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

Oh shit. Off to see the Doc and feeling v. nervous.....

35 replies

elephantpoo · 23/01/2012 09:27

Finally (after about 2.5 years of it being at the back of my mind) off to see the doc today to request a referral for DS re. poss. ASD. AND I'M REALLY SCARED. I know I'm going to blub / forget some main "symptoms" and generally come accross as neurotic. Mainly though, I want to get things right by DS. Well, off I go...........

OP posts:
creatovator · 25/01/2012 10:10

Here's a link irlen.com/

moosemama · 25/01/2012 10:39

Has he always done it Elephant, or is it relatively recent? Is it worse when he's tired or stressed at all?

My ds has a facial tic where he scrunches his eyes closed repeatedly. It only tends to appear when he's tired, stressed or anxious. He has a couple of other tics and tells me it starts to hurt if he tries not to do it. I think this is a build up of the sensory overload that the tic relieves, the action of the tic relieves the stress for while, then it builds up again.

He also developed a problem where he was unable to read for a while because he was seeing hundreds of spots in front of his eyes and it made it a huge effort and painful to see clearly. We ended up at the Eye A&E department with him, where his eyes were checked and passed as normal. Fortunately, we saw a doctor who had seen it before in another child with AS. It turned out he was actually so visually sensitive that he was seeing the blood cells pumping through the vein/artery in front of his lens. It took a few months, but eventually he learned to compensate for it and it only happens when he's overtired these days.

If you are anywhere near Birmingham you could get him checked at Aston University Vision Sciences Department, which is much cheaper than going to a private behavioural optometrist, but obviously takes a bit longer because its students working with qualified optometrists so everything has to be done then checked. Its on my list to get ds1 to them. [http://www1.aston.ac.uk/lhs/health-clinics/optometry/ Aston University Vision Sciences]] You contact them, they send you a questionnaire to return which helps them work out whether or not they are likely to be able to help and then they contact you to book an appointment, I think.

Alternatively this website explains a bit more about how behavioural optometry might help and you can search for a private Behavioural Optometrist in your area.

chocjunkie · 25/01/2012 13:13

sorry elephant, no advice on the eyes. just wanted to say - when you go back to GP, could you take your DH/DP with you? I noticed we got taken much more seriously when both, DH and myself went to GP/paed/whatever to voice our concerns about DD and things were not put simply attributet to paranoid mum syndrome. In fact, we only got referred when I dragged DH along!

elephantpoo · 27/01/2012 16:51

creatovator - I feel that it may well be sensory. Thanks for the link :)
IsabelOSullivan - I'm trying to record lots to go back to GP in 3 weeks (as he said), but DS is onto me and playing to the camera Grin
moosemama - in comparison to his other behaviour this is fairly "new". I thought it was only happening at home, when he's tired, but school had an open afternoon yesterday and I saw he was doing it then. I asked his techer to be on the look out and she's seen it today. Don't know how much he's doing it though........think they'd have noticed themselves without me pointing it out if he was as bad as he is at home Confused
Asked him yesterday why he does it - "because my eyes ache", does doing it make it better? - "yes, but then it gets worse".
That must've been very disturbing for your DS seeing the blood in the vessels in his eyes Sad
chocjunkie - I hope DH can make it next time.......it's a shame we can't be taken seriously on our own though!

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brandy77 · 27/01/2012 18:09

He said that Aspergers / ADHD (what is ADHD?) wouldn't be able to hold it together all day at school and only present traits at home

rubbish!! my son has aspergers and holds it together totally at school! if something goes wrong at school he totally covers it up and when asked by a teacher he smiles and says hes fine, then explodes at me as soon as he sees me. This is very common with lots of ASD children. My sons problems he "shows" at school are very low confidence/self esteem, very poor writing skills, needing to stick to a routine and not liking any changes to his day and as the teacher stated "he appears lost when told he has choosing time", i presume this is to do with lack of imagination. Hes 7 now and im still learning so much, i think ASD is a learning curve daily actually as the behaviour changes so dramatically. Dont be fobbed off, I was fobbed off till my son was 6 and wouldnt attend school at school and the EP got involved and she said she thought he had Aspergers or PDA from her first meeting with him. Its a long hard depressing, demoralising road to fight for your child but its so worth it in the end. xxx

Justabouthadenough · 28/01/2012 09:19

Hi elephantpoo,I agree with brandy, they can he it together at school. There is a child at DCs school who does exactly this, moment this child is out of the school gates it's meltdown time.
Just keep pushing, you will get there in the end, :)

mumslife · 28/01/2012 22:15

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moosemama · 28/01/2012 22:31

My ds holds it together at school these days, although he couldn't when his anxiety was at its absolute worst in years 3 and 4, but even then he withdrew rather than causing a scene at school.

At home its a different matter - he crosses the threshold (we live across the road from the school) and you can almost see him relax and start to let it all out - and not in a good way, generally speaking. Hmm

I think, Tony Attwood talks about it in his book if you need something/someone to quote.

elephantpoo · 29/01/2012 20:22

Thanks guys Smile
Will look up Tony Atwood moosemama. Always handy to be able to quote somebody.
Have tried to think along the lines of the GP the last couple of days (that maybe DS is ok and it's all age related), but after numerous meltdowns this weekend and a quick haircut that took nearly an hour and 2 of us to complete...........that GP doesn't know what he's talking about!! Feel all fired up now - bet it disappears by our next appointment Grin

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mumslife · 30/01/2012 21:32

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