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

The Sensory Story Project

We love The Sensory Story Project and have been watching it from its early stages.

As a mum to a child with a visual impairment, sensory stories are a huge part of our lives but trying to find or make suitable sensory toys to read with stories has become a problem as he has grown older.

Jo, who created the Project, kindly provided a few sample ideas for us to look at and I asked my son to take a look.

Take a look for yourself and let us know what you think.

NICE guidelines for treatment of autism in children and young people published

NICE, The National Institute for Health and Care Excellence, has today published new imageguidelines for the treatment of autism in children and young people. “Autism – the management and support of children and young people on the autism spectrum” has been developed in collaboration with the Social Care Institute for Excellence (SCIE) and is the culmination of a long period of public consultation.

The guideline includes the different ways that health and social care practitioners can provide support, treatment and help for children and young people with autism and their families and carers, from the early years right through to transition into young adulthood at 19. It states key priorities as:

  • Full access to health and social care services, including mental health services, regardless of their intellectual ability or any coexisting diagnosis.
  • Health and social care professionals working with children and young people with autism in any setting should receive training in autism awareness and skills in managing autism. This includes the impact of autism on the young person and their whole family or carers, how to assess risk and how to provide individualised care and support, ensuring a consistent approach across all settings.
  • Making adjustments to the social and physical environment and processes of care. This includes using meaningful visual supports, personal space and sensory sensitivity requirements and arranging appointments at the beginning or end of the day to minimise waiting time.
  • Working with parents, carers and teachers to use play-based strategies aimed at increasing attention, engagement and reciprocal communication in the child or young person. The guidance states that any interventions should be delivered by a trained professional.
  • Understanding enough about the child’s condition to be able to anticipate and prevent challenging behaviour. This includes being aware of sensory difficulties, any mental or physical health issues such as pain or anxiety, co-existing ADHD, communication problems or changes and difficulties at home.
  • Families (including siblings) and carers should be offered an assessment of their own needs, including personal, social and emotional support. Practical support such as short breaks and emergency plans and assistance with planning for future support of the young person.
  • Transition to adult services should inform and include the young person in the planning and, where appropriate, their parents or carers, as well as informing about their right to a social care assessment at age 18. For young people aged 16 or older whose needs are complex or severe, use the care programme approach (CPA) in England, or care and treatment plans in Wales, as an aid to transfer between services.

Research Recommendations

The guidance also made several recommendations for future research for the improvement of autism services.

  • A key worker approach for children and young people with autism and their families should be formally evaluated in a randomised controlled trial.
  • Managing behaviour that challenges in children and young people with autism. A group-based parent training intervention (such as educating parents to identify triggers and patterns of reinforcement) should be evaluated using an RCT.
  • Managing sleep problems in children with autism using sleep hygiene intervention or melatonin in children (aged 4–10 years) with autism.
  • Treating co-morbid anxiety in children and young people with autism to look at the comparative clinical and cost effectiveness of pharmacological and psychosocial (such as Cognitive Behavioural Therapy) interventions for anxiety disorders in children and young people with autism.
  • Teacher-, parent- and peer-mediated psychosocial interventions in pre-school children with autism to investigate if comprehensive early interventions such as the LEAP model, are effective in managing the core symptoms of autism and coexisting difficulties (such as adaptive behaviour and developmental skills) in pre-school children.

What NICE says not to use

The guidelines also state interventions that should not be used, which may prove controversial to some.

These are the use of neurofeedback or of auditory integration training to manage speech and language problems and the use omega-3 fatty acids to manage sleep problems.
The guidelines also state that the use of secretin, chelation or Hyperbaric Oxygen Therapy should not be used to manage autism in any context in children and young people.

The above is just a prėcis of the whole guideline,  that you may wish to read in its entirety, but it gives an overview of what is included. You can find the appendices here What do you think? Are you pleased with the guidance and will they improve services and treatment?

Learning Disability Week – our own superheroes

Mencap have launched Learning Disability week to raise awareness across the UK.

This year Mencap are celebrating families and recognising the hard work they do to support their loved ones.  Their theme is “Who is your Superhero?” and this has caused hours of conversation here at SNJ.

We came up with several people whom we admire and are inspired by, but no one felt quite right. This was because we both kept coming back to the same answer in our heads, but it just felt a bit sappy to say it out loud, being the bad ass gals that we are.

Who is that person, we hear you cry? Well, and we make no apologies, that person – those two people – are our husbands.

Debs:    I met Chris and within 18 months we were married.  I could be me with Chris – warts and all – and he was still happy.  Then Chaos in Kent arrived.  Within 10 months we were parents to K and 2 years and 4 days after our wedding the twins arrived and somehow we were parents to three children.  The next few years were chaotic to say the least – premature births, hydrocephalus, Visual Impairment, ASD, SLCN, Dyspraxia and a number of other labels were hurdles we had to face.  We had to sit outside operating theatres, sit beside incubators, learn a new language and system and somehow find time to just be mummy and daddy.  We also had to remember to be Chris and Debs – which as any parents will know is not easy – but somehow we did this and managed to stay together and more importantly, we also still smile and laugh together.

chris collageHe is a really hands-on Dad who has never once shown any disappointment or shame in having kids with disabilities. As far as he is concerned, we have the three most amazing children ever!  He calls them his “hat trick”.  He is the Dad who bores his friends with Youtube clips of the kids; he is the Dad who forgets that one of our children is blind and then tries to keep a straight face as J tells him off for walking him into an obstacle. He is the Dad who is more excited than the kids at the Cadbury’s outlet store and the Dad who has had to learn to share his beloved PS3 and PS Vita.  He is also the Dad who will do the appointments if I need a break.  When J was younger, he wore artificial shells in his eyes.  Having them fitted and measured was just too much for me at the time so Chris took time off work and these appointments became Dad & J time.  There was no sacrificing sighs or comments, he just knew that this was what I needed.

I write blogs, speak at conferences, support friends who run support groups, coach colleagues and I also run a parent carer forum – most of this on a voluntary basis.  I also provide training across the SE and in addition to all of this, I am a mum and wife!  I hate saying no to anything and I am an “ideas” person so often find myself sat at midnight on my laptop researching a new project or trying to keep all the balls up in the air.

Chris just supports me.  He listens to me rant about politics and personalities, he listens to me rave about a yet another new idea I’ve had, he even took to twitter so he could share my work.  He drives 40-50 miles to work each way every day and often, has to start making dinner when he gets home because I have been so full on with the kids or work that I’ve not got round to it.  He is the dog walker, the toy fixer, the go-to video game man, the bacon sandwich weekend man and he also cooks a mean roast dinner.  The kids adore him and watch for his van to pull up at night because they know there will be tickles, teasing, throwing into pools and all the other things they love.

Now, don’t get me wrong, before any women out there start thinking I am married to a saint, let me assure you that Chris is a total bloke – he worships Liverpool FC, drives a white van, can sleep through the loudest noises, doesn’t know how to put clothes in the washing basket and I have to “remind” him when certain tasks need doing (I say “remind”, he says “nag”).  He is however, a totally supportive husband, a much-loved and adored fun Dad – so yes, he’s my Superhero.

Tania:

Marco and I have been married for 16 years next month. It was not a long courtship. We got together on a Sunday, He gave me keys the following Tuesday, I moved in to his flat in Clapham the next week. Two months later we were expecting Son1, Two months after that we were engaged and five months later, we were married. I have never, in all that time, doubted that I married the right person.

m&tLike many parents of kids with Aspergers, realising your child is different is a gradual process and he has been at my side every step of the way.

Although we were 29 when we met, we were still kids and we’ve grown up together having plunged head-first into parenting. Sceptics thought we’d never last, especially with my somewhat flighty track record.

The two of us with a new baby that neither was really prepared for was like watching a TV comedy, me the ‘glamorous’ TV newsreader, him the handsome, witty.. er.. accountant. Both of us clueless. Especially because Son1 was not your average babe who defied the parenting manuals. Defiance is his middle name.

Son1 would lie between us and repeatedly raise his legs in the air and bang them down on the mattress in the middle of the night. He’ll get fed up in a minute, we thought. He did not. Marco had to hold Son1’s legs down to stop him – and that kid was strong, even at four months old. This was not in the handbook.

Sleepless, Son1’s eyes would glint scarily in the light of the street lamp outside our flat; it was a sure sign of things to come.

We made it through those long, difficult years of discovering that our boys had additional needs, diagnoses, relentless fainting attacks by Son2, screaming meltdowns from Son1, finding schooling solutions, making adjustments, applying for statements,  even moving home to facilitate all this.

I was bad-tempered, anxious, exhausted, often ill (which we now know is Ehlers Danlos), irritable when under stress, which was most of the time.

And Marco? He was patient, understanding, loving, constantly helping me, even coming home from work because something had happened that I couldn’t cope with.

Now, when the boys are older, instead of things getting easier, the opposite has happened because of my illness. His life has got harder, taking on the lion’s share of driving the boys around, cooking, tidying, learning a new role of pushing me in a wheelchair, which is hard for both of us to come to terms with.

I meanwhile, am reduced to hobbling around, frequently sleeping for hours, constantly popping strong pain meds, doing what I can, which isn’t much.

This is not what we were expecting, but he has handled it in the way he handles everything; calmly, with good humour, wit, and charm. He was once named in his junior school class as the person most would like to be friends with and it’s easy to see why.

Every parent of kids with additional needs will understand when I say that my youthful dreams of an exciting, adventurous life have long since been replaced by wishes of a calm existence. It’s enough of a roller coaster ride living with your children.

My husband is my own superhero and source of calm; the perfect foil to my Type-A-ness that brings me ambition but also trouble if I drift too far away. He is the touchstone that I need to remind me that just being alive and together is sometimes enough success for one day.

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

NAS petition – Single point of appeal for EHC Plans

The NAS has launched a petition calling on the Government to amend the Children and Families Bill to create a single point of appeal for challenging provision in Education, Health and Care Plans.snj joined upThis change is essential if the Government are to deliver on their commitment to “ending the agonising battle many parents fight to get the support for their families, as they are forced to go from pillar to post between different authorities and agencies”.The NAS welcomes the replacement of education-only statements with joint Education, Health and Care Plans. However as currently drafted the Bill does not provide a joined up system of accountability and redress. Parents will have to go through separate appeals processes for each element of an Education, Health and Care Plan to challenge inadequate provision. They will continue to battle the system on multiple fronts.

Parents tell the NAS that social care and health complaints procedures are difficult to navigate, can take months and sometimes years to resolve disputes and are unable to offer the robust remedies currently provided by the First Tier Tribunals in relation to education statements. The solution is to enable the First Tier Tribunal to hear appeals and offer remedies for all elements of Education, Health and Care plans. Despite debates on amendments to this effect during the Commons stages of the Bill, the Government has resisted this change, claiming existing routes of redress for health and social care are sufficient. This flies in the face of parent’s own experience and the Government’s own ambition to create a joined up and family-centred SEN system.

Time is running out for the Government to deliver on their promise to end parent’s battle for support. The Children and Families Bill is expected to pass into law in early 2014. It is vital that the changes are made during the remaining stages of the Bill on the House of Lords. Take action today by signing their petition.

Please note the SEN changes introduced in the Children and Families Bill will only apply to England.

For more information please contact policy@nas.org.uk

 SNJ are supporting this petition.  The Children and Families Bill is supposed to make life less complicated for parents and having three appeals systems is in no way, by any possible definition, less complicated.  Nor is it line with the “joint” approach that the whole reform system is supposed to be about.
Sign now and show your support.

#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!

Does your child know “no means no”?

Debs writes….

I am a trainer for my local Safeguarding Children Board and it is a subject I am passionate about.  One of the people who inspires me, as a mum and and as a trainer, is Emily Martinello.  Emily is a Sexual Development Consultant in Nova Scotia, Canada and here she talks to SNJ about the importance of teaching our children to know how to say “no”.

skotan_No-sign“The worst part of my job as a Sexual Development Consultant, is that I am the bearer of bad news.  My suture is education, support, and resources, and I do my best to fix the band-aid burn.

What research shows us is that up to 80% of women and 30% of men with intellectual disabilities are sexually abused before the age of 18.  That is more than four times the rates of their typically developing peers.  What we also believe to be true is that more than half of these abuse situations are chronic, meaning by multiple people, or on multiple occasions.  There are many components contributing to this high number, and there are opportunities for learning throughout the lifespan that can hopefully reduce each one.

No means No

There’s a stage everyone seems to dread, the “nos”.  When children say “no” to everything.  I guess no one likes it because it’s annoying.  I, frankly, love it.  (Full disclaimer: I don’t have my own kids yet- so I love these “stages” more than most!)  I love it because I love that children are learning to exert their independence.  They’re learning the building blocks to consent.

I was at a dance camp a few weeks ago for children and youth with special needs, and listened to a volunteer fight the “no’s” to trying on a costume.  My “Sexual Development” brain was screaming “who cares?  It’s a costume”, but I can see where the volunteer’s helper brain was going “it’s camp, we have costumes, it’s fun!”

Luckily, I was saved by the dance teacher who said “it’s okay, she doesn’t like costumes”.  PHEW!  But how many times does this girl get her no’s rejected on a regular basis? And what is she learning each time?  I’ll tell you: that her “no” means nothing.  That she doesn’t have the right to say no to something.  And really – it’s a costume!  If she can’t say no to that and mean it, how is she going to know to say no to the big things?

Of course there’s a second part to “no”- the hearing part.  There’s a new trend in caring for children, where saying no is a no-no.  Instead, care givers are supposed to say things like “first you need to”, or “not right now”, or “gentle hands”.  The problem with this is that children aren’t hearing “no” enough in a meaningful way.

When we think about sexual development, knowing “no” is one of the most important skills we can teach.  Saying “no” to things like “do you want to clean your room?”, “can you help me out?”, or “do you want grilled cheese for lunch?” is just the beginning.  Eventually, there may be bigger “no’s”- whether it be “sex” as a relationship, or maybe it’s some building blocks to keeping children safe.  Things like “NO, you can’t come in the bathroom”, “NO, you can’t change my clothes”, “NO, I don’t want your help in the shower”.

main_okYes means Yes

There’s some good news, too!  We want children to be able to say YES!!!  There are many opportunities for healthy, loving choices to be made.  This can be things like “do you want to play blocks with me?”, “will you be my friend?” YES!  YES!  YES!  Later on, this could include saying yes to things like, “can I take you on a date sometime?”, “will you kiss me?”, “Can I see a Doctor?” YES! YES! YES! Likewise, hearing “yes” is also valuable.  YES, I want to be your friend!  YES, I want to play with you! YES, let’s go see the Doctor!

Finding opportunities for teaching yes and no are everywhere – it’s the listening to the answer that’s the hard part.  Sometimes it’s all in the way the information is presented, “are you all done?” becomes, “it’s time to clean up now”.  “Let’s go outside, okay?” becomes “we’re going to go outside!”  Be prepared, if you are the one who asks the question, you’ve got to be the one who accepts the answer.

Knowing the No

The thing is, children with special needs don’t always get the chance to really ‘know the no’.  Sure, there may be a brief stage of “no’s”, but the stage is often accompanied by a lifetime of “yes’s”.  As part of education and therapy, compliance is pretty key.  But in the real world, over-compliance is dangerous.  This raises the concern about children being liked- that being non-compliant might look like being unfriendly, unwilling, or unable.

However, typically-developing children don’t typically need to prove that they are friendly, willing or able.  At least not by being testing with compliance.  Children with special needs shouldn’t need to prove this either – in fact, I’d go on a limb and say they just shouldn’t answer that test.  If there’s someone in their life who needs the child to prove who they are, there’s the proof that they’re not welcome.

There’s also another bonus,  once a child learns that they can say “no” and mean it, they don’t need to try it out so often.  We can use the “no stage” as a platform: to listen to, honour, respect, and admire a child’s ability to be a self-advocate.  And ultimately, to set the stage for knowing themselves, No-ing themselves and no-ing others.”

You can find Emily on Facebook Sexual Development Consulting or you can ask questions here.  Emily is happy to write more posts for us regarding sexual development for our children so what would you like advice on?

Review: Let the Rest-e take the iPad strain

Tania writes

I was recently contacted by a lady asking for help publicising a new product called a Rest-e that takes the strain of holding iPads, hardback books or other mobile devices for long periods that children and adults with disabilities might find difficult.

Chime Carlin said, “My friend and I have started a new business designing, making ourselves and selling really useful products but in fabrics that attractive to the eye too. The Rest-e was our idea of a tablet stand that didn’t keep falling over when the touchscreen was used. My friend’s daughter has disability issues that make her hands tired when holding the tablet for long periods and this was our solution.

“Then we found the cable kept getting squashed which weakens the wires and then stops working so, we added a button hole which prevents the wires from being crushed. We added the loop for easy carrying and so it can be hung up on pegs when not in use. The light weight means anyone can transport it and we throw our in the car (they double as head rests as they are so comfy).”

son2-2

Chime’s email came into my in-box just at the right time, as I was looking for something for Son2 and also for myself, as we both find that our EDS gives us the very same issues. I had already tried a goose-neck stand that clamps onto nearby furniture with limited success.

Chime kindly agreed to send one for Son2 to try out and it has been a HUGE hit. It’s a pyramid shape, filled with bean-bag type beans in a hard-wearing cover, that can be custom ordered. We’ve all tried it out and the consensus is, it’s fab!

It is something that we would have bought if we’d seen it online, even if we hadn’t been sent one to try out.

son2-1

They also make a smaller size Rest-e for a charging stand for mobile phones and they make them in various colours and designs. They have a Facebook page at  www.facebook.com/readingrest

The Rest-e retails at £15 and features:

  • Ergonomic design helps reduce neck strain and awkward posture
  • Light-weight and portable, it can be effortlessly carried by children
  • Supports hands-free reading – ideal for Special Needs
  • Facilitates group-sharing activities – enabling you to maximise resources
  • Enables device usage whilst charging ensuring no  time is wasted
  • Versatile – for real books, e-books, i-pads & sheet music
  • “Rest-es” can be coordinated with your organisation’s colours
We are so delighted with the one we were sent in a jolly union flag design, that we’re planning to order more for other family members.
And, Chime, whose company is Betty-May, www.betty-may.co.uk, is offering one lucky Special Needs Jungle reader a chance to win one too. Just fill out the form below for your chance to be picked from the hat by Son2.
Because it’s the summer hols, we’re keeping the draw open until midnight on August 31st 2013 which should give anyone away chance to see the post and enter. 
Enter using the form below. Good luck!
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How to talk to Tigers

How to talk to Tigers?  Why are Special Needs Jungle posting about Talking to Tigers?  It really doesn’t sound like our usual post, does it?

How to Talk to Tigers is written by Jacob Tilley.  Jacob spent seven years living in the forests of India learning how to roar and growl (or so his bio says).  He then decided to write a book about this and he invited Ruby Thompson to illustrate it.  Ruby is a young girl who has autism

2013-03-02 11.29.49

K enjoying a good read

“How to talk to Tigers” is one of those books that as you read it, you know everyone will interpret  differently.

Initially, for me, I was purely looking at the images and thinking “wow”.  It made me remember that we should never limit our expectations.  The illustrations are colourful and fun.

Then my eldest, K, picked up the book and started to read it out loud.  He was in fits of laughter.

The book describes how to talk to “tigers” in different moods, e.g. how to talk to a poorly tiger, how to talk to an angry tiger, a naughty tiger….  you get the idea.  It’s written in rhyme scheme (i.e. the first line rhymes with the second, the third line rhymes with the fourth, etc) and my kids love this and as a mum, I love reading this out loud – so easy and fun.

I think for K, rhyme scheme just makes sense.  There are no shocks, no surprises, lines will rhyme and this is perfectly logical to him.

As K continued to read, between giggles, my youngest son, J, shouted out “this should be called how to talk to K”.  We all laughed but then I read it again later and I realised that J had a point.  One of the lines talking about an “excited tiger” was “they fly through windows, swing from door frames, knock over chairs” and I wondered if there was hidden CCTV in my home that Jacob had access to   So many of the chapters had lines I could relate to, especially the “Happy Tiger”.

I loved this book and it has become one of those that my children often ask for.  We have learned it verbatim by now and so I only have to read half the line and the kids finish it.  We’ve also had some role playing and even K  got involved.  He pretended to be an angry tiger which as any mum of a child who has ASD will appreciate, was a moment of pure joy for me.

What books do your children enjoy?

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

 

 

Parental Co-Production : Your views needed

Our recent post on Parental Co-production really seemed to hit home with many of you.  We received several comments on the blog, on our Facebook page and via our twitter account, so we wanted to expand this and find out more.

smoke-mirrorHave your experiences of parental co-production been positive?  Have you been involved in a project from the beginning and feel that you have really influenced the outcome?

What about with your child – have you (and they) been truly listened to when you have been looking at goals for them and how they can be achieved?  Or did you feel as if everything was decided on your child’s behalf and your views weren’t even considered?

We are looking for parents who would be happy to share their experiences with us.  Or perhaps you are a practitioner who appreciates the value of true co-production but struggle to get your colleagues or manager on board?  Would you be happy to talk on camera via Skype with us?

If you would like to learn more and perhaps get involved, then get in touch by completing the contact form below.  We would really like to hear from you.  Completing the form does not commit you to anything, other than a chat.

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)

Pupil ranking plans are an epic fail for SEN children

Oh dear.  We’ve always said communication is an issue with the SEN reforms but it’s fairly obvious that it spans education as a whole.

Can someone please let David Laws and Nick Clegg know about the reforms going through and let them have the memo about “promoting inclusion”.

When the Department for Education launched the Green Paper, two of their proposals were to give parents a real choice of a range of schools and give children with statements the right to express a preference for any state-funded mainstream or special school.

However, this morning Mr Laws and Mr Clegg have announced a consultation about plans to change performance measures for schools.

  • Pupils aged 11 would be ranked in 10% ability bands across the year group
  • Test results would be divided into bands of 10%
  • Parents will be told how their child “measures up” to their peers
  • A tougher minimum level of achievement for schools (below which an Ofsted inspection would be triggered
  • This is currently 60% for Sats tests but would rise to 85% under the proposed change

So, let’s just consider this.

  • Would a mainstream school realistically welcome children with SEN if this could risk bringing their minimum level of achievement below 85%?
  • As a parent of a child with SEN, I already know that my child is not achieving at the same rate as their peers.  Will introducing a new measurement help them to do better?
  • How would a young person with (or without) SEN, who has tried to the very best of their ability, feel when they find out that their hard work wasn’t good enough and they were banded in a low percentile?  Will introducing a new measurement help their often already-fragile self-esteem?
  • Is it just a rumour or do all children develop at different rates, based on their age and family dynamics?   Will introducing a new measurement put a stop to that nonsense?
laws

Epic Fail, Mr Laws

Speaking on BBC Radio 4 Today programme, Schools Minister, David Laws said he thinks that levels such as 2a, 3b, “Mean almost nothing to parents,”  

Well, here’s a suggestion, why not just explain to parents what they do mean?  That would be an awful lot cheaper and as a parent of three children, I found out what they meant (and any parent who is interested in their child’s progress will have done the same).  

Therein lies the issue, there will always be parents who are more engaged than others and introducing new methods of measuring children’s achievements won’t encourage parents who are not engaged to suddenly become the type of parent who pushes their child to do better.

Mr Laws also said that the individual score won’t be published nationally and children won’t be told the results, only the school and parents will know.  How does he think parents will find out how their child measures up?  Would that be a letter being sent home via their child’s school bag because we all know that children will never look at them?  Or are we going to put the results online and password protect them – because no child can ever access the information that way, can they?

And parents are not going to discuss it with each other or their friends within ear-shot of the kids? And the kids aren’t going to just ask outright? Or brag if they got a great score within the hearing of less able or SEN children?

This has to be, in our opinion, one of the worst thought-out proposals to have come out of Westminster for quite some time!  Transition to Secondary is an issue for all children, especially those with SEN.  However, the proposals being presented today show a real lack of understanding of children, SEN, parents, schools and inclusion.

If I was to score this proposal, in the manner being proposed, it would definitely be in the 0-10% band.  Mrs Laws and Mrs Clegg, I am sorry to have to tell you that your sons are performing way below their peers (but don’t worry, we won’t tell them if you don’t).

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

Research links gluten sensitivity to autism

This report is from Medscape Today and is about a study in PL0S One. Links at the bottom.

gluten freeA subset of children with autism have increased immune reactivity to gluten, but the mechanism of this increased reactivity appears to be distinct from that involved with celiac disease, new research shows.

The results also indicated an association between elevated antibodies to gluten proteins and the presence of gastrointestinal (GI) symptoms in the affected children.

“There is evidence that immune system abnormalities are associated with symptoms in a substantial number of individuals with autism,” senior author Armin Alaedini, PhD, assistant professor of medical sciences in the Department of Medicine and the Institute of Human Nutrition at Columbia University Medical Center, New York City, told Medscape Medical News.

“In addition, several studies have evaluated gastrointestinal symptoms and defects in GI barrier function in affected patients. Some have pointed to higher frequency of celiac disease, family history of celiac disease, or elevated antibody to gluten among autistic children, but these studies have been inconsistent about such associations,” Dr. Alaedini said.

Read the rest of the Medscape Today report here (You may need to register for free if the whole content is not immediately visible.)

The study was published online June 18 in PLoS One which is an open access journal.

I know many of you are not surprised by this report – do you follow a gluten free diet with your children? If so, what results have you seen? Leave a comment – we’d love to hear and share your views on this.

 

 

Mindfull: A new online mental health service for teens

Tania writes…

A new online service for adolescents with mental health problems is being launched today (Friday 5th July 2013).

mindfull logoThe service at mindfull.org is aimed at young people aged 11 to 17. It’s offering advice, support and the chance to talk online and confidentially with counsellors.

The young person can choose the type of support they receive and, because MindFull is online, it is available anywhere at anytime whether it’s counselling, self-help or mentoring from another young person who has been in a similar position and is now able to help others.

Young people can suffer a huge range issues that stem from depression and  anxiety such as self-harm, anorexia, bulimia, substance abuse and even suicide attempts. The root cause may not be clear to see but there will be a root cause (physical and/or emotional) that needs to be addressed as much as its effects.

MindFull is here to help you get better; and we’ll also give you tools and tips to help you get through those tough times that may arise in the future. We know that asking for help is not always easy, but MindFull is a safe and trustworthy space where you can choose the right support for you.

However you feel, remember that you’re never alone: when you’re ready to talk, were ready to listen. MindFull is open every day, between 10am and midnight.

Launch video


Young people often find it difficult to start conversations about their mental health problems, fearing they won’t be taken seriously or be told just to “get over it” or “pull themselves together”.

Then, when they do pluck up the courage to open up about their feelings, a concerned parent may take them to the GP who may refer to CAMHS, the Child and Adolescent Mental Health Service. As many of us know, the quality of CAMHS can be variable and a bad experience can make matters worse.

Helping as a parent can be  easier said than done

At present we are involved with CAMHS and have, this time round, been pleasantly surprised although this hasn’t been the case in the past and I know many of you have had bad experiences

Child mental health is a growing issue and any service that can help is to be welcomed. As a parent, it is of course, always best to foster an environment at home where your children can feel comfortable tackling difficult subjects with you. Sometimes it’s best just to keep your own mouth shut and not feel you have to solve your child’s problems right off the bat – non-judgemental listening is what is needed.

Oh, but that is SO easy to say, isn’t it? Even as I typed that, I was thinking that I needed to learn how to do that – I know what’s needed, but I just want so badly to ‘fix’ all my children’s problems that I go about things in the wrong way and then berate myself later.

I am what’s known as ‘A Rescuer’, ready to leap in and save any situation from disaster. I hate to see others’ suffering and pain because I feel it myself. I bet I’m not alone in this. And although sometimes it works out, with your children, they may not tell you in the first place and when they do, they need support but not fixing. They have to find their own way and although parents can be a vital source of strength, they will almost always need impartial help as well or instead.

If you care for a young person/people either as parent /carer or in a professional capacity, take a look at this service and pass it on. It’s a tough old world out there and our youngsters need all the help they can get.

You can find Mindfull on social media at the following locations:

BBC Radio 4’s Today programme had two interesting features about this this morning. You’ll be able to listen again later today at this link.

Read other SNJ posts about child mental health:

What has your experience been like? Do you think a service like this is a good idea?  Add your comments and opinions below!

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.

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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.

Children and Families Bill – you need to take action now [2]

Debs writes

We recently wrote about some of the changes being proposed in the Children and Families Bill that will not benefit families.  We looked at the duty to identify SEN, the annual review, the time limits and also the format of the Education Health and Care Plan (EHCP).

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Today, we want to raise your awareness of other issues with the proposed changes and would like to thank Jane McConnell and all at IPSEA for helping to raise awareness of these.

Admission to Special Academies:

At present any child with SEN but without a statement must be educated in a mainstream school.  In order to attend a Special School, a child must have their needs assessed and the LA then have have a duty to fund the provision identified by the assessment.  This, in principle, protects children being placed in potentially inappropriate schools.  There are no exceptions to this in the current legislation.

This principle still exists in clause 34(2) of the proposed Bill but an exception has been introduced. Special Academies (including Free Schools), will now be able to admit children or young people with SEN permanently into the school without them having an assessment or an EHC Plan in place – if they are given permission by the Department for Education.   Now, in theory, this sounds great.  Getting your child into a special academy placement without having to go through the statutory assessment process (especially as the new Bill doesn’t put time limits on the process).  However, there are two issues with this:

1.  It  undermines the principle that mainstream schools MUST be enabled to make provision for ALL children without a statement/EHCP and also MOST children with statements/EHCPs – so if a mainstream school knows there is a Special Academy nearby, there will be a strong temptation to point the parents in their direction, rather than take the child themselves and have to cater for their needs.  So no aspiration necessary for the mainstream school to improve their teaching to include children with SEN with or without a statement or EHCP; and

2.  If a child with SEN is admitted to a Special Academy without EHCP – what happens when things go wrong?  What if the Academy cannot meet the needs of the child?  What if the child, due to no assessement of needs, is placed in the wrong Academy?  There is no duty for the LA to fund the provision without an EHCP and the parents will have nothing to challenge the school or LA with if there is no EHCP.  What about the Health and Care provision?  If no assessement or EHCP, how will the school and family know they are meeting the Health and Care needs of the child?  Yes, there will be minimum standards that all schools must adhere to – but let’s be honest, have you ever tried to find your LA’s miminum standards and if successful, actually make sense of them?   There is of course the NHS constitution and the Children’s Act but very often, to access the Social Care side of support, a statement is currently needed so no EHCP could, in theory mean, no access to that support.

We need the DfE to seriously consider this option.  Having an assessment ensures that the child’s needs are accurately recognised and provision put in place.

Re-assessment of Needs:

At present, a re-assessment is the same as an assessment.  If a child or young person’s needs change, then a further assessment can be requested and if agreed, then the LA has to comply with the statutory assessment duties.  This includes time limits, consulting with the professionals named in the Regulations (education professionals, educational psychologist, social services and health services).

However, in the proposed Bill, a new concept of re-assessment is being introduced.  LAs will be allowed to decide what format a re-assessment takes.  There will no longer be the same duties to consult and obtain evidence from the professionals named above and they can also choose to review just one area of the EHC Plan.

Also, there is no duty for the LA to conclude the process of re-assessment at the two points which would trigger a right of appeal to the SEND Tribunal (i.e. when the LA decides not to issue an amended EHC Plan or when the LA issues a new EHC Plan with which the parent disagrees).

So basically, if your child’s needs change, the LA can re-assess but may only reassess one part of the Plan, e.g.  the health part but no need for them to reassess the Education and Care part of the Plan.  As we all know, each of these impacts on the other which is why the idea of an EHC Plan was so popular with parents.  One plan that looked at their child holistically, no need to tell your story more than once, everyone working together, etc.  So why have a joint plan, why jointly commission, why fund “Working in Partnership” workshops if once the EHC Plan is published, any re-assessment reverts back to individual agencies.

If you are not happy with the proposed amended EHC Plan or if the LA decides not to issue an amended EHC Plan, then the proposed Bill (in its current form) does not give you any right to appeal to the SEND Tribunal.

Again, this Bill is introducing changes which, if we are honest, are based on every LA existing in a world we don’t live in.  Yes, in an ideal world, LA’s would never not re-assess, they would always produce an amended Plan if the child’s needs changed, the plan would always look at the child’s need in every aspect of their life and the LA would unreservedly support families if their current school did not meet the needs of their child.  However, we live in the real world.

We need to take action now, before the Children and Families Bill becomes the Children and Families Act.  If you want to know how to take action, please visit the IPSEA website

Children and Families Bill – you need to act now [1]

Debs writes….

sen reform special needs jungle

Last week, I had the pleasure of listening to Jane McConnell (IPSEA‘s Chief Executive) speak at the Towards a Positive Conference.

As Jane spoke, I realised that the messages about the Bill are not getting out – either people think the changes don’t affect them or the changes just won’t happen.

However, if you have a child or young person aged 0 to 25 with ANY additional needs, then you need to take five minutes out of your busy day (and as we are parents too, we know how chaotic our days can be) but the changes being proposed WILL affect you and not all of the proposed changes will help families.

This week we will be sharing with you the changes you need to be aware of and also saying how you can take action.  Please share these posts with your friends and colleagues.

Which proposed changes will reduce or remove your current rights?

Duty to Assess SEN:  At present, there is a PROACTIVE duty to identify the needs of children and young people with SEN via assessment:  “Proactive = Acting in advance to deal with an expected difficulty”.

In the Children and Families Bill (in its current form), this has been reduced to a duty to identify.  “Identify = To ascertain the origin, nature, or definitive characteristics”.  There is no duty on the LA to be proactive.  This is a weaker duty on the LA and will cause issues for many parents who are just entering our Special Needs Jungle looking for help and support for their child.

We need the DfE to ensure that LAs are proactive in identifying needs.

Time Limits:  At present, your LA has a maximum of six weeks from receiving the request for statutory assessment (i.e. starting the statementing process) to decide if they will assess and then they have a further 10 weeks to decide whether they will issue a statement.

The Children and Families Bill, in its current form, will not provide a time limit by which LAs need to make a decision about whether they will issue a Education Health and Care Plan (EHCP).  Once they decide to issue, there will be a time limit of 20 weeks (from the initial request) to issue, but as a mum who has gone through this process four times (once to be turned down), I can remember how anxious I was after my application had gone in, waiting to see if they would agree to assess.

Then, again, the stress I felt when I was waiting for the decision as to whether they would issue a statement.  However, I had taken advice and knew that there was a time frame in which the LA had to make a decision and these dates were clearly marked on my calendar.

I cannot imagine the pressure that parents starting the process  under the Children’s and Families Act will face without the security of time limits.  Yes, some LAs will do this promptly and will act fairly but as we all know, in the real world, there are also many, many LAs who won’t.

We need the DfE to be prescriptive in this.  This Bill is supposed to make our life less stressful, not more!

1209643_dream_graphEducation, Health & Care Plans:  At present, the law says that a statement has to be in a standard format. As set out in the SEN regulations it has to “be in such form and contain such information as may be prescribed”.  However, the Children and Families Bill, in its current form, no longer requires regulations to prescribe a standard form for EHCP.  Basically this means each LA can produce their own version.

Currently Part 2 of the statement has to state the educational needs of the child.  Part 3 has to state the provision to meet the educational needs in part 2.  The provision must be specific and also quantified.

If LAs can produce their own version of EHCP with no regulations about what they have to put in there – what can I say?  We would all love to live in an ideal world where every LA would do everything  possible to meet the needs of every child and no LA would even dream of  spending valuable resources on very expensive legal representation to do battle with parents on their behalf.

Unfortunately, however, we all have to live in the real world  – with budget cuts, lack of resources, lack of working in partnership and in some areas, total lack of empathy and of course, the hugely expensive legal representation that the majority of parents cannot compete against.

We need the DfE to regulate the content of EHCPs and ensure that the educational, health and care needs of our children and young people along with the educational, health and care provision to meet those needs is in every EHCP.

Annual Reviews:  Currently, there is a duty on LAs to inform parents, children or young people of the outcome of the Annual Review.  Once this is communicated, parents and children/young people can appeal to the SEND tribunal if they are unhappy.  However, the Children and Families Bill, in it current form, no longer has this duty.  So, LAs don’t, in theory, have to tell you.

In addition, there are  current duties such as enabling parents to participate in the decision making; the requirement to obtain up to date information before an Annual Review and share it with parents; parents to be able to make their views known and for those to be circulated; the compulsory attendance of professionals at the review meeting at the key states of a child/young person’s education and transition arrangements out of education.

Guess what?  Yes, I think you are starting to get the general idea – there is no duty for any of the above in the Children and Families Bill.

We need the DfE to address this.  Once again, some LAs and educational settings will do all of the above without legislation in place but so many more will only do what they absolutely have to.

If you want to know how to take action, please visit IPSEA’s website

We will be posting soon about some other changes which will reduce or remove your current rights and some outstanding issues with the proposals of the Children and Families Bill.

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.

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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.

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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

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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: Join me on the Carer’s Circle Line

Debs writes….

During National Carers Week, I think we all give more thought to what being a carer actually means.  Most of the time, we are the same as the young carers out there who think “it’s just what we do” but during this week, we can’t open a paper or watch the tv without the impact of caring jumping out at us.

I always think of being a carer as travelling on ……

Carer's Circle Line

We spend our good days at the top of the Circle Line, relaxed and confident.  These are the days when the services have actually worked together, you are getting the support you need, your child or young person is getting the support they need.  Perhaps you have won a battle to get your child into the school you need,  perhaps you have managed to get a place on a Young Carer’s event for your other child or perhaps you have just managed to get more than three hours sleep.

Sadly, however, we also spend days at the bottom of the Circle Line, withdrawn, exhausted or despairing that things may never get better.

When we are having a good day, we all know how quickly one little thing can send us spinning down to the bottom.  Then when we are at the bottom, it is so much more difficult to get back to the top.  It’s like being on the Pirate Ship at the Funfair – you swing back and to until you get enough momentum to hit the top.

You start to climb back up the side of the Circle Line but  you hit “self pity” and it is so difficult to get past here.  Everyone expects you to be there; in fact a lot of people find it easier to deal with you there as it fits in with their idea of how you should be acting.  However, this just knocks you back down to sorrow and anger and you have to start the climb again.

I firmly believe that when we all work together, the practitioners and others involved in my life, should be able to give me that little push (I do mean metaphorically) and help me get back to the top of the Circle Line.

Then, because we just refuse to fit into boxes, I also have to point out that although I may be “relaxed” today when you meet me, I may not be “relaxed” the next time.  I may be “relaxed” and “confident” but my husband may be at “despair” and then don’t forget my children will possibly be somewhere different too.  The dynamics of the family can be our biggest strength at times but can also be the weakest link.

One of the other issues with the Circle Line is that it’s not easy to get off.  The other lines offer universal services so access to them is not always available.  If we continue the Circle Line analogy, then this is when there are only escalators where we need a lift or only  visual signs when I cannot read.  Those who work with our families can usually jump off the Circle Line and access Universal services.  One day, we can only hope that this will be a possibility for all of us too.

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…

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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

No change please! ASD Son2 and the hair tong dilemma: Can you decide?

Tania writes:

Yesterday it was my birthday and I was very pleased to receive some wave-making hair tongs to bring a spot of variety to my poker-straight locks.

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The scene of the crime

I gave them a try that evening as we were going out for a family dinner to our favourite Italian (Il Colosseo in Farnborough in case you’re interested). I was pretty pleased with the results and went to show Asperger’s Son2 (almost 14) who was, as usual, ensconced in the Technolair.

He broke off from his laptop for a moment to have a look and I could tell by his face that it wouldn’t be good.

“You look like a Disney Princess,” he said. “I don’t like it.” He gave me a hard glare and turned back to his computer.

I was, actually, rather pleased with looking like a princess, especially given my advanced years – although there is always the danger of looking a bit mutton.

This reminded me of when I (obviously mistakenly) wore some purple crushed velvet leggings- something quite different and unusual for me. Son2 pointed at them and asked, “What is that fiasco? Take them off.”

When I told him I wasn’t going anywhere and no one would see me he replied that he would see me, because, of course, that was all that mattered. I have never worn them again.

Son2, like many children with ASD, finds change very difficult and for him, this is only getting worse as he gets older. It particularly includes anything different about me. As the central person in his life, he likes me to be the same at all times. He also doesn’t like me being away, which can make life difficult.

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Don’t mention the hair…

When we got to the restaurant, me still with the dreaded waves intact, I made the mistake of mentioning to my sister-in-law, within Son2’s hearing, that he was unhappy with my Disney Princess look. This, of course, reminded him of his unhappiness and that, coupled with the noise of the restaurant, was too much. He refused to speak or to order any main course or eat any birthday cake and sat plugged into his iPad for most of the rest of the evening.

It was only near the end of the evening, when he pulled up the familiar images on his iPad of his carefully-painted Warhammer figures that he began to relax and managed to have some after-dinner mints.

I could have kicked myself for mentioning the hair when we were at the restaurant. It’s a bit like the Fawlty Towers German/war scene: Don’t mention the hair. I mentioned it once and I think I got away with it.  I got away with it in the house, but alas, the second time meant the evening teetered on the edge of disaster.

I think it illustrates how easy it is to slip up when you’re walking on eggshells most of the time. Life is not normal, even though your kids have no visible sign of disability. I wasn’t thinking about the repercussions of careless talk.

When we got home, I tied my hair back but it wasn’t enough. This morning I went into him with freshly washed and back-to-normal straight hair. He opened his eyes, looked at it and sighed happily. Everything was as it should be.

So what do I do with the hair tongs? Do I keep using them in the hope he’ll just get used to them or pack them away in their box? Help me out and vote below!

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

Echolocation (aka Dolphin Boy)

Deb writes..

Some of you may have read a report this week about the use of echolocation in blind children.  In the article, it states “New research from the University of Southampton has shown that blind and visually impaired people have the potential to use echolocation, similar to that used by bats and dolphins, to determine the location of an object.”

As you will know my youngest son is visually impaired and in April 2010, we worked with Daniel Kish from World Access for the Blind.  We had been introduced to Daniel via a lovely lady called Sarah from Common Sense (a parent led charity supporting and empowering parents of children with VI in the UK).  We had approached Sarah as we wanted J to be using a cane but here in Kent, the practice (at the time) was to introduce canes when a child was 7 or 8.  However, me being me, I had researched the use of canes for hours and chatted to other parents across the globe – thank goodness for Facebook – and I wanted J to have a cane much earlier.  Common Sense loaned us a cane and Sarah introduced us to Daniel Kish as he recommended using a longer cane than was current recommended here.  The general practice here is to provide a cane which measures from the floor to the user’s sternum whereas Daniel advocates using a cane which measures from the floor to the bridge of the user’s nose.

Jamie caneWe were very fortunate that Daniel would be in the UK shortly after we contacted him and we arranged for him to spend three days with us.  Daniel is best known for his work using echo-location and we had our first introduction to it when Daniel arrived.  I was amazed to watch this man (with no vision) walk confidently around our home and the local area.

We spent the first day in the local park, walking along a long path which led to a fountain.  Daniel explained how using the sound of the fountain as a target for J would help him walk independently – yes, I was the mum who always held his hand.  Along the path, there was a row of trees and then a large open space.  Daniel explained to J that using a small clicking noise would help him know when the trees were around him and when it was the open space.  I am sure we must have been a very entertaining sight in Kent that day, Daniel and J with their long canes and me with my eyes closed, making clicking noises as we walked along.    But do you know what?  It really works.

You can try it yourself – sit in a quiet room (probably best once the children are at school) and close your eyes.  Hold your hand in front of you at arms length and make a clicking noise; then move your hand closer to your face and repeat the clicking noise.  You will hear the difference.  When an object is closer, the sound is louder and deeper.  You can even do this using a wall in the house – close your eyes as you walk slowly (and carefully) towards a wall and click.  As the wall gets nearer, the sound gets louder.  Then walk towards an open door and hear the difference.

We spent the next two days with several of the practitioners involved in J’s life.  His mobility officer, his VI play therapist, his nursery staff and another mum of a child with VI came along too.  It was fascinating for me, as the wealth of knowledge in my house was just outstanding.  As a mum, it was like a Masterclass on all things VI.

Daniel spent time explaining to J how to differentiate size with the clicks.  This involved lining up several glasses, bottles etc and asking  J to tell us which was the largest, smallest, plastic etc.

jamie homeIt was three intensive days but three days that changed a lot of what we did.  J decided that clicking wasn’t for him so he uses his voice.  He is my son and like me, he likes to chat and if anyone has met me and thinks I talk a lot, they need to meet him and realise I am a rank amateur in comparison.  Due to the fact that he is still a child and less than 4′ high, his voice is a great navigation tool for him as objects are still very large around him.  Cars and garden fences are large in comparison to him so this works well for now.

We are now working on the clicking more, as we appreciate that as he gets older, the talking may have to reduce in quantity (or maybe we are just hoping).  We will spend time out as a family and often we all click just to encourage J to do the same.  We are so used to people staring at us as a family that we no longer have any worries about how we are perceived by others.

The local and national press covered the story and J became known as the Dolphin Boy.  Sarah from Common Sense had worked with Daniel and her son was known as Bat Boy.  The media coverage was quite fun to do ; it really helped to raise awareness and of course, I got to sit with Ben Shephard on the GMTV sofa.

You can see the BBC video here and World Access for the Blind have several links to other coverage on their site

Labels: Love or Loathe them?

Deb writes…

Are labels a help or hindrance?  Do you love them or loathe them?  Do they change the way you or your child are seen?  Do they change the way you or your child are treated?

What about the labels given to the parents?  Oh yes, we all know they happen.  I asked a group of friends what labels they had been given by family, friends and practitioners and if they thought they impacted on the way people interacted with them.  Some of their responses made me genuinely laugh out loud but some were just a touch too close to home.  So what labels are parents given – do you recognise yourself in any of these?

Labels c. SNJThe Bubble Wrap parent.  Also known as a Cotton Wool parent.  This parent is judged as being too protective, hindering their child’s development.  They are seen as not allowing their child to experience life or not allowing their child to take normal risks.

The Bolshy Demanding parent.  Also known as the Rottweiler parent.  This is the parent who is educated and knows what the standards for services should be.  This is the parents who refuses to take “no” as an answer; the parent who will stay up all night reading the Education Act or the Equality Act so they can challenge decisions made.  This is the parent that the good practitioners admire and the bad practitioners detest.

The Competitive parent.  Also known as Oh no, here they come parent.  This is the parent that other parents dread bumping into.  The one who wants to constantly tell you just how much harder it is for them than you.  The one who makes other parents walk away from support groups believing they don’t belong there as their child isn’t disabled enough.

The Coping parent.  Also known as the Brave parent.  This is the parent who, from all appearances, seems to be dealing with everything perfectly.  They just get on with it – or so it would seem.  This is the parent who never asks for help and rarely, if ever, complains officially.

The Helping parent.  Also known as the Hindering  or Controlling parent.  This is the parent who supposedly hinders their child’s development by helping them too much.  The parent who will do “things” for their child instead of allowing their child to learn to do it themselves.

The Neurotic parent.  Also known as the Over Anxious parent.  This is the parent who looks for problems that don’t exist.  The one who refuses to accept “they’ll do it when they are ready”, the parent who thinks their child is not developing at the expected rate.

The Unengaged parent.  Also known as the Hard to Reach parent.  This is the parent that doesn’t access services, doesn’t respond to surveys; the parent who doesn’t always show up for appointments.

SuperMumAnd let’s not forget everyone’s favourite – the Special parent.  Also known as the Super Hero parent.  This is the parent who  gets told   “I don’t know how you do it”, “I think you’re amazing”  “I wouldn’t be able to do what you do” and the ever popular “only special people get special children”.

So which label fits you?  If you are anything like me, then you will have heard most of these at one time or another.  Usually I am known as the bolshy, demanding rottweiler (and yes, I was actually called that) and the coping parent.  Oh, and of course, the “Special” parent.  Which means that when I find myself having a bad time and not coping, no one quite knows what to do with me.  I had been put into a lovely little box and I fitted in there nicely – how dare I come out of it!

Often, this is what happens with our children.  They are given a label and society/family/practitioners all have different expectations of what that label means.  For example, Autism can mean “rain man”, “no eye contact” or “just naughty” depending who you speak to (and how your child presents at that particular time) but as any parent will know, our children are individuals and have their own personalities.  They also have good and bad days – why should a label change that?

We often label practitioners.  Supportive, waste of time, self-interested, my life-line, pen-pusher and the list goes on.  How often though, have you had met a practitioner and thought they were fantastic, only for a friend to be shocked because their experience had been very different?  Does that mean practitioners are individuals, have their own personalities and have good and bad days too?

So, if this applies to our children and to practitioners, then obviously this means we too are individuals with our own personalities.

Why should a label change that?

Today is Pathological Demand Avoidance (PDA) Awareness Day

The PDA Contact Group have guest written a post for us – if you are experiencing this with your child, please get in touch.

PDA is a very unknown, rarely spoken about and unrecognised ‘Autism Spectrum Disorder’.  The condition was first recognised in the 1980’s by Professor Elizabeth Newson .  PDA has always existed but it was Newson who first saw the striking similarities between these groups of children and proposed that there was sufficient evidence to warrant the inclusion of PDA as a separate sub group within the ‘Autism Spectrum’.

If you would like to learn more about PDA please click on the link here below.

It is vital that PDA becomes more recognised and diagnosed by clinicians the world over.  Across the UK diagnosis of PDA is still very patchy because it is only recognised in a few Local Authorities.

Attachment-1 At the moment many children are described as having PDD-NOS (Pervasive Development Disorder Not Otherwise Specified), A Typical Autism or Asperger’s along with a host of co-morbid disorders including Personality Disorder, ADHD, ODD, Attachment disorder or simply referred to as just being naughty leading to parents being accused of poor and ineffective parenting.

None of these currently used terms accurately describes or provides parents with the correct understanding or strategies that at PDA label does.  One label, one diagnosis, one profile and one set of strategies and handling techniques, now doesn’t that make more sense than a montage of ill fitting ones?  The National Autistic Society (NAS) and the AET both recognise PDA. It is about time that PDA is recognised throughout schools, practitioners, therapists and the wider community and by organisations such as NICE.

Correct diagnosis essential

The diagnosis of PDA provides parents with the correct profile for their children and sign posts them to the correct support groups and strategies.  This is vital for the emotional well-being and long term prognosis for these individuals.  A collection of ill fitting labels that are mashed together to try and describe the complexities of this child are unhelpful and do not provide parents with the correct sign post.  Early diagnosis, recognition and intervention can lead to a much more successful outcome for these individuals.

There is currently a huge surge from parents and a handful of professionals who are desperately campaigning to raise the awareness and profile of PDA.  Recognition and numbers are growing and PDA is really beginning to snowball with more and more parents joining the PDA support groups and demanding the correct support, help and diagnosis from their local authorities.

The time for change, recognition and respect for parents who do such a wonderful job raising their children, with next to no support from many of the professionals involved has arrived.  The time for change is now and even if PDA is not in a diagnostic manual that doesn’t prevent any one who is a professional from researching the information that is available, having an open mind and seriously considering if any of children that you come into contact with would benefit from the diagnosis and strategies that PDA offers.

New resource page

The following Resource page, very kindly compiled by Graeme Storey, is a one stop shop for everything that you need to know about PDA.  If you are the parent of an ASD child who just doesn’t appear to be typical of an ASD presentation, the parent of a child with extremely challenging behaviour or if you are a professional that is willing to be open- minded and explore the concept of PDA then please click through to this link.  You will not regret it and with an open mind you could transform lives.  The parents and children that follow in my footsteps must not go through the hell and turmoil that Mollie and I have experienced on our journey.

The PDA Contact Group is our flagship forum and group but they desperately need funds to become a registered charity.  When they become a registered charity they will be able to apply for much needed grants and funding.  Long term we are hoping that the PDA Contact Group will be able to update their website, grow and evolve in line with the increasing amount of members and awareness, provide parents and professionals with more support and information and eventually become, to families affected by PDA, what the National Autistic Society is to families affected by Classic Autism or Asperger’s.  Please show your support to the PDA Contact Forum by making a small donation, details can be found here.

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.

Is this ASD research a potential game-changer?

oxytocinThere is new research and findings about causes and potential therapies for autism every week, but the following caught my eye in particular. I’ve reproduced a section below and you can link through for the remainder.

The following article snippet is from Medscape Medical News reporting from the 12th Annual International Meeting for Autism Research (IMFAR)

 

The research has found that intranasal oxytocin appears to normalise fixated or restricted interest, a core deficit in autistic spectrum disorder (ASD).

This expands the spectrum of normalising effects now being reported for intranasal oxytocin, essentially “completing the picture” of how the neuropeptide ameliorates the 3 key distinguishing features of ASD.

“In autism, there are 3 basic deficits — social communication, repetitive behavior, and fixated or restricted interest, where children get fixated on a particular pattern or sensory stimulation and have difficulty paying attention to other, more socially relevant cues,” Lane Strathearn, MD, PhD, assistant professor of pediatrics, psychiatry and behavioral sciences, Baylor College of Medicine, Houston, Texas, told Medscape Medical News.

“So this is the first time that this particular aspect of autistic behavior has been examined in relation to oxytocin, and we’ve shown that oxytocin has some effect on all 3 aspects of autism behavior, including now fixated interest.”

The study was presented here at the 12th Annual International Meeting for Autism Research (IMFAR).

You can access the rest of this article on Medscape here although you may need to register for free first.

When you’ve read it, do come back here and leave your views – is it just more of the same or do you think this is a potential game-changer?

 

Special Needs Jungle Drums!

Some great stories, news and blogs from the last week, curated from us, just for you.

  1. This is next week – so still time to mark the week!
  2. Congrats to Debs at Aspie in the Family…
  3. An interesting first hand account.
  4. Congrats to Renata and Swan UK on their first birthday
  5. A lovely post from Susan
  6. Get ready to expunge the word Asperger’s from your vocab! I’m off to a workshop on Monday with Tony Attwood & Carole Gray and I’ll be asking him about DSM V categorisation – will he need to change his book title?
  7. A very interesting article, not to be missed.

Want to know what SEN, AAC, SALT, etc st

Want to know what SEN, AAC, SALT, etc stand for? @kent_peps have a new SEND glossary http://ow.ly/kTo7y

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.

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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

SEN protection to age 25 – unless you go to university

I’ve been pondering on the SEN section of the Children & Families Bill for a while and I am perplexed by what seems to be an anomaly for some 18-25 year olds.

One of the aims of the extension up to 25 is so that young people can avoid a ‘cliff edge’ and they are supported through further education and training. If a young person with SEN is what is termed ‘NEET’ or ‘Not in Employment, Education or Training’, it is intended that they will be encouraged back into the system with a reinstated Education, Health and Care Plan.

Apprenticeships will be covered by the EHCP, as will further education. But not Higher Education at universities. I realise that most universities have pastoral care services, with lots of advice available, and a browse through several university websites reveals an impressive array of help to ensure equality of access and even counselling services.

sad studentBut what bothers me is that without an EHCP, it isn’t statutory. So, depending on which university you choose, you may or may not get the support at a level that would meet the same criteria or above as might be set out in an EHCP and the legal backing to make sure that this happens.

And if there is no mandated regular review, it will be much easier for a student to fall through the cracks. For example, a young person with Asperger’s, desperate to fit in, initially gets help and is thought to be doing well and there is little concern for his well-being. But in fact, they begin to struggle socially and then academically and then mentally. They may be away from home, or uncommunicative or not wanting to admit they aren’t coping. The student’s difficulties are not flagged up until things have deteriorated significantly because the university is not under any statutory duty to monitor regularly or ensure his needs are being met.

Of course, at a university with first-rate pastoral care, this may well be picked up. But if it isn’t, then what? All the work, support and progress that has been done with the young person while they were under 18 will be jeopordised.

Naturally, there are difficulties in bringing universities into the fold. They  have their own ways of doing things. There is the Disabled Student’s Grant and lots of advice for faculty staff such as this provided by the Physical Sciences Centre. A student may also be out of his home authority, which brings its own difficulties (not to mention vulnerabilities).

But this SEN reform process is about ‘blue-sky’ thinking. The busy beavers at the DfE have already managed to bring in a duty on health to provide when they initially said it wasn’t possible. They managed to include Independent Special Schools when it was thought it would be a difficult hill to climb and they deserve much praise for this.

I have seen that there are many bright young as well as more experienced brains in the DfE with tons of energy working on this reform – I bet if they were set the challenge of bringing in universities, they could do it.

Otherwise it just seems to me that if you’re a practical sort and opt to take on an apprenticeship, your SEN will have the legal protection and support of an EHCP. But if you’re a geeky, academic type who wants to go to uni, well, er, good luck with those special needs. Just make sure that the university you choose not only has the course you want but the pastoral support as well, because you’ll have no legal redress through a tribunal.

An article in the Guardian in 2010 highlighted the difficulties faced by students with disabilities. I believe that having universities covered by EHCPs could boost the number of disabled students finishing their studies and thus being better equipped to lead a productive and rewarding life and less likely to be unemployed.

Maybe my fears are unfounded – my boys are below university age but are in the GCSE stage, so it isn’t a million miles away. I would really like to hear about your experiences on this and whether you think universities should be included in the EHCP remit.

*Addition: This article in the Guardian underlines my point: If the EHCP covered universities, it may well be a different story for the students in this story

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….

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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

Working with parents as partners – a practitioner’s top tips

Debs writes…

The Children and Families Bill, currently working its way through parliament is very big on practitioners in education, health and social care working in partnership with parents – or “co-production”.

Now, this is clearly a fine goal, but it is going to require a shift in attitudes on all sides and an extensive programme of re-training in some quarters as well. For some, it will be easier than for others and there are already examples of great practice that need to be identified and held up as examples for others to learn from.

If you search the web, you will find several parent views on co-production but we thought it would be useful to get the views from a practitioner (we used to call them professionals, but then, what does that make us?) about the challenges, issues and positives of co-production.

Phil Brayshaw

Phil Brayshaw

Phil Brayshaw is a registered nurse for people with learning disabilities and has post-graduate qualifications in child mental health and family therapy. He has worked in health and social care for over twenty years and until recently, was the lead commissioner for disabled children and young people for NHS Calderdale. Phil also led Calderdale’s SEND Pathfinder work before moving to NHS England in April 2013.

We thought he was an ideal person to ask about co-production from the ‘other side’.

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I was really chuffed to be invited to write about working alongside parents from a practitioner’s perspective. As an NHS employee however, I’ve been asked to say that my ‘top tips’ reflect my own views and not necessarily those of either NHS England or NHS Calderdale.

Writing a guest post is new to me, as co-production is to so many of us, and I had a few false starts but I persevered – and that is the key to trying anything new. So, here are my ‘top five’ points to remember.

If you have any questions, leave a comment and I will do my best to answer.

1.     Don’t be afraid to try new things and if they are tough…KEEP GOING!

Co-production is about more than not doing the same things that we have always done, but doing new things together. It’s about talking to each other and working together to find brand new ways of doing things. Doing things differently can be tough, but don’t give up – after all it is better to write a dozen opening lines than none at all.

2.      Be clear about what you want or what you want to achieve

Having meaningful conversations is so much easier if we are all talking about the same thing. People often talk about shared goals and ASPIRATIONS, but these are not always easy to agree on or describe. My advice is to always start with the end in sight. You could try asking, “What would success look like?” In Calderdale, we found the best answers to this question come from children and young people themselves.

3)      Get a sense of what other people need to ACHIEVE and help them achieve it.

Shared aspirations and goals are essential to co-production. There is little point in working together if we are not all heading in the same direction. That said there are often a number of different priorities for families, communities and the various organisations. It can be useful to understand what other people need to achieve, within their families or professional roles.  Helping someone to achieve their objectives often frees up some of their time to help you meet yours.

4)      Learn to TRUST – be open and honest.

If we are going to work together we need to learn to trust each other. In my experience people generally want what is best for children and young people. Believe it or not professionals don’t come to work just to make your lives more difficult [honestly] and parents aren’t unreasonable and difficult on purpose! There is no question that the current system is adversarial and there is little wonder that we are all a little suspicious of each other. Trust will take some time and effort.

5)      Ask for help (and act on advice)

It is okay not to know all of the answers and it is equally okay to ask for help. We are all very LUCKY to have such a wealth of experience around us – in families, communities and services – we need to get much better at using it; And whether you are in a family, community or a service, it is important to remember – it isn’t always the professionals that have all the answers or solutions.

So, SNJ friends, would you like to hear more from Phil?  What would you like him to write about?  We would love to hear your thoughts on this post.  As Phil said, he is happy to respond to any comments and questions below.

You can also contact him directly via Linkedin or @PhilipBrayshaw on Twitter.

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.
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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

My son and his literal world

Debs writes….

My eldest son, K lives in a very literal world and we spend half of our day trying to watch what we say, and the other half paying for the fact that we forgot.  “Watching what we say” – there you go, that phrase would have K staring at our faces to “watch” what we are saying.

Inititally, this caused us heartache, for example when we saw him closing a door and shouted “watch your fingers” and he did.  He watched them as he closed the door on them.  We hadn’t said “move your hand away from the door”.  However, it has also caused us some huge entertainment.

For a long time, K believed my name was “Hiya”.  When people visited us, the first thing many of them said as they walked through the door was “Hiya” and K truly thought this was my name.  When I intitally suspected this, I said to my parents “I’m sure he thinks my name is hiya” so that evening, at dinner, my dad said “Hi K” and K responded “Hi Grandad”, then my mum said “Hi K” and he responded “Hi Grandma” and then I said “Hi K” and he responded “Hi Hiya”.  Mummy Hiya was confirmed.  This did amuse us, especially when I left him at nursery and he would respond “Bye Hiya” or “See you Hiya”.  Yes, I know that this could be interpreted as me laughing at my son but nothing could be further from the truth.  We have to get through this jungle with some sanity intact so for us, a sense of humour is essential.

As he got older, K realised that my name was Debs and he also understood that I was his mummy.  However, he chose to call me Debs.  He would return from school and say “Hiya Debs, where’s Chris” and I would reply “Daddy is at work”.  This went on for some time and still does, however, when we asked him why he called me Debs and not Mummy, he gave me a very confused look and replied “But you don’t call me Son, you call me K”.  So yes, why should he call me Mummy – which is in fact my relationship to him – when I call him K and not Son.

Sometimes his logic just stumps me for a response.  On one occasion, K had been settled in bed, however, when I finished making a brew and walking into the sitting room, he was sat in there.  I asked “Why are you not in bed” and his response was “because I am sat down here”

shameOf course, living in such a black and white world, with little understanding of social rules can cause some issues.  Usually mortification

We had one occasion when I was trying to plug him into a booster seat with one other child (in a booster seat) and a non-petite lady in there too – not an easy task.  So how mortified was I when I asked K to move towards me and he responded  “it’s not me, it’s her – she’s fat”.  Now as a non-skinny lady myself I was horrified for this poor lady and I told him very firmly that we don’t use this word, it’s not a nice word and he was plugged in and off they went.

That evening, I asked him how the day was and he replied it was okay, I asked about the journey and he said he was “squished” in the car because the lady was fat.  I explained again, this was a word that makes people feel sad inside and not a nice word to use.  The next morning, we walked out to the car and I suggested that it may be nice to apologise for using that word and he was happy to do this.

We got to the car, he sat down and as I plugged him in, he offered an apology.  “I am sorry I said you were fat yesterday, Debs has told me that it is not a nice word and it can make you sad inside which is not nice”.  The lady accepted the apology, I smiled with pride and then……..

“Debs, it’s not my fault I am squished in here.  It’s her, she is overweight and needs to go on a diet”  The driver at this point choked, I was looking for a hole to crawl into and K said “is that ok, Debs – I didn’t use the word fat so no one feels sad.”  Want to bet?

So yes, the literal world can be amusing, heartbreaking, mortifying and a real challenge but we try hard to keep smiling.   I would love to hear your experiences, maybe we can all help each other.  We now have a rule with K that he doesn’t comment on people’s height, size, colour or clothes unless they ask him to.    What rules or tips do you have?

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.

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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