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.

Parents on the Warpath…and other stories

It’s been a difficult week for many parents at our school, who have discovered that our LA doesn’t want to pay our statemented sons’ school fees, because there has been a lower-than-inflation fee rise after several years of a freeze.

I do wonder what the council would think if we all declined to pay our council tax because of an increase. Nope, county council, I think you’ve asked for too much this year, so please re-invoice me for a lower amount and I’ll consider it.

This is despite them paying the full (increased) fee for new statemented boys. Bonkers, eh?

Methinks someone a) hasn’t quite understood the existing legislation and/or b) is such an difficult character (this is polite speak)  that no one else in the department has had the courage to whisper that it’s sshh *actually illegal* and s/he’s bringing the authority into disrepute in the eyes of more right-thinking colleagues, parents, headteachers and.. oo, probably the Department for Education. Especially if they read it here. Who knows?

To say we’re all angry and distressed is a very large understatement. I did write to the LA earlier in the week, and am still awaiting a response. I’m not a very patient person, but more patient than some parents who’ve already written to their MPs to voice their complaints. Quite right too.

I’ll be doing the same next week (and maybe even speaking to my excellent contacts in the local press and regional TV), unless our esteemed headmaster finishes half-term on Thursday afternoon holding a nice cheque for the right amount and not a penny less. The press love stories like this, though – I should know, having been a journalist for quite a long time.

Really, don’t mess with special needs parents and most certainly DON’T mess with their children’s education that they’ve fought hard to secure. They’ve been through statementing and come out the other side still standing (just about). Do you think they’re going to let this slide? I think not. You only have to read our Facebook Group to know that.

If you’ve been in a similar situation, do let me know.

On to some great stories from the week:

Empowering parents is the goal for Pat

I’m delighted today to introduce a guest blog post from Pat Bolton, who works with a small  team of Participation Practitioners at Parents In Power, Gateshead,  www.parentsinpower.btck.co.uk  Pat works at the coalface of special educational needs and helps parents every day to get the support their children need.

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Parents In Power is a Parent/Carer Forum. Every Authority has a parent/carer forum and to find out more information or where your own parent/carer forum is located in your area go to www.nnpcf.org.uk . We are independent and  work with some of the most amazing parents of children with disabilities, their strength and fortitude is second to none, no matter what is thrown at them week after week.

I have a son who is now a young man, 19 years old with ADHD, Dyspraxia and Autistic Traits and he is the most awesome of people. His brother who is 17, puts up a lot with his brother and is one cool dude, but one thing is for sure they love each other to bits and boy do they look out for each other.

So I have walked that walk, that long and frustrating journey and I have to say, sorry folks, but it doesn’t end at  16. But I was lucky enough to get my son in an Independent Special School and paid for by the Local Authority.

Every parent/carer that I come across without a shadow of a doubt tells me they are sick of fighting for what they feel their child simply needs and is entitled to in order to lead a normal a life as possible and for their child to reach their potential in whatever that means.

Their problems are nearly always linked with their child’s school and the frustration and energy it takes in trying to get this part of their child’s life right, I mean let’s face it, what a massive part of their lives it is.

Meetings are daunting at the best of times, but when you get into school for a meeting and there is yourself and 7/10 professionals around the table it can sometimes actually be frightening. To prepare parents for such meetings I go through all the issues that need to be addressed, and the points that the parents feel they must point out.  We write them down on what can sometimes be a long list, so in the meeting the parent is satisfied that they have said everything they want to. Or if it is too emotional for them, I will bring these points up for them.

I have gone into meetings where the parents have been an absolute quivering wreck, feeling sick and just wanting to go home, yet just by me saying, “I am with you, you are not alone, I am there to support you” brings out the best in the parent. They are assertive, they get their points across and work down their list of questions. I minute it all for them. When they leave the meeting, although they hardly remember a thing that has been said, they feel so empowered.

That is one of our main aims, to empower parents to be competent and confident in supporting their children.  My biggest concern over the years has been to ensure that when a parent gets their child’s statement to ensure that it is quantified and qualified. So it does not say something like a ‘ systematic programme of speech therapy’. What does that mean? One hour a day,  a week/month/term and by whom. If it isn’t quantified and qualified how can it be legally challenged? A school might interpret that as an hour a month, a parent might interpret that as a couple hours a month. It needs to be fully explained in the statement.

Another part of school life that has really annoyed me are exclusions and as I write this I am eagerly waiting  for the release of the results of the Children’s Commissioner, Dr Maggie Atkinson’s inquiry into exclusions: http://www.childrenscommissioner.gov.uk/  This is due out 19th March 2012 and I will reading this with a fine toothcomb, hoping she has captured the inequalities of exclusions for children with Disabilities, especially those with disability related behavioural difficulties.

My son was excluded 11 times in one year, what did he learn from this? Simply that every time he wanted a couple of days off school to misbehave,  it worked. No matter how hard I worked with the school and I worked a lot harder than the school did on this one, they still excluded him until the day the big permanent exclusion came. My son and I cried together all weekend. The result was an independent special school which could not cater for his academic ability.

For those just embarking on this journey I wish you luck, get as much expert support as possible you will need it.  If you don’t know where to start contact your local parent/carer forum, website address above and they will advise you.

My article in SEN Magazine – order a trial copy for free

I’m very excited as I have an article in the new edition of SEN Magazine. It’s in their ‘Point of View’ section, entitled “Recognising The Problem”. It’s about how, in order toaccomodate a child’s special educational needs, it is imperative first correctly to identify the problem. This is often difficult when a child has complex needs or a ‘hidden disability’ and the teacher is not trained or motivated to recognise the signs, particularly in otherwise bright children.

I anticipate it will be available online on their site at some point in the future but this is a great publication for anyone connected with Special Educational Needs and you can order a free trial copy at the moment by clicking here: http://www.senmagazine.co.uk/component/chronocontact/?chronoformname=trialcopy

 

You can follow SEN Magazine on Twitter and Facebook. They regularly publish informative and useful SEN articles that are useful for both parents and professionals.

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.

Daily Mirror Launches Caring For Carers Campaign

The Daily Mirror is today launching a new “Caring For Carer’s” campaign to highlight the disgraceful situation regarding the level of benefits for people who care for disabled relatives and friends.

At the moment, Carer’s Allowance is just over £53 a week, no matter how many people you care for. Both my sons qualify for Disability Living Allowance for their ASD and so I am entitled to receive this paltry amount. But, should I be lucky enough to be able to find a part-time job that I can do while they are at school, I cannot earn more than £95 a week net or I lose the benefit.

Before I had children I could earn up to £200 a day. I had intended to go back to work after they were born, but because of their disabilities, I was not able to leave them in the care of anyone else. To do so would have meant finding a specialist nanny, the cost of which for two children would have wiped out my earnings. Added to this, the fact that a journalist’s life is shift-working and the situation would have been untenable.

When my sons were in mainstream school they would sometimes refuse to go because of the stresses they faced in that environment, meaning I would have to have them at home all day. What kind of employer could put up with a worker needing great chunks of time off? My youngest needed one-to-one swimming lessons as he could not cope in a group and this was expensive (and every child should learn how to swim if they are able). I also helped out in school several times a week because I felt so guilty that they were difficult to cope with.

Now, despite the fact they are both at a specialist school, I am still unable to get a full-time job because of the long holidays they have. I cannot leave them in a holiday scheme because they would find it distressing which would have a knock on effect for their lives and ours as a whole. So, we must rely on my husband’s income (and he was out of work for six months this year), our boys’ DLA and my princely sum of £53.10 Carer’s Allowance. We live in Surrey, an expensive part of the country, because it is near to their school. We are only glad that their fees are now paid by the LEA or we would have to sell our house and seriously downsize to afford the cost. Before the LEA agreed to take responsibility for the fees, all the DLA and Carer’s Allowance went towards making a small dent in the special school fees. Even now, it still disappears into the great well of  things they require for school and to support their special needs.

But still, I would say that we are lucky because we have at least one decent income (that my husband has to travel three hours a day to earn). What if something happened to him (God forbid)? Then I would have to care for all three of them on £53.10 a week. This is the situation for many carers today. Many face huge debts as well as the stress of caring for someone who is sick or disabled or the headache of making ends meet on a pittance.

This is what the Daily Mirror says:

These are the Mirror’s three demands for the Caring for Carers campaign, which we are launching today:

An immediate Government review of carers’ benefits and the Carer’s Allowance to be increased.

More respite breaks and health checks for carers.

Carer’s Leave to be made into law so carers can ask employers for discretionary time off work.

I whole-heartedly welcome this campaign and hope you will support it too. How can you help? You can visit the Daily Mirror’s blog page by Emily Cook to read the whole story. Then you can visit the Carer’s UK site to sign their Poverty Charter in support of the campaign. If you’re reading this you probably have an interest in special needs, so I hope you will take a couple of minutes to do this. I am a carer, though lucky enough not to be on the poverty line. After our recent brush with redundancy though, I know that could change in the blink of an eye. So I am sighing the charter and will do anything I can to support this worthy cause and I hope you will join me.

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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.

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..

Government Supports Autism Bill (UK)

The Government has, for the first time, declared its support for what could be England’s first Autism Bill. The National Autistic Society (NAS) celebrated the move as a vital development for people with autism as Care Services Minister Phil Hope committed to enshrining in law a raft of new measures, via the Autism Bill, which could drive a dramatic improvement in local authority and NHS services for people with the condition

On 13th May, MPs voted yes to the Government’s proposed blueprint and time scales to improve support and in a major development the Care Services Minister gave the forthcoming national adult autism strategy extra force by adding it to the Autism Bill. The Bill now awaits its third reading, scheduled for 19th June, and with the support of the Government is likely to pass to the House of Lords.

Mark Lever, chief executive of the NAS said; “We are absolutely delighted that the Government is prepared to take decisive action to tackle the shocking lack of help which leaves people affected by autism feeling isolated, ignored and often at breaking point. The Autism Bill has passed a major and crucial hurdle on the road to becoming law but there’s still some way to go. Autism is a serious, lifelong and disabling condition, and without the right support it can have a profound and sometimes devastating effect on individuals and families, so we will keep working with the Government to ensure the Autism Bill can deliver where it is really needed.”

The Autism Bill is being championed through Parliament as a Private Member’s Bill led by Conservative MP Cheryl Gillan and was drafted by the NAS on behalf of a coalition of 15 other autism charities. She said; “I commend the Government on their commitment to transforming the lives of children and adults with autism via the support of Schools and Learners Minister, Sarah McCarthy-Fry and Care Services Minister, Phil Hope. Today is a real turning point for the thousands of people affected by autism who have been unable to get the help they desperately need and I look forward to working with the Government to make this vitally important Bill a reality.”

The Government’s measures come as our I Exist campaign found that at least 1 in 3 adults with autism are experiencing serious mental health difficulties due to a lack of help. Under the Autism Bill, the national adult autism strategy, due at the end of this year, will hold local authorities and NHS services legally responsible for providing support for adults with the condition and ensure they have clear routes to diagnosis, assessment and support. The NAS is urging as many people affected by autism as possible to take part in the consultation for the strategy which closes on the 15th September.

This boost for adults with autism builds on a previous commitment by Sarah McCarthy-Fry MP to fulfil the Autism Bill’s original demands for better support for children via new regulations for Children and Young Peoples Plans. In an important win for the wider disabled community, these would legally require local authorities to collate and share data and information on children with disabilities with other agencies, which could see a huge sea change in disabled children’s services and ensure they get the support they need to fulfil their potential in adulthood.

Source: National Autistic Society

Read more on this subject

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

Surrey to review SEN Assessments

I recently attended a Partnership with Parents workshop in Surrey. The subject matters were an explanation of the new SEND rules given by one of the co-chairmen,an update on the Lamb inquiry and a presentation from the new Head of Surrey SEN, Debbie Johnson, asking ‘Why do so many parents appeal against Surrey’s ‘Refusal to Assess’ decisions’.

I was particularly looking forward to the latter, as although my younger son is statemented, my eldest son had recently been refused an assessment by Surrey. Ms Johnson was a very impressive speaker and was concerned about Surrey’s position at the top of the charts for councils that have appeals registered against it. Much to the surprise of many in the room, she said that what should be happening is that if Surrey LEA was not going to defend its decision at the SEND Tribunal or thought it might give way if an appeal was launched, then it should actually not be refusing to assess in the first place. This was new! Someone with common sense! We all sat up a little straighter.

Ms Johnson said there was a lot to be done in Surrey and the feedback she was getting was that parents weren’t being listened to, the process wasn’t helpful and she was going to change that. She said the changes had to ‘unbend the system’ and make statements ‘fit for purpose’. She would be disbanding panels that took parents around in circles and stop decisions being made that were not clear for either the parents not the authority.

It also appeared from figures she presented that, that in line with the large number of refusals to assess was an equally large number of pupils in Surrey diagnosed with ASD. Could these stats be related? Could it be that a lack of expertise within county provision in the field of high-functioning Autism and Asperger’s, coupled with an increasing number of parents unwilling to go down without a fight is at the root of Surrey’s large number of appeals? As Hong Kong Phooey would say .. ‘Could be!’

Ms Johnson then described the difficulties faced by a highly intelligent child with Asperger’s in a mainstream setting. She described my son to a tee. Afterwards, I spoke individually to her and she agreed to visit my son’s case again.

And guess what? True to her word, this week I heard that the decision has been reversed, my son is now going to be assessed and I am so relieved that this part of the application is now resolved. There was also additional evidence I presented to them as part of the reconsideration and I am sure this made some difference; having been turned down I had sprung into action and prepared an fulsome appeal so I was able to send it to them to see if we could avoid the necessity of going to Tribunal and it seems this has had an effect. The lesson is, if you believe strongly in your case, DO NOT give up! Those who make the decisions are only human, just like you, errors can be made or minds can be changed if you provide a convincing enough case. But you have to put the effort in – don’t ask and you don’t get.

Back at the workshop, in spite of her ‘new broom’ presentation, Ms Johnson wasn’t let entirely off the hook – many parents had serious grievances about the LEA’s past practices, including one family who had been threatened with costs (illegally) if they went ahead with a Tribunal hearing the next day. To her credit, Ms Johnson tackled the issues head on and took the particular case mentioned extremely seriously. I might pity the hapless LEA employee who made the threat if it hadn’t been such an unethical thing to do in the first place.

I left feeling vaguely cheered, though it remains to be seen how much difference Ms Johnson’s new broom makes to the way Surrey carries out its practices. I, and parents like me, will be watching closely.

See the next post ‘The SENDIST Tribunal’ for information on that part of the workshop.

Diary of a Special Needs Mum Pt2

Despite the hassle of the average pre-school morning, I always look forward to picking up my children after a hard day at school. That is, until I actually pick them up.

Waiting for them to emerge after prep, Son1 appears, flings his backpack at me and tries to get his skateboard, which is muddy, into the back seat of the car.  He flings himself after the skateboard, ignoring my protests.

“Where’s my snack?” he says, by way of a hello. That is all he says, plugging himself into his MP3 player. I resume the wait, for Son2. And wait. And wait.

“Did your brother do prep?” I enquire of Son1.

“Wot?” responds my eldest, removing an earphone. “No. He did swimming.”

Oh. My. God. The swimming pool is outdoors. Son2 has Reynaud’s, which was why, that very morning he’d decided to go to school on a mild day with wooly hat, gloves and scarf on. No coat though. In fact he was in the car before he realised he wanted these items and when I said we would be late if he went back, he’d screamed ‘I’ve got Reynaud’s you b***ch!’ at me. He is nine. Needless to say I took him back into the house, late or not, for a good talking to whereupon he found the things he wanted anyway.

So swimming on an Autumn afternoon, in the outdoor pool. Could be quite pleasant, you might think. Well, it might be, unless you’re the poor sap stood waiting for him to have a very long, hot shower afterwards, to warm up, before he finds his kit, puts it in his PE bag, finds his backpack and shleps all the way up to the car park.

“Shall I go and tell him to hurry up?” asks Son1, amazingly helpful.

“No, I’ll lose you both.” I answer. Nonetheless, Son1 is off on a mission, bolting from the car and disappearing into the school estate. By this time, everyone else has come out and left, some with parents, some in taxis. There is a delicious dinner smell coming from the Refectory where the boarders are about to sit down to their evening meal.

More time passes. Twenty minutes, in fact. Son2 eventually arrives, with luggage, which he drops at my feet. “Where’s my snack?” he asks, obviously a familiar greeting in our family.

No Son1. Son2 offers to go and look for him.

“NO!” I shout, feeling like we’re in an episode of the Chuckle Brothers. Son1 appears several minutes later saying he can’t find his brother, who is now sitting in the car, plugged into his own ipod.

It’s ten to six. Finally we set off for home, where I have earlier prepared Bolognese for dinner.

Forty-five minutes later, I have persuaded everyone to come to the table, except husband, who is still putting in long hours to pay for school fees for the son not yet statemented (That’s another story).

Half-way through dinner Son2 shouts, “This has meat in it. I told you I was a vegetarian! You’re so stupid!” Clearly he didn’t notice during the first five mouthfuls that Bolognese usually consists of meat.

“But yesterday, I made Cauliflower Cheese and you said you didn’t like that either!” I reply, “If you’re going to be vegetarian, you have to at least eat vegetables.”

“I don’t like Cauliflower. Why do you always spoil everything I try to do? You’re mean. I hate you!” he says and carries on eating anyway.

Later, Son2 must do his homework as he didn’t do prep at school. This is a nightmare, as anyone with children like ours will attest. We get, ‘You write it for me?’, ‘It’s too hard’, ‘I can’t write’ and the inevitable ‘Who invented homework anyway?’

My husband is home now and he is rapidly losing the will to live as he tries to help, telling his youngest that if he can’t do homework at home, then he must do prep, not swimming. Son2 throws himself on the floor before we come to a compromise that if he writes it, we will dictate it. This he can just about manage, though we have to spell every word and if we go too fast, he shrieks at one of us.

I leave father and son to it and go to supervise Son1’s bedtime ablutions. We have bought him a High School Musical toothbrush that plays two minutes of music so he know how long to clean his teeth for. It’s a fantastic idea and my son’s teeth are still recovering from the shock of being cleaned properly for the first time since he started doing it himself.

“Mummy, can I do free-running, you know where you jump across buildings?” he asks.

I look at my son in wonder, “Darling, you just told me that you hurt yourself falling off a bench you were sitting on. Your whole life is like free-running.”

And his isn’t the only one. My husband and I often feel like we’re hurtling at great speed from one precarious place to another trying to negotiate the obstacles of our sons’ special needs that make them exasperating, though never less than lovable. I keep telling myself that one about God not giving you more than you can bear, but sometimes I seriously wonder if he got me mixed up with someone else.

However, when they’re in bed, finally asleep, they look just like beautiful angels and you know that, despite everything, you wouldn’t swap them for the world. And then I go and have a large glass of wine.

<Diary part 1