SEN and disability stories you mustn’t miss

The summer holidays may be underway but the silly season for news certainly doesn’t seem to have arrived as far as news and great blogs go. Although, as this is Olympics year, we may miss it altogether. I’m especially pleased as the Olympics brings some old and sorely-missed friends into town to cover it for various news organisations.

In special needs this week, there have been a number of notable stories, including the school exclusions figures. the BBC ran on the angle that there was an 11% drop in exclusions across the boar and, while this is of course welcome news, it’s much more worrying that pupils with statements are nine times more likely to be excluded than a pupil without SEN, a fact that news organisations seem to think is just par for the course. Now remember, this is statemented, not just SEN kids, so these are children who are supposed to have statutory help in place to enable them to achieve. Does this indicate that many are simply n the wrong school environment or that their statements are either inadequate or not being properly implemented? I really hope someone with the right resources (yes, I know, what are resources?) looks into this more closely.

There are also a few great blog posts from Chaos in Kent, Lynsey Mumma Duck and Place2Be, so do check them out. Also, if you’ve read or written something fab this week about special needs, leave the link in the comments for me!

The Every Child in Need Campaign – help needed!

A campaign is being launched today (Thursday 26th July 2012) aimed at protecting society’s most vulnerable children from “damaging changes” proposed by the Department for Education.

The Department of Education is proposing wide-ranging changes to the legal framework which protects these ‘children in need’. Although the changes will affect all ‘children in need’ in England and Wales – including all disabled children – they are focused solely on child protection. The proposals are set out in a consultation which runs until 4th September 2012 [details here].

However, a group of charities, campaigners and lawyers, who are today launching :Every Child In Need” say these proposals are wrong-headed, dangerous and will place the most vulnerable children at risk .

The organisations include Maxwell-Gillott SEN solicitors, Ambitious About Autism and child protection charity ECPAT UK. The organisers, between them, work with and reach thousands of children across the country, including disabled children, children who have been trafficked, and others facing challenges such as street homelessness, physical or sexual violence (often gang-related), parental neglect, educational difficulties and behavioural or mental health problems. All of these are children ‘in need’.

The organisers say:

The Department for Education is proposing wide-ranging changes to the legal framework which protects these children.  The Ministers, Michael Gove MP and Tim Loughton MP, say these changes involve cutting ‘red tape’, allowing local authority children’s services departments more freedom to meet children’s needs.  Many local authorities – cash-strapped following swingeing cuts to their budgets – are happy to take this lifeline, which will mean less pressure to act quickly when a child in need comes to their attention.

We disagree.  The legal framework is not ‘red tape’ – it is an essential safety net for children when they are failed by their local authority.  Basic minimum national standards and requirements are essential.  A hands off approach, allowing local authorities to do what they want, when they want, is dangerous.

Even the Government’s own impact assessment (.pdf) recognises this – it accepts that, “there is a risk of negative impact on children if central government is less prescriptive.”  That is not a risk we should be taking.

We believe these changes are wrong-headed, dangerous and will place the most vulnerable children at risk.  Join us and stop these changes.

Although headlined as a consultation about ‘safeguarding’ and ‘child protection’ only, following on from the Munro report, in fact the proposed changes are far wider, impacting upon all ‘children in need’ across England and Wales, and drastically altering the current guidance regarding how local authorities should assess and meet their needs.

Time is short.  The consultation is running over the summer, 12th June – 4th September 2012.  We recognise that the issues are complex and you may have many questions.  We have arranged a campaign and information meeting for Thursday 26th July 2012, to discuss the proposals further and answer any questions.  It will take place at Doughty Street Chambers at 6 – 7.30pm and we very much hope you can join us.

The Department for Education’s wide-ranging proposals are set out here: https://www.education.gov.uk/aboutdfe/departmentalinformation/consultations/a00211065/revised-safeguarding-guidance.  In short, Michael Gove MP and Tim Loughton MP say these changes involve cutting ‘red tape’ and stopping prescription by central government, allowing local authority children’s services departments more freedom.  Many local authorities – cash-strapped following swingeing cuts to their budgets – are happy to take this lifeline, which will mean less pressure to act quickly when a child in need comes to their attention.

We disagree.  The legal framework is not ‘red tape’ – it is an essential safety net for children when they are failed by their local authority.  Basic minimum national standards and requirements are essential.  A hands off approach, allowing local authorities to do what they want, when they want, is dangerous.  Even the Government’s own impact assessment recognises this – it accepts that, “there is a risk of negative impact on children if central government is less prescriptive.”  That is not a risk we should be taking.

The campaign has three central concerns:

(i)            The proposals are based solely upon ‘children at risk,’ but the changes will apply to all ‘children in need’ – a far wider group.  For example, all disabled children are ‘children in need’ but their needs have not been taken into account in the proposals.  There are at least 770,000 disabled children in England and Wales. Why have their needs been disregarded?  How will they be impacted by these changes?

(ii)           The proposals remove national minimum standards for child in need assessments, basic standards which all local authorities must meet.  At the moment there are maximum timescales in place, so that when a child in need is referred to children’s services his or her needs must be assessed within 35 working days at most.  Gove and Loughton are removing this requirement.  We believe that many children in need will be left to languish, without the assessments and services they desperately need – and are statutorily entitled to.

(iii)       The revised statutory guidance proposed in the consultation is hopelessly vague and general, and will not ensure that children in need obtain assessments with a ‘realistic plan of action’.

The campaigners say they are very surprised to see the Department supporting the removal of national minimum standards on the timing and quality of assessments for children in need at this time, when in other contexts they are demanding more proscription and are criticizing local authority decision-making.  They cite as an sample, how Tim Loughton MP recently sharply criticised local authorities for their placement and management of vulnerable young people in children’s homes, and the poor quality of local authority data on such children.

The campaign website is at, www.everychildinneed.org.uk.  Full details of our meeting on 26th July are available at http://www.doughtystreet.co.uk/seminars_events/.

We hope to see you on 26th July.  If you wish to attend please book your place by contacting Doughty Street’s Events Coordinator at 020 7404 1313 or events@doughtystreet.co.uk.

School Exclusions: Statemented children 9 times more likely to be excluded

Statistics published by the Department for Education today show that pupils with statements are nine times more likes to be permanently excluded from school than those pupils without any SEN. Meanwhile, the number of pupils with statements of SEN receiving one or more fixed period exclusions is six times higher than for pupils with no SEN.

The Statistical First Release (SFR) provides information about exclusions from schools and exclusion appeals in England during 2010/11. It reports national trends in the number of permanent and fixed-period exclusions together with information on the characteristics of excluded pupils such as age, gender, ethnicity, free school meal eligibility, and special educational needs (SEN) as well as the reasons for exclusion.

The key points from the latest release are:

  • There were 5080 permanent exclusions from state-funded primary, state-funded secondary and all special schools in 2010/11.
  • In 2010/11 there were 271,980 fixed-period exclusions from state-funded secondary schools, 37,790 fixed-period exclusions from state-funded primary schools and 14,340-fixed period exclusions from special schools.
  • The average length of a fixed-period exclusion in state-funded secondary schools was 2.4 days, for state-funded primary schools the average length of a fixed-period exclusion was 2.1 days.
  • The permanent exclusion rate for boys was approximately three times higher than that for girls. The fixed-period exclusion rate for boys was almost three times higher than that for girls.
  • Pupils with SEN with statements are around nine times more likely to be permanently excluded than those pupils with no SEN.
  • Children who are eligible for free school meals are nearly four times more likely to receive a permanent exclusion and around three times more likely to receive a fixed-period exclusion than children who are not eligible for free school meals.

What are we to make of these statistics? I’m certainly no analyst but the figures surely speak for themselves. Of course, we can’t see what kind of SEN we’re talking about but the reasons for exclusion included physical or verbal assault against a pupil or adult, bullying or racist abuse and persistent disruptive behaviour among other reasons, most of which contain criminal aspects. These things should not, quite rightly, be tolerated, but it’s the reasons behind the category of persistent disruptive behaviour that interests me.

A mainstream school it would seem is, quite often, unable to cope with the high level of demands placed upon it by children with special educational needs and challenging behaviour and for these children, inclusion is the last thing they need. They need a specialised environment that can help them overcome difficulties of background or learning style or hidden disability so they have the same chance of a successful life as everyone else. Timely intervention is crucial for these children so that they can be identified and assisted long before things get to the stage of an exclusion being considered.

When thinking specifically of children with statements, I wonder what percentage of these SEN children, or of children with SEN but without statements, were excluded for persistent disruptive behaviour compared to the other reasons above. A child displaying persistent disruptive behaviour almost certainly has underlying issues, whether BESD, ADHD, ASD etc, that prevents them from accessing the curriculum and hence makes them feel that school is a waste of time.

A large percentage were also recipients of free school meals, which also indicates that poor children (with or without SEN) are hugely at risk of not getting the support they need in a mainstream school environment. Many may come from difficult family backgrounds and would be much more suited to a nurture group environment such as those set up by child psychologist Charlie Mead,  if only they existed more widely.

There is much interesting analysis that can be taken from these stats aside from the startling SEN figures, for example the comparatively high ratio of exclusions for traveller children (who may or may not have SEN). These would take far more time to ponder than I have available, but I hope someone does and lets me know.

Find all the stats here

 

Tourette’s Syndrome – the facts and resources

A condition that is often misunderstood and that is sometimes seen alongside ASD or ADHD is Tourette’s Syndrome. Often inaccurately characterised as sudden, unexpected outbursts of swearing, which is easy to be the butt of comedian’s jokes, Tourette’s is, in fact, a neurological disorder that can affect different people to different extents.

I was interested to learn more about it and I thought you might be too, so I asked Michelle Kelly, Groups Support Officer for Tourette’s Action to write an article for Special Needs Jungle to explain exactly what Tourette’s is and how it’s treated.

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Tourettes Action – Who we are

Tourettes Action is the UK’s leading support and research charity for people with Tourette Syndrome (TS) and their families.

We want people with TS to receive the practical support and social acceptance they need to help them live their lives to the full.

What is Tourette Syndrome?

Lots of people have heard about Tourette Syndrome (TS) but there are still lots of misconceptions about the condition even though we are becoming increasingly more aware of it. Tourette Syndrome is an inherited neurological condition and although relatively rare, TS affects around one in every hundred school children and a total of around 300,000 adults and children in the UK. The condition is characterised by tics which are involuntary and uncontrollable sounds and movement. A common misconception is that people with TS tend to swear uncontrollably but in fact 90% of people with TS do not and their tics are manifested in other ways, whether verbal or otherwise.

The key feature of TS is that tics are uncontrollable and whilst they can be managed or supressed for a short amount of time they will eventually surface. Symptoms tend to present themselves at around about the age of seven and seem to peak at the onset of adolescence, between the ages of ten and twelve. Tics might start around the head and face and might involve blinking, for instance, or touching and jumping. Vocal tics tend to appear a little later on at around the age of eleven and might involve spoken words or sounds, but can also include coughing and sniffing.

There is huge variation in the nature of tics and the extent to which people with TS will experience them. Tics can change frequently and as one tic seems to disappear another may begin. The severity of the tics can change too and an individual may experience them to a differing degree throughout their lives. It is also thought that the tics can be made worse by stressful events and anxiety. If you would like more information about the causes of tics you can click on the link to our leaflet called what makes us tic?.

The good news is that for many children, the symptoms of TS disappear on reaching adulthood but for approximately half of people with TS, the symptoms will persist. Although the condition is chronic and long-lasting, it can be managed and does not have to impair an individual’s ability to live life to the fullest. Some have suggested that doing something as simple as concentrating on an absorbing task has helped to ease their symptoms a little, or even completely. What can make matters more complex, however, is that TS is also linked to other behaviours and co-morbidities such as Obsessive Compulsive Disorder, Attention Deficit Disorder and Autism Spectrum Disorders.

Managing Tourette Syndrome

Many people who have received a diagnosis of TS will not require medication to manage the condition and will not be significantly affected by their symptoms. There are medications that can help, although as is the case with any medication there are also possible side effects which must be taken into consideration. These medications can have success for some people, however, and so it is important to assess the impact on an individual basis. If you want to learn a little more about the kinds of medications that exist you can click on the link to our medications page where you will find lots of helpful information.

Psychotherapy can also help because it can provide practical ways for people with TS and their families to learn to cope with the symptoms of the condition and its impact on daily life. There are behavioural therapies that exist that can help an individual with TS to manage their tics so that they can become more socially acceptable, or in the event that they are causing pain, become less painful. You can find out more about behavioural therapies by visiting our behavioural therapies page.

There are plenty of relaxation techniques that can help to alleviate some of the stress that may be causing the tics or caused by them. The benefit each form of therapy will have will depend largely upon the individual and their own personal preferences but you can find plenty of useful information on our website or by visiting our forum to see what others have to say about their experiences of TS.

Get in touch to find out more

If you are a parent or carer of a child that you think might have TS and you would like to know who to get in touch with, we can provide you with a list of consultants in the UK. If you would like to know what support groups exist in your area then we would be happy to put you in touch. If you would like to contact Tourettes Action please click to visit our contacts page. You will also find plenty of information about events that are happening around the country and details about how you can get involved.

Useful Resources for Schools

Please find links below to our Key Facts for Teachers leaflet and a link to downloadable presentations on Tourette Syndrome that can be used in schools for teacher training and peer awareness.

http://www.tourettes-action.org.uk/storage/Tourettes%20Action%20-%20Key%20Facts%20for%20Teachers.pdf

http://www.tourettes-action.org.uk/ts-presentations

Finally: summer, special needs stories and a teenage birthday

Special Needs JungleAh, so school’s out for pretty much everyone from today..just in time for the summer sunshine to finally show itself.  Although my boys are enjoying the end of their second week of alternately slumping in front of screens or eating everything in the house, interspersed with a bit of warhammer painting or deafening me with electric guitar-playing (this is Son1 and he’s very good, thank goodness)

But today is a special day in our house – it’s the long-awaited dawn of Son2’s teenage years. Summer birthdays always seem the longest to come around and last night, having decided to no longer resist being 13, Son2 decided as it was inevitable, he might as well get really excited about it.

He’s now exploring his iPad (see image for his personal engraving on the back) and newly-boosted collection of Orks as he awaits the arrival of a few school pals for a party.. of some type.. to be decided when they get here. I just have to provide pizza, drinks and be scarce, which I  am more than happy to do.

One thing he won’t be doing is perusing my list of must-read stories from the week and this is a shame, because, if he was twenty years older, he’d enjoy them very much, I’m sure. So, happy holidays to you and Happy Birthday to my brand new teenager!

Active listening: a core skill for SEN reform

Yesterday, MumsNet hosted a live web chat with Sarah Teather, Minister of State for Children and Families.

I recently posted an open letter to Miss Teather, to which I’m still awaiting a response. Last week I spoke at a Surrey pathfinder event on behalf of Family Voice Surrey and in front of DfE senior official, Stephen Kingdom. I made sure to mention our concerns about the timetable for reform that everyone, outside the government, is very worried about. I spoke to Mr Kingdom, a very personable chap, afterwards, to ask him to pass on these concerns to Miss Teather. A day later, he emailed me to tell me about the MumsNet webchat and I was delighted to publicise it on my various social nets (and thanks to everyone who retweeted!) so that as many people as possible could get their questions in. Including, of course, me!

Here is my question:

Hi. My name is Tania Tirraoro and I am co-chair of Family Voice Surrey parent-carer forum. On behalf of FVS, I sit on both the Surrey Local Change Board and the EHCP workstream, part of the SE pathfinder. I have two statemented teenage sons with ASD and I am also the founder of the website, Special Needs Jungle.
I can see how hard parents and professionals alike are working on this reform and how much many LA staff want to do things differently. There are many challenges and details to be worked out and worked through. Our EHCP trial isn’t even set to start until September, and we are far from alone.
I would like to ask: What is your objection to listening to (as opposed to hearing) all those expert voices who are telling you that any draft bill should be delayed until the New Year?A delay of a few months won’t stop this process (described by someone in your department as an ‘unstoppable train’, rather worryingly), but it will give those involved time to work through the pilots, making adjustments as they go without feeling the unnecessary pressure of looming legislation.
The genie is out of the bottle – reform will happen, but you’ll be remembered much more favourably if you give them time to do their work without the extra pressure that fitting into an artificial timetable will bring and you will end up with a stronger, more sustainable system that will really work for children with SEN & disabilities and their families.
Stephen Kingdom, your DfE colleague, told me last week the process will evolve and it won’t be a final bill – if that’s so, why bother publishing it until you actually have solid results to use?
Thank you for your time.

Despite being in bed recovering from surgery, on Monday I logged on via my iPad to read all the many questions posted – and there were lots of questions from concerned parents about various aspects of SEN provision.

It has been clear to me for some time that anyone outside the actual pathfinders doesn’t really know what stage they’re at, or what they’re even about. If you’d like to know more, I would thoroughly recommend this article in SEN Magazine from Jane McConnell, CEO of IPSEA who has a good grasp of the issues and spoke at the recent Education Select Committee on SEN.

Even though it wasn’t the first to be posted, my question was the first Miss Teather chose to answer, not that there is anything to read into that. See below.

SarahTeatherMP Mon 16-Jul-12 10:37:55

Tania Tirraoro asked a question which was picked up by a few of you:
I would like to ask: What is your objection to listening to (as opposed to hearing) all those expert voices who are telling you that any draft bill should be delayed until the New Year?

The most important thing I should stress is that what we will be publishing in September is just a draft bill – it is for discussion, not for debate in Parliament. We won’t be publishing the real bill until the Spring next year. The draft bill is an opportunity for parents and charities who are expert in this area to look at our ideas and tell us what they think. The education select committee in Parliament will also run a kind of inquiry on the draft proposals. It is one of the many stages we are using to test out people’s views and make sure we have the detail right.
It is also important to remember that this is the half way point in the reform process. We began in September 2010, asking people’s views on about what should change, then we published a green paper in the spring last year, more detailed proposals a few months ago, the draft bill in September and the real bill next year. We will also have lots of time in Parliament to debate the bill. It isn’t being rushed through. It will run over two Parliamentary sessions. And some of the legislation will need to be done in what is called secondary legislation at a later stage.
Throughout this process the pathfinders will be testing things out and we wil be getting formal reports. The pathfinders of course are not just testing out the proposals for the legislation. much more importantly, they are about changing culture. You can’t legislate to make people listen – you need to get better at it.

Sarah

I didn’t post a follow up, she only had an hour and there were a lot of questions to get through. The answer was interesting and informative but it still doesn’t answer the question posed further down in my posting – why publish a draft bill if the process is nowhere near ready for it and there is still feedback to be sought from parents and charities? This would seem to be a waste of time and money.

It is this draft bill that is putting unneccesary pressure on the professionals involved in the pathfinders who are trying to do their best – it is unfair and unrealistic. At this stage, in Surrey, we are only about to start talking about who a key worker should be and what qualities they need. But key workers need to be appointed before a trial can begin. Likewise a plan writer. This work WILL be done, but why place what amounts to a false deadline to loom over their heads?

Speaking as the parent of children with special needs (and I’m pretty certain that my views are echoed by most other parents and professionals), give them time to get it right! Why not say, okay, we will have a draft bill, but to instil confidence in the government’s intentions to get it right, we will listen to these concerns and make a much more informed draft bill in January. Would that be so difficult? Really? We wouldn’t think badly of you, we would all breathe a sigh of relief that the job could be done without a guillotine hanging over the heads of those doing the work.

The perception that without this October draft bill nothing will happen is utterly wrong. All it’s doing is causing anxiety and the impression that the government is steaming ahead without regard for the reality of the situation.

One very interesting point Miss Teather mentioned – and it’s something that is at the very heart of the reform – is culture change. This also is going to take money and time. People may lose their jobs over it if they can’t adjust to a new way of thinking. The idea of children and families as ‘client groups’ as I heard one person call them, must come to an end. Children are not clients, they are the vulnerable young people that this process is all about. You can’t change culture by a wave of the wand – extensive training needs to happen.

On top of this is the massive shake-up  in school funding that is happening all at the same time and it is causing much anxiety, frustration and confusion. Mr Gove seems to forget that with all his ‘fantastic’ ideas, he is creating uncertainty in already uncertain times and this cannot be good for schools, teachers or ultimately, children.

So, thank you Miss Teather, for taking part in the web chat yesterday. I’m not really sure if anything you said made anyone actually feel better, but it was a nice gesture. I know you’re busy, but you need to do more getting out and about like this. You see, parents of children with special needs are a cynical bunch and for good reason. Actions speak louder than words to us.

Can you really understand what we’ve been through and are still going through? I don’t really think so, but delaying any draft bill to the new year would be a good indication that you are listening to those of us who are in a position to speak on behalf of our fellow parents who are too stressed and overwhelmed with their situation to have time to speak up for themselves.

 

SEN reform views and other news

Yesterday I spoke on behalf of Family Voice Surrey at the Surrey County Council SEN pathfinder launch in Cobham. In attendance was Stephen Kingdom, a senior DfE official. I took the opportunity to include in my talk the widely-held opinion (outside of government circles, that is) that October is FAR too soon to try to start evaluating any pathfinder activity – most of which isn’t even scheduled to start until September. What, exactly, will they be evaluating, I asked him, when I spoke to him afterwards. He said some government stuff about informing, gradual process etc etc, but I’m not sure he was listening, really. Let’s face it, why should I be any different?

They hold the view that putting it off may mean it doesn’t happen. I disagree. The genie’s out of the bottle now but far, far better to have the ‘unstoppable train’ of reform pause a while to let reality catch up, than rush into something that’ll end up running off the rails because it wasn’t given enough time to lay secure tracks to a sustainable SEN future for the kids who need it.

So, enough train metaphors and on to the week’s stories. My blogging pals have come up trumps this week with some great posts from A Boy with Aspergers, Chaos In Kent, An Aspie in the Family and Emma4Oacs. Lots of other great stuff too, take a look!

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

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

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After years with my son struggling with his reading and writing and being given the impression that he was lazy in class, in Nov 2009 at the age of eleven, he was given a coloured overlay by a teacher at his Primary School.

After I questioned him about this, I was shocked and extremely surprised to find out that when he looked at a page of writing it moved around the page. My son has Visual Stress, the movement of letters on a page of writing and there is a fairly long list of symptons that are associated with it.

I spoke to his Optician who confirmed that my son has Visual Stress, Visual Stress – Meares Irlene Syndrome, Scotopic Sensitivity Syndrome, or Visual Dyslexia the different names I have heard it called. He has to have two pairs of glasses one for everyday use, i.e. going out  and a coloured pair for his educational needs.  He also has severe long-sightedness.

Precision-tinted Lenses are only available by private prescription and the cost can vary from area to area by quite a considerable amount.

I got in touch with the local Primary Care Trust and after about 6 months I finally managed to get a second voucher issued for his distance vision to be put into his tinted lenses. This is also now done for all the children in my area who suffer from Visual Stress.

I have also been in touch with my MP.   She wrote to the Secretary of State for Health and the Chief Executive for NHS in my area.  The replies basically told me what I already knew about the vouchers for children etc. I do not feel that the question of extra funding for the vision of these children was answered at all.   Basically I felt as though i was being swept under the carpet.  [Currently vouchers will not cover the cost of tinted lenses – only the prescription lense]

My MP wrote to the Group Director for Social Care and Learning. His reply gave me the impression that he didn’t have a clue what I was talking about. I then sent an e-mail direct to the Group Director of Social Care and Learning, begging of him to do his homework and find out more about this condition. I sent him two examples of Visual Stress so he could see for himself the reason’s behind these children struggling so much with reading and writing.   Once again I received a reply stating what I already knew, with no offer of looking into this more.

I also got in touch with the Education Dept. for Disabled Children.  They then referred me to The Visual Impairment Coordinator for my area. She told me herself that what my son had wrong with his eyes is not dyslexia. She described it as Scotopic Sensitivity Syndrome or Visual Stress. Even she had to research Visual Stress before she got back to me.   She told me not to force my son to read as the stress he feels, makes the stress on his eyes worse and therefore the Visual Stress symptoms get worse.

When my son first started year 7 he had a reading age of 7.2 years even thought he was 11 years of age. Now at 13 years and year 8 he has the reading age of 9.5 years. [this is an amazing achievement!] I was told by my son’s school that the Education Authority in my area would not issue my son with a Statement of Educational Needs.   So I went directly to the Head of SenCo in my area.  I told them that he needed and I wanted him to have a Statement of Educational Needs.  He was assessed and It took approximately three months for him to be issued with a Statement.

The school were very surprised that I had managed to get a Statement for him.

I was told that my son also had dyslexic tendencies I asked the school about getting him assessed; they told me that my Education Authority didn’t recognise Dyslexia as a learning disability. I told them that I wanted him assessed. Strange that if my son goes to College or University all of his sight problems will then be recognised.

In the mean time I have started a group on Facebook called Parents of Kids with Visual Stress.   This is where all our members can discuss the problems that they are having and also get ideas of how to tackle things from other people. We are also there to support each other with our fight.

I also have an e-petition running for the funding of tinted lenses for visual stress.   I need to get 100,000 signatures for it to be discussed in Parliament. The more votes that we can get the quicker the help can be put in place to help our children.

So far it has felt as though I am being pushed around an ever increasing system of managers etc.  Yet not one of these people are able to tell me if my son can get any help towards funding the glasses he so obviously needs. Without these tinted lenses my son will never be able to read and write at the same level as his peers.

Keep out of the rain this weekend and review the week’s special needs stories instead

Schools Out - copyright Tania TirraoroToday is the last day of school for my boys, apart from Founder’s Day, tomorrow and we’re all praying for the weather to be kind as teachers, staff, 400 boys aged 8-18 and their families cram under a vast marquee. I wrote in an early SNJ post about their very first Founder’s day at the school. Since then the school has expanded so I would recommend a cushion to first timers and your do hands sting a little at the end after all the clapping.

Every boy gets an award for something they’ve worked hard at and they all get to troop up to the front – many have never had the chance to succeed at anything before they arrived at the school and their faces beam with pride; it’s very moving. Our patience is rewarded with strawberries and sparkling wine at the end and a chance to mingle with everyone. Son1’s playing in the Jazz Band on the bass so we’ll have to hang around for a bit anyway! In September he starts his GCSE courses. That’ll be a whole other story.

Do enjoy the stories this week, some great posts and interesting news and don’t forget, if you’ve got any old mobiles hanging around, check out my post below on how you can convert them to a meal for a hungry inner-city child.

Feed a child with an old phone

Just a heads up about this in case you missed it on the news.

Two meals in my hand

A new campaign has been launched by NetMums and Kids Company to help provide meals for children who are going hungry. This isn’t in some far-flung developing nation hit by natural disasters we’re talking about – it’s this country of our own, that’s been hit by a very man-made disaster. I would like to say how shocking this is, but, with the stories I’ve been highlighting recently, I’m sad to say it’s all too familiar, though no less disturbing.

Imagine being a ten-year-old in the UK. Your mother has left you alone with your younger siblings. You are starving, but she is too disturbed to notice. The neighbours know about your hunger and through the letterbox they throw in biscuits, but are too frightened to alert social services because your mother’s boyfriend might harm them. The biscuits make for a good day, on a bad day you draw pictures of food and swallow the paper.

This is a true life example of the children that find their way to the charity Kids Company where they no longer spend the day alone and hungry but are fed, played with and cared for. They have to go home at night, but at least they can come back the next day. And the next.

But instead of wondering how it’s possible to make a difference, root around in your cupboards for those old phones that you not longer use and take them to your local Orange or T-mobile store.

 The campaign, led my Kids Company’s Camila Batmanghelidjh and the NetMums website want you to donate your old mobile phones because with the help of  Orange and T-mobile, each phone donated is converted into cash to pay for a meal for a hungry child.
I’ve got two phones on my desk that I’ll be donating. What about you?

How NOT to prepare for the autistic child’s camping trip

Son2 is off, after school, on a camping trip with his Year 8 cohort. They will set off to walk to a nearby campsite, pitch tents, eat BBQ, camp overnight and return to school sometime the next day. Sounds fun, you might think, and I do hope it is, because this morning has been a faffing nightmare getting him ready.

The TentSon2 has just started some medication that is already making him feel much less anxious so when he wanted to go to the cinema last night with his brother and cousins who are visiting from New Zealand, it would have been unfair to make him stay and pack his bag. So off he went and we did it for him.

Tent, check, sleeping bag, check, bed roll, check. Two spare sets of clothing, cleverly grouped into outfits and packed in separate plastic bags so he doesn’t have to root around in his rucksack, check. Everything on the kit list was ticked off and my husband and I thought we’d done a pretty marvellous job.

Son2 arrives home late, heads for the shower and tumbles into bed.

This morning, he says, “Did you pack my rucksack? I wanted to do it. What have you put in?” Son2 is notoriously fussy about his clothes and shoes. Husband and I exchange uneasy glances.

Out comes everything from the rucksack and Son2 is, of course, unhappy with our choices. Then he decides his shoes are too small and he most definitely does not want the trainers we have packed for him. I grab Son1’s walking boots, which are most probably too large but Son2 tries them on and decides they’ll be fine to take. So we pack them in a plastic bag and I leave husband to repack the rucksack that now contains completely different sets of colour-coordinated clothing.

Into the car goes his wheeled schoolbag for today, rucksack and daypack. He had already sorted out the daypack before he went to the cinema, containing the important stuff – Haribos, guava juice and a self-heating can of rocket coffee. Then I remember – he needs to pack his medication and I should have given it to the nurse days ago. Bugger! She’s not going to be happy.

It is now 0820 and we live five miles from school, which starts at 0830.

Off we set, only for the hands-free phone to ring minutes later. It’s husband. “Doesn’t he need these walking boots?” he asks. Double bugger! We pull into the Tesco Express car park to await husband with the missing boots. My teeth are grinding and I’m feeling uncomfortably clammy. The boys are sitting with their headphones on in their own worlds.

Husband arrives and, boots onboard, we screech out of the car park and head for school, now unavoidably late as we fight through the Farnham town centre traffic. “Are you sure you can’t stay for a club or prep so I can have more time to work?” I ask Son1, hopefully. “No,” is his uncompromising reply. I sigh and turn up Norah Jones singing about how her heart is drenched in wine. I wish mine was too.

Eventually arriving, I drive across the  campus to the sports hall to deliver the bags and tent, only to come face-to-face with the off-duty nurse who also has a son in Year 8. I mention the missing medication and wince as she tell me how they were at school until seven last night, securely packaging everyone else’s who’d got it there at the allotted time. But, as she is a nice person, she graciously tells me it won’t be a problem, but I still feel like the most disorganised mother on the planet.

Son2 trundles happily, through the drizzle, off to form, because of course, no camping trip is complete without rain. I fight back through the traffic to my home office to bring you this sorry tale of woe. Still, the sons are happy, and that’s the main thing. Isn’t it?

I’m having a spot of surgery in a week’s time. I am strangely looking forward to the general anaesthetic.

Place2Be – the charity that makes a lifetime of difference to children in schools

A while ago, I came across a great charity, working across the country to improve the emotional well-being of children, their families and the whole school community. The Place2Be was established in 1994 in response to increasing concern about the extent and depth of emotional and behavioural difficulties displayed in classrooms and playgrounds.

Today, Jonathan Wood, Place2Be  National Manager, Scotland, tells Special Needs Jungle about their work and why it is so vitally important:

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Why school-based counselling support works: Place2Be

You are a busy classroom teacher, juggling the demands of a young family at home with a boisterous class of 8 year olds at school. Your class takes a lot of energy to settle down for work each morning – and at each subsequent break throughout the day.

It’s Monday morning and Amy is in tears again, even before the bell has gone. Recently fostered after a placement with her grandparents ended violently, you have to remind yourself that it is only a year since Amy’s mother died from a drugs overdose. If you didn’t, your exasperation might seep out as you comfort her just enough to get her into class.

Once in there, disorder rules. At the heart of it, two boys are baiting each other. One of them, Sam, is not going to back down. You suspect he is somewhere on the autistic spectrum, as yet undiagnosed – that mix of over-sensitivity and bullishness – and his feelings have been hurt. And Amy’s crying again.

The other children have responded to your presence and start to settle down. So that just leaves Sam and Amy and you to deal with.

How do teaching staff cope with extra-curricular demands of this nature? Who offers them support to ride the emotional roller-coaster that whizzes and plummets through the school curriculum on bad and not-so-bad days?

In Place2Be’s experience, most teachers cope by simply carrying on. Support for the emotional impact of children like Sam and Amy can be hard to come by.

Founded in 1994, Place2Be provides a whole-school service, offering therapeutic and emotional support to children and parents, and on-site consultancy formally and informally to teaching staff. We work with 500 schools across the UK. How would we respond in this situation?

We might expect to meet up with this teacher at break or lunchtime and talk through with her how her morning went. We may suggest strategies for her to support Sam, including that he come and see us in Place2Talk, our drop-in, solution-focused self-referral sessions for children (10 minute sessions at break time). We may bring forward Amy’s session with her Place2Be counsellor, recognising that she is not coping well at the moment. We may simply listen to the teacher.

And indeed, Sam did come to the Place2Talk and together we worked out painstakingly and rationally how he might take control of similar situations and not rise to anyone’s bait. And over the next few weeks, Amy played intensively with the doll’s house in the Place2Be room, in which she installed dolls representing herself, her mum and her grandparents. There were fights and tears, but it wasn’t until a new set of parents moved into a room in the house that Amy’s mum and grandparents could move out, leaving her there. Amy’s foster parents have since applied to adopt Amy, and the tears before class have stopped.

Teachers know that some children arrive at school not ready to learn. But knowing that is not the same as having the time, the resources or even the skills to manage all the issues that children can bring.  This is where a service like Place2Be can make the difference by attempting to provide that responsive space for schools at every level in a direct and non-stigmatising way.

Find Place2Be here