Hi there,
Apologies in advance for the long post, but there is a lot to say! My son (now 6) is a kind, caring, and bright little boy, but since the age of about 3, has had increasingly challenging behaviour. At first we put this down to becoming a big brother and having less attention from Mummy and Daddy.
Howewver, as School loomed, we (and particularly my Wife) worried about how he would cope with his behaviour. Indeed, I hoped that he would calm down once he had the routine and structure of School to work in.
However, barely a term passed and we were hauled in by the head of infants and the class teacher as his behavour had tipped into the unaceptable and he was really in quite a bad place. THis was just prior to christmas a couple of years ago.
(He was using rude words incessently, calling out, disrupting the class - ruining his work deliberately, 'showing his tummy' to get a reaction).
We were by the school to seek an assesment, as the school particularly wer utterly desperate for some sort of guidance - a.
I must add that the School is a private one which will have some baring in what is available to us.
We duly went to the GP to ask for a referral for an assesment. However, a couple of months later, we found out the GP had 'forgottoen' to send the referral on! So he hurridly sent the letter on!
It contained all the relevant details, about his behavour , but after a few weeks we received a rejection from the local NHS specialist department (Community Pediatrics or somthing liek that ). THey suggested that 'as his problems were mainly behaviour al, we should seek a CAF'.
Of course, we knew nothing of a 'CAF , other than that is where Eastenders get their breakfast from.
The GP hadnt a clue what to do either, and started writing letters all around to try and get some advice.
Eventually, through my own research, we found the early intervention team run by our council, and liasing with his school, we managed to eventually start the CAF process.
The main goal of the CAF was to get the assesment started, and to bring in measures to help our son with his problems.
We've now had about 3 or 4 TAF meetings, since July. After the first meeting, and at the start of the Summer holidyys, we asked the GP to forward a referral again, stating that the CAF was in place.
Unfortunately the GP faffed and needed the school intervening to insist he refer as part of the CAF process. After another couple of months, he finally did so (in september).
We havent formally heard back from the Pediatrician department yet but I have rung in several times to chase up the referral.
They have it, but they admitted they hadnt yuet got a SPeech and Language therapist in place (they had not had one for most of the year!!). However, one was due to start this january (as in - now!) and we would get an appointment after they set up their new joint assesment service.
I rang again this month, only to be told there was 'a delay' and it would be March before the clinic started, and we'd hear then
Meanwhile, the school have been very supportive, and while our Son has made great progress, it is with caveats. His behaviour continues to be challenging, but the list of behaviours seems to be a checklist of Aspergers.
1. He becomes very distressed if there is a change of routine, like a diferent teacher, or a change in timetable - even when warned about it in advance.
2. He finds it hard making freinds, and often is left out.
3. He becomes very fixated with single subjects for long periods, intensely. EG. Christmas 2013 he was totally absorbed in the Planets , this christmas it's Minecraft. In between he has had facinations with Insects, biology, and so on. He rarely talks about anythign outside his own interests, and often assumes everyone else knows everything he does about the subject and only wants to talk about that.
3. He often blanks out - totally ignoring what people are saying, and when we get his attention cant remember what was said. Often when people say hello to him, he doesnt respond - even if he knows them. He might give the reason as ' didnt know who it was' even though they said.
4. He Fidgets, makes noises, calls out inaprpopraite things during lessons, and tries to elicit reactions from other children.
5. He is very bright, and has an advanced reading age (they say it's the reading age of 9), is academically above average, although his handwriting is pretty por.
6. He has lots of anxieties. EG. He panicks if he cant get his socks on, or if his arm is stuck in the coat sleeve. He often cant sleep and keeps getting up with excuses. Rarely beyond 10pm though - but he is always geting up in the middle of the night to go to the toilet - several times.
7. He lines up his cuddly toys in bed, needs them in a certain order. He needs music on to sleep, a light, and a 'dream tablet (usually a sweet) - and needs us to 'relax him'. If any of these is missing, he freaks out and gets very upset indeed.
I could go on, but from what we understand of the condition, and from his teachers experience with other children with the condition, he appears to be ASD/Aspergers.
SO we have an indeterminate wait for hsi assemsne,t as there is a significant backlog in the area.W
THe School are pushing hard for an assesment, but we are fearful of what will happen if he is dagnosed with Aspergers/ASD.:
Our fear revolves aroudn the fact that, as he is in a private school,, there are fewer resources available to them to assist. However, the smaller class size, and increased focus/availability of his familiar class teachers and TAs do seem to help.
Ware are worried that if we have to remove him from his current seting to enable us to get access to apropriate support, he could end up in a setting that excaserbates his problems, and makes them worse. There are some great state schools locally, but they are full up - and there is no space. The onlu choices are the unpopular schools, one of which has been in turmoil lately after ofsted failed them, with high staff turnover.
So while we can afford his school fees at this level, we could never afford to privately fund Speech and Langauge therapy, or one to one support.
However, we are very worried that if we take him away from this, it could be throwing him out of the frying pan into the fire in terms of how his behavour will be affected. He has a wonderful teacher, the staff at his school are fab and have spent SO much time over helping with this - his Senco is amazing. We really couldnt have asked for more. BUt we have the lingering feeling that they may refuse to help once his needs are clear, due to lack of funding and avaiability of support.
(already one of the staff has warned us that we need to think about perhaps his school isnt the best place for him, and reeled off a list of the things State schools can provide. However, my Wife is involved ins tate education and knows exactly what is realistically available, and it isnt quite so rosy - leading to increased anxiety from us)
Anyway, I am really just asking if we are being unreasonable with our expectation, or if anyone else is in the same boat?
We just want our Son to be happy, whatever condition he has.
Thanks for reading.
