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Who should I contact about this?

(6 Posts)
youarenotkiddingme Sun 23-Apr-17 13:22:39

Many on these boards know me! My ds has a dx of ASC and sensory motor difficulties. He also has a typical spoken profile with some specific learning difficulties of which the specific areas come in the 'severe range' he also has some below average abilities in motor planning and processing.

From a young age ds had a hand preference. He met all his physical milestones fairly early in the average range.
He didn't crawl until about 6 weeks after he walked.

He always carried objects in his L hand against his body but could use both hands iyswim? He doesn't though have coordination with both and still struggles with simple tasks like using a knife and fork.

As a young child ds was very uncoordinated and clumsy. He frequently tripped up pavements and didn't instinctively put his hands out when he fell.

I asked his pead about dyspraxia but this wasn't actually followed up.

Ds was dx with autism at 10. He then saw the OT who said about motor planning and fine motor skills and also sensory stuff.

They picked up on how ds struggles with oral motor skills (he struggles to read aloud and you can see him struggling with reading, speaking and breathing formation of the task)

Ds has also seen a neurologist as he has muscle spasms just after falling asleep at night and they thought it might be seizures. EEG and MRI were clear - this still happens.

Ds has also been under the podiatrist for flat feet and Achilles' tendon issues/tight calves. Despite stretches this has remained unsolved. He was referred to a physio who agreed with me that ds has a marked difference in his muscle tone between L and R side. He did some reflex tests and asked about MRI. Then seemed to leave it saying usually ds presentation is common in children with hemipegic CP but a clear MRI would indicate otherwise.

I've also noted ds has retained a lot of primitive reflexes.

Ds swims for a club. I chose them because the are one of the disability clubs in my county and are known for their inclusive attitude. Although ASC doesn't come under disability swimming unless IQ is below 70 (which ds isn't)

They however are extremely concerned about the movements my ds has, his physical presentation and the range or way his movements present. Also that his left side tires so much more quickly and now he's getting stronger (he trains 4 hours a week!) that the difference is increasing.

They think he has something more than a sensory physical difference and think he'd be able to be classified under disability swimming and therefore attain a handicap - but he needs a diagnosis of a physical disability.
I'm quite a laid back person and so they've did they feel they can be open with me - but have simply said they have physically disabled classified swimmers with less pronounced physical difficulties than ds.

I'm not sure where to go from here. I'd obviously like ds to be given the opportunity to swim and achieve at swimming (which he is) but at the right level for him.
But it feels strange to question the professionals iyswim?

So should I maybe write to GP explaining I'd like a second look and could/should I get swimming club to be specific in their concerns?

zzzzz Sun 23-Apr-17 16:59:09

Really interesting post for me. Dd has a weaker side after seizures as a young child. It was very marked, but years on it is really only me that sees it. She always falls to that side and lists slightly when tired and is rather too right handed.

I think I'd morph it slightly for the GP and say coaches have noticed XXXX and have more able swimmers in class YYY and while you can see ds easily fits that group to be included it will need to be formally assessed. Then ask them if they can write you a letter grin. Be bold!

youarenotkiddingme Sun 23-Apr-17 17:38:57

Yes bold is exactly what I need to be!

I need to simply tell them that attributing everything to autism is not the solution!

They've picked up and muted stuff with ds over the years (including the cafe au lair spots) and just kinda go "oh , wel he's autistic" as if that's the explanation for all wink

tartanterror Sun 23-Apr-17 20:25:43

I agree with zzzzz - a letter from the swimming club outlining their observations and experience with other kids. Then take that to the Paed (if you still have an open referral) or the GP.

Yes lots of the things that you mention are relevant in ASD but only up to a point. Beyond that if it is causing more problems than would be expected it should be investigated. Good luck

JustAnotherSilentOldNumber Mon 24-Apr-17 08:47:46

Does he have physiotherapy?
Or occupational therapy?
Because those might be a better starting point for a 'weak side' than the GP.

youarenotkiddingme Mon 24-Apr-17 18:14:28

Yeah OT said he has sensory motor difficulties and physio said he has distinct difference in each side but said it's sensory because of what OT said!

I think he needs an x ray of his hip so I'm going to see if I can self re refer and ask his club to put in writing their concerns.

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