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Isolation and self-belief - Carers UK Forum

Isolation and self-belief

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I am picking up on a previous post regarding the sense of isolation that can come with having someone disabled by autism; and the what sometimes seems a very lonely existence. All of which can make you feel quite down at times.

There is no fictitous answer, this is the reality. But it is an excrutiatingly hard cross to bear.

Our own son is 43 on Thursday. He not only has autism, he has cerebral palsy (he managess to walk to a degree); he has learning disabilities; but above all, he has very specific disorders in the way he uses language (Google 'Specific Language Disorders or, as it is now referred to - Pragmatic Language Impairments). Even Prof. Lorna Wing notes that this combination is a rare entity; and consequently needs get overlooked.

On top of all this, he then has mental health difficulties (namely OCD); which in its own right, goes unrecognised due to ignorance about the condition.

And yet he lives quite an independent lifestyle; he has his own bungalow, for which we take responsibility for the tenancy; that is only a couple of minutes round the corner from where we live, so that we can keep an eye on things; and support him as much as we can.

Although he does have a team of carers going in, it is not an appropriate provision simply because his autism and communication disorders have gone unrecognised, people having largely concentrated on his physical - i.e. that which can be seen - problems. This means that we have had to fight and fight (I know we are not alone in this!) but it is the constant fighting and battling, and not necessarily the disabilities themselves, that wear you out.

And so, after 43 years, we are bound to ask if we will ever get any peace, before our time is up? And so, yes, there is no wonder we get down, wondering what life is all abuot; but then we take joy in our son's achievements, however small; we take comfort from the times he manages to tell us 'we are the best parents he could have' (o.k. I know that's a cliche, but it is a meaningful one).

So I hope I can continue to join in these sharing sessions for a moan from time to time, without anyone judging me; knowing that others are in the same, if not similar, boat.

Now, I don't feel so bad!

(I am beginning to write my son's story, and trying to get it out on Facebook - if anyone is interested go to 'Justice for those with learning disabilities' and give us a 'tick'!)
Hello Hillside205 and welcome to the forum Image

As this is your first post I'm copying it over to the new members section where more people are likely to see it and respond Image
this is just what I needed to read today, thank you so much for sharing.

I will go and look you up on Facebook now!
Hello Hillside, welcome to the forum. I have a son with SLD and can identify with much that you have written - when my friend complains about her daughters little niggles in life (one is now an architect, another a health visitor) I just think to myself that I'd give anything for my son to just be able to write his own name and count his own money. He also lives in his own flat, but sometimes I think he's just a one man job creation scheme for me!
Welcome to the forum hillside.
Loneliness and isolation is something we understand on this site Image
ISo I hope I can continue to join in these sharing sessions for a moan from time to time, without anyone judging me; knowing that others are in the same, if not similar, boat.

Now, I don't feel so bad!
Join in and/or have a moan any time. We will listen and, as you have discovered, it really does help Image
Hi Hillside and welcome,

you are further down the road than me. S is 21 has autism and associated learning difficulties plus health issues. He still lives at home. The future scares me to death. Keep posting, we have a lot to learn from each other.

melly1