Hi I am Grandma to B. B age 7 was diagnosed in March this year with Aspergers and think although it was expected by the time the diagnosis was made we are still coming to terms with it.
We have had/are still having an absolutely horrendous experience of school. To cut a long story as short as I can B is my daughters only child and she was quite young when he was born. She has done an amazing job and we are so proud of her, returning to college to resit/improve her GCSE's, then a two year college course, then obtaining and holding down a full time job. She has also managed to buy her home, learn to drive and buy and run a small car. She has a supportive family which has helped especially with childcare. (lives next door to us so we can/do give support as she needs she is really independant though it seems to include limitless access to our fridge!!!!)
My younger children were just starting at primary school when B was born and were still there in years 5 & 6 when he started. Up to that point we had no issues surrounding the school but then E & L has no problems either so we had no reservations in sending B their when it came time for him to start school. We were already aware that he had problems and with that wonderful thing called "hindsight" it all makes sense with his diagnosis now. When his mum started work B's childcare moved to new setting and that is when we started to hit problems and after 18 months he was asked to leave as the nursery could not meet his needs (They also said they were not prepared to upgrade their security to prevent him from escaping onto the main road as he was he was the only child tall enough to reach the release buttons to escape) He was and still is very tall for his age and looks much older than he actually is - which raises people's expectations of his behaviour. He then moved to new setting which offered much better management of his problems and they involved ed psych. The local surestart senco also got involved and helped with his transition from nursery to reception class at school. They were forewarned of his problems and we were optimistic that his needs would be addressed. How wrong were we!!!!!!!!!!!!!!!!
I must add at this point we were acutely aware that B was handful but to be honest we were very gullibly being led by the school and no point did anyone mention the possibility of ASD. He stumbled through reception year and into year 1 - during which time he was rather protected from the bullying Headteacher and her puppets by very lovely teacher. She has since left the school and has since told B's mum she did suspect ASD but could not say anything??? no idea why?? Things came to a head as soon as B went into year 2 (coincidentally my youngest had just left at this point).
At this point the relationship with the school started to deteriorate. There was of finger pointing and accusations of his home life being the cause of all B's problems - There was/is absolutley no evidence to support this and I feel that the Head just saw B's mum as an easy target, very young single mum. We had been trying to find ways to help & support B for years and of the people involved many came to access him at home and certainly found nothing at all that would indicate this the opposite even. The year 2 teacher took an instant dislike to Bailey - and we then found ourselves drowning in the world of exclusions, in school exclusion, 3 day home exclusion, illegal exclusion and the very real threat of permanent exclusion. During year one B's mum had an abortive attempt at getting help from Camhs -she requested referral from GP and was referred to see a psychologist had one brief appointment with a follow up arranged. This was cancelled as she arrived at the hospital for it and despite chasing for months she was eventually told case closed with no explanation. When very early in year 2 things deteriorated dreadfully school made a reluctant referral to camhs via the school nurse. At his point school Head was saying "you must start to make B behave in school or we will permanently exclude" What can I say your child is just "BAD" and does not warrant us spending any funding on him" "I have a psychology degree - I am sure B is not ASD" Why don't you move him to another school the only problem is learned bad behaviour he just needs fresh start" She even sent a report to CAMHS stating she thought B's problems were because he has attachment disorder - something she later denied ever suggesting but his consultant has the said report. She has told so many lies and has tried to totally destroy any confidence B's mum has as a parent (she is actually a wonderful and we try to tell her often - a child with AS is hard for anyone)
For our part we set off on what has been and still is a very steep & rapid learning curve - no one explained about school action/plus, IEP's, statements etc. Eventually getting appointment at CAMHS this time round has turned out to the best thing ever, B is still having problems with school, we feel caused by their reluctance to accept his diagnosis - the consultant psychiatrist, aware of the problems we were encoutering with school went into school himself and told the head in person of his diagnosis, he then came out and rang B's mum to tell her of the most bizarre conversation he had with the head - He told her B's diagnosis of AS, she said "no he is not", then when he questioned her suggestion of "Attachment disorder" she denied ever suggesting it even when he told her had it in writing from her. She then went on to say she always suspected ASD????????
B is still having desperate problems in school partly due to the fact the he has been moved out of his correct year 2 and put into year 3 with what school allege is full time 1:1 support. He problems are with social interaction and communication which all reports state he shows great immaturity in so they have moved from his peer group and put him with older children - he is totally stressed, he has no friends and today we have had a meeting with the SEN Team Manager, the school & parent patnership. The school state they can no longer meet his needs!!!!!!!! To be honest we expected it, they have been desperate to offlaod him and were determined to do it before he recived a statement which would mean they would be stuck with him..
We had looked at other schools but were doing on our own with the only help from Inlcusion at the LEA after his exclusions - their help was to give us a list of schools in our town and say off you go let us know if you find one fancy. That turned into a very disheartening excercise and we could not be sure "out of the frying pan into the fire" however during todays meeting we were told by SEN Assessment Mgr B will def get a statement (full time support including lunch & breaks) they will also help us find a new school that can and will meet his needs and help arrange a smooth as possible transition. I'm sure its not the first time that they have had parents in tears at their meetings but even they seemed appalled at our treatment by B's current school.
So after an emotional day we are resigned to the fact B will be moving schools - we know it will be traumatic and stressful for him and us but we also know that in the long term his current school has caused him untold harm & stress and hopefully fingers crossed it will be the best thing ever.
Really we are lucky - B has a diagnosis & he is getting a full statement and I know lots of people are fighting for this (got refused DLA yesterday first attempt intend appealing = can't get everything)
Feel like this post is just a long ramble and I have missed loads out but I hope it gives the gist of our journey so far
Joanne (B's Grandma)