Back ground: DS2 (4 next month), we were told just over a month a go he has ASD and (what I thought was) Hyper Mobility Joints.
I misunderstood the HV and thought DS2 had Hyper Mobility, but it turns out he has Hypo Tonic limbs instead (big whoopsie on the DLA form ). Reading about the two conditions, they both seem to amount to the same thing, too much movement is allowed, though it seems Hypo Tonic Limbs can create many more problems, have read about eventual blindness and the need to use a wheelchair.
So why hasn't he been referred to a Physio or whatever else about this? Should I ask the HV (His key worker)?
Am seriously starting to feel the pressure of the drip feed situation we're in. HV comes in and says he does X, Y, and Z, he has Autism and this Hypo Tonic thing, and as good as she has been, pretty much leaves us to it. I have been reading till I can't focus anymore about Autism, reading things that I'm sure a lot of you already know, that are bloody scary enough on their own, and now this comes up with the Hypo Tonic isssues, and I am just bewildered, we're at the point where I don't think we can take anymore, and then there is yet another cold dish of shock, anger, and hurt served up, salt to rub in the wound.
Every day there is something else that he does, that he's always done, that we've never questioned, and it is another smack in the face because we didn't see it before.
He is such a gorgeous little boy, but he is 90% of the time so unhappy, uninterested and unable to understand so much. I am absolutely heart broken for him, he is never going to 'get' life is he?
Not helped by the fact that DS3 (2 next month) is showing many of the same signs to a larger degree, so looks like we'll be going through all of this again.
I am not cut out for this, feel like I am sinking into a hole little bit by little bit every day. And then feel even worse because I should be 'cut out for this', I am their mum, I have to be strong enough to get them through it don't I. I'm just not sure that I am, and if I can't do it, no other bugger will.
Sorry, I have to get this out here because DH is dealing with it all as well, and I don't feel able to add more pressure to him, and I need something to stop it all whirling around my head. Please feel very free to ignore my rants, I'm sure you are all dealing with worse than this
Here are some suggested organisations that offer expert advice on special needs.
SN children
I don't know how you all do it, I feel like I am falling apart.
NatalieJane · 24/11/2010 09:10
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