This post is now available in the ‘Life with an Autistic Son’ ebook available to download from Amazon.
Reality bites us ,really hard sometimes . Its something i try not to think about too much but i know i will have to address soon , just not right now . I see a bright future for Small Boy at the minute but when it next clouds over maybe then i will do something about it.
Again – this resonates. We put off writing wills in the past, mainly, i’m sure because we couldn’t decided on who would be the guardians. In our family there is a sibling on both sides, each married with one child. On one side is a teacher who showed precious little interest in autism and offered no support at all as we went through the whole diagnosis process. On the other side is my incredibly busy brother and wife. They are lovely but in London. Neither sibling sees our children much. Neither know much about autism. They each have their own child. I can’t bear the thought of anyone who researches less than me being in a position of having to love and be an ambassador for my L. It is so difficult to predict anything about our children isn’t it but whilst the decision on guardianship is no easier, I feel better informed as ever from reading your post. A trip to the solicitor on the cards methinks …
We have been dilly-dallying over this process for the last three years and are still no nearer to reaching a conclusion. As far as H’s future is concerned, I’m like an ostrich – he will certainly need long term care, probably 24 hour, and the possibilities range from terrifying and Winterbourne View-like to merely depressing. We don’t want to place undue responsibility on his older brother (who a year ago was insisting, independently of any prompting from us, that H would live with him, but a year further into the march of puberty has just told us that he probably wouldn’t see H much when they were grown up ” because I’ll have my own wife and family ” ). There was a good article in yesterday’s Guardian where the writer talked about about setting up a committee of people who would decide what happened to the children in the event of both parents dying – his reason for this is that you can’t predict a child’s future needs. – and I think it’s probably the best solution for us. Other than living to 150, which is what I firmly intend to do.
My wife is very conscious of the burden of care that could fall on B’s older brother. It’s the only thing that has ever made us consider having another child.
Gave me the giggles as usual, thanks 🙂 but you’re right, it is a serious matter. It’s funny how you definitely can imagine an ‘NT’ child growing up to live capably on their own, but you can never be quite so sure with an ASD child. We’ve also gone round the roundabouts about doing a will and never got off anywhere….. too expensive, you’re right. And to be honest, if I’m gone, I won’t relaly be able to care anyway, will I??!! 😉
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