This is a long post -SORRY.
Blossom introduced me to this site and I really hope you can help me -cus I need it so much!!
We adopted our son when he was 8 months old. At 2 he had no speech and was referred to SALT - Language Delay was dx.
J jas always been a funny little old man - always wants to be with grown ups - doesn't socialise at all with other children - not even his brother - he is a real loner. He has so many Autistic traits - hand flapping, spinning, loads of sensory probs, no eye contact, very rigid in his ways and obessive about cars and pencil sharpeners.
When he was 7 he was having real problems at school with his behaviour and he was referred to the EP - she then reffered us to the Family Consultancy Team.
Went along to our first appointment and after 30 minutes walked out after being told J had ADHD - "heres some Ritalin - go away and we'll see you in two months time". The Ritalin made J's Autistic traits so much worse so we stopped it after 6 months - he had begun to bark like a dog and was spinning all the time.School said his behaviour was worse on the drug.
EP suggested that J may have Autistic Traits and referred him back to SALT and FCT.
SALT said J had prob's with his Semantic and Pragmatic Speech and felt it could be SPD - though she said she could not confirm this as it has to be done by a Peadiatrician.
When we went to FCT we told the Doc we did not think J had ADHD as he had no problems with his concentration or attention - he just seems to not understand what people are saying to him and we felt that J was exhibiting many of the characteristics of a child with Aspergers - She disagreed with us and asked if we were challenging her DX of ADHD - BIG MISTAKE!!!
After a very lengthy battle we have finally got J statemented. School has been horrific - a real batch of horror stories - so we have removed J from school on the grounds of psychological damage being caused by the inappropriate placement of our child. Our GP has written to the LEA confirming this.
Have got a placement for J in a local maintained special school - but not until Sept 2005 - have to home teach til then - LEA are trying to provide some home tuition.
We got a phone call yesterday from the community peadiatrician and he wanted us to go and see him today. We had completed the Attwood Questionnaire and sent it to him last week. The Pead said he wanted to discuss J's dx.
Couldn't sleep at all last night - spent all night reading through the posts on this site!!!!
Headed off to see Doc this afternoon and he has basically told us to go away and get on with our lives.
He said that J is such a complex little chap that it would be almost impossible to get a dx. J is functioning three years below his chronological age - he's 9 in March. He is very small - age 5 clothing - his speech is delayed - he cant go to the loo on his own - I have to feed him sometimes just because he struggles so much - he can not read or write his name - yet he is so wonderful in so many ways - he makes me laugh with his literal speech - he is always giggling and sounds like a little chimp - he is so cute - I adore him.
The doc said that a dx would not help J in any way as it would not offer J any more than he is already getting.The doc felt we were doing the wrong thing by keeping him out of school because J needs to face his fears and he can not learn to socialise with people if he is at home with us. We do go out and J has only got one friend who comes to play cars after school.
Doc said that J will grow up always thinking that we will be there to hold his hand - we must remember that we will be old and grey soon and J will be left to fend for himself - Jesus I'm only 36!!!
Doc could not understand why we wanted a Dx. He explained that if J had classic autism he would be able to dx him there on the spot - but because he is so complex the assessment would be a very lengthy process.
The only Doc in our area who is able to do the dx has to travel here once a week and she see's only one child each time - there are 325 children in our area currently awaiting ASD assessment.
The Doc told us J would be assessed in three years time!!!!He'll be nearly 12 by then!!!
Our GP has applied to the PCT to try and get funding for us to go to the NAS Diagnostic centre. PCT have not ruled out funding but require evidence as to how long it will be before J can be assessed in our local area. GP thinks they will eventually turn us down because there just simply isn't enough money in the pot!!
We have been to BIBIC and J was assessed by thir EP who said that J was presenting as a child who was vey likely to have Aspergers and should be assessed by a multi agency team as soon as possible. BIBIC confirmed that J had Dyslexia and Dyspraxia and they wrote to our GP saying J would need to be assessed by OT asap.Two year wait for OT!!
Has anyone got any ideas what we can do? We know that a DX isn't going to change J - but everyone tells us a DX will open doors for J - apparently not in Devon!!!
Should we just forget getting a Dx and carry on as we are - do we really need a DX?
So confused - so tired - so fed up with having to fight all the time!!!
Sorry its so long - do tend to mumble a little - tell me to shut up!!!
Thanksxx
Here are some suggested organisations that offer expert advice on special needs.
SN children
Language Delay at 2, ADHD with Dyslexia,? Autistic Traits and ?Dyspraxia at 7 - No Diagnosis at 8 - HELP!!!!!
JaysMum · 09/11/2004 21:47
This reply has been deleted
Message withdrawn
This reply has been deleted
Message withdrawn at poster's request.
This reply has been deleted
Message withdrawn at poster's request.
This reply has been deleted
Message withdrawn
Don’t want to miss threads like this?
Weekly
Sign up to our weekly round up and get all the best threads sent straight to your inbox!
Log in to update your newsletter preferences.
You've subscribed!
To comment on this thread you need to create a Mumsnet account.