Do you ever think about the future and your SN child?

[litdog]

I recently came across a thread on a website called Gransnet (long story; I do not qualify for membership yet!) about adult children with learning difficulties. It was fascinating (til it veered rather off-topic) as I know nothing really about what the future holds for children like mine who are unlikely to be able to live independently.

My DD has severe LD due to chromosome probs and I worry about her future all the time. Will she stay at home? Would she be happier eg on a farm community (my MIL knows one near her and always says I should look into it), where she might help look after the animals etc (she loves having important jobs to do!) Or some sort of 'home' (ghastly word, but my adult cousin has Down's and is just so so happy in one in Scotland). If she does stay at home, what happens when I get too old?

I have lovely sons who are fine and can help look after her, but I wonder if I should try for a girl as they are 'more caring' (keep reading unsettling posts about this). D

My daughter is only very young still, but I still feel vaguely anxious about it all, wondering if I should be finding out about future options etc. Rationally I know it is a long way off, but I can't stop thinking about it.

This is rather a stream of consciousness but I just wondered if other people feel the same way?

Thanks

You are not alone. I have felt the same way for a long time.

I have two SN sons and a NT daughter.

Practical advice from me is to make a Will. See the MN Classified Ad section. There is a poster on there who specialises in Wills for parents of SN children. This will set out your wishes once you are gone. So, for example, I am soothed by the knowledge that if I go tomorrow and my daughter is too young to look after her brothers, I have set in place my wishes wrt money and guardians.

I personally wouldn't try for a girl. Sons are capable of caring as much as daughters and presumably, any further child could have the chromosone disorder? If I could have any further children, which I can't, they would have a 1 in 4 chance of having the condition that affects my sons. It would not be a risk I would be willing to take.

This is a bit rambly and incoherent. Sorry. I hope you find some advice in what I have typed.

Yes I worry a lot
Will he find a partner?
Will he be able to find a job?
How will he cope financially if anything happens to me and dh?
Will people be awful to him once he's a man and still behaving oddly ? People aren't very nice about him already.

Yes I have worried every day about where my ds will end up.

He is 13 and has asd. Our first hurdle will be when he leaves school in 6 years. We already know that he will need to stay at home on in a one-to-one environment. He has behavioural difficulties and no danger awareness so can never be left on his own. He is healthy and has no health issues, which is good for him.

Long term care is scary, he has an elder sister who might be there for him when we aren't and he has 2 young sisters who we are hoping can provide not care but familiar faces in case he ever has to go in a home.
He is very hard work for me and dp so we won't make the girls be his carers if we aren't there but I would like them to have lots of contact with him.

I also second getting a will, we have life insurance so that if we both die there is enough to get a house and give the whole family some security. Getting around to the will as well as dsis has offered to take all the kids on if we were to die in the next 20 years.

I try not to, to be honest. I worry that DD1 will fall in the gap of 'appears able' but is sooo vulnerable.

I banned myself from thinking about it..just cannot do it at the moment.

Thank you for all your answers - nice to know I'm not the only one. One thing that consoles me is that we have coped with everything thrown at us thus far. If someone had told me what we'd have had to cope with so early on in our marriage, I'd have died! But here we are, still, and having a (mostly) nice time in between the dramas.

Thank you for the practical advice - we already have wills sorted, but it is the issue of the extra child that I worry about, esp as I am heading for 40 fast! I can't really face another baby, but I just keep worrying if I will regret it if I don't. DD's chromosome thing is not hereditary, they don't think - they say it's just bad luck and random, blah blah. But who really know? They don't even have a name for it, it's so rare. So maybe if we had another girl it would have the same thing.

I think the answer is to get a puppy, keep pouring the wine, and hope that everything turns out ok...

I have a DS with ASD and I have spent years sorting out his statement and getting him into a specialist school. He's in a suitable placement now so I'm able to focus my energies into preparing for the next battle of transition into adulthood.

Adult care demands similar advocacy to statementing etc but probably harder to secure, especially for those who appear able like DS, so I'm trying to understand the law, research potential placements, learn about similar students who are leaving his school, and keep up with changes in the law (a lot coming up due to benefit changes and the new SEN system).

I've attended events like the Autism show and found out about a lot of providers - there are some adult placements like agricultural colleges, supported housing etc which look excellent, but getting the funding sounds tricky. It is well worth looking at all the options - look up groups like Ruskin Mill or organisations like Natspec.

Personally I will not consider having another child because the risk of another child with SN is too great. It means that DS won't have siblings to care for him, but I have a large extended family with aunts and cousins, plus I had him very young so will be around for him for years yet.

It is your decision to have another child but I wouldn't base it on the hope they will become dd's carer. They could resent you if they feel they are only there to shoulder the responsibility for dd when she is older.

I lnow how it feelzs to want another child and the feeling you get that you are running out of time. i felt like that just before i had dc3. I thought that would be it but when i found out i was having dc4 i realised i could probably go on forever. We have also found that ds does miss out because of the little ones, there is a large age gap, and they miss out on things because of him.

I know that may come across as quite negative and we do adore all our kids but we have found that it is harder for the baby 'to slot into family life' with ds's disability. Even though we wouldn't change anything

I dont think to far into the future tbh. I have targets for DS set and if he meets them great if he doesnt then I start again. One day at a time.

No one can predict what the future holds really. I think wills are important yes but everything else I deal with as it arises.

The future is a bitter mistress for us - dd's final plans are already made and we have a "home pronouncement plan" for when the time comes. For ds, however - we are doing our best now to teach (force) him to be independent. What I fear the most, to be honest, is that something "unexpected" could happen and leave the kids without us... if that were to happen, I am not certain that dd's medical needs wouldn't land her in the hospital for good

Thanks all - really interesting stuff in here. Crazybug thank you - I will look into all that you mention. You have obv done your homework and it is interesting. I hadn't even thought of funding - just assumed you either went private or state (and was horrified at the cost of private). That is cheering to hear that there is funding available, though I don't doubt it's hard to come by.

I don't think I have the energy for another child, really - I think it's just the time running out thing that makes me question it. Thanks for your insight Debs75.

And I generally agree re one day at a time - all I really have the energy for now it's the dreaded summer holidays!

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