Physio- what to ask?

[123abby]

Hi,

My son is 3.5 and has special needs. He has severe learning difficulties, severe autism, sensory processing disorder and a rare chromosome disorder.
My son was delayed at all of his milestones although we were told there is nothing physically wrong with him, this was down to his learning disability. Since moving to our new area, our ot has said he feels a bit hypermobile but it's not bad because he's not in pain. One of my problems is that part of my sons autism and sensory processing disorder is that he doesn't respond to pain, he has difficulty responding to hot and cold and as he is non verbal, he can't vocalise or point to if he is hurt.
I've noticed my sons feet are very tight, he does tip toe walking but only at school and he refuses to walk outside so he uses a wheelchair. He sacrel sits and w sits, the ot said this is for maximum sensory input, and that's why he has a wheelchair not a pushchair to help correct this posture. He also positions his legs weird when in a chair or car seat, they aren't together but usually one is far away positioned or both. His upper body, the ot said is lax, that he's very flexible. I notice he doesn't have the strength like other children his age to climb things or he might struggle to pull something or open a door etc. he has recently started to climb stairs with help but doesn't go downstairs. When we saw the physio 6 months ago, she said his difficulties were down to a lack of understanding but I can't help feel their might be something more to it.
We're having a review with the physio next week and I wanted some advice really on what I should ask for her help in? Is this all because of his learning difficulties? Or is it something more? What should I ask her to do? Or recommend?
Any advice appreciated :) Abby x

I have no special physio knowledge but it doesn't sounds right. Not seeing the physio for 6 months doesn't sound right either - can you request more frequent appointments?

I would keep a daily diary recording everything you're told us here and don't allow her to fob you off. If you're unhappy then request a second opinion.

Also can you take along some information about his chromosome disorder so that the physio maybe knows what problems he might be facing? Sounds like she needs a firm nudge in the right direction.

I forgot to mention that he has flat feet and they seem position inwards slightly but at the same time they seem a little arched like rounded at the top of the foot than mine look for example. We don't have a physio normally because he's not down as having any physical problems but I requested a review because he is still behind in his motor skills and I want someone to help him with that. His chromosome disorder is very rare. There is no information on it, how it affects him, if it does, I just know that he has one x

Have you heard of Unique, the rare chromosome disorder charity?

They have a database of pretty much everything!

Yes, I went on there and they don't have my sons disorder :( x

Oh bloody hell! Sorry you're in such a difficult position.

In that case be very firm with the physio that as no-one can tell you anything about your DS's disorder then they HAVE to assume that his physical problems are a part of it and must be treated.

How did the physio assess him? Did she do a proper hands on examination, identifying where are the muscles weak etc? Our Nhs physio did not ever touch our son :( and all we ever got told was 'you are doing everything you can' - bullshit. Went private and got a lot of exercises we could have been doing for much longer, if the Nhs physio wasn't so useless. She has also not picked ip ( after a year of assessing ds) his severe motor planning and coordination difficulties. So if you feel the examination and advice was not thorough, go private, it's really worth it.

My Dd3 has Asd and is hypermobile in all her joints, she sits in some very strange positions and wraps her legs around chair legs to help balance herself.

She tip toe walks and now has shortened achillies tendons. She had a block of physio over a 3 month period and has loads of exercises which we struggle to do.

I think you should go back to your Gp/paediatrician and ask for a proper physio assessment.

The ot saying that he is not in pain is bonkers, how did he/she know that? Children with autism often dont understand pain and certainly cant explain it. The OT has made an assumption that could be incorrect. I definitely think you need another opinion.

Good luck

Thank you for your replies. I do feel that I want something doing about it, I don't want to seem like these over sensitive parents however I do think something isn't right so I will be pushing for something from her instead of, it's just sensory, it's just the way he is x