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

(56 Posts)
JaysMum Tue 09-Nov-04 21:47:26

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

mrsforgetful Tue 09-Nov-04 21:55:00

This is so awful.

you wrote....
"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."

In a mike stanton booke (i keep on about him) he mentions exactly THAT problem....when a doctor says that they won't diagnose cos nothing will be gained...

GOD!!! they really have not got a clue.

I really want to post a constructive reply....but had to at least let you know that i am here thinking of you.

Can i print this off and show it to a friend tommorropw....she has 3 definite autistic kids and is Aspie herself...she has been to local M.P's round here about things....and I have no experience yet of 'all out battle'......she may have some good ideas.

KristinaM Tue 09-Nov-04 21:58:53

bumping you

JaysMum Tue 09-Nov-04 22:38:31

Might be a real thicko but what is bumping???

Tickle Tue 09-Nov-04 22:50:52

Bumping is when someone just adds a reply to keep your message at the top of the Active Coversations list, so MNers are more likely to find it.
Can't offer anything but a {{{hug}}} to tired you and lovely J.
x

Tickle Tue 09-Nov-04 22:57:36

Might be an idea to bump it yourself in the morning Jaysmum, for the workers.

Davros Tue 09-Nov-04 23:35:27

I think I would try to see a Dev Paed privately but I'm not sure who..... have you tried contacting the NAS? Not sure Gillian Baird is taking any referrals now but she'd be good, then tehre's that one someone else mentioned recently, woman with Asian sounding name and I can't remember it! I've also heard good things about Paul Gringras. Why did the Paed ask you to see him TODAY with no notice just to tell you to carry on? Sounds like s/he feels threatened, what a waste of everyone's time it sounds. Interested to see what MrsF can come up with...

Socci Tue 09-Nov-04 23:59:31

Message withdrawn

beccaboo Wed 10-Nov-04 00:40:50

Jaysmum, this sounds awful. I think Davros is right, this doc sounds very defensive. As for the comment about 'old and grey'... it made me laugh out loud, it's just so unbelievable.

We saw a private paediatrician called Diane Smyth in London. She works for NHS at St Mary's, but also does private work. It costs about £250 for an initial one hour consultation. She asked us to write a detailed description of why we wanted to see her first. This meant we got a lot more done in the hour, because she had our whole case history and concerns in advance. I'd be glad to give you her number if you want it.

Gillian Baird's waiting list is about 6-8 months at the moment for NHS. She doesn't do private work any more. BUT - and sounds like this could be a problem for you - she no longer takes referrals from GPs, you have to be referred by a paed. Catch 22 eh?

But as far as I know, you are completely entitled to ask for a second opinion, and I don't know if they can stand in your way. I don't know what the rules are about specifying a doc for the second opinion, maybe someone else knows?

JaysMum Wed 10-Nov-04 00:54:09

Beccaboo

I have cat you for number - just hope it worked - crud on comp!!!

How many times did you see the doc before you got Dx?

fio2 Wed 10-Nov-04 06:43:36

gawd how hard for you and bloody confusing too. I might be way off here, but you mentioned he had many different complex traits and also his growth was lagging etc. and I just wondered if you have had any tests at all? I know when our dd started having 'developmental' problems we were sent for various test, ct scan, eeg, chromosome testing, amino pepids tests etc. to rule anything else out. I think this is quite 'normal', where you ever offered this?

It must be incredibly frustrating for you, and having to Home Ed too as they cant sort the school until 2005 must be hard really feel for you jaysmum

blossomhill Wed 10-Nov-04 07:17:52

Hiya Jaysmum. I have nothing to add to the e-mail I sent earlier but you know where I am!!!!
Just bumping this up for you xxx
Hope you managed to get a least a little bit of sleep. I went at 10 as I was so shattered!

JaysMum Wed 10-Nov-04 11:17:04

bumping this

Thomcat Wed 10-Nov-04 12:24:07

wish I could add some great advice but sadly can only offer you my sympathy. Getting anything can be so hard and so tiring, sorry you're having such a hard time getting him the help he deserves.

jellyhead Wed 10-Nov-04 12:29:02

I don't know if this is a stupid suggestion but as J ay was adopted do you think knowing any of his family's medical history could help or is that impossible to get details of?

JaysMum Wed 10-Nov-04 12:46:00

Where do I start?

J's birth mom attended a residential special school because of behavioural and educational problems. The social worker who was invoved with her reported that she had limited speech, low levels of understanding, poor social skills, poor co-ordination, aggressive manner, violent at times, alcohol deppendant.
Birth father was reported to be obsessive, poor social skills, learning difficulties, manic depressive, Diagnosed as being pscyopathic, alcohol dependant.
Oldest brother in a secure unit because he is an arsonist - other older brother has Dx of Aspergers, next oldest brother has learning difficulties and ADHD.
R, our oldest son and J's biological sibling, has no difficulties at all - he is the only boy who hasn't from the family. All the girls are fine and have no problems either.
Have given all this information to Doc - didn't discuss any of it because J was in the room with us - he knows he is adopted and we have been really positive with him about his birth family - don't want him to know all the nasty details.

Just find it hard that the Doc seems to think a DX is not important!!!

binkie Wed 10-Nov-04 13:22:33

agree with fio2's thought - with a family like J's it sounds so much as if there may be something genetic. Has Fragile X been considered?

jellyhead Wed 10-Nov-04 17:02:38

I think from what you have said about Jay and his family history the Doctor's so far just don't know hence the 'do you need a diagnosis' approach.
Sorry that is no help at all and hope someone can give you a bit more constructive advice.

Davros Wed 10-Nov-04 17:10:44

IMO, apart from anything else, the value of a dx is that, if someone does have a condition or syndrome etc that should at least be acknowledged and I can't see any downside unless they don't have said condition/syndrome, its not "labelling" its just the truth! If you can't get a clear dx such as ASD there is always the GDD or PDD type dx which will open doors and, if given by an experienced Paediatrician, is probably the correct dx for that particular child. A dx that is correct and genuine can only be beneficial, not just in getting services but in helping the person understand themselves and relate to others and/or helping those nearest and dearest (and those less so) to understand and relate to them. As for getting services, school and education do not last forever and is actually only for a small proportion of a person's whole life and other services WILL be needed and probably before the education finishes. You may find it difficult to access services from charities too without a dx and therefore miss out on lots of actvities, e.g. we have accessed horse riding, Saturday club, cranial osteopathy, aromatherapy, play centres, trampolining, music therapy, holiday club and more I can't remember all through charities and soc svs which require a dx (although they don't usually ask for actual proof they will ask date of dx, Dr's name etc). Then there's the welfare benefits and associated things like DLA, Carer's Allowance, Freedom pass, Taxicard, Family Fund etc etc and, of course, being able to join support groups, get reduced rates at public places blah blah blah, I could (and have) go on and on!!! What is this Dr's problem?????

Socci Wed 10-Nov-04 17:17:28

Message withdrawn

fio2 Wed 10-Nov-04 17:29:43

me neither!!! I would LOVE a diagnosis!

I sometimes think the 'it will sort itself out' approach is denail tbh. i was like that once

JaysMum Wed 10-Nov-04 18:25:56

Binki - I had not heard of Fragile X before so I checked out a few sites - J matches quite a few of the characteristics - although he does not have the facial characteristics. He has very small button nose and a smiley round face.

Why is it that so many of these coditions mirror each other - no wonder the Doc has said he does not want to DX J - he probably doesn't know where to start!!!

Have asked a local independant EP if he would perform the DISCO assessment for us - just waiting for his reply!!

We both really feel that we must get a DX of J's conition - not for now but in the future - Fragile X is hereditary - what if J has this and then wants kids when he's older - we would need to be able to inform him.

Just don't know what to do - almost feel like writing to the Paed, as I don't think we were able to express our concerns that well on Tuesday. I'm not very good at talking to Docs etc - get to emotional and just sit there a gibbering wreck!!!!

fio2 Wed 10-Nov-04 18:37:53

if they think it is some sort of genetic syndrome they would refer you to a genetic counsellor, or should.

i think first things is that he should have a multi-disciplinary assessment and then go from there. It must be awful to have been 'left' so long. i know how you feel because my daughter is 5 and we still dont have a formal diagnosis

JaysMum Wed 10-Nov-04 19:17:40

The Independent EP has stated that J should be assessed by a multi-agency team asap - only prob is we havent had a SALT in our area for over 18 months - now one has been appointed she is having to catch up on seeing everyone.

We saw her last month and she said in her report that J has expressive language delay and problems with his Semantic and Pragmatic speech - although she was unable to diagnose this because she felt it should be done by a Pead.

Really am getting so confused with all this - brain is buzzing!!!

We have asked when J will be seen by the multi-agency team - reply - in three years time!!!!

Have been told that the LHA are concentrating on the Early Bird programme at the moment - early DX in children before the age of 5.

When we first expressed our concerns when J was 3-4 we were told that the muti-agency team were concentrating on DX for the over 7's.

Poor little man is just stuck in the middle and no one is prepared to DX.

Makes me so angry I could scream!!!

mrsforgetful Wed 10-Nov-04 21:02:53

This friend i mentioned has said she will give you her phone number if you want.....she has been featured in local newspaers here due to her 'very disabled family'
3 sons....1 Aspergers, 1 Autistic and 1 autistic + 'unheard of heart defect' etc....and even doctors keep reminding her that he has a short life expectancy....he also is due to have an operation to straighten his legs from the hip as he is almost in a permanent sitting position....but the surgeon will not confirm this till a month before the op -as he bluntley imformed her that her son "may not still be around". She says that at 12 years old to still be hearing that hurts - as at birth he was given 4 weeks life expectancy.
She also has a 18mth old daughter whom she prays is well.

basically.....she copes with her difficulties by throwing herself to help others further 'back in the line'....she is training to be a facilitator at the support group i go to.

she also said that if you don't feel comfy phoning her directly- she would love to help by writing - has letters to M.P's etc she can copy....press cuttings...

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