[senco-forum] Autism appeal --Daily mail report

We couldn't get a proper education for our autistic son
By SARAH SPILLER - _More  by this author »_ 
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spiller&in_name=on&in_order_by=relevance+date)  Last updated at 08:23am on 9th  July 2007  
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(http://www.dailymail.co.uk/pages/live/articles/news/news.html?in_article_id=466945&in_page_id=1770#StartComments)  Channel 4 presenter Alex 
Thomson and  his partner describe their battle with the bureaucracy that 
rules the teaching  of children with special needs.  
On a bright spring morning, we headed for luxurious offices in the shadow of  
St Paul's Cathedral.  
For all its modern exterior, Procession House sits in an ancient part of  
London. Holborn is famous for its lawyers, for their interminable battles and,  
of course, for their fees.  
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My beautiful boy: Sarah Spiller with Henry
Read more...
    *   _One in 58  British children is autistic, new figures reveal_ 
(http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=4
66966&in_page_id=1774)  

So perhaps it was appropriate that this was the setting for our final,  
nerve-racking shot in a year-long fight to secure help for our much-loved but  
severely disabled son.  
Ahead of us, walking briskly, we spotted 'the other side', an officer from  
our local education authority (LEA) in Essex.  
We had been dealing with her for 14 bruising months. Now she was trundling a  
suitcase full of papers - the case against us at the Special Educational 
Needs  and Disability Tribunal we were about to face.  
We took refuge in a cafe to settle our nerves. In our struggle with the  
educational bureaucracy, we had, believe me, exhausted all other options.  
In one sense, we were not alone. More than 3,000 families a year seek  
independent arbitration on behalf of their children.  
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Sarah Spiller with partner Alex Thomson and the twins
One in five children is said to have special educational needs. For some, and 
 our beautiful seven-year-old Henry is among them, the problems are serious  
enough to warrant a formal "statement of special educational needs". This is a 
 contract spelling out the difficulties and promising appropriate help.  
Or that, at least, is the theory. As my family was to discover, in practice  
the system is shot through with delays, obfuscation and, at times, outright  
confrontation. Far too many children never receive the teaching, the support or 
 the equipment they need.  
No wonder the LEAs that fund the system, and the Ministers in overall charge, 
 face mounting complaints. The tribunals were set up in response to parents'  
growing frustration and were supposed to dispense professional, fair-minded  
justice at almost no financial cost.  
The reality, though, has proved very different. When we walked into the  
tribunal, we did so accompanied by a barrister and a growing sense of panic. The  
battle had already cost us £11,000.  
Why on earth was this so hard? After all, we are both used to taking on the  
authorities - we have made it a career. I am a freelance journalist, and Alex  
Thomson, my partner and Henry's dad, presents the news on Channel 4.  
We hadn't, though, reckoned on fighting a system that can pit parents against 
 the very people who are supposed to have children's interests at heart.  
Going up to London on the train, clutching our photos of Henry, we had talked 
 about the many twists and turns in his short life. Henry and his twin George 
 were born three months early, both weighing less than three pounds. As they 
grew  into toddlers we prayed they would develop normally.  
And then Henry started having strange shudders, as if his whole body shivered 
 down one side. His limbs would jerk up and his eyes rolled. Shortly before 
his  third birthday, a neurologist diagnosed an aggressive childhood epilepsy.  
Henry, we were told, might have severe learning difficulties and would need a 
 great deal of help at school.  
The differences between the twins became ever more apparent. While George was 
 getting into Lego, Henry flitted around the house at top speed, emitting  
high-pitched shrieks. He rarely stopped and, when he did, he would conk out  
exhausted.  
We put both boys into the local village primary's pre-school section and, in  
line with professional advice, waited to see how things panned out.  
While George thrived, bringing home his cheerful artwork, Henry couldn't get  
his hands to do very much at all. They trembled, sometimes continuously. He  
found it very hard to concentrate and his balance was precarious.  
Often, when we picked him up, all he wanted was a big hug, reassurance and  
then a long sleep. One night, Alex spoke to Henry's teacher. She told us: "If 
he  stays here, he'll sink."  
If it was clear that Henry had serious problems, the solution was far from  
obvious. It seemed the private sector might be the answer.  
We come from families of state-school teachers, so it was a wrench when we  
moved both boys to a normal independent school, with small class sizes and  
expertise in special needs. The staff backed us immediately when we said we  
wanted Henry assessed for a "statement".  
However, this was a long, drawn-out process. Henry was assessed by the LEA's  
educational psychologist and other health professionals. A full five months 
on,  the LEA drew up a draft statement.  
It accepted he had severe problems and offered to pay for 15 hours of  
one-to-one support from a teaching assistant at Henry's school.  
We showed the LEA a report from a psychologist at Great Ormond Street  
Hospital, who said Henry should get the highest levels of support. It upped the  
hours to 25 but Henry still found school life very hard.  
Then we started to notice other things, too - odd mannerisms including a  
frenzied flapping of hands. He seemed in a world of his own, completely unaware  
of other children and obsessed with Thomas The Tank Engine and then with all  
aspects of the Jurassic age.  
There was still the nerve-jangling screeching and squeaking. Sometimes, in a  
high-pitched voice, there was exquisite singing. He would also recite large  
chunks of his favourite video, Walking With Dinosaurs, adopting an orotund BBC 
 voice to do so.  
We knew by then that something was badly wrong. So when Henry was diagnosed  
as being on the 'autistic spectrum' we were not surprised, even though the 
news  was shattering. I drove home from hospital in tears.  
So now we had autism, one of the least understood conditions, to contend  
with. And once again we had to compile a mountain of research about the best way  
forward. We found that one of the most successful therapies for autistic  
children is a teaching method called Applied Behaviour Analysis, or ABA.  
We found an ABA adviser, paid for school staff to be trained in ABA and hired 
 tutors for Henry at home. He began to concentrate for longer periods and 
became  calmer, slowly getting more of a grasp on real life.  
All this cost, of course. We did the sums and realised that the burden of  
school fees and ABA therapy was not one we could carry on our own. So we  
approached Essex LEA about Henry's autism diagnosis in the hope it would  reassess 
his needs.  
But not only did the authority refuse to re-examine Henry, we were told that  
our paediatrician had decided he did not have autism after all. She had 
spoken  to an LEA psychologist and she had changed her mind.  
It was a hard one to fathom. There are no miracle cures for autism. Moreover, 
 we now had another assessment from a different NHS consultant saying that 
not  only was Henry definitely on the autistic spectrum but he also had a  
hyperactivity disorder.  
We slowly started to realise the scale of what we were dealing with. It was  
painful enough coming to terms with our son's disabilities but, if we were to  
give him the help he needed, it would mean taking on all these people.  
Reluctantly, and with our own costs rising inexorably, we hired a solicitor.  
We appealed against the LEA decision and it agreed to reassess Henry.  
This time, we left nothing to chance. We paid for an independent educational  
psychologist, speech therapist, occupational therapist and psychiatrist to  
assess Henry. Each report cost £500. They revealed that, at the age of six,  
Henry's understanding of language was that of a child of two-and-a-half.  
As well as autism and a hyperactive disorder, he had dyspraxia - severe  
difficulties with his motor skills and co-ordination. He needed the autism  
programme, intensive help with his language and weekly occupational therapy.  
But the greater Henry's requirements, the more Essex would have to pay.  
Needless to say, when the LEA sent us a new statement on Henry last September,  
its recommendations were poles apart from those of our independent experts.  
Terrified by our increasingly precarious financial position, we tried to  
negotiate with the LEA. But it would not budge - and it emerged it had hired a  
barrister to fight us. "This," said Alex, "is Kafkaesque."  
Solicitors' letters went back and forth. Our house filled with mounds of  
paperwork. It was a struggle to keep going. Then, one night, Henry appeared,  
trailing down the stairs clutching his plastic dinosaur.  
He drew himself up and began reciting his latest video of choice, ITV's  
Prehistoric Park. "Finding a triceratops is one thing," he intoned gravely.  
"Bringing him home is quite another."  
We flung our arms around him. Without knowing, he'd told us what this was all 
 about. We had to bring our lovely little triceratops "home". We had to 
ensure  his autism programme continued. We couldn't give up.  
As I had feared, the tribunal in March was like a day in court. On one side  
sat our witnesses and barrister; on the other, the LEA's.  
And then, for the first time in more than a year, there was a chink of light. 
 After putting us through all this, the LEA indicated it might be willing to  
compromise. And, yes, money was at the root of it. For a start, it had 
assumed  it would have to pay £16,000 a year to transport Henry the nine miles to 
his  school.  
Had we ever managed a reasonable conversation, we could have told officials I 
 was happy to drive both boys. I had to drive George anyway.  
Then it emerged that the package we proposed could be cheaper than the  
support Henry might need in the local village primary. So - and this did seem to  
be a miracle - the LEA was prepared to settle.  
It agreed to fund Henry's school autism programme, pay for weekly  
occupational therapy and pay his school fees.  
We count ourselves lucky. I know of families who have remortgaged their homes 
 and been to numerous tribunals to secure the help their children need. 
Appeals  to tribunals have risen 61 per cent since Labour came to power.  
It is a great irony that, had Essex recognised the true extent of Henry's  
needs at the outset, the authority could have saved itself - and us - thousands  
of pounds in administrative and legal fees.  
Like many parents struggling under intolerable pressure to get the right  
education for their disabled children, we can't help thinking there must be a  
better way. 