bendy?

[Corster7]

Hi there,

My son who is 5 has autism, hypotina and development coordenation problems.

We see a OT who is fab and helped a lot, the OT has asked a pysio to come and see my son as he has started to get pains in his legs and other joints.
He is as the OT puts it very bendy so finds it hard and tiring to do something's that most 5 year olds can do.

Today whille helping him with writing some letters down he started to look very uncomfortable holding the pen.
I asked him if anything was wrong.
He pointed to his fingers.
I had a look and give them a wiggle and you could see and feel them poping in and out.

The other hand was the same.
So is this apart of 'being bendy'? Is there a name for 'being bendy'? And what complications (I know he gets pain) are associated with this?

Hi there,

Yes, there is a name for being that sort of bendy, it's hypermobility. Check out the Hypermobility thread as there are lots of people on there who are far more knowledgeable than me on the subject.

My ds2 has hypermobile joints and suffers from daily pain and exhaustion as a result, but we are pretty new to all this ourselves really, so I probably can't be of much help.

I do know that there are different degrees of hypermobility and different classifications, you can just be hypermobile with no problems at all, in which case you would probably just be described as simply hypermobile, but as your ds is having pain and problems he would probably meet the criteria for a diagnosis of Benign Joint Hypermobility Syndrome (BHJS) or Ehlers Danlos Syndrome - Hypermobile Type (sometimes called HEDS).

You can read a bit more about it on the Hypermobility Syndrome Association's website but do post on the EDS thread as well, as they will be able to help and advise you.

I would recommend the "Stabilo" range of pens and pencils, they are great for hypermobile fingers as they are thicker and have a rubbery soft grip.

I have bought them from morrisons, sainsburys and online from Cult pens.

Dd3 had physio to strengthen her joints and she has exersises for at home.
She often has aches and pains and she used to trip and fall a lot. She has orthotics in her shoes now and the falling has almost stopped.

Good luck

DS1 is very hyper mobile and found writing really hard, we tried all the expensive pencil grippers on the market and settled for skinny elastic bands. They settle where his fingers need them and are easily replaced when they are (inevetably) lost. Lovely bendy boys! (sorry, my PFB is ASD and hypermobile so therefore I think that this type of child is infinitely superior! )