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

Skiing, Steam Punk and a view to the future

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

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

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

Son1 is 15 today-and proof that the right support can work miracles

Today is the International Day for Persons With Disabilities, which will be marked worldwide. It’s also Son1’s 15th birthday and I would like, today, to offer a message of hope for parents of children with behavioural problems and Asperger’s who are worrying what the future may hold for their children.

Son1 - All rights reserved

Aged 7

When Son1 started school, we already knew that it was not going to be an easy ride. Fiercely intelligent and sporty with a bright blonde mop of hair, we still hoped for the best. At pre-school, the undertrained staff had already shaken their heads at his unwillingness to go along with everyone else. If he couldn’t have the colour cup he wanted, he would rather not have the drink. He would tear around, regardless of who was around him.

Within the first few terms of reception, he had a behavioural chart. He couldn’t bear to be anything but first in the queue and if something went wrong, he would sit under the table and refuse to move. He found it impossible to see others’ point of view; on outings he was a danger to himself. Making and keeping friends was another issue. Needless to say, this all had an impact on his learning.

He loved football but would often sulk on the sidelines if he couldn’t play where he wanted. At home he would have rages, was often uncontrollable and nothing we did seemed to make any difference.

Needless to say, we were drained, stressed and desperate to help him. I even helped in school twice a week to make sure I knew what was going on there. My husband became a team football coach – something he still does – to support him.

So, lacking any useful help or advice from school, I got wise, did my research, got a referral to a paediatrician and discovered what the problem was – Asperger’s with Hyperactivity. I worked really hard to get him the statement he needed to support his social and emotional needs. We tried and discounted medication; we tried a different diet. This was against a backdrop of having a younger son with medical, social and educational needs for whom we also had to find a solution.

And find it we did.

For the last five years, as you may know, both our boys have been at the most fantastic independent specialist school that is designed for bright boys who find it difficult to learn in a mainstream setting. They may have dyslexia, dyspraxia, increasingly Asperger’s or another learning difficulty. Schools like this are few and far between and, as far as I know, there is no comparable girls’ school. We even moved house to be closer for the daily school run.

Son1, now he has been getting the right education in the right environment, is growing into an independent, clever, thoughtful young man. He has a love of, and a talent for music. He has a sense of humour. He still has his impulsiveness and stubbornness but he listens to reason – as long as you don’t ram it down his throat. Best of all, he has friends.

Some of this is down to growing up in a stable home with a family who work hard to make sure that he has what he needs – which is not always the same as what he wants. But mostly it’s the intensive input and care from the experts in the Learning and Development Centre at school

Son2 winning Chairman's Player of the Year for 2012

Son2 winning Chairman’s Player of the Year for 2012

I’m telling you this because I know very well that there are parents reading with younger children who are still at the ‘before’ stage. Who may be wondering where to turn, who can help them or if their child will ever have the kind of life they had envisaged for them. They will have faced disapproving looks from parents at the school gates and from teachers who are not trained in either recognising or supporting this type of child.

On this Day of Disabilities, I also think of those children with such severe difficulties that they may never reach adulthood, or who will be dependent on their parents or on medical care for as long as they are alive. And I realise that we are lucky. Our younger son does have medical difficulties that we have been struggling to get to grips with and this is hard, with an uncertain future, but we have experience enough now to know that we will cope.

This is not to say that some have it worse so you can’t feel bad – no one can tell you how to feel and when we see our children suffering it is devastating, whatever their condition.

But for boys like Son1, there is a solution. It takes lots of work, determination, strength and persistence – for them, you and their school. As further proof, this year at his football club, he won the Chairman’s Player of the Year Award. He played in goal for two seasons to benefit the club, even though he prefers being a striker.

My message to you is do not give up. Keep looking until you find the right solution. Get educated, get help – for your child and for yourself – but above all, believe that the future will be better.

Beech Lodge: A new school offering a practical approach to learning

For some children, a mainstream school setting can be overwhelming, particularly if they have learning difficulties such as dyslexia, dyscalculia or find it otherwise difficult to learn in the same way as the majority of children.

However, there are very few schools that are set up for children like this for whom a specialist environment is needed.

Daniela Szmigielska and Emma Barklem from Berkshire decided to tackle this to help their own children and others like them by starting their own school.

Opening in January 2013 in Hurley, Berkshire, Beech Lodge School will be a new small independent co-educational day school for children between the ages of 7 and 16+ whose particular needs may not be fulfilled in a mainstream setting and who may not warrant a special school place.

The school building at Top Farm is a newly converted barn in a rural setting which is currently being completely refurbished. It will provide the classroom, assembly and office space suitable for a small number of children, including a garden and for playing and working in, as well as nearby access to woodland and sports facilities.

Beech Lodge will offer an innovative and hands-on approach to education for those children who require an individually tailored learning environment to build social and life skills, have access to therapeutic and specialist interventions and above all the educational tools with which to achieve their greatest potential. Founded by some of Berkshire’s most inspiring teachers and a group of concerned and active parents, Beech Lodge’s aim is to provide a supportive and structured environment enabling those children to thrive rather than just survive at school.

Daniela said, “All children are different and learn and behave in different ways. Beech Lodge will consider the whole child addressing their individual emotional, social, physical and academic needs. We aim to use  variety of teaching strategies and techniques to keep them on task, build self esteem and give them the practical skills for later life. The curriculum puts an emphasis on children developing skills in Literacy and Numeracy with cross curricular links across subjects. Special importance is also placed on outdoor and practical learning, cooking, art, music, drama and physical exercise.”

Beech Lodge will accept children who would benefit from a high teacher/pupil ratio and small class sizes. They may require specialist teaching for dyslexia and dyscalculia as well as access to therapeutic interventions such as SLT, OT and Attachment therapy. These may be children who have restricted coping skills and low self esteem due to a range of difficulties including mild to moderate learning difficulties, social and emotional difficulties, sensory processing issues and missed opportunities at school.

It will be a school for children with ability and talent but for whom mainstream education is overwhelming. A school that recognises not only how vulnerable but also how precious those children are.

For more information see our website www.beechlodgeschool.co.uk, call 01628 501722 or email info@beechlodgeschool.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

 

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

Special Free Schools – is it worth it?

A few weeks ago, I was invited to attend a conference about the formation of special free schools. I couldn’t make it myself as I had other meetings, but Claire Louise, from the popular and award-winning, A Boy With Asperger’s blog, kindly agreed to step in and attend for SNJ. Here’s her report:

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Is it worth the hassle (a 100+ page bid and one hell of a load of work) that comes with starting a Special Free School?

There are many factors that need careful consideration, as well as a number of different circumstances each need applying to. For example, Is the school already up and running, therefore requiring just “Free School” status? This could apply to any school (independent & non-maintained) this excludes that of state schools who can instead apply to become academies.
Maybe you are considering starting up a Special Free School from scratch. It may only exisit on paper or an idea in your head. Maybe its because there is a gap in SEN provision that needs filling, therefore an idea of a Special Free school makes sense.

So as not to confuse anybody (as we all know these things can be mind boggling) I’ll therefore take this one step at a time and will try to be a clear as possible as I do.

Firstly, What is a Special Free School?

A Special Free School is one that is funded by the Government yet run independently. So, you may ask how these are any different from independent schools? Independent schools are not reliant on the government for funding, instead these schools are funded by a combination of tuition fees, gifts, fundraising or in some cases income investments (for profit organisations). Non-maintained schools are normally run by not-for-profit charities, approved by the secretary of state to take children with statements of SEN.

So, What must a Special Free School Provide & how must it be run?

  • Provide education for children assessed as needing statements of SEN between the ages of 5-19 years of age.
  • Provide education to a minimum of 5 children
  • Only teach children with SEN or those being assessed as having SEN
  • Have regard to the SEN Code of Practice
  • Provide a curriculum that is one tailored to an individuals needs
  • Run by an acedemy trust (Charitable trust/not for profit)

Admissions to Special Free Schools will continue to be made via the LEA who retain responsibility for assessing a childs SEN

Important factors…

Applications must only be made by those schools that are new (meaning ones not already funded by the state as already mentioned above)

So… Who can set up a Special Free School?

Well, I should really rephrase the above question to, “Who can apply to set up a Special Free School?” Because the answer is just about anybody can, but this doesn’t mean to say your application will be approved.

This isn’t just a case of knowing that there is a gap in SEN provision (though it helps) groups of parents, charity groups etc,will struggle unless they have a member of their group who has strong knowledge of the education system (basically how to run a school on a senior level) Head teachers and board of governors make a good starting block. From what I have heard, many parent groups have formed wanting to start Special Free Schools but due to their lack of knowledge on the running of a school (including costs) they have therefore fallen at the first hurdle. This isn’t just a case of coming together, forming a group and filling in an application.

Parents/groups/charity groups looking to apply to open Special Free Schools need to do their homework and should realise this isn’t the only option (setting up fully independent schools may be a better, if not slightly easier, process). To set up a Special Free School, groups should appoint a director(s) and as mentioned, preferably someone who has some inside senior knowledge on the running of a school and importantly the likely cost that comes with it.

Writing the bid is also a far from easy task, this normally exceeds a 100 pages and no stone should be left unturned! Only then is there a chance you will make it to the “Interview Stage” The Governement has set up the New Schools Network which is there to help groups throughout the process and should really be your first port of call.
Understandably, given the state of the SEN system at present (the fact that there just aren’t enough special schools in most areas and there are huge gaps in provision) many groups, especially those consisting of parents of children diagnosed with SEN, will be looking into Special Free Schools. However, I feel that when looking more closely, they may well discover things are much more complicated then identifying the need for a school, finding a site and opening one. I’m not saying people assume its easy, just that it seems much harder than I first thought, plus it may not be all its cracked up to be (just read on to see where I’m going with this.)

So, what about existing independent schools? WOuld it be beneficial for them to apply for SFS status? It sounds so considering these will continue to be ran independently yet receive state funding to do so! What’s the catch? Of course like everything there is one!

Special schools that are already setup and established will not be provided with the start-up funding However, there are some exceptions, such as expanding pupil capacity -but there are still no guarantees.

The next big factor is admissions. Once Special Free School status is granted to those independent schools, the LEA will have the right to make them take children with varying needs, even ones the school does not cater for. Therefore this means that independent schools that for example only provide education for children on the autism spectrum, will have to take children with other needs, social, emotional, more complexed SEN or varying disabilities. For me, this is a massive issue, one that would make me consider such a change much more carefully if I was making such a decision about an independent school.

My son is in an independent special school just for children with autism and Asperger’s. The school teaches in small groups and have a high pupil-teacher ratio. I would honestly worry if it was to convert to that of Special Free School status. I’m not being selfish, I just feel that by admitting children outside this status of SEN may result in all children not having their needs met, not mentioning the school reaching over-capacity. I also worry that dependent on how many independent schools within my postcode convert to Special Free School Status, the local LEA may try to move my child in order to save money (his at an independent out-of-borough school).

So… with the bad points out of the way, are there any good ones? The only ones I can actually think of is that of the reduction in tribunal cases. It’s quite simple really…if independent special schools convert to Special Free Schools, then the number of parents bringing cases to the SEN tribunal will fall. LEAs will be much more willing to send a child to the school as it won’t be charging the independent fees it once was. This would also mean that more children would possibly be educated within their borough. For me, neither outweigh the issue of admissions (this for me just creates worry).

Whoever you are, if a Special Free School is something you are seriously considering, there are important issues to consider. One of the biggest is that of the pending SEN reforms. With the future of SEN provision still up in the air, is now the right time to be making such huge decisions? The Green Paper will mean a complete SEN overhaul. This includes the scrapping of the SEN Statement and replacement with the Education, Health and Care plan taking its place. Other factors include everything from the way a child with SEN is assessed, the funding a school will receive and the possibility of a personal budget. We don’t even know what the new EHCP will look like and if the social care part will hold any legal and statutory duty whatsoever.

Can’t this government do one thing at a time? It makes no sense to me to open Special Free schools when the way such children are provided for remains so unclear.

Okay, so heres the nitty gritty on the issue of Special Free School funding:
As far as I can make out, there is no set capital – this is therefore allocated on a project by project basis. The secretary of state must take into account the estimated or “potential” costs of each individual group’s bid. As already stated, there is no start up funding for existing schools, only new schools (special circumstances will be given consideration.)

Do your homework, this is a government-funded scheme which will mean that they want to see low costs and good value for money!
Remember, the government is still consulting on long term funding for special schools. As it stands, the interim funding arrangements put in place is to receive base-funding level funding of £10k per place (note there may be additional funding from some LEAs dependent on an individual’s needs. Well, let’s be honest, 10k isn’t much, especially for a child with complex needs who requires a number of high-level provisions put in place like SLT and OT.

Lastly, Special Free Schools, like other free schools, should receive a standard grant to compensate for services that state maintained schools recive from the LA.

If considering a Special Free School, remember these only cater for children aged 5-19. This is regardless of the pending EHCP, which covers children aged 0-25.

So, there you have it! I hope I didn’t confuse you!

Thanks to Tania  at Special Needs Jungle for asking me to attend the New Schools Network forum which enabled me to write this report. Please visit the New Schools Network for detailed information and advice on Special Free Schools and Free Schools

Claire Louise (A boy With Asperger’s)

I’m up for most inspiring blog in the Mad blog Awards 2012
Please vote for me (A boy with Aspergers) at http://www.the-mads.com/vote.htm

Find me on twitter @clairelouise82

Pathological Demand Avoidance – one family’s story

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

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From day one, my son suffered from a bloating and stomach pains, which meant for the first two years of his life he only cat napped for a couple of hours at a time; this extreme tiredness felt like torture. When he was almost 10 months old, a doctor suspected he might have Hirschsprung’s diseasewhich led to him under-going a bowel biopsy and a barium x-ray, results of which thankfully were both negative, but the experience had taken its toll and left him suffering further distress.

He was referred to a dietician when he was 26 months old who suggested I put him on a wheat free, gluten free diet. Less wheat did help a little with the bloating; after a while I put him back on a normal diet reducing his wheat intake. My son had terrible outbursts due to frustration and confusion, head banging on floor, biting, hitting, grabbing and hurling anything he could reach.

His speech was poor; by 19 months he had four words and by 24 months it had increased to around eight. His hearing tests were all good. He used to point for things he wanted, or led me by the hand. His speech started to improve slowly from the age of three. He also had difficulties with his gross motor skills (balance, stepping over objects, hoping, running), an occupational assessment put this down to poor gross motor skills and a stiff gait in his left leg. Mother and toddler groups were a nightmare due to his aggression – he was like a whirlwind of destruction which, of course, resulted in complaints from other parents. This continued on into nursery, where he was put on School Action Plus.

Home life became difficult, in so many ways. His sister, four years older, struggled with the constant crying and meltdowns from her brother, other family members struggled to understand and put his behaviour down to terrible 2,3,4’s, some friends stopped seeing us as they didn’t want him playing with their children due to his aggression. Hairline cracks within my marriage grew into a canyon and I struggled to know what to do for the best.

My son was initially diagnosed with speech and language delay. He first attended a mainstream school with a speech and language unit attached, after only one week he had been permanently excluded on grounds of health and safety the other children. Another smaller mainstream school offered to take him, they even helped to get his statement of needs relooked at, and he was given a full-time one to one teaching assistant. However, after almost four weeks and several incidences, the school admitted they were also unable to cope.

Another doctor assessed my son, she recognised that he had autistic tendencies combined with speech disorder. His statement was adjusted to better meet his needs and then began the search for another school. During that time he remained at home.

So many times I was told, “Your son’s not autistic he gives eye contact”. Other times I was asked, “Does that mean your son is really intelligent?” But more difficult to hear was, “He’s just strong willed, a good smack on the bottom will sort him” A local special needs school was found, actually it was a unit attached to an EBD (emotional behaviour disorder) school. With only five children in the class, one teacher and two assistants, I hoped things would work out for him, it certainly looked that way to begin with.

Then the calls started… “Um, it’s your son’s school here, he’s not having a good day; can you come and get him?” This went on and on, not only was this very negative and disruptive for my son, I repeatedly had to take more time off work. I also saw an increase in his meltdowns, and unfortunately the copying from other boys of inappropriate words (such a the F word). A new term, with new staff, resulted in an incident and once again he was excluded.

After an emergency review meeting, which raised areas of failings by the school, we were back to square one. After three separate school exclusions from three different types of schools, I had to give up my job for a third time. He remained at home for eight months whilst being rejected by many schools. The autistic specific schools we viewed didn’t seem suitable, as his autism was mild. Other schools turned him down because he was unable to access the curriculum, and many schools rejected him because of his aggression.

After a CAMHS report, a Meath School private disability assessment, a battle with the County Council SEN department regarding their failings, an Ombudsman investigation, a newspaper article, some campaigns involving letters to my local MP, amongst others, eventually a new school was found, but is ‘out of county’.

Where are we today now that my son is nine years old?… My son has a condition called Pathological Demand Avoidance Syndrome, which is increasingly recognised as part of the autistic spectrum. He is mentally five years old, with Speech Language Communication Disorder and Dyslexic. He is still unable to access the curriculum, struggles to comprehend simple requests, has no concept of time, suffers from IBS and struggles to understand social play.

He currently goes to a special needs boy’s school who have some experience with ASD, EBD, ADHD, ODD etc. But more importantly, they have a flexible manner with an open-minded approach in a nurturing, calm and inclusive environment. To-date, both my son and his school teachers/carers are coping well and learning from each other every day. But it isn’t plain sailing, as his school is in another county and because it’s almost an hours drive away.

There were problems with travelling back and forth daily, so he is currently weekly boarding at the school, the same as the majority of the other boys. There has been much heartache for me, letting go and trusting in others to care for and understand my beautiful boy, although it now helps being able to telephone him every evening. I also worry about the possible increase in his anxiety levels due to separation from the family.

There certainly have been some positives, my daughter is calmer and happier and we have respite time together during the week and it has been lovely to be able to focus 100% on her for the first time in years. Although the children’s father and I have separated, we remain living near each other, have become good friends and he has a wonderful relationship with his children and is fully involved in their lives. We both feel that our son has given us the opportunity to look at life with huge appreciation for the things that many people take for granted.

Our son has been our teacher, we have learned the art of patience, acceptance, to be open-minded, to look closely at ourselves and how to interact in a new way with both our children. My son helped me to realise who I am and what I am capable of; he gave me my voice, he helped me find my inner spirit, strength and passion, and has made me a better person. I am a strong advocate for autism and am in relentless pursuit to raise awareness about PDA.

What can PDA look like…

  • Panic attacks /challenging behaviour:  

Aggressive outbursts, kicking, biting, spitting, hitting, swearing, screaming, throwing things (fight or flight, often with no obvious triggers)

  • Communication abnormalities:  

Echolalic speech, literal understanding of speech, neologisms (using idiosyncratic words instead of conventional speech), language disorder to varying degrees, inappropriate speech for social context

  • Social communication:

Inappropriate play, lack of turn taking and difficulty understanding social rules and requests, difficulties knowing how to react to another person’s behaviour, difficulties accepting that there may be other perspectives, not just a single perspective, limited gesturing

  • Rigid thinking
  • Accumulative levels of stress
  • High anxiety and low self esteem
  • Sensory issues / overstimulation, materials, noise, sunlight, temperature, food

Early History of PDA Elizabeth Newson first began to look at PDA as a specific syndrome in the 1980′s when certain children referred to the Child Development Clinic at Nottingham University appeared to display and share many of the same characteristics. These children had often been referred because they seemed to show many autistic traits but were not typical in their presentation like those with classical autism or Asperger Syndrome because of the child’s imaginative ability, especially in non-echolalic role play; often the child seemed unusually sociable, though in an “odd” way, and language development was atypical of autism and less pragmatically disordered than in Asperger’s syndrome. They had often been labelled as ‘Atypical Autism‘ or Pervasive Developmental Disorder – Not Otherwise Specified. Both of these terms were felt by parents to be unhelpful. She wrote up her findings in several papers based on increasingly larger groups of children. This culminated in a proposal for PDA being recognised as a separate syndrome within the Pervasive Developmental Disorders in 2003 published in the Archives of Diseases in Childhood.

http://www.pdacontact.org.uk/ | http://www.facebook.com/groups/7165353156/  | http://adc.bmj.com/content/88/7/595.full | http://advocate4pda.wordpress.com/2012/02/05/wikipedia-for-pda/  | http://www.youtube.com/watch?v=QwtkzBoY01M

Above is a photo of my wonderful son, and below, a photo taken at the National Autistic Society Spectrum Ball, where Tony Hadley (Spandau Ballet) kindly agreed to have pictures taken to help raise awareness for children with Pathological Demand Avoidance Syndrome.

Launching DysNet – and how the right education helped one man make a difference, despite disability

For the past two months, in addition to my special needs work, I’ve been working on an exciting project to launch an online community network for people living with limb differences.

DysNet is the brainchild of a dear friend of mine, Geoff Adams-Spink, about whom I’ve written on this blog before. It’s aimed at bringing together people around the world affected by dysmelia (congenital limb differences) to share information, knowledge and resources. Today, Geoff writes about his life for Special Needs Jungle and demonstrates that, with the right support and education, it is entirely possible to live a rich, rewarding and independent life.

From Small Beginnings

First let me declare an interest: Tania Tirraoro the award-finalist writer who hosts this blog is a good friend and a professional contact.  She and I trained together as journalists on the South Cornish coast way back in 1988.  Back then, Tania was vivacious, tenacious and keen to get on.  More than two decades later, absolutely nothing has changed.  Or has it?

Bringing up two boys with Asperger’s has directed her considerable energies into the field of special needs education.  As someone who spent most of his childhood at special boarding schools, she has asked me to share a few thoughts about my experiences and about the current debate about special schools vs. inclusive education.

Geoff Adams-Spink

I was born half a century ago with disabilities caused by the morning sickness drug, thalidomide.  The drug left me with extremely short arms, flipper-like hands and very limited vision in the one eye that I have – the other is completely absent.

Back then, children with physical disabilities were destined for special schools – mainstream either wasn’t geared up or wasn’t prepared to gear up to support us.  My parents were told in no uncertain terms that my safety couldn’t be guaranteed if I attended the same local schools that had served my two sisters and my brother perfectly well.

So, aged five, I was packed off to Penhurst school in Oxfordshire which was run by NCH – now NCH, Action for Children.  I recently revisited the place and found it transformed.  It no longer supports children with the sort of disabilities I have.  All of the students have profound and multiple learning disabilities or PMLD.  The 26 children require intensive support from the 150 or so staff.  The cost of a place there can only be guessed at.

And this has set me thinking about the current debate about special needs vs. inclusive education.  It seems to me entirely ridiculous that anyone should assume that one approach should be adopted exclusively.  If we are, in the words of a former Secretary of State for Education to “respond to the needs of the child” there is surely room for a mixed economy.  Plenty of children – myself included – would probably manage perfectly well in mainstream education with a few minor adjustments.  Others would be left in the margins and need the specialist support of staff who know how to encourage children with different needs to achieve their potential.

This is not simply about physical compared with learning disabilities: two children with, superficially, the same level of impairment could well require different responses from the system.  My nephew, for example, has Asperger’s and managed quite well in mainstream education.  But he has the benefit of supportive parents who have equipped him with the knowledge to know how to regulate his behaviour and manage his condition.  He’s also a big strapping lad who has no shortage of confidence.  Another child with the same level of Asperger’s may well struggle in the same environment.

Is there life after special education?  You bet!  I out-grew Penhurst quite quickly and was sent to another boarding school aged eight.  This establishment had an approach that – at the time – was quite revolutionary: that disabled children (the majority were vision impaired though some had physical disabilities as well) should be encouraged to acquire certificated qualifications.  I left the place after nine years with eight O-Levels and went on to study for A-Levels at an FE college and then on to university.

So how have mine and Tania Tirraoro’s paths crossed again?  Tania is now an expert in the use of social media.  After 22 years working as a BBC journalist, I am now Chairman of a European organisation that represents people with limb difference.  We have an ambitious project to create a global network of those affected by dysmelia (as limb difference is officially known) and to link this network with a knowledge base and another network of dysmelia experts.  Spreading the word using social media is a no-brainer.  And our choice of Tania to establish our social media networks to help us achieve our goal was equally simple.

On Monday May 21, Tania is helping us to launch DysNet – an online community that will help people to conduct conversations in five languages. We’ll have a knowledge-sharing website and a secure community forum on RareConnect, run by EURORDIS & NORD, the world’s leading rare disease organisations.

I wonder whether, when my distraught mother left me at Penhurst for the first time, she had any idea that her son would get so much from his special education.

DysNet Website  | DysNet Twitter | DysNet Facebook | DysNet G+

Special Needs Jungle in the Daily Telegraph. What I really think

There’s a story about SEN in the Daily Telegraph today “Can 20 per cent of schoolchildren really have special needs?” by Peter Stanford. It’s already attracted lots of comments, some informed, others somewhat less so, shall we say.

The story is a follow on to other, recent reports blaming rising SEN figures on either bad parenting or bad teaching or both. Peter wanted to find out the real root of it, but it seems even he was flummoxed.

He interviewed me for the piece and the general gist of what I said is there, although I didn’t give up my TV career to go into school to help, I gave it up to be with my children at home because I decided it was a much better use of my time than giving good “TV smile”. Being able to help in school and see for myself how things worked was very useful, especially in the light of my boys’ difficulties. I could see for myself how different they were to other children, in a classroom setting. I could see that the teachers were, in my opinion, of varying quality, ranging from totally brilliant to inexperienced and out of their depth.

What I said when speaking to Peter but didn’t make it into the piece, was that I believe that the pressures of today’s society on children, parents and teachers are immense. Responsible parents are faced with the knowledge that their kids are going to have to survive in a highly competitive world and are more vigilant when they see their child not doing as well as they might. Responsible parents just want their child to have the same opportunities as every other child to reach their potential – and that sometimes means accessing extra help through the SEN system.

Are these parents all middle-class? Many are, but far from all of them. I know this to be true from the emails I get. It doesn’t matter what class you are, the difference is how much attention you’re paying to your child and that has nothing to do with class.

Now, it is obviously true that a child does not automatically have SEN just because they are not at the top or even the middle of the school class. But a parent knows their child the best. When their profile of achievement is uneven or their social difficulties affect their ability to learn, intervention is warranted. In a mainstream school, a teacher has thirty children in the class. That’s thirty children of differing ability, different learning styles and varying levels of attention and behaviour, whatever their background.

Teachers aren’t super-human. They’re overworked, stressed (whatever the man from OFSTED says) and under-resourced. Can one person pay as close attention to the needs of thirty totally different children as each child requires? Of course not and the blame is not theirs. The SENCo might have three other roles in the school. The IEP may not be worth the paper its written on because it’s rarely looked at (through time pressure, not because the teacher doesn’t care).

This is why responsible parents have to step in to make sure their children get the help they need. They’re not “sharp-elbowed” or any other derogatory term. They are responsible, vigilant and determined, because if they don’t help their children, no one will. And don’t think that they are able to somehow ‘cheat’ the system. Only around 2% of children actually get a statement – far less than should have one in my opinion, but those that do have been through an unforgiving assessment process of experts and, sometimes, the scrutiny of an appeal to the SEND Tribunal

And what about those children who are not blessed with determined parents like these? The ones who are often put on the SEN register because it’s the only thing in a teacher’s toolbox to give them a leg-up? This is the huge inequity of society. These children often fall through the cracks. They end up in a continuing cycle of deprivation. They may even end up in the criminal justice system.

They may or may not actually have special educational needs to start with, but if their home life is insecure and they live in poverty, it is sure to have an impact on their learning. They may just need attention and nurturing to give them self-esteem and confidence in themselves. Former head teacher, now an Educational Psychologist, Charlie Mead, has an answer and it’s not rocket science. He has instigated ‘nurture groups’ in secondary schools with amazing results.

In this presentation he describes how nurture groups in mainstream secondary schools can enable children with “special educational needs” to receive the support they need and improve their educational outcomes making the best use of scarce resources. Watch his presentation below. To see him speak, book for the TAPF SEN conference in June at this link

Home educating a child with special needs

Many parents who have children with special needs seriously consider home educating their child. It throws us lots of issues – especially if they are statemented. Today. home education expert, Fiona Nicholson, who has given evidence to government committees on the subject of elective home education, talks to Special Needs Jungle about these issues and how to go about teaching your SEN child at home.
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Some parents decide when their children are very young that school is unlikely to meet their needs. But most children who are home educated did go to school for a while first. When it comes to the crunch, many parents feel they have no choice but to home educate because of problems in school, especially when children are bullied. Children with special needs are often singled out because they are different.
Fiona Nicholson, Ed YourselfThe school day can be very long for a child with special needs and children always come home tired or angry. Many parents say it’s less tiring to home educate because they can go with the flow more. It may mean that parents have to give up their job in order to home educate, so I do get asked a lot of questions about the benefit system.
Children with special needs have an equal right to be educated at home. A significant number of autistic children are home educated and the National Autistic Society has information on its website about home education.
One parent told researchers: “the number of HE families in the UK is growing rapidly, as many are literally forced to it by bullying in the schools that the school system can’t/won’t protect their children from, and/or by the failure of the schools to decently address special needs. We are one such family, and know many others. We are not choosing home education as an alternative lifestyle choice, but have been left with no other acceptable option.” Another parent commented “regrettably, we would never have considered home ed until forced into it because of bullying. We now wish that we had always home educated her.”
Home education isn’t a decision which is taken lightly. Parents are anxious about how children will make friends and they do worry about whether they are keeping children wrapped in cotton wool or protecting them from the real world.
In fact there are many social opportunities for home educating families. The internet is widely used by parents to link with others in their area and nationwide. There is also a thriving internet community specifically for home educating parents with special needs children. Parents who are just thinking about whether they could possibly manage to home educate and what it actually involves can join and ask questions from parents who have already made the transition.
If the child is a registered pupil at a mainstream school, the parent  wishing to home educate should send a written request to the school for the child’s name to be taken off the  school roll. You don’t have to ask for permission. It’s the same process whether the child has a statement of special needs or not. The statement will need to be modified to take off the school’s name and to say that the parents have made their own arrangements.
If the child is a registered pupil at a special school, the parent does require  consent from the local authority before the child’s name can be removed from the school roll. Some local  authorities will ask for further information about how home education will accommodate the child’s special needs.
Even when children have a statement of special needs, the local authority doesn’t have to help or provide services once the child is out of school. On the other hand, the statement isn’t enforceable on the parents, as long as they are making provision for the child’s special needs. This gives families more responsibility but more freedom as well.
In England the Department for Education has said that the local authority can claim back money spent on SEN support and the latest Government rules say this can be agreed on a case-by-case basis with the family. The total amount that the Council can claim is the same as schools receive for each pupil. However, it’s totally up to the local authority and not many have taken it on board yet. You need to be mentally prepared for the possibility that you’ll get nothing once your child is out of school.
Once parents are home educating they obviously have less opportunity to go out to work and earn a living. Carer’s Allowance is payable to people who are caring for  a child or adult receiving Disability Living Allowance at medium or higher rate. Home educating parents – including lone parents – are entitled to claim Jobseeker’s Allowance if they are prepared to agree to the qualifying terms and conditions. Home educating parents can also claim Working Tax Credit and Child Tax Credit for self-employment which can include working from home.
Links: 
My website has a lot of information about home education law and SEN and also about state benefits http://edyourself.org/

Helping your special needs child – a mother’s story

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

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Hi everyone.

I am mother to a ten year old boy who was born with multiple birth defects. He required many surgeries and as a result was left with severe separation anxieties. When he started pre-school I had to attend with him and couldn’t even leave the room. He could not attend school for more than 2 hours a day during his reception year because of his anxieties, medical problems and mainly because this school was less than empathetic to his and indeed, our whole family needs. Although they were classed as ‘outstanding’ in their OFSTED report, they never listened. They only told and kept referring to themselves as “experts”, a term we all as parents hate.

I moved within the year and made sure I placed my son in a school where the headteacher was very empathetic. She listened attentively to my concerns and requests – I knew this was the right school for him and although I applied for a Statement as I felt and the school felt this would be needed, he managed to settle in straight away with very little problems although he was placed back into reception again (a year behind his age) and was placed on School Action Plus.

I gained employment at this school as a Teaching Assistant and worked with an Autistic boy for the three years he was in this school before transferring to Junior School.

I have been able to use my knowledge and feelings as a parent to help in my work with this boy. I have also witnessed how communication plays a huge part between schools and parents – I see how things can be improved, I see how schools can be too judgemental on parents without knowing the full facts and seeing the full family picture. I also see where parents can be too demanding on schools without knowing all the facts.

In the course of my work I attended courses. I found out about the Autism Toolbox. This is a valuable resource. I never knew this existed however, ALL schools have it [SNJ note: all schools in Scotland, this is a resource developed for Scottish schools]. It gives examples of language jigs and social stories. These can be used for anything i.e, trips out shopping, going to bed, playing with friends, school trip out, school photographs etc. PLEASE, PLEASE, if you are a parent of not only an autistic child but a child who has any kind of anxieties, communication difficulties, behavioural difficulties, ask your school if you can borrow this resource to help you with routines at home and also make sure they are using this resource in school for your child. The Autistic toolbox can also be downloaded from many LEAs websites under the special needs section. If I had known about this valuable resource I could have used it to help my son and am sure that it would have saved a whole lot of family frustrations.

When looking for schools it is important to use your ‘gut instinct’ as a parent. My son’s first school did little to help him, even though as I said, they were rated as ‘outstanding’ in their OFSTED report. His new school however was rated as ‘satisfactory’ but they listened and helped him progress. It is also important as a parent that you not only get to meet the teacher but more importantly your child’s keyworker or teaching assistant, as it is this person who will have the most ‘hands on’ time with your child.

Talk to them about how you feel, tell them what is important to you, be sincere. Most of us find it easier to be honest and tell medical people the difficulties we are experiencing at home but when it comes to schools we feel less able to tell them about our struggles. A good school will not judge you if you are honest about what you are having difficulties with. Suggest home/school diaries where the teaching assistant will record what went well and what was difficult in the school day. Then the parent can record what went well, was difficult at home – home and school working together where the child gets rewarded at home for what went well during school and the child gets rewarded at school for what went well at home.

The difficulties can also be addressed. Ask for the TA to make up social stories – examples of these can be found on the internet. These can then go home and be read as a night time story – they can tell stories about how your child can ask to play with children at playtime, problem solving, when things change, etc. The pictures from these stories can then be minimized and used by the TA as visual reminders that can be shown to your child when playtime begins etc.

Find out whether your child has support at playtime; in lots of schools the teachers, TAs have their break when the children are out playing. This is when your child needs the most help! Other teachers and TAs on duty in the playground may not fully be aware of your child’s difficulties. Ask the school if you can go in and talk to all staff including teachers, teaching assistants, midday supervisors. It is important that everyone at school knows your child, their difficulties and how to help.

Schools have many resources which can help your child with their learning, homework. They also have special needs website addresses to help your child learn at home that can help with maths and also help develop fine motor skills. Just ask if you can borrow these resources or make a note of the website addresses.

If there is an important meeting at school about your child, ask the school to confirm the minutes of the meeting in writing. We as parents can only hold as much information as our emotions will let us. This often leads to us ‘making up’ the rest of the conversation without knowing it and jumping to false conclusions.

If your child has recently started school and you have been an ‘at home mum’ caring for your child, why not volunteer as a parent helper? If you enjoy this and a position becomes available at the school, ask to be considered. Don’t feel that you are unqualified for the job. You can have a teaching assistant with all the qualifications in the world who lacks the passion and enthusiasm required to really make a difference when working with a child and then there’s you – a parent who knows what it’s like, who will treat the child they work with as if they are your own, being able to relate to how their parents are feeling.

I am so glad I applied for a job as a teaching assistant – I always think of how I would want someone to work with my son when I am working with a child. How wonderful it is to have played a part in helping a child succeed knowing that you put your all into working with that child and neither you nor anyone else could have helped that child more.

I would really appreciate your comments as to whether you feel your school is supportive or unsupportive – Do they always plan ahead and have everything sorted out so you are not worried at all or do you feel you have to constantly approach them in order for things to move forward.

Many thanks to Tanya for sharing her experiences. If you’d like to share what you have learned about helping your child to help others, please email me  

Cambian launches Specialist Education Scholarships for children with Asperger’s or autism in their schools

Many parents of children with Autism and Asperger Syndrome have faced unbelievable struggles to get the right education solutions for their children. Some have fought their LEAs for funding to the school most appropriate for their child and not succeeded. Now, specialist independent education provider, the Cambian group, have launched a scholarship to fund two children at one of their schools. It’s a fantastic opportunity and is the first of its kind.  Jeremy Wiles of the Cambian group, explains why they’re doing it, in this guest post written exclusively for Special Needs Jungle: With over 30 years of experience in supporting children with complex educational needs, the Cambian group is no stranger to seeing how children can thrive and achieve things never thought possible, within the right learning environment. Sadly, not all children with Asperger’s syndrome or autism in the UK have the opportunity to attend a school which is specifically designed to address their individual learning and behavioural needs.  It is from this understanding that we first conceived the idea of launching a scholarship scheme for our residential specialist education schools. For parents, securing the right specialist education for their child with Asperger’s syndrome or autism can be a struggle. As we know, each situation is unique; some parents find their child performs academically but they encounter behavioural issues in the home or school. Equally, some children with Asperger’s syndrome or autism find school a huge challenge, and may face problems with bullying or homework. Our specialist schools are set up to address individual needs to ensure every child reaches their own personal best, however it is defined by them or for them. Of course, many parents of a child with Asperger’s syndrome or autism will have already been through the ‘statementing’ process. Finding the right school is another hurdle in what is often a lengthy process that can cause considerable stress for a fmaily. In recognition of this and the positive feedback we continue to receive from parents and children at our schools, we decided that it was time to pilot our first scholarship scheme. Our Specialist Education Scholarships schemewent live two weeks ago and we are now offering two residential placements at one of our Ofsted rated ‘outstanding’, specialist education schools. These placements will be available for two children with complex educational needs linked to Asperger’s syndrome or autism.

Image courtesy of Cambian

We’re thrilled and proud to be offering these placements to two children, at one of our residential specialist education schools.  The scholarships will be awarded after assessment by a relevant school, to ensure that the level of needs of the child would be matched with the right school.  This would typically mean that a child had a statement or was progressing through this process, at the time of application. The scholarship will provide an opportunity to place two children into a supportive and nurturing learning environment, for the duration of their education at one of our schools. We cannot urge parents enough, to come forward and find out more about what this scholarship could mean for their child and we are welcoming any questions that they may have. What our specialist schools provide, is a unique opportunity to experience the very best child-centred, individualised educational support needed by these students. We offer a unique Active Learning™ programme, which ensures a collaborative, multi-disciplinary approach to education, care and therapy, and access to a wide range of facilities to help students learn and progress. Our results speak for themselves; 40 percent of our post-16 students with Asperger’s syndrome return to mainstream college and around 85 per cent of students with autism achieve their individual education plan targets. It has been really exciting to see the applications roll in so far, but we really want to hear from more parents out there, and as such, we are encouraging as many people as possible to join in our conversations on Twitter. You can find us by following @Cambian_schools and don’t forget to include #CambianScholarships in your tweets, to join in the conversation. We will be hosting another live Tweet-up again very soon. Parents or guardians are able to apply for a scholarship place by downloading an application form from our website. The application should be supported by a professional who is currently involved in the care and education of your child. Two scholarship placements will be awarded in June 2012 and the deadline for submitting an application is 1st May 2012 at 5pm. If you would like to find out more about the scholarships, visit our frequently asked questions page. If you have further questions about the scholarships or would like to speak to someone about one of our schools please call Cambian’s SEN Helpline on 0800 138 1184. We look forward to hearing from you.”  

Want your SEN product or service listed on the Special Needs Jungle site?

Special Needs Jungle has lots of visitors every day ranging from parents & carers to SEN professionals. It has many email subscribers and is also available for subscription on Kindle.

The site has a page where links to SEN sites and resources are listed. If you would like to have your SEN resource or product listed, please use the contact form to get in touch.

This service is free for parent support groups and SEN/Disability charities. For other companies, there is a £20 a year donation fee that will go to More House Special School in Farnham for its fund to build a School of Engineering.

More House School educates boys from 8 to 18 who might be bright but who have some form of learning difficulty that impedes their progress in mainstream school.

If you know of a company who might be interested in taking advantage of this offer, please forward this link to them.

IT teaching overhaul announced – about time too!

Michael Gove, the Education Secretary has today announced an overhaul of the way IT is taught in schools. This is great news and I hope our school, although not a state school will do the same. I know they already have some plans underway to beef up the computer science element.

I first talked out this subject back in November last year in the wake of companies like Google and Microsoft saying that our IT teaching was putting Britain at a disadvantage for its future in the tech industry. I back this view entirely. As I said in my earlier post, it’s especially important for children with Asperger’s to be exposed to coding at an early age as many (though not all) have an aptitude for IT and the sciences. Certainly Son2 does and it’s important to support and encourage him in a field in which he can excel as an adult. In fact, I suggest they go further and give extension work for more able students as they do in Maths and English.

Below is an excerpt from the Gove announcement:

The move, which is being supported by industry experts including Ian Livingstone – co-founder of Games Workshop, would give schools the freedom to create their own ICT and Computer Science curricula that equip pupils with the skills employers want.

Other experts, including the British Computer Society and ICT professional association Naace, confirm the current National Curriculum Programme of Study is dull and unsatisfactory. Some respondents to a 2008 e-Skills study said that GCSE ICT was “so harmful, boring and/or irrelevant it should simply be scrapped”.

Companies such as Microsoft and Google and Cambridge University are already working with technology education organisations, such as the British Computer Society, to produce free materials for schools. More are expected to follow.

The Education Secretary also said he was keen for high-quality qualifications in Computer Science to be developed, and welcomed industry-giant IBM’s involvement.

Education Secretary Michael Gove said in his speech today:

“As the chairman of Google, Eric Schmidt, recently lamented, we in England have allowed our education system to ignore our great heritage and we are paying the price for it. Our school system has not prepared children for this new world. Millions have left school over the past decade without even the basics they need for a decent job. And the current curriculum cannot prepare British students to work at the very forefront of technological change.

The best degrees in Computer Science are among the most rigorous and respected qualifications in the world… and prepare students for immensely rewarding careers and world-changing innovations. But you’d never know that from the current ICT curriculum. This is why we are withdrawing it from September. Technology in schools will no longer be micro-managed by Whitehall. By withdrawing the Programme of Study, we’re giving teachers freedom over what and how to teach, revolutionising ICT as we know it.

Universities, businesses and others will have the opportunity to devise new courses and exams. In particular, we want to see universities and businesses create new high-quality Computer Science GCSEs, and develop curricula encouraging schools to make use of the brilliant Computer Science content available on the web. ICT will remain a compulsory part of the National Curriculum, pending the National Curriculum review.

Mr Gove mentioned that “We could have  11-year-olds able to write simple 2D computer animations using an MIT tool called Scratch. By 16, they could have an understanding of formal logic previously covered only in University courses and be writing their own Apps for smartphones.”

Son2 has been able to use Scratch to create animations since he was about nine, and has moved on – but then he is exceptional. But because he is, I think an individualised approach needs to be taken where, as I mentioned earlier, the most able are progressed as fast as they can manage with extension work. Teaching Son2 Scratch wouldn’t do much for him. He’s ready to write apps now. But the elephant in the room is – who’s going to teach them? Are we going to sack existing IT teachers and employ people who are experts in what needs to be taught or just send the current IT teachers on courses to upgrade their skills. Either way, it needs to be done soon.

It’s unacceptable to be told, as I was a year ago that, “We don’t really teach coding here.” Well you should and I hope this announcement will also resonate with private and specialist schools like ours who are not bound by the diktats of  the National Curriculum.

To join in with The Guardian’s campaign click here

To read the full Department of Education report, click here

Have you ever applied for a Statementing Assessment for your child? If so, take this poll!

I’m carrying out a poll into how people fare when they initially apply for a Statutory Assessment for their child. If you’re been through it please take the poll and share the poll with as many people as possible. The results will be published in the New Year. Thank you!

SENAC for Special Needs Advice in Northern Ireland

If you’re in Northern Ireland and you’re looking for help with getting your child the special educational needs support they require, there is a service for you. The Special Educational Needs Advice Centre, or SENAC,  is a regional charity set up in 2003.

They provide FREE independent advice on behalf of children and young people with disabilities and special educational needs (SEN) attending schools in Northern Ireland up to the age of 19 years. SENAC offers  information to parents and carers on all aspects of the statutory framework of SEN provision in Northern Ireland.

SENAC also offers an individual advocacy service for children and young people and work with parents to facilitate positive communication with schools and assist them to make more meaningful representations of their child’s needs.

SENAC OFFERS:

  • An independent and confidential telephone advice-line service, providing advice and information to parents/carers at all stages of the process for the Assessment and Statementing of Special Educational Needs.
  • Written information and guidelines on the Assessment and Statementing procedures both on this website and in print on request.
  • Assistance to parents in understanding policies and procedures in relation to their child.
  • Information on contacting other relevant organizations.

SENAC operates an Advice Line on 028 9079 5779. Further information can be obtained from their website www.senac.co.uk

Why I’m backing the call for a revolution in ICT teaching

My younger son (or Son2 as he’s known around here) is a 12 year old computer wizard. He has so much computer equipment, wiring and accessories that I have nicknamed his room, ‘The Technolair’.

Ze PurpleGentelmanne (Son2)

At school he does ICT where much of the subject matter he could actually teach the class himself. At home he is part of the army of Minecraft addicts, he makes his own amusing graphics on DeviantArt and animations that he uploads to YouTube. He has taught himself how to do all of this.

Today I heard on Radio 4’s Today show about how some of the biggest firms in hi-tech, including Google and Microsoft, are calling for major changes in how the UK teaches computing to give Britain the skills it needs to compete. I whole-heartedly endorse this. While learning Office-based programs like Word, Excel and Access are very useful, my son, who has Asperger Syndrome and enough challenges in his life as it is, could use a leg up by being taught coding.

The problem, here, is that do our Secondary School level ICT teachers have the up-to-date skills in coding to teach young people? If not, schools need to buy in some expertise or training. And, if companies like Google and Microsoft are calling for a revolution in ICT, perhaps they would like to put their hands in their pockets and offer some funding to provide these experts, or the training opportunities for our existing ICT teachers to help them create the computer geniuses of tomorrow.

In my son’s case, even an after-school club would be enough to give him the basics and he could take it from there himself. For young people with certain difficulties such as him, any help in their areas of strength should be given the utmost priority. He already wants to build a computer from scratch but even though I’m a little bit geeky myself, such a project may be beyond me, especially as he has a unique learning style and his brain works in ways that are hard for most people to fathom.

There is a project called http://www.computingatschool.org.uk/ that has lots of free resources for teachers and young people including an exciting-looking competition called Codebreaker. There is also a cheap computer system called Rasberry Pi whose developers are designing an ultra-low-cost computer for use in teaching computer programming to children. Their first product is about the size of a credit card, and is designed to plug into a TV or be combined with a touch screen for a low cost tablet. The expected price is $25 (£15) for a fully-configured system. There is an informative article in The Register about it.

As soon as I can, I’m going to get one of these babies for Son2 for whom we are currently designing a new larger bedroom to his precise specifications. The new, improved Technolair will no doubt be raided by police at sometime in the future after he has taken over the internet – which is why he needs expert guidance in focusing his computer genius for good, not mischief. I am joking here, but the serious point is that we need the coding experts of today to help disseminate their knowledge in practical ways to the next generation inside schools. That takes investment and the will of companies such as Microsoft, google and the Double Negative company of Alex Hope, who spoke on the Today programme this morning, to turn words into action today.

Alex Hope is also the co-author of a report called Next Gen, described as a landmark report setting out how the UK can be transformed into the world’s leading talent hub for video games and visual effects. he clearly knows what he’s talking about so hopefully people who can make this a reality will listen.

Now, will Government and IT companies please form an orderly queue and get on with it?

My article in SEN Magazine: Can teachers recognise SEN in bright pupils?

I have an article in the current issue of SEN Magazine, entitled Can teachers recognise SEN in bright pupils.

Me & my boys circa 2003

Both my sons, Giorgio aged 12 and Luca, 13, have Asperger’s syndrome, and both are extremely intelligent. Luca, however, struggled with understanding the norms of behaviour, was prone to emotional or physical outbursts and was virtually friendless. He needed to be first in everything and this constant rushing affected the quality of his work. Giorgio, a gentle soul, could read at three, but still struggles to write legibly. Group work was impossible and his original way of thinking made it hard for him to follow instructions. One teacher remarked that, “He has informed opinions which he expresses well but they are often tenuously linked to the subject matter.”
Before they were diagnosed, their infant school tried behavioural charts for Luca, and eventually, after I insisted, a literacy software programme for Giorgio. However, when you don’t know why a child is experiencing problems in the first place, it’s difficult to put the right help in place….

To read the rest of the article, click here (SEN Magazine website)

Groundbreaking dance DVD to help kids with autism.

Anna Kennedy is an inspirational figure. She is the mother of two sons, one with autism, one with Asperger Syndrome. That’s tough enough on its own but, unable to find the right educational solution for her autistic son, she and her husband Sean fought endless bureaucracy, unfavourable odds and the need to raise a large sum of money and succeeded in founding their own school in London that could meet the needs of children like theirs.

The school, Hillingdon Manor School has since gone from strength to strength through Anna & Sean’s hard work, determination and the unstoppable desire to turn no’s into yes’s when it came to their children’s futures. It is now the largest facility for educating and supporting people of all ages with autism in Europe.

Anna has now developed a groundbreaking project, entitled “Step in the Right Direction”. It features a dance DVD, tutorials and interviews, offering a clear insight into an autism spectrum condition (ASC). It’s being launched at the British Institute of Learning Disabilities conference on Friday 4th November in Birmingam.

The initiative marks the fulfilment of a life-long dream for Anna, now a leading autism campaigner, as well as the director of the Hillingdon Manor School and founder of the charity Anna Kennedy online.com

Anna said, “Research and teaching experience shows us that autistic children need multiple types of stimulation to process information. Music and dance help the brain to organise itself. Hearing, listening, processing and repetition help children with autism build new learning pathways. We think this is a really fun and inventive way of connecting with and helping children develop coordination and flexibility and in the process build their confidence and improve their communication skills. With more and more young people affected by autism, I felt this was the right time to launch such a project.”

Produced in association with the world famous Pineapple Performing Arts School in London and the students from Hillingdon Manor School, the DVD features a special guest interview with Britain’s Got Talent finalist dancer James Hobley, plus the star of Sky 1 Pineapple Dance Studios, Andrew Stone. The DVD has already generated a huge amount of interest, particularly among parents, families and carers of those with autism.

Founder of the iconic Pineapple Dance studios Debbie Moore said: “This is a truly wonderful and highly imaginative dance production; a must-have DVD for parents, carers, mainstream and special schools, after-school and youth clubs.”

Every child is different but experts agree that early intervention helps with development and dance aids children with autism. The DVD’s carefully structured dance and exercise routines, ranging from freestyle to” poppin’, lockin’ and tuttin’”, can also help them connect better with others.

Tutorials feature some of the country’s leading dance experts, including break-dance tutor Jade Flannagan and Pineapple Dance Foundation’s Maggie Paterson. They are designed to help young people develop co-ordination and flexibility, change rhythm and speed, level and direction, use varied dance and aerobic exercise sequences, identify parts of the body and stretch them, improvise dance and exercise movements to rhythms and participate in important cool down activities.

Priced at £7.99 + P&P the DVD (approx running time 100 mins) can be ordered at www.annakennedyonline.com

Ritalin, talking therapies and what I think our kids really need…

The Health Minister, Simon Burns has said that the chief medical officer and the NHS medical director are planning to write to clinicians to remind them of the full range of NICE guidelines on conditions—including ADHD—that affect children’s mental health. It came in response to an adjournment debate on 25th October 2011 called by MP Pat McFadden on the rise in prescriptions for children of the drug methylphenidate (Ritalin, Equasym etc) used to treat people affected by the symptoms of attention deficit and hyperactivity. These symptoms affect behaviour and the ability to learn and as well as being found in ADHD, are also co-morbid in young people with autism, Asperger Syndrome and other similar development disorders.

Mr McFadden made a plea for the Minister to carry out a proper, comprehensive review of the use of these drugs involving professionals from the medical, psychology and teaching fields, as well as the families of those who have been prescribed the drugs. He asked the Minister, “Will he commit his Department to carry out a proper research project into the use of the drugs, including the age of the children receiving them? Secondly, in the light of the huge growth in prescriptions, will the Government carry out a proper review of practice in the field, as called for by the Association of Educational Psychologists, before the new guidance comes into effect in 2013?”

Mr Burns said he himself had a family member who was successfully being treated with Ritalin. “Across hospital and primary care, the prescribing of drugs for ADHD increased by around 12.5% between 2007 and 2010, the latest four years for which data are available, and by around 6% in 2010 alone. Prescribing in primary care alone increased by 22% in that four-year period, reflecting a significant shift in prescribing activity from a hospital setting and into primary care. Looking back further, one sees that prescribing in primary care has tripled in the past 10 years.”

However he pointed out that the cost of doing nothing was too great for those affected and that, if left untreated, mental health problems can lead to low attainment in school, antisocial behaviour, drink and drug misuse, worklessness and even criminality in adult life. He said, “Getting things right for children and their families—through a broad range of support to promote good mental health from the start of life, through the school years and into adulthood—can make a real difference to young lives.”

Yesterday, the government announced a further £32 million pounds for child mental health services, including talking therapies. While this may seem like a lot, when split across the country, it might not go as far as hoped. Talking therapies take time and require therapists qualified in techniques such as cognitive behavioural therapy, particularly in its use with children. I believe that this issue should not be looked at in isolation. It is an educational, parenting and medical issue all at the same time.

In educational terms, it should be looked at whether the right learning environments are available to teach children for whom sitting still in a classroom is impossible. There is plenty of practical advice available giving tips and strategies to help manage students with ADHD and help them thrive in a regular school environment. What is needed is the will to implement them consistently at a classroom level. That takes teacher training. And when I say consistent – that is key. One of my sons one year in mainstream had a teacher who managed him well. The next year he moved into a class with an older teacher who didn’t even realise he had a diagnosis, let alone the will to adapt her teaching style to help him. It’s no use having teaching assistants who are just mums looking for a part-time job. If they are to work with learning disabled children or those with attention or hyperactivity issues that may be clouding their true ability, the TAs need to be well trained. Some are and sadly, some aren’t. That’s not good enough. Our ASD sons were both treated for a while with medication. But they no longer need it because they are now in the right educational setting. This is not only my view, it was  the opinion of their paediatrician, an experienced and well-respected man.

Parenting wise, parents who have children with difficulties need support. They need to learn techniques to manage their children effectively and I’m not talking only talking about parents from lower down on the social scale. Just because you have a good job or a good education does not mean you come automatically equipped with the parenting skills needed to cope with life in a household where there is constant stress and discord because of the behaviour of one of your children. I know, I’ve been there and I know plenty of other middle-class good parents in the same boat.

Medically, and here we come back to Mr McFadden’s debate in parliament, we need GPs who don’t fob parents off, and we need specialists who listen to parents and who have the knowledge of and access to, up to date research and therapies pertaining to children’s mental health. They need to be able to work with parents, schools and CAMHS together to be able to put the right package of treatment together for the child concerned. Yes, it takes time and money – well they’ve just given £32 million, so there’s cash to be spent. But when you are talking about a child’s future you cannot take a piecemeal approach. Questions such as why is the child having the behavioual isssue – is there an underlying medical condition? Are they dyslexic? Do they have a speech and language problem that has gone unrecognised? A holistic approach is needed. Many of children like these turn out to be gifted in one area or another and need to be given the chance to let their talents find a way to the surface. If nothing else, in the 21st century and with all the research already available it should be within our power to help some of our most vulnerable people to thrive.

Lastly – and this is key. the media should stop being so damn judgemental of parents and children with behavioural problems and yes, Daily Mail, I’m talking to you and your readers who are so quick to condemn and who publish ill-informed opinions and blatant untruths about this already embattled section of society. I believe the reason the Health Minister, Mr Burns, gave such a thoughtful and informed response was because he himself has personal knowledge of the issues. Which just proves the adage about walking in other people’s shoes.

Paperback of my Statementing book now available at Amazon

SEN-Getting Started With Statements

Great news! The paperback of my SEN parents’ book, “Special Educational Needs – Getting Started With Statements”  is now available on Amazon.

It currently says out of stock but it’s only gone on today and you should be able to order it, with free delivery. It’s also available in Kindle format and hopefully, Amazon will get around to linking the two pages as soon as they can.

If you buy it, and find it useful, please post a review on Amazon to help others.

Please share this post as widely as you can to inform other parents who may be helped by the book. Thanks!

http://www.amazon.co.uk/dp/1908603585

SEN conference, Towards a Positive Future, Review part one.

I attended a very interesting conference on special educational needs on Friday. It was held to mark the launch of a new organisation aimed at providing a ‘one stop shop’ to parents needing to find professional services such as speech and language and occupational therapy for their children. It aims to establish a database of professionals who can work with children in teams that talk to each other and deliver a seamless service for the child. It’s still at an early planning stage and its founder, SLT professional, Janet O’Keeefe, is actively looking for ideas and people willing to join her.

The event also marked the launch of Janet’s book, Towards a Positive Future, which I have written about here.

The conference had several interesting speakers some of whom I hope to be able to bring you more from on this site in the weeks to come. The event was held at the Mary Hare School for hearing impaired children near Newbury. The school does inspirational work in providing an education for its pupils, helping each through individually designed hearing equipment. As a non-maintained state school, the school’s head, Tony Shaw, said they are ‘not considered to be part of inclusion’ and have had their funding cut by central government. This, despite the Education Secretary, Michael Gove, himself having a sister with a hearing impairment.

The school has had to diversify to survive, establishing an ear mould lab that services the NHS. Despite this, Mr Shaw says they never forget what they’re there for. He said, “At the core are the children we have the passion of serving.”  It’s a sad fact that, in the politics and cost-cutting of government both local and national, this message is too often overlooked.

Another speaker was Kevin Geeson, CEO of Dyslexia Action, who talked about the opportunities and risks of the Green Paper. He highlighted concerns about the assessment of hidden disabilities such as dyslexia in that it may not be picked up early enough and the question of who will control the personal budgets given to children to provide for their SEN. Mr Geeson said the Green paper brought an opportunity to provide the proper skills and support for teachers to include all children in the curriculum. He said, “Good teaching for children with hidden disabilities is good teaching for all.”

Education solicitor, Inez Brown of Anthony Collins solicitors, set out the legal framework and funding of special needs and pointed out the problem with parents appealing against SEN decisions for children at the new Academies because the Academies do not fall within the Education Act. She also pointed out that the Green paper removes Speech and Language and Occupational Therapy out of educational provision – something every parent of a statemented child should be aware of. This means that the local authority cannot be challenged about these things at a Tribunal.  Ms Brown also made a startling  statement about the trialling of the new green paper which has just been announced and I am hoping she will be writing more about this on this site very soon.

The conference also heard from internationally acclaimed academic, Professor Heather Van Der Lely who has developed an early-identification test for dyslexia called GAPS. I will write a separate piece about this so won’t go into detail here. The professor pointed out that seven per cent of children have a specific language impairment – seven times the incidence of autism. She is trying to bring about the widespread use of GAPS which, she says, is quick, efficient and highly accurate. The crucial issue is, of course, that there are not enough Speech and Language Therapists to help all those that the test could identify. Perhaps the government should focus on how to recruit more SLTs into the profession and create a environment that enables enough of them to stay within the NHS.

The next post will detail the speakers from the afternoon session of this very enlightening conference.

Links for this post:

http://www.dyslexiaaction.org.uk

http://www.AnthonyCollins.com

GAPS

Mary Hare School

Twitter: @JanetOKeefe@kgeeson

My new book for parents looking for SEN help – launched Monday 10th October 2011

On Monday, I officially launch my new book aimed at helping parents of special needs children get the education they need. It’s first coming out in ebook format, followed by a paperback in a month.

The book’s called Special Educational Needs – Getting Started with Statements. It’s a parent-to-parent guide to starting to compile a statutory assessment application for you special needs child.
It’s tough enough having a child who has special educational needs – getting them the right help can seem like an impossible task. This book sets out in a simple, easy to follow way, a step-by-step guide to how to prepare the best application you can. While aimed at the UK Education system, parents everywhere will find it useful if they are trying to organise a case for their child.

I’ll write more about it on Monday, together with links to where you can buy it. In the meantime, it would be brilliant if you would pop over to the facebook launch page and say hello!

The event page is here: http://www.facebook.com/event.php?eid=297761316917633

Unofficial Exclusions – we want to hear from you.

Yesterday, I was talking to a friend of mine who is a highly experienced SEN Advocate. I told her of a parent I know who had been asked to collect her ASD son early from school each day. My friend, Julie Maynard, was outraged. That was, she said, an unofficial exclusion and was illegal. The child was being deprived of a full school day because of his disability.

It reminded me of something that happened to my younger son on the last day he was in mainstream school. They were having the second of two ‘Victorian Days’ where children had to dress up and, in this instance, have an in-school day as if they were Victorian school-children. We had already been on a school trip, in costume, to a Victoriam Museum and my son had dressed up along with everyone else. So had I, as a parent helper, along for the day. I was chosen I believe, to ensure that there was someone there to keep a special eye on my son, who has Asperger Syndrome.

The day for the second in-school event came and my son flatly refused to wear his outfit, although he was willing to take part in the day. After much negotiation, we decided simply to take his outfit along in case he wanted to put it on later. When we got to school, I found his class teacher and explained why he was in regular school uniform. “I thought this might happen,” she said. “Well, we don’t want to spoil it for everyone else so he can either spend the day with the year below or you can take him home.”

I looked at her in shock. “Do you realise what it took me to get him here today?” I asked. I left with my son and never took him back again. Fortunately, he already had an offer of a place at a specialist school so he started there the following Monday, which was not the measured transition I wanted, but I felt I had no option. How could he go back to a class teacher who obviously had so little understanding of his disability that, despite her suspecting my son would have difficulty, had not thought ahead to help him be included in what was supposed to be a fun day.

Today, I read on the BBC website of a study by the Centre of Social Justice that says some schools in England are “acting illegally or unscrupulously” by excluding pupils by unofficial means. Some schools encourage parents to remove difficult children, avoiding officially excluding them but providing no support. The report, No Excuses: A review of educational exclusion, is based on interviews with more than 100 heads, teachers, parents, pupils, local authority, voluntary and private sector workers. You can also listen for to a podcast of a BBC programme about this.

The CSJ calls for more transparency in the area of school exclusions, saying official figures do not provide an accurate picture of exclusions in some schools. Some schools are “failing to comply with their legal obligations” or are “carrying out unofficial illegal exclusions”, it says. It outlined practices which include encouraging parents to withdraw their children from school voluntarily or using part-time schooling arrangements as an alternative to permanent exclusion, when they are meant to be just a short-term measure.

Several local authorities are under investigation for the practice of ‘unofficial’ exclusions. If your SEN child has been asked to go home early or have a shortened day by the school, with or without your agreement, they are acting illegally. Julie Maynard would like to hear from you about it. Please send your story, local authority and contact details to her via the contact page on this website and I will forward it to her. In the meantime, if you are in this situation, you can contact your school using the wording below:

Dear (Head teacher’s name)
Child’s Name:
DOB:
I refer to our conversation about my child and the school’s proposals to address their special educational needs.
Having taken advice, the school’s proposals are in fact unlawful and in breach of the Education and Inspection Bill 2006. The school’s suggestion equates to denying my child an education, and amounts to an informal exclusion. Both the Secretary of State for Education and the Courts take a dim view of schools adopting such a practice. In addition, the school is in breach of its statutory duties under the Equalities Act 2010 (encompassing the DDA 1995) regarding less favourable treatment of a child on grounds of their special educational needs and/or disability. The school’s proposals can therefore be placed in a Court of Law for judicial review, in which my son would be legally aided and/or in SENDiST.
Under the SEN COP 2001 and the Education Act 1996, if the school is unable to meet my child’s needs within its delegated resources it has a statutory duty of care to request a statutory assessment of my child forthwith by the local authority. Please kindly do so immediately. In the interim the school is permitted to seek emergency funding or an emergency placement if matters are so severe. However, under s316 of the Education Act 1996, it would appear my child is not detrimental to the efficient education of peers, and moreover merely treating him less favourably does not constitute reasonable adjustment.
I trust this clarifies my position, in that my child will attend school in the same manner as his able peers.Yours sincerely

Guest Post on Daniel’s Diary

I have a guest post today on the Daniel’s Diary blog, run by the wonderful Sally Huggett. You can read it here: http://www.thecarer.org/?p=804

Great Expectations – Educational Support campaign from NAS

This post is reproduced with kind permission from the National Autistic Society

Half of all children with autism wait over a year for appropriate educational support, and over a quarter have waited more than two years, finds a new report by The National Autistic Society, published today.

The report launches our Great Expectations campaign on Special Education Needs (SEN), which aims to inform and influence the Government’s proposed overhaul of the SEN system.

Children should expect an education that sets them up for life, yet our research, with over 1,000 parents of children with autism and young people with autism themselves, found that far too many children with autism are not getting the education they need and deserve. Our research found:

  • just half of parents (52%) feel their child is making good educational progress
  • 30% of parents feel that their child’s educational placement is not adequate
  • 43% of young people feel teachers don’t know enough about autism.

This whole experience has been utterly destructive for the family. An ongoing, uphill daily battle, trying to help a child who is becoming increasingly socially isolated.
Parent of a child with autism

Parents should expect an education system that works with, not against, them, but too many parents have to fight the system to make it work.

  • 7 out of 10 parents say it has not been easy to get the educational support their child needs.
  • 47% of parents say their child’s special educational needs were not picked up in a timely way.
  • 48% of parents say they have waited over a year to get the right support for their child, and 27% have waited more than two years.
  • 18% of parents have had to take legal action to get the right support for their children, and have been to tribunal an average of 3.5 times each.

Stop picking on meParents told us that while they waited and fought for the right support, their child’s educational progress (70%), mental health (60%), behaviour (68%) and self-esteem all suffered enormously.

It’s really hard to go to school. People don’t understand how hard it is. They judge me for doing things I can’t help.
Young person with autism

Mark Lever, NAS Chief Executive, says: “We have Great Expectations that the necessary changes to the education system can, and will, be made. It is completely unacceptable that so many parents are still fighting a daily battle for their fundamental right to get an education for their child.

“The Government rightly recognises that action is needed, and that they need to reform a system which continues to let many children with autism down.

“Our report sets out the practical, often simple, steps that the Government can take to create a system that works for everyone. The proposed ‘biggest SEN reform in 30 years’, will shape the future of a generation of children with autism. Let’s get it right.”

Our campaign will be launched in Parliament this evening at a reception expected to attract around 80 MPs, including the Disability Minister, Maria Miller and Shadow Education Secretary, Andy Burnham.

We need your help

You can support our Great Expectations campaign by emailing your MP to ask them to raise these issues in parliament. To find out more about the campaign, and other ways you can get involved, visit our campaign homepage.

Our key recommendations

An education that sets children up for life and a system that works with, not against, parents.

Children with autism expect:

  • to get the support they need quickly and easily, regardless of whether they have a statement or EHCP
  • teachers who understand how to support them and who have easy access to autism specialists for help.

Parents of children with autism expect:

  • to have robust, simple ways to challenge the system if their child doesn’t get the support they need
  • local authorities to have a thorough understanding of the needs of children with autism in their area, and to plan provision accordingly
  • to be equal partners in the system and genuinely involved in decisions about their child’s education and the planning of local services
  • local information that empowers them to make the right decisions for their child.

Illustration - let's work togetherWe expect the Government to listen and to act.

Let’s work together. Let’s get it right.

To read the full report please visit www.autism.org.uk/greatexpectations

The Right Support Gets Results

Clare’s son was written off as lazy by teachers as a child. Severely Dyslexic and Dyspraxic, he faced an uphill battle in learning to read and write, let alone trying to succeed at French lessons alongside his peers in mainstream state school.

At school he was bullied by other pupils, segregated in food technology lessons because of allergies and given detentions because working memory problems meant he could not remember to bring everything he needed to class.

Clare said: “I was told by a Teacher at my Son’s School when he was six years old and she didn’t believe he was dyslexic , she said, he will never be an Einstein” I looked at her straight in the eyes and said “Do you realise Einstein was Dyslexic?” the look on her face was a picture, as though she wanted the floor to swallow her up”

Clare was determined that her son should get the support he needed that was not available at his school near Camberley. She fought Hampshire County Council for more than two years until they were forced by a Special Needs Tribunal to fund Michael at a specialist school that could help him achieve his potential.

This month, after much hard work, Clare’s son was ecstatic to learn he had scored an A in GCSE English that he sat before Christmas. Clare believes it’s a direct result of him getting the support he needed to overcome his problems:

“How amazing! It  just shows if a Dyslexic person is taught properly they can be amazing at English. I’m so proud of him.”

Even though the process of getting the support in place made Clare ill, she now helps other parents who are struggling with the Special Educational Needs System to get their children the help they need so they have the opportunity to do as well as her own son.

Should children with Asperger Syndrome automatically be statutorily assessed?

What’s your opinion – should children diagnosed with Asperger Syndrome automatically be statutorily assessed? I think they should because despite seeming to ‘cope’ in a regular class, so many children suffer psychological difficulties that goes unrecognised in busy classrooms. An assessment could open doors for them to get the psychological and educational support they need to thrive.

Others may say of course, that they should be left to get on with things and only have intervention when really thought to be needed. My argument against this would be that teachers are not sufficiently trained in spotting the difficulties encountered by AS children (and why should they be – they’re mainstream teachers after all, not special needs teachers) and in order to access the curriculum to their best, it would take an expert to assess them. Then, the correct level of help can be determined and the child has the best opportunity to get the right help.

Or maybe you have a different opinion on this? I’ve set up a poll on poll daddy for you to give your opinion Either way – please take the poll at the link below or leave a comment.. or both!

Back to school – but is it the right one?

For the first time since my sons started at their special school, this term we have had no fees to pay as they are both now being funded by the local LEA. I’ve written in post passim about finding our way through the special needs “jungle” of statementing and I hope if you are in that position now you will find some of the things on this site useful.

Indeed, I am only too aware of how many people are going through the process and are having a much tougher time of it than we did. We applied at a time when our LEA was reassessing the way it looks at Statutory Assessment, Statementing and Funding. For children with high-functioning AS, like our boys, it recognised that it had little suitable provision and that these children, who may have so much potential, so often fall through the cracks. They may end up in the benefits or mental health care system when they become adults because they have not received the social education they needed and cannot put to use  any academic education they gained into a worthwhile career. Or any career.

If they are lucky, they may have had supportive parents and may have been able to progress to university and into a job in a narrow-focused industry (sciences, accounting, research) where their ability to do the job is more highly prized than the ability to make lively and reciprocal conversation. These are likely to be the young people from the very highest and most able end of the spectrum, who are from middle class backgrounds with university educated parents themselves.

But too many AS young people will be in low-paid jobs far below their intellect because they cannot cope with the social interaction needed to progress up the career ladder and they have not had access to or found a route through to the support they need to thrive. Others may find their ASD so disabling that they will have to live in sheltered accommodation, relying on Disability Living Allowance and other benefits.

Now, it is not true to say that if you don’t reach the top of a well-paid profession you won’t be happy. For many people with AS, happiness comes just from having a friend to talk to or being able successfully to cope with everyday living. Many people with AS get married and have families of their own and are perfectly happy within their own circle, thank you very much.

But just think how different it could be if everyone who was diagnosed with Asperger’s Syndrome got the help they needed at an early enough age for it to make a significant difference to the outcome of their life. Yes, some may still need to live in sheltered housing and will work in in low-stress jobs because their condition dictates it. But for others it could mean the difference between a life of just coping and a life of thriving. Every single person with AS should have access to the right kind of education that my boys are lucky enough to be getting.

Parents who are worried that there my be something socially ‘different’ about their child should not just bury their heads in the sand and hope they will ‘grow out of it’. They should not just shrug and say their child is ‘coping’ at school when you really know they are just keeping their heads above water. Your kids have one shot at education and one shot at a successful and happy life and it is the duty of their parents to ensure they have the best opportunity of achieving that. Even if the option of a specialist school is not open, you can speak to your school’s SENCo, make your concerns known, ensure they are getting appropriate support at school and do your own research as well. Parents’ instincts are not often wrong.

I am speaking here from experience. We were once in the position of knowing something was different about both of our boys but not what to do about it. I spoke to their teachers, I researched their symptoms, I got them referred to a paediatrician. We got a diagnosis. We were told we’d never get a statement for either boy as they were too able so not to bother trying. We were told they had to be three years behind to get a Statutory Assessment. We were told all sorts of inaccurate things by teachers who didn’t know any more about Statementing than we did.

We didn’t listen and now we have two statements for both our sons who are both in the top few percent for ability. More than that, our LEA is paying for them to go to the school of our choice where they can be supported. It can be done. Your battle may be harder than mine; you may have to go to Tribunal. You may live in one of those LEAs like Hampshire that think brinkmanship is the order of the day. These councils will oppose you to the very last second in the hope that you will be scared off or you will end up broke, broken or both. They don’t care as long as they don’t have to shell out for your child. Shame on them, but do not be deterred. Even when you are tired and stressed and thinking of giving up, remember who you are doing this for and that they deserve the best you can give them.

If you need advice you can always leave a comment here and I will try to help or point you to someone who can. And things are changing. There are politicians out there who know about special needs, and parliamentary candidates such as Maria Hutchings who are fighting every day to improve the situation for young people with ASD. We just need to get the ones who are actually in the government to make sure that reviews that are currently being undertaken are acted upon so that the next generation of young people on the spectrum don’t face the same uphill struggle as ours do.

More House – A School To Be Proud Of

Saturday was the last official day of term – Founder’s Day. This is something we all look forward to and I don’t mean for the strawberries, cream and sparking wine you get at the end either.

It is the day we get to celebrate our boys’ achievements throughout the year, hear the Headmaster’s end of year review speech and listen to a visiting VIP make the keynote address. This year it was David Moran, the new  Ambassador to the Republic of Kazakhstan and Non-Resident Ambassador to the Kyrgyz Republic, whose talk included the notion that these years the boys spend at More House School will help them forge their characters that they will take with them through their lives.

There is a prize giving, where the boys are awarded certificates for particular areas of excellence and this is all the more touching because many are given in subjects where the boys have faced real challenges. Each boy returning to his seat with his certificates was beaming with pride; a feeling that we parents marvel at, knowing only too well how difficult their journeys have been so far. For our own two boys, we laminate their certificates and put them on the wall of their rooms so they can be reminded every day that hard work gets results.

But the highlights of the day were the speeches given by the outgoing School Captains. The two sixth-formers, smartly dressed in suits, came to the podium to give accounts of their time at More House. The first opened by saying that when he arrived at the school he was a dyslexic. Now, upon leaving, he is a dyslexic with attitude and confidence. He has a place at university and thanks to the education he has received has a great chance at a successful life.

The second young man opened his remarks by noting his diagnosis of Dyslexia and ADHD. When he arrived at the school he said, he was unable to sit still long enough to learn anything, but at MHS he was never excluded from any event or activity (as I presume had been the case at a previous school). He had received a good education both academically and socially and he stood before us a fine young man and School Captain, a son to be proud of as I am sure his parents are.

Both young men took the time to thank the school’s Headmaster, Barry Huggett, who is held in the highest esteem by all the boys and their parents. Mr Huggett is an inspirational figure and he leads the school with dedication, dignity and passion. He announced that the latest GCSE results showed an 83% A-C pass rate, which considering the number and range of difficulties experienced by the boys when they arrived, is outstanding.

Several things became crystal clear for me yesterday. The first is that the dedicated sixth-former I have seen at many events is, in fact, the Music teacher, Mr Place, which just shows me how old I’m getting. The second is that, contrary to government inclusion doctrine, the kind of school you go to is absolutely key to your future life. Had the School Captain gone to a normal mainstream secondary, he may well have left at sixteen with no qualifications and little chance of a bright future. Now he has university to look forward to and a real shot at success.

Some of the boys get support in exams such as extra time or scribes to help them show their true potential. Mr Huggett aims to cut the number by half, and then within a few years, to eliminate the need for special help in exams altogether. This is a lofty goal but one that, knowing Mr Huggett and his staff, I can see being achieved.

To all the staff at More House School, have a wonderful summer – you’ve earned it.

Journey’s End for our Statement – And a Brighter Future.

Just to update the post about my son getting the statement of Special Needs, we’ve just heard that the LEA has agreed to fund him at his independent special school. Great news and what a relief!

When they issued the draft statement they said they were concerned how he would manage in mainstream secondary.. so they were going to recommend mainstream secondary with support. Now we know, don’t we, that for many children with Asperger’s, it’s not a question of someone sitting with them or being withdrawn into social skills groups for so many hours a week. It is more a constant nudging that they need and a vigilant eye for when things are starting to go wrong.

During my research, I spoke to several mainstream SENCOs (Special Needs Coordinators). They are all dedicated to their pupils and do a good job in difficult circumstances, but one said to me that they sometimes “don’t hear from their ASD students for months until something goes wrong”. She was saying this to illustrate how these students ‘coped’ adequately with day to day school life. All I could think was that at my boys’ school the teachers are in constant contact with the boys and things are never left for months until something goes wrong. Although this teacher was trying to be positive and reassuring, I knew then that my son would end up depressed and unhappy in an environment where he could go unnoticed for months at a time.

Why should he simply ‘cope’ when other children thrive? This is not what I wanted for a boy who is incredibly bright with enormous potential but who is also extremely sensitive with sensory issues and problems with social integration. On the face of it, you wouldn’t think there was anything different about him. But it is precisely when ‘things go wrong’ that you see that he is not the same as everyone else and does not have the coping skills that most children his age have.

This is what More House School teaches him. As well as supporting him academically, it supports his social needs on a daily basis and when they see that he is heading for trouble or he becomes upset, they can help him develop the skills he needs so that when he is an adult, difficult situations don’t throw him off-course. This means that when he leaves school to go out into the outside world, he will be as well-equipped as anyone else to deal with all kinds of situations and different types of people.

If we hadn’t managed to get the LEA to agree to fund him, we would have had to pay £13,000 a year for our son to receive the right kind of education to give him the best chance of a successful life. We had tried mainstream and had found that, with the best will in the world, the kind of support he needed wasn’t available. So why should we have to pay for him to get what every other child in mainstream gets without any bother? We didn’t opt out of the state system out of snobbery. We were, in effect, forced out, because our sons were not mainstream children.

Our LEA seems to have woken up to the fact that it is cheaper and easier to pay for children to go to this particular school than it is to find all the support they need within the state system. If they had to make their own school for high-functioning ASD boys, complex dyslexics (who often have co-morbidities), and children with great Occupational Therapy and Speech and Language needs, they would have all the capital costs to pay on top of  the per-pupil cost. These would include buildings and maintenance, electricity and all those other costs that don’t include teachers and support staff salaries and benefits.

Just paying £13,000, and leaving it up to someone else probably seems like a great deal. We haven’t asked them to pay transport – we moved to be closer so I can easily take them myself every day as I would if they were at any school. This is my part of the deal as transport costs are a never-ending headache for LEAs and I see no reason to add to the burden when I am in a position, and more than happy, to take them myself.

However, although Surrey, our LEA, have done the right thing for both my sons, (and three cheers for them), I know of other families who are having to fight tooth and nail and at great expense to get their local authority to do the same. I know of one child in Hampshire, who got a statement with no argument but despite his severe social as well as physical needs, the LEA thinks he will be able to cope with a mainstream placement against ALL the advice they have received. This is pig-headed stupidity and a game of brinkmanship with parents to see who will blink first. There is no logic to it and when the case gets to Tribunal, Hampshire will lose and will have wasted taxpayers money fighting a case that didn’t need to be fought. The family will have suffered emotionally, financially and completely avoidably.

Hampshire have recognised this child’s needs for OT and SLT in part two of his statement and yet have made no provision in part three of the same document and they think this is acceptable. They think it is okay just to dump him in the local secondary where his needs cannot be met (and the family has the documentation to prove it). Hampshire should know that it won’t intimidate this boy’s mum. She is every bit as determined as I was to make sure her son gets the placement he needs. It is appalling that she should have to put herself under considerable strain to do so. I will keep you posted as to what happens.

Rose Dyslexia report – will it be enough?

Government adviser Sir Jim Rose’s report on dyslexia has been widely reported today. BBC News said, “More teachers will be trained to identify and support children in England with dyslexia, as a report says greater expertise is needed in schools. Sir Jim Rose, who recently reviewed the English primary school curriculum, said parents needed guidance on the help available.  The government says 4,000 teachers will be trained, and online courses provided to help them support dyslexic pupils.Charity Dyslexia Action called it a “landmark report” and a “great step forward” to have a definition of dyslexia which those affected could recognise and accept.

boyworkingIn his report, Sir Jim defines dyslexia as a “learning difficulty which primarily affects skills involved in accurate and fluent word-reading and spelling”.  The report will say dyslexia should not be treated as a distinct category of people, but as a continuum, like other disorders. He is also expected to reiterate that good quality teaching in children’s early years is vital.”

The link to the full BBC report is at the bottom of this post but what strikes me is that it has taken this long for a report to be done. Dyslexia is not new and the fact that it is only now being ‘officially’ recognised is a scandal. Whole generations of people have had their lives blighted because they have had unrecognised and untreated dyslexia. Instead, they have been branded ‘thick’ and have not been able to develop the life chances they should have.

I sincerely hope that this report’s recommendations will be acted upon so that teachers can learn not only how to identify children with forms of dyslexia but know how to do something about it. As I have said before, if the government wants ‘inclusion’ then mainstream teachers cannot just teach the mainstream. If teachers don’t have the access to the funding or training to make their teaching truly inclusive, then once a child is recognised as having a problem, they should be given access to teachers that can help them.

Ten million pounds doesn’t actually seem that much to provide all the help that is required, but it is a start and should be recognised as such.

I am no expert, however, I am of the opinion that some children with ‘continuum’ difficulties such as dyslexia and ASD need a different teaching style altogether that can only be delivered in a specialist environment. I have helped various parents with their statementing battles and have seen quite a few Educational Psychology reports. What seems to be a theme is that the working memory and non-verbal skills of these children is almost always poor, sometimes dramatically so, compared to their basic level of intelligence. This means they have difficulty remembering instructions and sequences, problems with attention and with organisation. These are in addition (though connected)  to the problems they have with making sense of reading or writing or both.

This group of issues will be difficult for a teacher with thirty other pupils adequately to address, however much training they have. They are, after all, only one person and are not superhuman, unless there are government plans to provide funding for that too. Isn’t it better that these children learn together and are taught in the way they learn best? It is great that teachers will be trained to spot Dyslexia – they should also be trained to spot and act when they believe a child is on the autistic spectrum as well. But my concerns are that we are simply asking too much of teachers when they have so many children of all varieties to deal with.

The answer could be in smaller class sizes so each child can get individualised learning, or grouping children according to learning styles. In our school, dyslexic, dyspraxic, dyscalculic and Aspergic children learn alongside each other in small groups because their learning styles are more similar and the class sizes are small enough that where differences exist, they can be catered for. Eight children may need things explained eight different ways, but that’s feasible in such a small class. I question whether that’s possible in a class of thirty.

It should be possible in a junior school of children with three-class intake per year to be sensitively placed so that the teacher has a fighting chance of helping everyone. When my younger son was in mainstream, he was made to go into the remedial English group because he had problems writing, even though his reading was top of the whole year. He was angry, frustrated and sometimes had to be dragged to the lesson because he knew he was in the wrong group. Now in his specialist school, he is supported in his areas of difficulties while still doing work that is at the correct level for his intelligence. We had to move him into the independent sector to get this but this kind of teaching should be available to every child whether or not they have the parents who are willing and able to fight battles to get them what they need.

This report looks like a good marker for future practice if the recommendations are acted upon. We await other reports that are ongoing such as the Lamb Inquiry and the other autism bills that are going through parliament to see whether a real difference can be made and the future of another generation of children is not lost to the vagaries of government policy.

BBC report here: http://news.bbc.co.uk/1/hi/education/8109554.stm

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An Actor’s Life For Him.

My 11 year old has just had his first co-starring role in a school play. He’s currently playing Ratty in a production of ‘Wind in the Willows’ at More House School.

When he came and told me that he was planning to audition, I was very worried about how upset he would be if he didn’t get a part. I wanted to shout, “Don’t audition! It’ll make you miserable!” But I held my tongue and told him what a great idea it was.

On the way home from school a few nights later, he was telling me what he had had for lunch and then, “And by the way, I’ve been cast as Ratty in the play.” I nearly crashed the car, gripped by a sense of excitement and fear. Excitement because someone had had faith in him to cast him (Thank you, Mr Kirkham) and fear because I knew that over the coming months we would have to HELP HIM LEARN HIS LINES.

Now, I have no objection to helping him, quite the contrary, I used to do the same for my mother in her amateur dramatics days. The fear was that he wouldn’t want help and wouldn’t bother to spend any time learning his lines at all. My son has Asperger’s and is very bloody-minded and stubborn. I worried he would refuse any offer of help and, true to expectations, the only time he would let us help was when he was in the bath. We would then have to perch on the toilet lid and go through the script with him as he soaked in the bubbles. Still, at least he was learning it.

The weeks passed and as often as we would ask him if he wanted to rehearse, he would politely turn us down. I ground my teeth with anxiety as I imagined him on opening night, being prompted with every line and ending up humiliated.

The Saturday before the performances, he finally let us help and we were horrified to find that there were several scenes that he only had a very hazy recollection of. In a frantic effort to assist, we recorded the whole script onto his computer so he could listen to it and practise.

Luca as Ratty

Luca as Ratty

Then, last night came. We filed into the hall, nerves jangling, taking seats in the second row, as we were banned from the front in case we put him off. The lights went down, and he was on stage, delivering his lines with perfection. He even prompted Mole at one point. How on earth did that happen? The boy was fantastic! They all were!

The production was beautifully staged, the live music was impeccable, the set imaginatively decorated, the costumes perfect. It was nothing like a ramshackle school play, it was … slick, impressive and great entertainment.

For the first time ever, as I watched my son on the stage, I saw him not as my 11 year old son, but as a young man in his own right, not connected to me at all; an individual with talent, confidence and guts. I was so proud, I could have burst.

For all his problems with ASD, my son is a truly remarkable young man. But although we have tried our best to help him as parents, it is the staff at More House School who have found a way to nurture his gifts, with expertise, understanding and always, encouragement. They make him feel that he has something to offer; that he wants to audition and join in, that there is a place for him and he is welcome. That is no small achievement and proof that with the right educational setting, obstacles can be overcome and where everyone is treated as the individual they are.

It is nearly the end of the school year and I expect I’ll gush again before then about how wonderful our school is, but for now, Mr Kirkham and your amazing team, three cheers for you all and a huge thank you!

Give ASD children the school provision they need

The Times today (Saturday 13 June 2009) has an article about children with special needs being excluded from school. It points to a recent survey showing that 55 percent of parents of children with autism saying their child had at some point been unofficially excluded from school.

Other figures in research by the paper show that although children with special needs make up a small proportion of children in schools, they make up a huge percentage of those excluded. The problem is worst in primary schools, largely because of a lack of resources.

I think that it is not just a lack of resources but the fact that schools are increasingly expected to cope with children with  emotional and behavioural needs as well as autism, with little or no extra training. A mainstream teacher should be just that – a teacher who teaches mainstream children. He or she is not trained to be a special needs teacher and should not be expected to be one just because the government says so-called ‘inclusion’ is key.

The situation is made worse by the lack of specialist places for children with special needs. With the closure of many special schools and lack of places for children with conditions such as Asperger’s Syndrome in the first place, these children often end up with an inadequate education because they have difficulty accessing the curriculum in the same way as their ‘normal’ peers. They also have problems making friendships because they are perceived by other children as ‘weird’ and who wants to be marked out as being friends with the weird kid? This leaves the ASD child socially isolated, sometimes bullied and learning that they have no place in ‘normal’ society.

There are those whom I have heard say (including the Schools Minister Sara McCarthy-Fry), ‘Well, they’ll have to mix with all sorts when they’re grown up, so school is a good training ground for when they’re adults.’  This makes me incensed; so, they should get used to being friendless, excluded, shunned and bullied because it’s going to happen to them as adults? Is that what they would want for their children? Secondly, it is not true that they are likely to mix with all sorts of people when they are adults. We all live in fairly small mini-societies and communities where we tend only to meet people broadly similar to ourselves, unless you are someone where it is your job to mix with all sorts of people such as those in public life or public service (note the word ‘public’). This is hardly the likely career path of someone with ASD. Unless of course, they get the proper training when they are young.

If they can’t get this specialist training at mainstream school because of a lack of resources and expertise, where are they going to get it? At a special school? Don’t be silly, they’ve either been closed or are over-subscribed.

It then falls to the independent sector to fill the gap. These independent special schools usually cost a lot of money because that’s what it takes to provide suitable specialist help to give these children a shot at a reasonable life. I say, if that’s what it takes, then that’s what it takes and the Local Education Authorities should cough up and pay unless they’re willing to find capital resources to invest in their own facilities.

There are good state special schools that can provide for children with severe special needs. But it is those with higher-functioning autism who are left to cope in mainstream school with or without support because there’s nowhere else in the state system for them to go.

My boys, both with Asperger’s, have experienced both mainstream and independent special school. I have nothing but praise for the teachers in their mainstream school; they did their best given the resources and time they had at their disposal. But it was not enough and I am sure they would be the first to admit it. Now at their independent school, they have the vital small class sizes they need, specialist teachers, access to Speech and Language and Occupational Therapy where needed, counselling when required and mentors who keep in close touch with them.

I was told by one SENCo at a good secondary that they could cope with children with Asperger’s and sometimes she didn’t have a problem for ‘months on end’ until something kicks off and it all goes pear-shaped. At our school, this never happens. Things never get out of hand because they are not allowed to. It’s a small school and teachers know what’s going on with the boys so things can’t kick off in the first place. That’s the difference.

My boys are getting the social and key skills training they need to help them cope with the ‘real world’ as well as a good academic education. For them, you can’t have one without the other. I had to work hard to get the LEA to pay for one son and I’m still waiting on the outcome for funding with the other. Until then we’re paying £12,000 a year ourselves which is not easy to find.

The point of ‘inclusion’ is to be included in society when they are adults, not stuffed into a one-size-fits-all classroom in the hope that they may learn social skills through osmosis. That’s politics at its worst, where dogma overcomes common sense and expert opinion.

Mother behind autism advert meets Brown – London Evening Standard

Mother behind autism advert meets Brown – London Evening Standard

A mother who wrote a message to Gordon Brown on billboards across the capital to highlight the plight of autism sufferers is to meet the Prime Minister today.

Polly Tommey, from Hampton, whose 13-year-old son Billy has the condition, said she would use their meeting to call for more support for thousands of people in Britain. Her autism charity estimates the Government could save £508million a year by giving jobs to people with the disorder.

She said: “I’m delighted and even thinking of voting Labour for the first time in my life after this. But what we now need are results.”

Mrs Tommey, 42, had made repeated attempts to reach Mr Brown and other ministers over the past few months but failed to get any response until now.  The mother-of-three had accused the Government of ignoring the “overwhelming stress and demands faced by families of those with autism”.

More than 500,000 people in Britain have the condition. She said: “Billy has a bleak future in our blinkered world. It is not fair that his potential is dismissed.

“Unless the problems of autism are understood and support is more widespread, we will see an underclass of desperate autism households.”

Mrs Tommey, a former actress who has worked as a body double for Charlotte Rampling, said she also asked to meet Tory leader David Cameron and Liberal Democrat leader Nick Clegg, but both said they did not have time. Her charity, the Autism Trust, was founded by Mrs Tommey after Billy was diagnosed aged two. Her £500,000 “Dear Gordon” campaign, at 76 sites across London in April, was funded by sponsors and advertising outlets.

Source: Sophie Goodchild, London Evening Standard,11.06.09

Child-Free.. as free as the wind blows..

This morning, without so much as a backwards glance, both our boys climbed on board a coach with their classmates and set off for their annual trip to PGL. For us, this means no children in the house for the next four days. We still have the dog of course, but he doesn’t put up a fight at bedtime or complain that dinner is ‘disgusting’.

At the same time as feeling ever-so-slighly elated, our hearts do go out to those brave teachers venturing forth with fifty boys aged between 7 and 11, all with some type of special need. These range from dyslexia, to speech difficulties to Asperger’s Syndrome. The teachers know only too well what puzzled faces could ensue with the saying, ‘It’s raining cats and dogs’.

Far from being tough little tykes, practically all these boys have in their backpacks their cuddly toys, blankets or other comforter, even the big strapping ones like my 11 year old. He has his old cotton cellular cot blanket, a stuffed reindeer and two stuffed Club Penguin plushies, all shoved down into his rucksack along with his tuck for the trip.

Our boys went on the trip last year and then, there were  a few tears from my youngest before he set off, but as soon as he was on the coach, he was smiling again. I shed more tears on the way home at the thought of them being away from me on a school holiday for the first time. When they returned, I was going through Son1’s bag and there was a suspicious amount of clean underwear, an untouched toothbrush and a still-neatly folded flannel. It turned out that he hadn’t washed, cleaned his teeth or changed his pants for the whole four days.

Despite this squalour, he still managed to bag himself a posh girlfriend at the end of trip disco. She rang him so often afterwards that I heard him say to her, “Can you not ring me so often, it’s getting a bit annoying.” Oh dearie me, he has a lot to learn.. but then he was only 10 at the time.

This year Son2 is determined to grab himself a girl as well. He has carefully chosen himself a pink linen shirt from Zara and refused to get his hair cut so it’s nice and long and trendy. However, after his success last year, Son1 is uber-confident that the prep school fillies will be throwing themselves at his feet again. He’s offered his brother a few pointers, but let’s hope his tips on personal hygiene aren’t among them..

UK lacks Adult Autism/Asperger’s Services

The news today that eight out of ten doctors need more help to spot autism shows the huge gap in services available, particularly for adults with ASD in the UK. The National Audit Office survey found that thousands, especially adults, are failing to get the right diagnosis and hence the right treatment or access to support services that they need.

Eighty per cent of doctors said they felt they needed additional guidance and training to help them identify and treat people with autism more effectively. Indeed, outside this report, this figure is echoed in schools, where many staff say they also need additional training to help children affected with High Functioning Autism and Asperger’s Syndrome.

The reports highlights the fact that high-functioning people with ASD are particularly vulnerable. They are often missed because around apparently 200,000 adults with autism do not have a particular learning disability. This group, the report “Supporting People with Autism through Adulthood” says, often fails to secure appropriate support, as health and social care services are mainly set up for those  with a learning disability, a physical illness or disability, or a mental health problem (which autism is not).

Almost two thirds of local authorities say they felt that current services for adults with autism are limited. Providing specialised support could improve outcomes for this group of people and their carers, and potentially enhance value for money, as the costs of establishing such support could be outweighed over time by overall savings.

The truth is that often people with Asperger’s Syndrome are of above average intelligence with areas of particular strengths, but because of their social and integration difficulties, they end up either in low-level jobs or on benefits because they do not have the interview skills to secure appropriate work.

The report says “Greater awareness of the numbers of people with autism, as well as better understanding of autism amongst those providing health, social care, benefits, education and employment services, would lead to improved quality of life for those on the autistic spectrum. Specialist support and joint working across all areas – clinical, social and employment – could improve the transition from childhood to adult services, make services more effective and improve value for money.”

There are several bills concerned with autism going through parliament at the moment, as mentioned in earlier posts on this blog. For children, there is more recognition that children affected by Autistic Spectrum Disorders need additional support in social skills but even so, a recent Cambridge study found that for every three children diagnosed, a further two go undiagnosed. If these children go through school and into the bigger world without intervention, they will only add to the figures this latest NAO study has found.

I believe that teachers or at least one member of staff in schools, preferably the SENCO, should be well trained in spotting autistic spectrum disorders and should have the backing of the school to do something about it. However, it is sometimes the case that when the school does spot a need, they do not get the support of the parents to do something about it.

A further problem is that when people who have received services throughout childhood then reach adulthood, the support they have had simply disappears and they are left to cope by themselves, or often remain in the family home with ageing parents, unable to forge an independent life because of their ongoing difficulties. Indeed, the NAO report says a key factor would be that if the proportion of the local population with high-functioning autism were identified by specialised services and given appropriate support, they would be more likley to be able to live more independently or to obtain and retain employment. The report estimates that if such services identified and supported around four per cent or more of the adults with high-functioning autism in their local area, they could become cost-neutral across public spending as a whole over time, as well as resulting in additional earnings and reduced expenses for individuals.

To read the whole report, click here.

Many autism cases ‘undiagnosed’ – BBC News

A significant number of children with autism and related disorders could be undiagnosed, a study has suggested.  (Reports BBC News Online)

A Cambridge University team looked at existing diagnoses – and carried out recognised tests to assess other children. Of the 20,000 studied, 1% had an autistic spectrum disorder, 12 times higher than the rate 30 years ago. Autism experts said it was crucial to have accurate data on how many children were affected by the disorder.

The research, published in the British Journal of Psychiatry, was carried out in three parts. The scientists first looked at cases of autism and Asperger syndrome among 8,824 children on the Special Educational Needs registers in 79 schools in East Anglia. A total of 83 cases were reported, giving a prevalence of 94 in 10,000, or 1 in 106 children. The team then sent a diagnosis survey to parents of 11,700 children in the area. From 3,373 completed surveys, 41 cases of autism-spectrum conditions were reported, corresponding to prevalence of 1 in 101.  This 1% rate confirms estimates from previous research.

They then sent the Childhood Autism Screening Test (CAST) to the same parents to help identify any undiagnosed cases of autism-spectrum conditions. All those with high scores, plus some who had medium and low scores, were called in for further assessment. The team found an additional 11 children who met the criteria for an autism spectrum condition, but had not yet been diagnosed.

The researchers say that, if these findings were extrapolated to the wider population, for every three known cases of autism spectrum, there may be a further two cases that are undiagnosed.

Professor Baron-Cohen said: “In terms of providing services, if we want to be prepared for the maximum numbers that might come through, these undiagnosed cases might be significant. “It is important to conduct epidemiological studies of autism spectrum conditions so that the relevant services, including education, health and social services, can plan adequate provision for all those children and adults who may need support.”

Mark Lever, National Autistic Society chief executive, said: “This is important research, which for the first time gives us an estimate of the number of people who don’t have an autism diagnosis but may be in need of support.

“Getting the right support at the right time is vitally important and access to appropriate diagnostic services is crucial.”

He said the NAS was campaigning for statutory guidance for diagnosis included as part of the proposed Autism Bill to try and improve improvement in local authority and NHS services.

Source: BBC News

Update on Special Educational Needs and Disability (Support) Bill

Source: Epolitix: Conservative MP John Bercow makes the case for his Special Educational Needs and Disability (Support) Bill, which has its second reading in the Commons.

Through my work conducting a review into children’s speech, language and communication services for the government, I already knew that children with special educational needs (SEN) were frequently being let down.

But the degree to which this vulnerable group of children are being failed by the school system was brought into stark reality when I saw the government’s scandalous exclusion figures. Children with SEN are nine times more likely to be excluded than any other children. So when I was drawn out of the private members’ ballot back in December it was a compelling opportunity to try to do something about the devastating lack of support that is leaving this vulnerable group of children unable to reach their full potential.

Far too few education professionals and schools have the appropriate skills, expertise and training to give the one in five children with an SEN the right support. There is no mandatory training for teachers in SEN issues, and despite their crucial role only new special educational needs co-ordinators (SENCOs) will be expected to demonstrate their SEN knowledge from September this year.

This step forward is due to campaigning by the National Autistic Society (NAS) and others, but, even so, many SENCOs will not be covered by the requirement. My SEN Bill is drafted by the NAS and backed by the Special Educational Consortium. It has its second reading in Parliament on Friday May 15 and it aims to improve training for teaching staff, introduce a new requirement that inspections should consider how well schools meet the needs of pupils with SEN and disabilities such as autism and reduce inappropriate exclusions of children with SEN.

The profound difficulties which children with SEN experience at school frequently go unheard and unrecognised, because their support is not reviewed and Ofsted inspections often ignore whether schools are meeting their responsibilities towards them. This is simply unacceptable, and schools and education authorities must be made accountable for the support that they provide. As a result of pressure from the Bill, children’s secretary Ed Balls has already committed to look at how Ofsted inspections can have a greater focus on SEN, so my Bill aims to ensure this becomes a reality.

I urge as many of my colleagues as possible to join me in Parliament on Friday to ensure vulnerable children get the support they need to reach their full potential, because when the right help is in place at the right time, children with SEN can and do flourish in school.

Source: Epolitix

Read the minutes from the second reading here

See also: Well said, Br Bercow!

Mother Needs Help For Self-Harming Son

I have just been contacted through this site by Sharon, a mother from Kent, whose son has been excluded from school following incidents of self-harming.

She writes, “My ADHD, ASD, Dyslexic, self-harming son, has just been excluded from school, because they don’t think Luke trying to strangle himself in class or him regularly saying he wants to kill himself, is a good role model for the other pupils. Their answer, discriminate (against) Luke for his disability. He needs support, not rejection and that’s all this exclusion is to him, rejection!”

This is apparently the second time Luke’s school has excluded him. His mother, Sharon, believes it is not Luke’s fault but it is because the staff in his mainstream school are not trained to deal with ADHD or Autistic Spectrum children.

Sharon is at her wits end. She says, among other self-harming incidents, her son has also tried to hang himself in the school’s P.E. cupboard. I have recommended that she contact SOS!SEN. Luke has been refused a Statutory Assessment Kent LEA and his parents have appealed to the SENDIST tribunal, which will be heard later this year.

Sharon says, “It looks like Luke will not have a secondary school to go to this year. The tribunal is only for a Statutory Assessment, then we need to go through the whole process yet again for a statement! We have already been to CAMHS for over a year now. No counselling, he was put on a waiting list for a ASD assessment, but there was a 13 month waiting list for that. The last time we went to CAMHS a new Dr. saw Luke and we now have a diagnosis of ADHD & ASD tendencies. Were awaiting a dyslexia test, and counselling for the self harming, which is quite evident to everyone, but they chose to ignore it, or put it down to bad parenting!”

Sharon says that Luke’s primary school failed to get him the help he needed and his problems are now worse as a result. I don’t know all the details of Luke’s case but it certainly seems to be an impossible situation to be in. However, it isn’t sadly, unique. Why is it that children in severe need of help with psychological problems are so often failed by those professionals around them?

I send my best wishes to Sharon and hope she manages to get the education and counselling for Luke that he deserves. If anyone reading this can offer free legal or medical advice to sharon, please contact me at info@specialneedsjungle.co.uk or make a comment below. Thank you.

Great News – A Statement!

Got the news we had been waiting for today – Son1 has got the Statement of Special Educational Needs we had applied for. Don’t have all the details yet and we still have to sort out placement (which if I have anything to do with it will be his current school).

This time last year the head of our school’s Learning Support department told me I should apply for a statement for Son1. I thought she was mad, because he is achieving well although his educational profile is uneven and his progress is affected by his social and communication difficulties caused by his Asperger Syndrome. Still, I thought, she wouldn’t say it if she didn’t mean it. We had been through the process before withour younger son and he is now funded at their independent special school by the Local Education Authority and I didn’t relish another trip down the same road. Still, I reminded myself, it’s not for you, it’s for my boy, took a deep breath and plunged in.

I started out by applying for an assessment, which was initially turned down (see earlier post). After they reversed the decision and carried out an assessment, it went to the area special needs panel yesterday and the news came through that he had been given a statement.

It does beg the question, why was he refused an assessment and then is given a statement and I think this is largely down to the ‘new broom’ approach at the local LEA.

I now have to convince them that paying for him to attend his current independent specialist school is the right thing to do, so no time to waste! It does show however, that if you do your research, persevere (like I said, I started this path a year ago) and you are sure of your case, then you can come out with the result you believe your child should have.

It may take longer than a year for some, depending on whether you need to appeal, but I was originally told neither of my sons would get a statement and now they have one each. I used the methods I have described on this website (see links at the top of the page) both times. So, anyone reading this who is onthe same road, take heart and don’t give up!

See the outcome here

Autism Costs UK economy £28 billion

A new study into the economic impact of autism spectrum disorders in the UK has shown that the total estimated cost is £28 billion each year. That averages out at £500 each year for every man, woman and child in the country.

The study, published in this month’s edition of the journal, Autism, includes estimates of the impact on the economy through lost productivity and says that further improvement in earlier intervention should considered and services across government and society in general should be better coordinated.

It combined data on prevalence, level of intellectual disability and place of residence with average annual costs of services and support, together with the opportunity costs of lost productivity. The costs of supporting children with ASDs were estimated to be £2.7 billion each year. For adults, these costs amount to £25 billion each year. The lifetime cost, after discounting, for someone with ASD and intellectual disability is estimated at approximately £1.23 million, and for someone with ASD without intellectual disability is approximately £0.80 million.

The research was carried out at King’s College London, Institute of Psychiatry, and the London School of Economics. Its authors found that, “At a time when the UK government is emphasising the need for higher rates of economic activity, and in particular is
trying to help people with disabilities and long-term conditions move into paid employment, the high costs of lost productivity stand out. Very few people with autism were in employment, which is hardly surprising given that there was little or no support to get them into work.”

The study points out that the figures only show what was spent or lost and not what ought to be spent. Autism advocates feel this figure should be much more, particularly in the area of early intervention and appropriate education. Such help can ameliorate the effects of the disability for many people with ASD, particularly those at the higher functioning end of the spectrum with Asperger’s Syndrome.

While the authors of this study emphasise that the costs presented do not provide an economic case for early intervention, they do highlight the importance of addressing that question. If early intervention could successfully change some aspects of behaviour that are cost-raising, both in childhood and subsequently, it may allow cost savings to be made and quality of life improvements to be achieved.

The research found that the range of sectors on which autism has an impact shows that there is  a need to ensure coordinated action across different parts of government and society more generally. It also said there was a need for a much better understanding of the cost and cost-effectiveness of various interventions and supports for children and adults to ensure that decision makers have a stronger evidence base when deciding how to allocate resources.

Study: Economic Cost of Autism: Martin Knapp, Renée Romeo and Jennifer Beecham, pub,  Autism http://aut.sagepub.com/cgi/content/abstract/13/3/317

Meridian TV Special Needs update

This is an update on the Meridian TV items aired last week. There was so far been around 150 posts from parents, almost all who feel they have been let down by their LEAs. Meridian’s Christine Alsford writes at http://blogs.itvlocal.com/Meridian/2009/02/11/struggling-with-special-needs/

“We are planning a follow-up piece based around teenagers for later this week. So don’t forget to tune in – we’ll be posting the report on the website too. We are persevering with this because so many of you are telling us how worried you are about provision at secondary level, and voicing your concerns about children who have been excluded and are going to end up with no qualifications and an uncertain future. But we also want to try and put together a whole board of photos of as many people as possible who have contacted us about their situation. This is to try and show the full scale of the problem and the sheer number of people who have contacted us. Please can as many of you as possible e-mail to us either a scanned picture of yourself and your child with special educational needs or just of your child. Please be aware that these will be used in a forthcoming broadcast and on the web so you should be happy for you child’s image to be transmitted. Please label them carefully –we will not be using surnames, and we won’t be saying what area they come from. Please just give their age, their learning difficulty and Christian name. The e-mail address to send them to is specialneeds@itv.com Many Thanks -Christine Alsford”

*Update note – Meridian are updating their website so this is not available at the moment

Meridian TV item on Special Needs Education

Last night, Meridian TV in the south, featured the first of two parts of an item on Special Needs provision. You can see it here: http://blogs.itvlocal.com/Meridian/2009/02/11/struggling-with-special-needs/ Reporter Christine Alsford visited two families whose children have Asperger’s Syndrome.

By this morning, 41 people had left comments on their blogsite about the site; almost all were affected by the issue and had faced ignorance, resistance and refusal by LEAs to get the most approprate education for their children. What amazed me was the Education Minister who said “Well when they grow up they have to function with regular people in the real world” or words to that effect. Yes, and that’s WHY is is vital that they get the proper education and social skills training as children to enable them to be full members of society! Sheesh! And that attitude epitomises the misunderstanding politicians have about Special Education. Is it any wonder we have to fight when the people making the policy have no idea what they’re talking about?

Note: Meridianis updating its website and this is not available at the moment

Diary of a Special Needs Mum Pt 1

I was talking to the head of the Juniors Department at my sons’ school the other day. She noted that parents of children without special needs had no idea how tough it was for parents who did have children who are not so-called “normal”. I hadn’t considered this particularly before, even though both my boys have Asperger’s Syndrome, so I lay before you a precis of a couple of my days and you can make your own minds up. Here is part one, between six am and 7.30am on a school day.

Friday morning, wake up at six. Lovely husband brings breakfast for everyone; the high point of my day. Neither boy wants to get out of bed. We need to leave by 7:30 to get to their special school twenty miles away on time. Son 1 (10) eats his breakfast and hides under the covers. Son 2 (8), complains that he doesn’t like his breakfast and asks for something we don’t have and nothing else will do. Tantrum ensues. Eventually settles for toast after setting everyone’s nerves on edge with ten minutes of whining that he never gets what he wants. Special Needs Mum (ie, me) heads for shower at 6.25 as Son 2 disappears into his room and shuts the door.

Ten minutes later, Son 1, who insists on having a fan blowing full blast in his face all night or he can’t sleep, drags himself out of bed and goes into his brother’s room to bother him. More whining and some screaming ensues. SNM is forced to stop getting ready and intervene. Is ignored. Count Son 1, following technique learned from 1-2-3 Magic book. Son 1 reluctantly disengages from attack on Son 2 and slinks back to his bedroom on the verge of ‘3’. Notices that Son 2 is sitting, naked, playing Lego. He had begun to get dressed, but got distracted. SNM puts his clothes next to him and tells him that Lego time is finished and he must now get dressed, then returns to drying hair, nerves frayed.

7am: SNM gets snacks and drinks ready for boys’ bags. Son 1 is dressed and sitting watching Disney Channel. SNM turns off TV because it isn’t allowed in the morning, something Son 1 knows very well but doesn’t stop him from complaining and trying to switch it back on again. Is sent to room to put his tie on.

7.15: Son 2 still playing Lego so SNM goes in and sits with him, handing him each item of clothing in turn until he is dressed. Son 1 makes an appearance in doorway to resume tormenting, sees SNM and retreats hastily. SNM realises Son 1 has stolen Son 2’s tie. Son 2 is incensed, pushes past SNM and leaps on his brother, trying to rip the tie from around his neck. SNM peels Son 2’s fingers from around Son 1’s neck and demands the return of the tie.

Son 1 whines, “But then I won’t have one,” completely missing the point that it isn’t his in the first place. Son 1’s tie is finally located, stuffed into a small pocket of his school bag, along with a letter from school saying they need some money for an author’s visit. Today.

SNM rummages in purse to find money, has none, catches husband on way out who has just enough and leaves for work with no cash left in wallet. SNM tells boys to clean their teeth and then searches, unsuccessfully for purses to put the money in. Both boys’ purses are missing.

Screams heard from bathroom. Five minutes to go before leaving time. Son 2 is weeping because Son 1 kicked him. Son 1 says it was because Son 2 poked him up the bum and called him fat (he isn’t).

SNM feels final nerve-ending tightening to breaking point. Takes deep breath, orders sons downstairs to put shoes on.

Son 1 can’t find his shoes. Son 2’s are under the sofa, covered in mud. SNJ snatches them away and rubs them over with a damp cloth. Son 1 finds his shoes, also muddy, puts them on and runs upstairs to get his bag, leaving trails of dried mud on the carpet.

SNM’s eye begins to twitch.

7.35, out to car, only five minutes late. Son 2 stops short of getting in, declaring he needs to find his Nintendo DS for the journey and refuses to get in the car until he has it, disappearing back into the house. Goes upstairs in shoes, leaving damp muddy marks on carpet from the bits SNM missed when rubbing them over. Five minutes later, re-emerges and screams at Son 1, who has taken the front seat when it’s apparently not his turn. SNM reminds Son 2 it is, in fact, Son 1’s turn who says helpfully, “Yeah, idiot, see, it IS my turn.” Son 2 tried to hit him but SNM catches his arm mid-air.

Time: 7:42. By now, traffic has built up on the motorway slip road that wouldn’t be there if we’d left at 7.30. Join queue of traffic as Son 2 turns on DS, with jingly jangly noise grating around SNM’s brain. But at least we’re on our way and that’s something to be grateful for.

Now, those mums with “normal” children would probably say, pursed of lip, that SNM doesn’t have control over her children, or that their own children wouldn’t dare to behave like that or perhaps, even suggest that SMN’s parenting skills are lacking.

I say just getting my boys into the car every day for their trek to school is a triumph. When my younger son was diagnosed with Asperger’s, one mum said to me “Well he isn’t that bad, is he? It’s not as if he’s severely autistic or anything.” To her, because my son didn’t fit her “autistic stereotype”, we must be just exaggerating or trying to pass off bad behaviour as a medical condition to excuse our bad parenting. Perhaps she’d like to swap her morning routine with me and then see how smug she is. But I know that my tale above will be familiar to thousands of other parents of children with special needs and for others, it’s probably not half as bad as their mornings. But you know, my sons’ teacher is right. Parents of neuro-typical children are often quick to condemn when they see children behaving badly, without realising they have a hidden disability such as Asperger’s. Perhaps if they walked in the shoes of a special needs parent for even one morning, they might think differently. And would I swap my children for theirs? Actually, no I wouldn’t because though they can be tough to deal with, they’re mine and to me, despite everything, they’re perfect.

Part two will follow, when I summon the energy to do it. Thanks for reading.

Update: Find Part 2 here

It’s all about the school.

Yesterday, my son was discharged from regular check ups with his nurse practitioner at his specialist clinic, a cause for celebration. She has been a wonderful support to us along the way to getting the best we can for him but now he has started at an appropriate school for his needs, he no longer needs medication to help him focus because there are only nine boys in a class and he is taught in the way he learns best (imagine!).

His nurse said there’s nothing she can now offer that he isn’t getting at school and she’s right; it’s all about the school. A paediatrician at the centre said the same thing: one size doesn’t fit all and the right school can make the difference between a life of underachievement and a fighting chance of success.

What chance does an ASD child, even with TA support, have in a class of thirty (several of whom probably have behavioural difficulties or other issues) when that child has sensory integration problems and needs a quiet environment to be able to put pen to paper at all? What chance for success does a bright child have who reads several years ahead of his age but can barely write, when he’s left to fester in a remedial English group where he refuses to work because he feels his intelligence is being insulted?

This is the conundrum faced by mainstream schools when trying to educate children with complex needs. It’s just not possible to put him in a group with his intellectual peers because he thinks so differently and can’t keep up with writing speed. But putting him in a group with children who write as slowly as he does means he’s frustrated and not challenged. The same is true for many bright dyslexic children; where do you put them if they’re clever enough to be in the ‘top’ stream, but whose reading or writing difficulties mean they can’t present their work as well or whose thought processes don’t follow ‘the norm’?

Can mainstream provide sufficient expertise and support for these children? Politicians pushing the ‘inclusive’ agenda say it is perfectly possible and perhaps in a very few schools that have sufficient specialist staff and resources, this may be the case but for the majority, it just isn’t.

I was told when my son was in mainstream that there were five accepted methods for doing maths at his level. My son had his own, sixth, very complicated method and even though he would get the right answer, I was told he had to conform to one of the methods laid out in the national curriculum. Good luck with that, I thought, because you’ll have a job on your hands.

I have spoken to many highly experienced teachers, special needs Teaching Assistants, Outreach staff and Clinicians in the past few years. NOT A SINGLE ONE believes inclusion for children with complex learning styles or difficulties in the answer. Not one. Why are their views being ignored in the relentless push for everyone to be taught in one setting? Please, if you know, make a comment and enlighten me. It’s possible that I and they are all misguided souls. But somehow, I don’t think so.