My son Max is a bright, exuberant 23-year-old. He's a bit of a diva, loves a musical and, if I'm completely honest, he's a tad bossy - and he also has Down’s Syndrome. He's the sunshine in our family, and he's given my husband and I (and his younger brother) a different way of looking at the world.
Recently I asked him: "If there was a button you could press that would remove your Down's Syndrome, would you press it?" He was baffled, and quite dismissive. "Er, no, I would not. Look mum, I know some people are angry that they don't have Down's Syndrome, but what can I do? They just need to accept it and move on."
This is Max's take on life. He's certainly taught me a thing or two about perspective. He's introduced us to the wisdom of living in the moment, the importance of never underestimating yourself, the power of charm and the benefit of a pre-breakfast disco. But he wakes every morning to face huge challenges. On top of the Down's Syndrome he has a hole in his heart, low muscle tone, and a host of chronic ailments that will get worse with age.
Caring for a baby and young child with Down's Syndrome was challenging at times (this may be an understatement), but as a rule our family felt that there was a defined course for us: provision wasn't always brilliant or easy to come by, but we knew what was out there and what we were entitled to, and it felt as though there was a fair amount of support from both official bodies and third sector organisations (charities and the like). Education up to 19 was sorted (with a few heartaches along the way) and he lived at home with us just like any young child. And then, suddenly, readily available advice and support seemed to drop off a cliff.
It's become very apparent to our family that the transition from child to adult can be daunting. (I know many posters on the Special Needs board have been saying as much for a long time.) We know we aren't the only family struggling to cope. There is an army of carers who are in exactly the same position, or who have been wrestling with these dilemmas for longer than we have.
One thing that absolutely floored me a few years ago was finding out that when Max reached the age of eighteen, all rights over decisions regarding his welfare and finances passed to our local authority. They suddenly acquired the right to specifically overrule our wishes and make decisions on his behalf. This has far-reaching consequences, from the big stuff like living arrangements to the little stuff like obtaining a blood test result over the phone.
The only way for parents to stop this is to obtain Deputyship from the Court of Protection (COP). For us it was a two-second decision (although it's not a road everyone may choose to take). It can cost a fair bit of money in solicitor's fees, but you can do it yourself - which is what I did. (The COP has a very supportive helpline; you can find out more about the process here and here.)
We stumbled over this incredibly important piece of information; nobody went out of their way to tell us about it. It felt as though the assumption in the 'system' was that when Max reached 18, we'd wash our hands of him and be happy to hand over our son lock, stock and barrel. Of course, it's crucial that there are safeguards in place for those vulnerable adults who need state care, and I'm glad those safeguards are there. But there was something impersonal and almost cruel in the fact that this would have happened almost without us being aware of it, if we hadn't been the kind of parents who beavered away frantically gathering information - which takes time, energy and spare resources that not all families have.
And it's not just the practical things you need support for; there's no getting away from the fact that some of the things our family has to face up to are just extremely sad, and we could do with support and practical suggestions for handling those aspects too. Max wants what we all want: a job, friends, a partner, his own home, children, a driving license. And the truth is that he will never be able to have some of those things. Trying to find the right words to gently negotiate around his goals and discuss how realistic they are for him is one of the saddest things I've ever had to do, and it's something I'll have to do for the rest of my life.
We're trying to jigsaw together a life for our son, but I fear we're going to fall well short on delivering any of his dreams. He has done so well and I'm incredibly proud of him. He completed a three-year residential course at Derwen College in Shropshire, a fantastic campus environment where students can safely live, work and socialise while being encouraged to take full ownership of their lives. He's currently studying for a BTEC in Performing Arts at Chickenshed Theatre but he is struggling to create a social life.
He'd dearly love to return to a safe, supported campus environment where he can tackle his extra challenges effectively. There are some good independent living places out there - we've got our eye on one - but they are very limited in number and ridiculously hard to find. This particular decision is probably the hardest one I've ever faced and it feels as though my chances of getting it right are extremely low.
It seems to me that one thing that's missing is a truly comprehensive information hub for parents and carers of children with SN who are transitioning to adulthood. It could include a database of every special needs organisation in the country; reviews of services and facilities to help others make the choices that are best for them; and crucial pieces of information (like the Court of Protection Deputyship process).
Max has always driven the bus, right from day one. I'm just doing my very best to get it right for him. I fear I'm not doing that right now. The last year has confirmed to me something MNHQ has thought for a while thanks to the input of MNers, which is that we need to host more content on transition and adult children with SN. So do please add ideas/links to useful organisations and resources and tell us what has worked for you, or what sort of thing would be useful to you if you're in the same position as us.
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Guest post: "Our son has Down's Syndrome - as he transitioned to adulthood, support disappeared"
MumsnetGuestPosts · 13/06/2016 15:25
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