are vision based.  Look at the majority of children toys, most of them have buttons that light up to tell you that you chose the right option.

The developmental journal was so useful, it gave us ideas, a true assessment, a mutual reference for all involved and more importantly, it gave us hope.  I really cannot recommend this Developmental Journal enough.  It made me informed and therefore I felt like an equal partner.”

There is so much more on the NCB website from information, training and support, Why not bookmark the NCB website to explore as and when you have the time?

SEN Reforms – The Minister visits

Last Friday a groups of parents from parent-carer forums around the country came together at the Department for Education to talk about how parental involvement in the pathfinder reforms had influenced the process, what was working and what wasn’t.

The parents included myself, Debs (who you will recall runs Kent’s forum) and Angela Kelly, my Surrey Family Voice co-chair.

We talked a lot about the value of what is being called the “co-production” of parents’ voices being valued and listened to and how it must continue after the reforms are put into practice, and preferably, mandated in the Children & Families Bill, or new Code of Practice/regulations.

On hand were DfE officials involved in the bill’s progression and yesterday, Edward Timpson, the minister in charge himself travelled to Disability Challengers in Farnham to meet parents and pathfinder families.

Although, very flatteringly, I had been invited to meet him because of Special Needs Jungle, I was already booked to deliver a half-day social media workshop for a room full of noisy and energetic Stella & Dot independent stylists. It was lots of fun, but I was rather hoarse and brain-dead at the end.

Despite sadly missing my chance to speak to the minister, I knew he was in very good hands with Angela being there, along with other parents.

And Ang, being the good egg she is, has written about the visit here. She did say the Minister had a tear in his eye at missing me too, but I think she was smirking when she said it.

Over to Ang…

The SE7 pathfinder team had an important visit on 14th February. SE7 is a collective group of seven south-east local authorities, parent-carer forums and Voluntary and Community sector organisations, who have come together to trial the reforms proposed in the Children & Families Bill.

On a mild Thursday morning, a collective group of professionals, made up of local authority, voluntary and community sector and parents came together at Disability Challengers in Farnham, Surrey to meet with Parliamentary Under Secretary of State, Edward Timpson. (And yes, I have included Parents in the professional capacity because 1, we are professionals where our children are concerned and 2, we are professional in our capacity as co-producers under the new approach to the SEN reform)

Upon my rather unceremonious and flustered arrival, I was greeted by a room full of familiar and  friendly faces. Co-chairs of West Sussex, Hampshire and Kent parent-carer forums had arrived in a much more timely manner than myself, thank goodness and represented parent participation in a very professional manner.

But most importantly there were young people present and a family who are currently at the Statutory Assessment phase under the current SEN system.  Having young people and families involved in such a key meeting is such a step forward and gives a them a voice, it also enables the people who need to understand this message the opportunity to hear how real people are affected by the current system and what needs to change.

The Minister joined everyone in a circular group and was told about the progress being made so far by all trial areas, while Surrey’s pathfinder manager, Susie Campbell followed with Surrey’s progress regarding the single plan. She explained how Surrey had devised their single plan, focused and the child and their family, and how families and young people had been instrumental in this process. Our draft has gone back and forth until a plan was agreed suitable for testing.

I was then asked what my thoughts were on the single plan and I rather gushingly spilled out how I thought co-production was the only way forward and that by children and families having a voice and being at the heart of the process this would create a culture shift and build relationships with parents/carers and all the authorities.

Mr Timpson spoke with a family about their experience of the current system and the openness of the discussion demonstrated that they were being heard and that a change in the way mainstream schools approach SEN and disability was urgently needed.

There was a very limited discussion about Key Working which, while this was due to time, is something that I feel will have to be further addressed  and  when further trials have been carried out this will be  key area (pardon the pun) to ensure the success of the new approach.

Personal budgets and the Local Offer were next and Co chair of West Sussex spoke of their experiences with personal budgets and how this had enhanced their child’s access to services he actually needed rather than accessing services that were available.

Click to see the Tweet Vine Movie of the card

Click to see the Tweet Vine Movie of the card

I think more time needed to have been spent discussing the Local Offer, as there huge concerns over how this will work and how it will  replace the categories of School Action and School Action Plus and inform parents of services that will be able in cross-boundary areas in a clear transparent timely and effective way

Time seemed to be the main constraint with the meeting as there was a lot to present in such a small amount of time, however that Mr Timpson visited to see what is happening in the trials from the mouths of those involved  demonstrates a willingness to listen learn and understand what is happening with the trials and, if I hadn’t mentioned it before, the importance of co-production!

At the end of the session Mr Timpson was  presented with messages from each SE7 parent-carer forum to the Minister. This was innovatively delivered in a hand made Valentines card.

This was well received and Mr Timpson remarked that it was the most creative lobbying he had ever seen, I therefore feel that because of this, the impact of the messages will resonate for longer and have a greater prospect of successfully informing the change to the SEN and disability reform.

Here’s Family Voice Surrey’s message to the Minister:

Message from Family Voice Surrey- Thank you for listening to and including parents/carers views in the publication of the draft legislation.

Our thoughts are that the new bill needs more clarity. This view is shared by ALL parent carers on our steering group. Statutory protection is necessary for those children and young people who have disabilities that may fall outside of the SEN bracket, these children and young people may have very complex health needs but if they have no special/additional educational requirement then currently they will not be eligible for statutory protection under the single plan.

Family Voice Surrey request that you include:

  • Statutory rights for those aged 0- 5 with an EHCP, ensuring swift and timely access to treatment/equipment to aid the delivery of early intervention
  • A mandatory requirement for children with SEN and Disabilities to receive a level of support from their LA that meet the requirements of their EHCP
  • Minimum national standards for the Local Offer – a specified minimum level of provision that Local Authorities will have a duty to provide to children with education, health and/or social care needs who are not eligible for an EHCP

Pathfinder has shaped co-production and parents and carers are working alongside professionals, practitioners and providers in an unprecedented way and it is working.  Policy and local delivery is being shaped in a pioneering way.   This must continue!

Mandatory requirements for co-production are a central part of the EHCP process, together with the delivery of the Local Offer at a strategic level across all services.

Parent/carer forums have a vital role ensuring that parents receive sufficient support and training to undertake co-production effectively. Recognition is needed for the unique role that parent/carer forums will have in this delivery , with adequate resources provided for this work.

Message from Kent PEPs (Kent parent carer forum)

As a forum we were please to see some of the feedback received from parents/carers has influenced some changes in the draft Children & Families bill, and thank you for listening to our views.

We welcome the changes regarding mediation and the fact it will not become compulsory. We are pleased to see the inclusion of Towards Adulthood as a requirement of the Local Offer and an emphasis on strengthening the participation of young peoples.

However there are still some areas where we have concerns:

  • We are concerned about the lack of inclusion for children & young people who have a disability but not SEN and hope your decision to exclude them will be looked at again, in particular to provide statutory protections for Disabled children & young people who have a specific health/social care need but not severe SEN.
  • There is no indication of a duty to respond to a parents request for assessment within a time limit; will this become clearer when the regulations are published?
  • We would appreciate more detail of the single assessment process, Including how the integrated assessment will work in practice; will this become clearer when the regulations are published?
  • With regards to the Local Offer we urge you to support a standard approach for schools to determine some national minimum standards encompassing what parents/carers can expect from schools, clearly laid out so parents can see how these standards work in practice. This should of course include academies & free schools.
  • We support the call for a national literacy and dyslexia strategy, which includes dyslexia trained teacher in every school, which would support the need to ensure early identification (Dyslexia Action’s Dyslexia Still Matters report).

The pathfinder has certainly increased parent participation and closer working relationships between parents/carers and professionals and we would appreciate support for the vital role parent/carer forums have in ensuring effective co-production continues.

Top Tips for Speech and Language Therapy – Part Two

SpeechblogHere is the second part of top tips for speech and language therapy from Helen & Elizabeth at SpeechBlogUK. If you have any tips that have proved useful, please do share them in the comments!

***

Your child’s initial appointment

Your child will probably be seen in a clinic room if they are preschool.  If they are school-aged, they may be seen in school or in clinic – different departments work in different ways.  In a few cases you may get a home visit but these are unusual unless you are seeing an independent therapist.

What to expect

The appointment will probably last around an hour, maybe longer.  If you are in clinic, the therapist is likely to spend a large part of the appointment talking to you about your concerns.  He/she will also play with your child.

If your child is preschool age, they may not do much else and it may look as if they are not doing much.  However, they will be looking at all sorts of things while they are playing, for example, how your child plays, how they communicate, whether they can follow instructions and answer questions, whether they can take turns, how long their attention span is, what they do with the toys…

All of these things will give the therapist useful information about how to help your child.  They will probably like you to join in and interact with your child as well.  Sometimes the SLT may do a more formal “assessment” of your child’s difficulties as well, especially with an older child.  This sounds heavy but will just involve looking at a book full of pictures and asking your child to name things or find particular items.

WARNING:  Your child may not be at their best in the unfamiliar situation, and you may find that your child does not respond to things you are sure that they can do.  If this is the case, tell the therapist.  They will be happy to talk it through with you and work out whether the unfamiliar situation is causing the difficulty or if it’s some other aspect of context that is making the difference.

How to get the most out of your appointment

speechblogboyMake a list of your concerns and take it with you.  You are the person who knows your child best so the therapist will want to hear what you are concerned about (and not) and what you have already done to try and help, if anything.  Think about what you want to convey.  Take with you any other useful information – with a young child, if you have a list of when they did things (crawled, walked etc) in a baby book, you may find it useful to take this with you.

Also, if your child has seen any other professionals (audiology, paediatrician, psychologist etc) take the reports with you.  A school report may be useful to the therapist if you have a school-aged child.  The more information the therapist has, the more likely they are to be able to make an accurate and detailed assessment.   At the end of the appointment, the therapist will give you some feedback about what they have found.

REMEMBER:  If you don’t understand what is being said or the follow-up plan that is suggested, ask.  In all professions, you become immersed in something and it is easy to say something that you think is easy to understand that is confusing to the person you are talking to.  I know the mechanic at the garage certainly does when I take my car in to be fixed!  At all stages, if you are unsure, ask.

What to tell your child

Obviously you will want to tell your child something about where they are going and why.  Keep this low-key.  If your child is quite young, just tell them that you need to go and talk to someone.  He/she will have toys for them to play with, and will probably chat to them too. There is no surer way of ensuring that a child will clam up than telling them that someone is going to listen to how they are talking! You would probably be reluctant to talk too in that situation!  If you have an older child they may be more aware and inquisitive, but still be positive and low-key about it.  Tell them that someone is coming into school to see what some of the children do.  You are one of the children they want to talk to.  They might sit in your classroom and watch for a bit, or they might talk to you on your own and look at some pictures with you.

Follow-up appointments

Similar advice applies for getting the most out of follow-up appointments.  Make a list of what you want to say/ask and take it with you, especially if appointments are infrequent.

WARNING: Be aware that if you have a lot of very specific questions, your therapist may not be able to answer all of them immediately.

If the SLT has given you advice or activities to try, make sure you try the things that have been suggested.  You may start doing the practice and then discover that you are not sure what you are supposed to be doing.  You may run out of ideas to work on a particular thing.  You may have tried for a long time and find that your child is just not making progress.  Talk to your SLT.  Call or email and ask for more ideas or let them know that you are struggling.  Don’t feel that you have to wait until the next appointment, if a brief conversation on the phone would help to clarify something or give fresh ideas.

REMEMBER:  You are the person who knows your child best – make sure you think about what you want to convey each time and what you want to get from the appointment.

Do come and look at our website www.speechbloguk.wordpress.com  for more information as well.  We cover a range of topics for both parents and therapists.  We have several posts with top tips for different topics (first words, generalising sounds, speaking clearly etc), and ideas of things to do, and we’re planning more in the near future.

Children and Families Bill – initial views

Finally, the wait is over and the Children and Families Bill, which includes the SEN reforms, has been published. Debs spent yesterday poring over it and here are her initial views:

***

c&fbillimageJust after 10am yesterday, the Children and Families Bill was released and I started to plough through.  Not only did I  have to read this Bill, I  wanted to compare it to the draft Bill published last September, the Select Committee’s pre-scrutiny recommendations from just before Christmas and the numerous responses.

All of this with a child off school with a chest infection and a husband at home who wanted to chat about decorating the bathroom – oh, and no in-house lawyer on hand to help.

The first thing I looked at was whether the Bill strengthened the involvement and rights of the parent and child (or young person)?  Well, you’ll be pleased to know it has.  There is a whole new clause, right at the beginning of Part 3 of the Bill (the part that deals with SEN), which reads:

In exercising a function under this Part in the case of a child or young person, a local authority in England must have regard to the following matters in particular—

(a) the views, wishes and feelings of the child and his or her parent, or the young person;

(b) the importance of the child and his or her parent, or the young person,participating as fully as possible in decisions relating to the exercise of the function concerned;

(c) the importance of the child and his or her parent, or the young person, being provided with the information and support necessary to enable participation in those decisions;

(d) the need to support the child and his or her parent, or the young person, in order to facilitate the development of the child or young person and to help him or her achieve the best possible educational and other outcomes.

As a parent, I am reading this as “Dear  Local Authority, you have to listen to me and my child(ren), and you have to give us the information we need in order for us to have an informed view”.  Now, there are probably 1001 legal-type people shouting at this post and saying the local authority “must have regard to” is not the same as the local authority “must” and yes, I know there is a difference but I am trying to be positive.

Throughout the Bill, clauses have been added or amended to clarify that parents and young people must be involved and their views listened to.  So thank you Mr T, this is a move in the right direction.

Rights & Duties

My second question was to look at whether there was now a duty for health to provide a service.  In the last Bill, there was a lot of criticism that “joint commissioning” was not enough.  In fact the Education Select Committee believed strengthened duties on health services were critical to the success of the legislation

Well, now in the definition of “Special Education Provision” we have:

21 Special educational provision, health care provision and social care provision

(5) Health care provision or social care provision which is made wholly or mainly for the purposes of the education or training of a child or young person is to be treated as special educational provision (instead of health care provision or social care provision).

This doesn’t put a duty on health but the LA do have a duty to secure the special educational provisions.  There is no clarity however, as to which health care provisions this will actually mean and as there is still no duty on health with respect to the provisions within the EHCP, there are no guarantees.

Next, we considered if the new Bill clarified that parents can apply for a EHCP assessment and the answer is yes.

36 Assessment of education, health and care needs

(1)A request for a local authority in England to secure an EHC needs assessment for a child or young person may be made to the authority by the child’s parent, the young person or a person acting on behalf of a school or post-16 institution.

There appears to be no timescales for the LA to respond within the Bill, but we are constantly being told that the “devil will be in the detail” so this, surely, has to be announced in the draft Regulations which are currently being compiled.

So, on to the next question “is mediation still compulsory” (an oxymoron if ever I heard one)?

And the answer is no.  It’s still an option for families who wish to go down this route before Tribunal but no longer compulsory.

What about disabilities?

So, I started to relax a little now but then had a  big reality check.  One huge (or as my son was said “gi-normous”) omission from the new Bill.  Disability.  Or to be more precise, disability without a special educational need.  If your child has a disability and health and social care needs but does not have a special educational need then I’m sorry but you’re not part of the Plan.

Despite several charities protesting and high profile campaigns, it would appear that the Government will not be providing the same opportunities to some of the children who need them the most.

In the DfE’s case for change, it stated “Disabled children and children with SEN tell us that they can feel frustrated by a lack of the right help at school or from other services”.

In the Green Paper, it said “The vision for reform set out in this Green Paper includes wide ranging proposals to improve outcomes for children and young people who are disabled or have SEN” and “This Green Paper is about all the children and young people in this country who are disabled, or identified as having a special educational need

All of the proposals were clearly for disabled children AND children with SEN, not disabled children with SEN.  So, what has happened?  Every Disabled Child Matters has already commented on this and I will be supporting their campaign to give disabled children the same rights as those with SEN.  When they launched the Green Paper, the DfE set out their cart and made us an offer, they clearly said “disabled children and children with SEN”.  We all hoped  that they were really listening to our families and then they changed the rules without explanation.

If you’re interested in what other groups have to say in response to the publication, I’ve listed all I can find here, if you know of others, let us know.

Politics and personalities in the SEN jungle

Like me, my co-contributor, Debs Aspland, grew up in the call-a-spade-a-spade, working class, north-west of England.  Also like me, she has far too much to do trying to juggle work and care for her special needs children to have any time for the politics and game-playing that has so often, in the past, made lives difficult for parents trying to cut their way through the special needs jungle.

In this post, our Debs who, you will remember, is Director of Kent’s parent-carer forum, Kent PEPS, explores the different personalities we meet as parents and individuals in our daily lives and how thinking about this – and your own approach – can help you navigate the system to get the best help for your child.

***

Any change, even a change for the better, is always accompanied by drawbacks and discomforts.

Arnold Bennett

Any change, even a change for the better, is always accompanied by politics and personalities.

Debs Aspland

True co-production with parents is a goal that came out of Aiming High.  The Department for Education allocate a small grant each year to a Parent-Carer Forum within each local authority, with the remit that they work with health, education, social care and other providers to ensure that the services they provide are the services that families want and need.  Fantastic, what a great way forward!

However, the DfE forgot to tell the health, education, social care and other providers that they had to work with the Parent-Carer Forums.

(more…)

Special Needs Jungle named in The Times “Top 50 Sites To Make You Smarter”

Wowzer!

Special Needs Jungle has been named in the The Times (yes the UK national newspaper) as one of its “Top 50 Websites To Make You Smarter”.

Special Needs Jungle

How amazing is that?

Thanks to Justine Roberts, co-founder of MumsNet, who gave SNJ the ‘thumbs up’ in the ‘parents and teachers’ section of the Top 50.

It means a lot, especially as I’ve recently been diagnosed with  heart rhythm condition, Inappropriate Sinus Tachycardia, which makes day to day life much more difficult as I try to keep up with all my commitments.

This is partly why I’m so pleased that Debs Aspland has come on board to contribute all her knowledge and experience of SEN and coaching and help me take Special Needs Jungle to a new level.

SNJ is, at the moment, voluntary, although if I carry a post about a commercial product, I do ask for a small donation to my boys’ special school.

I’d like to move it to a self-hosted WordPress, but I don’t have the time to make sure it’s done properly, so any advice from savvy readers would be gratefully received!

So, thanks again to The Times and Justine. You’ve made my day!

Research backs Emma’s FACS battle

One of my fellow special needs mums, whom I met over Twitter, Emma Murphy, is spearheading a campaign highlighting the emerging dangers of taking the Epilepsy drug Sodium Valproate (Epilim) in pregnancy after many cases have emerged of children born to mothers taking the drug had developmental difficulties and other disabilities. It’s being described as ‘the new thalidomide’.

Emma and one of her children

Emma and one of her children

Emma Murphy has already made a splash with her campaign and today there is an article in the Telegraph about research which bears the anecdotal evidence out.

The findings were published online in the Journal of Neurology Neurosurgery and Psychiatry. Researchers at Alder Hey Hospital in Liverpool, studied 528 women in the north west of England. Just fewer than half the mothers had epilepsy and all but 34 of whom took anti-epileptic drugs during their pregnancy. Fifty nine mums took carbamazepine; 59 took valproate; 36 took lamotrigine; 41 took a combination; and 15 took other drugs.

(more…)

Storytelling Week

My colleagues over at NetBuddy have an article in The Guardian about Storytelling week and how to engage your children, especially those with special needs, in the wonder of a great story.

I’m delighted to have been quoted in the article, which you can find here: Storytelling: Netbuddy’s top tips

My own tips, from my own experience are:

  • Choose your books carefully: Books can be an ideal opportunity to instil social awareness. There are many great books that can help and that use social stories to model behaviour.
  • Repetition and associating reading with something pleasurable is the key. As a former TV and radio newsreader, I know that the way you read and the words you stress are just as important as the actual words themselves.
  • For my children, repetition not only of the story but using the same intonation, helped them with familiarity of a book and helped them to link the story with the image. Using the same tone and stressing the same words each time, meant they knew what to expect and helped them to join in.
  • Many children with ASD are highly visual and so using a book that has bright and engaging images coupled with reading the story the same way every time can serve to make the book a ‘safe haven’.
  • Choosing a book that coincides with a child’s special interests is always useful – this is why Thomas the Tank engine is so popular with boys with Asperger’s!
  • Even now, though Son2 is 13, he can still remember the books we read together aloud. He loved Thomas but the ones he really remembers are not the ones you would expect – “Oi, Get off our train” helped feed his environmental awareness, “Dudley Top Dog” appealed to his love of dogs and “Guess how much I love you” was soothing, every single time we read it.

These are ours. What are yours?

Guess How Much I Love You

Guess How Much I Love You

Dudley Top Dog

Dudley Top Dog

9780399233678

Son1’s Fave: Little Bear’s Trousers

9780099853404

Oi! Get Off Our Train!

Key Working : Whose Job Is It Anyway?

When the SEND Green Paper was launched in March 2011, the Department for Education said they would “test the role of key workers”.

Several parents approached our parent-carer forum in Kent asking “What is a key-worker”,  “Can we choose the  key-worker  if we are involved?” and “Can a key worker be employed by the Local Authority and be truly independent?”

Confused by Key working?You're not alone...

Confused by Key working?
You’re not alone…

Eighteen months later, parents are still asking the same questions and practitioners are, understandably, asking “Is this another task for me on top of my existing, increased, workload?”

(more…)

SNJ is the new SEN site expert on NetBuddy!

NetBuddy logo strap_V1[1]I’m delighted to tell you that I’ve been asked to be the new SEN site expert for Netbuddy.

Netbuddy offers practical tips from people with first-hand experience of learning disability, autism and special needs. It’s a great resource and I’m really pleased that they’ve asked me to join their team of advisers. (more…)

Skiing, Steam Punk and a view to the future

Happy New Year and I hope you all had a great Christmas without too much stress!

Ours was relatively quiet, with both Son1 and Son2 away skiing with their special school in the run up to the big day. We were more than half-expecting to have to fly out to Italy to collect Son2 after a few days and, indeed, he did Skype me gloomily after the first day, reporting that he didn’t like skiing and couldn’t stand up, his joints hurt and he felt faint. Sure enough, that evening, the phone rang. It was one of the party leaders assuring us that he was fine, and they would be trying their best to persuade him back onto the nursery slope the next day.

We held our breath until we heard back from Son2 the next evening. And what a change! Thanks to the experience and knowledge they have of him and their patience with reluctant participants, he had got the hang of it and was, he said, “Almost ready for the slopes”. By the end of the trip he was, “Better than Mr Faasen”, the school’s 12 foot rugby-playing PE teacher, whose care of Son2 last year made a huge difference to him. (more…)

My pick of parents’ guest posts on Special Needs Jungle this year

SNJ-logo smallIn the last year I’ve been lucky enough to have had many parents write about their families and the issues they face raising children with special needs. These woman have a lot to share from their experiences that can help others in a similar position and so, as the year nears an end, I’d like to showcase them here in case you missed them when they first appeared during 2012.

Charlotte’s amazing brain – a heartfelt story about childhood stroke

Charlotte Neve was just seven when disaster struck. Her mother, Leila, has had to face the ultimate horror for any parent and even now, Charlotte has a significant brain injury as a result of her stroke that they are facing with the same determination as they did in their early, dark days when even survival wasn’t assured.

Read More

Advice for SENCos – the parents’ perspective from Hayley Goleniowski

Hayley was recently invited to address a group of SENCos as the neared the end of their three year Masters’ degree course. Their tutor hoped Hayley’s experience could provide the missing ingredient to the course – that of the parents’ perspective.

Read More

When the words move by themselves – it could be Visual Stress

I met a lady on Twitter a while back, Michelle Doyle, who was talking about ‘Visual Stress’. I wasn’t really clear about what this was so Michelle has kindly written about it for Special Needs Jungle about how it affects her son and her fight to get him the support he needs.

Read her story:

Pathological Demand Avoidance – one family’s story

Pathological Demand Syndrome is increasingly being recognised as being on the autistic spectrum. People with PDA will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control. One mum, Deborah Rourke, has written for Special Needs Jungle about her son, who has been diagnosed with PDA and their fight for support. It’s a heart-breaking story. Please share it as widely as you can to raise awareness of PDA.

Read more

Helping your special needs child – a mother’s story

A mum called Tanya contacted me the  other day and asked to share her story about her journey to support her disabled son with everyone, which I am only too delighted to do. Tanya has some extremely useful suggestions so I urge you to read it. Please leave your comments in the comments section so she can see them.

Read more

Empowering parents is the goal for Pat

Pat Bolton is a parent of a young person with special needs who works with a small  team of Participation Practitioners at Parents In Power, Gateshead,  www.parentsinpower.btck.co.uk  Pat helps parents to get the support their children need.

Read More

Resilient Parenting – A Guest post by Lesley McCall, NLP & Hypnotherapy Practitioner

Lesley McCall is an NLP practitioner and Hypnotherapist and has a child with SEN. She is experienced in helping people with parenting issues and with children who have special needs. She has some advice on how you can stay strong as you raise your children.

Read more

Pathfinders, politics and parental co-production

Last Friday, our parent-carer forum in Surrey, Family Voice joined with Surrey LA and local voluntary and community services to host an SEN reform pathfinder update.

Surrey is one of 31 Local Authorities that make up the 20 pathfinder areas, with Surrey being part of the largest group, the SE7.

We had a great line-up of guests including Stephen Kingdom from the DfE, SEN barrister Gulshanah Choudhuri and Susie Campbell, the woman who has been responsible for pulling together all Surrey’s different streams of work for the pathfinder trials – a huge job.

This was an important conference and the right time to update parents whose children these reforms will affect. The draft bill was published last September and since then it has been picked over by parliamentarians, local authorities, charities and lawyers.

Ministerial Assurances

Stephen Kingdom, for the DfE, re-stated the Minister in charge, Edward Timpson’s assurances that no rights would be taken away from parents or children and that there was definitely scope in the draft bill for a tightening up of the language to  make that clear. He said they were working with the Department of Health on structures for redress if a stated provision is not made by a health organisation.

On timescales, he said they would be shorter than they are at present and the requirement for mediation would not extend the timescales for appeal. As mentioned on this website last week, Mr Kingdom confirmed that Speech and Language would stay under the remit of education and said that an ECHP must be as clear and specified as statements “should be”.

The Good, Bad & Ugly

Gulshanah Choudhuri

Gulshanah Choudhuri of SEN Barristers, called her presentation “The Good, The Bad and the Ugly” and addressed some of the legal concerns over the bill’s wording, in particular that there is no duty on health to come up with the provisions in the proposed Education, Health and Care plan, beyond a stated commitment in the new NHS Mandate for ‘joint commissioning’. She called on the government to make sure that children who may not have an educational need but do have a significant disability and so will need health and care provision are included in the final bill.

Gulshanah also called for the new SEN Code of Practice that must accompany the bill to undergo parliamentary scrutiny because it is the bible that parents, SENCos, lawyers and Local Authorities use and as such it is vital that it is closely inspected to ensure that it is the best it can be. Make it updateable by all means, but first of all, it has to be right.

Co-production a “no-brainer”

I spoke on behalf of Family Voice Surrey as co-producers of the conference and this, in itself shows how far we have come in changing the relationship from being on opposite sides to having our opinions given equal weight. If this government is to be lauded for just one thing it is that parents have been put at the heart of the reform and mandated to be closely involved with any decision-making processes that will, of course, affect our children. Even though my boys are now 15 and 13, with an EHCP going up to 25, we’ll be in the system for at least another ten years.

Family Voice Surrey is still a relatively new parent carer forum. We had our launch about this time last year it’s been quite a challenging year so far because we had to plunge straight into the pathfinder workstreams as parent representatives.

Fighting to get the right support can be lonely and isolating and frustrating, especially when it seems that the services you need are not available or you’re told your child doesn’t qualify for them or that you’ve have to fight for the educational help they need every single step of the way.  Expensive legal battles for assistance have become far too common and unacceptably adversarial. We all have many horror stories and they are still being created as this culture change has most definitely not yet filtered through to the coalface of SEN departments up and down the country.

Changing all this is what the reforms are supposed to be about. As parent representatives, we’re not there to window dress. After a tentative beginning on all sides, we’ve worked together for the best part of a year, and our views are listened to. I think that co-production has largely so far been a positive experience. It has most certainly given us a voice as parents and, I think, Surrey has seen the benefits of having the first-hand perspective of SEN services that we bring – even though our views are not perhaps always comfortable to hear.

It’s a no-brainier when you look at it. How do you know if you’re delivering the right support and services if you don’t speak to the people using them and their families?

The Minister, Mr Timpson certainly seems to be listening to those concerns that have been voiced and I hope that the bill’s wording is tightened up as soon as possible. Good intentions and assurances are fine, but I think everyone would feel much better if it was down in black and white in the Bill itself.

Reform – expensive but worth it

As for the trials themselves- they are only just beginning. Some families have been recruited, but this is an ongoing process.  Key workers- the person who is to guide a family through the whole process- are still being found and trained. The trials will need to be monitored and evaluated and, at the moment while there is nothing in law, a child who qualifies for an EHCP will still also need a statement as their statutory protection.

There is still much work to be done, and as the trials have been extended until September 2014, more money will need to be found to support this. There’s no doubt it’s going to be hugely expensive by the time the new system is finally in place, but if there’s something worth doing, it’s this.

In the same way that it is right to support children from difficult backgrounds so that they do not perpetuate the expectation of a life on benefits, it is right to support children with special needs and disabilities because many, though obviously not all, will have a much better chance of becoming a contributing member of society with the right assistance when it counts – in their school years and early adulthood.

This is the way to cut welfare – over a generation of helping our adults of tomorrow reach their potential, have a positive outlook and believe that they can achieve their dreams, wherever they lie. It is the responsibility of today’s adults – all of us – to help make that happen.

SEN Minister offers assurances to parents over Bill wording

 

I’m sharing this information received from the Council for Disabled Children which I hope you’ll find interesting.

********

Edward Timpson, the Minister responsible for SEN and Disability within the Department for Education, recently gave evidence to the Education Select Committee on the draft provisions of the Children and Families Bill that relate to SEN and disability.

He also met CDC and others to talk about concerns and issues. As Strategic Partner for SEN and Disability to the Department for Education CDC alerted him to the fact that parents were concerned that the reforms would erode their current rights in relation to education support. As a result of this the Minister undertook to write to parents through CDC in order to address these concerns.

The CDC has now received a letter from Edward Timpson that makes explicit the Government’s commitment to ensuring that protections parents have in the current system will be carried forward into the new system.

You can read the letter at this link

http://www.councilfordisabledchildren.org.uk

Charlotte’s amazing brain – a heartfelt story about childhood stroke

I happened upon a new blog via Twitter the other day, which told a powerful and emotional story about a young girl who suffered childhood stroke, was close to death, but with the help of a devoted mother and family and a dedicated medical team has pulled through.

Charlotte Neve was just seven when disaster struck. Her mother, Leila, has had to face the ultimate horror for any parent and even now, Charlotte has a significant brain injury as a result of her stroke that they are facing with the same determination as they did in their early, dark days when even survival wasn’t assured.

I found Leila’s blog within days of publishing a post about The Brain Injury Hub and contacted her to pass on the resource. Leila, in turn, has written about Charlotte’s fight for life for Special Needs Jungle as a way of highlighting childhood stroke and the devastation it leaves.

*****

Leila

Leila

For the last 12 years, I have had two beautiful, intelligent, high achieving, happy, healthy daughters. I’m a single Mum and the 3 of us are very close and have possibly the girliest household in the world.

However, on Friday 13th April this year, our world came crashing down around us as I woke up to my youngest daughter, Charlotte (7) breathing very oddly. At first it sounded like snoring but then I realised she was missing a few breaths each time. I tried to roll her over off her back thinking this would help and realised instantly that something was badly wrong. She was cold, floppy and unresponsive. Every parent’s worse nightmare!

(more…)

Keep Us Close – Scope’s campaign for better local disability services

The charity, Scope, which works to help children and families affected by disabilities, is currently campaigning for improvements to the Children and Families bill, which if you re a regular reader, is currently undergoing pre-legislative scrutiny. Scope Scope’s new campaign called Keep Us Close, is pushing for better provision of local services for disabled children.

If you’re interested in this subject, MumsNet have a Q&A session with the new Minister responsible for SEN reform, Edward Timpson on Tuesday so head over there to pose your question after you’ve read about Scope’s Keep Us Close campaign in this article by campaigns officer, Tom Eldon, written exclusively for Special Needs Jungle.

***

 

Until recently, when I started working for Scope, I had very little understanding of the challenges that families with a disabled child face here in the UK. I’d just spent a year and a half working with an association of parents with disabled children in Mongolia, whose situation was almost unbelievably dire – surely things must be better here.

And to be fair, things are a lot better overall. But what I’ve found out in the past few weeks through national research and speaking to parents and support groups has both shocked me, and motivated me to get involved in fundamentally changing the system for the better.

If you’re reading this blog it’s likely you’ll already know what I’m about to say – that trying to get appropriate support and care for a child with special needs often stresses a family to breaking point. From the initial stage of getting an accurate diagnosis of one’s child’s impairments, through navigating the process that’s needed to get  a statement of special needs (often required to get access to a suitable educational environment), to finding a school that meets their requirements, everyone I’ve been speaking to has been critical of the status quo. And often, even when these hurdles have been overcome, there are many more that remain; most families don’t live close to facilities and services that meet their needs, be it education, respite care, healthcare or even play groups and opportunities for children to socialise.

One mother I spoke to found local support to be so inadequate that she and another parent abandoned the state altogether and started up their own support service to provide advice and activities. Their charity has grown, and they now support the families of nearly 2,000 children, with some of them travelling as far as 50 miles to access their playgroups and meetings – but despite this clear demand they still struggle to raise funds. And these aren’t isolated incidents – time and again I hear the same story of stress and anxiety, of complicated processes and services that fail to meet families’ needs.

A recent Scope survey found that 6 out of 10 families with a disabled child aren’t able to access the services they need in their local area; only 1 in 10 told us that the process of getting local services was simple. Survey respondents’ children travelled an average of 4,300 miles to access services each year – that’s roughly the same as driving from Land’s End to John O’Groats. 7 times. It’s robbing families of their quality time, putting strain on relationships, and often adding a huge financial burden. Families are at breaking point, and the system needs a radical change on a structural level.

So how are we trying to help change all of this?

At the moment the Children and Families Bill is lumbering through pre-legislative scrutiny (as excellently documented here on Special Needs Jungle), providing an opportunity for us to reform a system that’s clearly failing huge numbers of people across the country. Scope have been campaigning for the inclusion of a ‘Provide Local Principle’ clause in the bill, which would:

  • Ensure services in a local area are inclusive and accessible;
  • Put a duty on local agencies to introduce new inclusive and accessible services if they don’t exist in a local area.

This would mean that parents’ views, and their families’ needs,would become integral to the planning and delivery of local services, making councils work together in a joined-up way. Having this clause in the bill would guarantee, in law, that councils have to provide the services family need closer to home.

The campaign, Keep Us Close, has been really successful to date, with over 17,000 campaign postcards and emails taken at the time of writing. But we still need to push the issue harder – many of the responses we get from MPs are broadly positive but lack any real commitment to change things for the better.

If you have a minute to spare, please take our online campaign action and let your MP know that this issue is important to you – that the opportunity for reform that the Children and Families Bill provides mustn’t be squandered. There are hundreds of thousands of families across Britain who deserve better.

Right now we have a critical opportunity to feed into the content of the bill and improve the quality of life of hundreds of thousands of families across the country. We expect the bill to come into Parliament in the New Year, so please, let your MP know that you care about disabled children and their families.

Thank you.