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Here are some suggested organisations that offer expert advice on special needs.

Original poster

is this good?

11 replies

angelPeacock · 10/03/2011 16:43

WE had Ds peads app this morning. I have been trying to get someone to listen to me for the past 12 months ish now, it would have been longer, but he has nystagmus and had 3 sets of grommets, so i have always had my concerns beaten down to "its probably just to do with his eyes/hearing".
I believe he has aspergers and/or possibly dyspraxia.
anyway, the pead listened a bit this morning, and explained as he had on the phone previously that his genetic and general blood tests have all come back fine. He eventually said that he would visit Ds in school, and talk to his teacher (i said i dont particularly like the SENCO, she seems to dismiss us or at least thats what it feels like). He did say there may be forms/questionaires for the teacher and maybee us.
Ds isnt under any other department (other than ENT and opthamology), and hasnt been refered by the pead to anyone.

is this a "win"? it half feels like the ball is starting to roll towards a formal diagnosis, but it also feels like he is just humering me, as he did with the genetic tests, but on the other hand, it feels like he may have just realised that i wont give up and will shout as loud as i need to.

what do you think? Hmm

thanks xxx

OP posts:
IndigoBell · 10/03/2011 16:48

The paed visiting in school! A big win.

If he has Apsergers or dyspraxia, then the genetic tests won't show anything....

EllenJane1 · 10/03/2011 17:20

Sounds like the start of being taken seriously. Smile

Is your paed a developmental expert.

brandy77 · 10/03/2011 17:57

My son has medical problems and his behaviour has always been blamed on them. His paed wrote a letter stating that my sons medical and behavioural problems have to be seperated, that letter held a lot of clout as now he is being assessed for Aspergers. Id say its very good the paed going in, good luck Smile

Original poster
angelPeacock · 11/03/2011 08:34

thanks everyone.

indigobell, i requested the genetics tests as i came across XXY when i was searching for info online, and it described DS. but life is never that simple is it hahahaSmile

ellenjane1, i have no idea if his pead is a specialist, i was just refered to the peads by the school nurses after me talking to them about my concerns.

brandy, i hope that we too get some regognition like that, even if its not in writing, to just be told im right that its not the medical problems that cause the behaviour would be brill.

thanks again everyone, i feel better knowing you think its at least a start!! Grin xxxx

OP posts:
MADABOUTTHEBOY2000 · 11/03/2011 10:59

hi a lot of the traits of as /asd are simular to fragile x so i think (as mine was) its fairly common procedure to check for that to basicaly rule it out before getting a final dx so if they are doing that thats got to be promising hasnt it? i may be wrog but my DS had this testing done teh child developmental paed advised it , good luck

lolaismyfavouriteandmybest · 11/03/2011 12:33

my 4 yr old dd has nystagmus and a diagnosis of ASD for social and communication issues that I feel can also be explained by her visual difficulties, I also have the condition (with worse vision) so can relate to her problems and I'm convinced that whilst she has imparements in all three triads in the lorna wing ASD diagnoisis thingy that the route cause is visual not ASD.

For example I was at an ASD training course on social communication last week where the speaker told us that having ASD was like looking at a blank face with the subties of expression missing, and that ASD children did not pick up the cues other children would. So just ike having a visual imparement! Don't dismiss the affect nystagmus can have. Just because your child may be able to see something that he is specifically looking at very well doesn't mean he is collecting the visual information about that object and everything else around it that people without the condition do. It's one of the problems that visual accuity scores are much higher than other imparements whilst the sufferer still has a very limited amount of visual information.

The nystagmus network is a great source of information. I also have some info about social and communication problems as a result of nystagmus that I could pass on to you if you were interested

Original poster
angelPeacock · 12/03/2011 00:02

lola...
thankyou so much for your reply.
i have been on nystagmus network, but find it quite hard to find relevant information since my son has no visual imparement other than the "wobble" his acuity is 20/20 at his worst (not allowed to use null point) (well i cant say 20/20 but i meen expected for his age, whatever that is).

the information you have would be wonderful thankyou.

xxx

OP posts:
Rocket1 · 13/03/2011 19:39

Hi Lola

My 10 year old daughter also has nystagmus - sorry to be a pin but would you also forward me the information you have on social and communication issues?

Many thanks
Frances

lolaismyfavouriteandmybest · 17/03/2011 08:12

Hi guys

I haven't forgotten you, first I had a bug now dd has it.

I'll be back......

Original poster
angelPeacock · 17/03/2011 09:01

lolaismyfav.....
huggles huni, hope your feeling better, and that DD gets over it soon. xxxxxx

OP posts:
lolaismyfavouriteandmybest · 17/03/2011 09:23

thanks

Have pm'd you some info (and also to you Rocket1) but it's not as helpful as I remembered it being. I think most of what I remember was from a talk I went to not the fact sheets.

if you can describe any problems/behaviours that you are worried about I can try to see if I can provide a VI or ASD explaination. (I'm no expert but I have a VI myself, (used to have nystagmus before a very ill advised operation) and I've been taking classes on ASD)

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