Language Delay at 2, ADHD with Dyslexia,? Autistic Traits and ?Dyspraxia at 7 - No Diagnosis at 8 - HELP!!!!!

[JaysMum]

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

Just caught up with this. What an awful situation. There aren't many private people in Devon though (we were looking a few years ago). It may be worth aking your GP (who sounds as if he's the only one with half a brain cell) about fragile X. It can be confirmed with a simple blood test (although make sure they do the DNA test as well as just a karyotype).

I have a friend who comes under west devon who is currently going through something similar.

BTW the SALT is probably correct with her assessment of the language problems- she's just not allowed to diagnose. I would have sggested BIBIC to get ther reports- but you've already done that.....

JimJams where about are you in Devon?

Have found a Paed locally that may diagnose J - waiting to find out more info from GP. Going to cost a small fortune though - better give up the drink and fags and save my money!!

Or sell my tired bag of bones to science!!!!!

fio's right about denial, but its just as often denial by the Drs etc! I'm afraid I think you will have to go private but I really do think it will be worth it.

Jaysmum, you sound wonderful and hats off to your perseverence - but I guess you don't really have any choice?! I am really cross on yours and especially on your son's behalf - it must unbelievably frustrating and I really wish I had something more contructive to add.

I could bloody scream the house down tonight!!!

Just got off the phone from talking to my Mom - ARGHHHHH!!!!

Explained to her all the probs we are having regarding getting J diagnosed and she said....

Why are you bothering ... J will grow out of his silly ways....just give him sometime to grow up...you waste so much time and energy worrying about the boy.....he is adopted what did you expect......if he gets a job painting and decorating then at least he's got a job.....he just needs a firm hand....good smack didn't harm you....

Guess who's not talking to her mother now!!!!
Bloody woman drives me insane - just gald we live 200 miles away from her!!!

Sorry for the rant - just so angry and pi**ed off.

Tried to call Dr Wesley today - no response!!!
Will try again tomorrow.

Sorry guys for moaning - just get so mad when people think my wee man will grow out of his ways.

HI jaysmum - we're in Plymouth- so come under plymouth and west devon health authority. (fairly useless )

YOur mum sounds clueless- ignore her. Until taken over by aliens and replaced by someone understanding a few weeks ago my MIL used ot come out with that sort of stuff a lot. I'm still reeling from dh's BIL asking whether we'd considered giving ds1 a "good slap" (he's 5, non-verbal ASD).

jumping in to say jimjams, did you say your MIL had woken up?? I'm not going to congratulate her, but YOU (and maybe also Charlotte Moore). Trusting it's a lasting new leaf.

Jaysmum, your ds is so so lucky to have you.

Can't add anything I'm afraid ..just wanted to post to say hello and wish you strength .. I am very about the way you are being treated but I know that is of no help to you .. good luck

This is stunningly awful! I can't believe the way you and your son are being treated. I'm truly shocked, though I'm sure people would tell me that's very naive
Three years is OUTRAGEOUS. Have you written to your MP yet? The local papers? The head honcho of the local NHS trust?

Phoned MP today and have an appointment in 6 weeks time - thats the earliest he can see us - to discuss J'd lack of DX and the lack of ASD help in schools etc.

My youger sister has Aspergers - not DX until 24 - she has phoned my mother and really given her a good telling off - but mother still doesn't believe my sis had AS - really in denial - silly woman.

excellent.....i haven't forgotten you...!

Got your mail -Thanks.

Waiting for that call - will Cat my number.

xxxx

jm, try your councillor, they are often better or at least as good as MP and have weekly surgeries

Also try this

THANKS

Will sit and write to MP tomorrow - you are a star for letting me know I could do this.

Hows it going Jay's Mum?
Have you contacted any adoptive parent support groups? There are lot of others out there with special kids.
I assume that J has been checked out for FAS and FAE, given his birth mum's history of alcohol use? I was wondering if this might be adding to any other problems he might have???

J doesnt have FAS - but according to the letter we got yesterday from our meeting with the Paed he has got....

1. Specific Learning Difficulties(dyslexia)
2. ADD
3. Dyspraxia
4. Learning Difficulties(low conceptual ability and difficulties with perpeptive skills)
5. Emotional and behavioural difficulties(including bedwetting and indiscriminate mictuturition)
6. Semantic Pragmatic Language Disorder
7. ?ASD

Paed then goes on to say we must be aware that Dyspraxia and SPD ARE NOT on the Autistic Spectrum - well according to all the books we have read they are!!!

In fact Lorna Wing herself has reported that SPD is one of the purest forms of Autism - but what does she know - he is a Paediatrician (who told us that he knew very little about ASD!!!)

Doc also slated me and the hubby - saying that J had not bonded with us and that we had not bonded with him because of his problems!!! Easy option isn't it to always blame the parents!!!

Apparently we should undergo some counselling to sort out our problems - the only problem we have is that we can not get anyone in our area who has a slight knowledge of ASD to assess J!!!

Have contacted NAS and they said that this is a common occurance - especially if the child is adopted - NAS told me that they have so many adoptive families contact them because no one will acknowledge the problems associated with ASD in their children. Nice lady at NAS also said it is not uncommon for parents of Asperger children to be told they are experiencing Munchausen by Proxy. This is so unfair. All we want is for our J to be happy and get all the help and support that he can.

NAS also found a Doc not to far from us that can do the DISCO assessment. I faxed him all of J's reports and he contacted us today to say that without even seeing our son and from just reading the assessment reports we have had done in te past - he knew our little man has Aspergers.

Have now got an appointment with him - he will come to our house and stay all day. During this time he will do the DISCO assessment and various other ones too. He will play with J and assess his speech and ability to communicate.

We will then get a written report with a diagnosis within a week. All for £900 - ARGHHHH- no Xmas pressies for me this year then????

The Doc is even going to write to the Paed and inform him that his letter to us was inaccurate and suggest that the Paed refrain from handing out misguided information and diagnosis!!!

Have contacted our adoption social worker and he is coming to see us on Friday for a coffee and a chat - he has also passed on all our paperwork to the adoption agencies EP, who has read it and reported back that in her opinion J is presenting as a child who has Aspergers.

Just find it ironic that the Education Welfare Officer stated in her last assessment of J that ..
Mr and Mrs * have a very strong realtionship with their son which should be protected at all cost. They have a very good understanding of their childs needs and accept his strengths as well as his weaknesses. The parents give their child support and guidance which will enable him to reach his full potential in a loving caring environment.

According to the Paed, hubby and I are causing our son stress and anxiety because he isn't a perfect child - how very wrong he is and how more determined we are now to get J diagnosed to prove him wrong!!!

The battle will go on!!!!

Nothing more to add here but will hopefully speak soo about this. I am, a first for me, speechless..........

Outrageous! It's crystal clear from every word you write how much you love that boy. He's a lucky boy to have such fabulous parents, I think everyone who read this would agree with you. And you are all the more perfect parents for him because you clearly feel lucky to have him in your lives.

Jaysmum, apart from the cost this is very good news although totally stressful and upsetting for all of you

Jaysmum, your paed sounds like a cold fish. I think your ds is a lucky little boy to have you battling on his behalf. Good luck with the assessment.

Just thought I'd let you all know that we have contacted the BIBIC EP who assessed J in April this year. He has said that he will be happy to do the DISCO assessment for us for £640.
He dose feel though that the local authority is unlikely to accept his assessment and diagnosis because it has not been conducted in the local area!!!
The LEA and LHA have both not accepted any of the independent reports that we have had done in the past because they were not done in the school or hospital environment!!!

Surely a dx is a dx regardless of where it is done - so long as it is done by a professional with the relevant qualifications and experience.
And to be honest the BIBIC EP knows more about ASD than any of the local professionals.

Have now got to get on bended knee and ask gran to lend me the dosh - I know she will cus she adores J.

Will let you all know what happens.

Thanks for your support. Your all stars.

Sounds like your LEA and LHA don't know the law. It is NOT legal to disregard a report because it has not been done locally. If they want local ones that's for them to organise as part of the process. I would go after them big time, I know its easy to say, but they are not behaving as they should and ultimately that will come out, no matter how much they resist. I strongly recommend you speak to IPSEA and the NAS Advocacy Helpline.

Had a meeting today with the Social Worker who was involved with out adoption of J.
Poor chap must have felt like he had walked into the lions den - I was not the usual pussy cat and spent ages really ranting and raving about all that has been going on withregards to J's lack of Dx!!!
To cut a very long story short - I spent so long raving about the fact that the clinical psycologist we have been referred to, through the NHS, is only travelling to our area 1 day a month to assess ASD kids.
SW agreed that this just is not acceptable ...blah blah blah. Then he said that he is paid by the NHS to work for 1 day a week with a group of professional who work with adopted children and who deal with probs like this.
He then said that a collegue of his is a Clinical Psycologist and he would ask her if she would assess J and possibly give us a Dx.
He phoneed her from our house and my jaw nearly hit the floor when he said her name!!!
She is only the same CP that we are waiting to see!!!

Certainly a case of not what you know - but who.
This CP owes our SW a favour and she is now looking at assessing J through the adoption group instead of through the normal NHS route.
She'll phone us on Monday to let us know if she will be able to offer us an appointment before christmas! If thats not possible then she will definately be able o see him in January.

So glad we waited a few days and didn't rush to see anyone privately - now I can get thoose boots I have had my eye on for the past three weeks!!!!