Toby is my delightfully funny, mischievous, boisterous, best-hugger-in-the-world 19 year old son, who was born with disabilities so rare that he is a complete one-off, the only person in the world with his particular condition. In the early days, keeping him alive was a round-the-clock struggle, his prognosis was extremely poor and we spent most of his first 6 years in hospital with him seriously ill, and with me sleeping on a camp-bed next to his bed for weeks, and sometimes months on end. His medical care was full-on, he needed 24/7 treatment to keep him from dying, and in those early years we had 38 separate crisis close-calls when he wasn't expected to last more than a few hours. He certainly was never expected to make it all the way to adulthood, and I am so proud of him and so thrilled that he has survived against the odds, but in so doing, it does bring a different set of problems and heartbreaks too.
Toby has the intellectual equivalent capacity of a mainstream 2 year old, and we now know he is severely autistic too. He cannot swallow properly so until relatively recently he was entirely fed via a gastrostomy, and now that he can eat and drink, everything has to be pureed, there are more foods he has to avoid than he can eat, and we live with an extremely high risk of him choking or aspirating food-matter into his lungs. He is also doubly-incontinent, and he has challenging behaviour too, as well as still needing a lot of medical treatment and care. He can walk, which was a joy we never expected, but he is wobbly and unsteady so he also uses a wheelchair, and his speech is limited to one or two word sentences of a very limited vocabulary. None of this gives a real picture of the whirlwind of energy and tenacity and joyousness that is Toby, you really would have to meet him to understand just how very special he is.
So, he always has and always will need total 24-hour supervision, both from a medical and a behavioural point of view. He has absolutely no sense of danger, and this, coupled with a mischievous curiosity and an ability to wreck a room in 12 seconds, means that he can also be exhausting, and nothing else can get done if you're alone with him.
I've always known that, if Toby made it to adulthood, I would want him to be settled somewhere else by the time he was into his middle-twenties, simply because I've seen other adults with learning disabilities have to cope with losing their parents once they are well into their fifties, and then also cope with being springboarded into a completely alien environment with no one able to help them understand what's happening and to help them get used to their new home.
So Toby moving out when he's only a couple of months short of his 20th birthday isn't so far away from the plan I'd always had for him. It was always going to be difficult; Toby and I have been through so much together in his early life that we are closer than close, it's almost that we are a part of one another. What I think is really hard is that my cancer prognosis has taken away the choice of when we do this, and there is a real sense of urgency for a number of reasons.
Firstly, although I am doing really well on treatment and I may well live for several years, the fact is that my cancer is incurable, and I equally well may deteriorate and die relatively quickly. If that happened and Toby was living at home, it would be catastrophic for him, losing his mum, and having to get used to a new place to live in one fell swoop. Finding good places for people like Toby is like finding a needle in a haystack, and with the best will in the world from even the best social workers in the land, in an emergency situation like this, he could be catapulted into a really unsuitable environment without me around to jump up and down and insist on the best.
Secondly, cancer thrives on stress. Stress eats away at the capacity of your immune system to keep the cancer under control, and keeping cancer under control is vital if I am to live for as many years as I possibly can. I hate to say it, but Toby living at home is not good for my stress levels. We live on tenterhooks waiting for his next meltdown, or what havoc he will create. Then there is the constant stress of the next chest infection that may bring him down so low that we may lose him - always checking his breathing, always on edge listening for the tell-tale tone of a slight cough, always worried that he may fall or put something in his mouth that will choke him.... the list goes on and on. Then there is the stress that changing nappies and spoon-feeding a young man also brings, and ensuring he gets all his prescribed medicines on time and that they aren't causing him side-effects, it's all the stress of trying to second-guess how somebody else is feeling when they have no way of telling you themselves.
Thirdly, since I've had cancer, my energy levels and coping resources just aren't as great as they once were. The bottom line is that I'm just not strong enough to look after him anymore, and that really hurts. It feels like he is being jettisoned out of the hot-air balloon so that I can live a bit longer, as if I have had to make a choice between us, and that I've chosen me rather than him. That makes me feel very selfish and very guilty, and it hurts like hell.
The other thing that I'm acutely aware of is that, after all these years caring for Toby, my time will be significantly freed up, and I will be able to do things spontaneously with the rest of the family in a way that Toby's difficult care regime has previously made difficult. This is just piling on the guilt sky-high, that I may actually enjoy a different level of freedom while he has been pushed out. Its all adding up to be the biggest guilt-trip I've ever felt. I really need to find a way to reconcile these dichotomies, and move past these negative feelings as quickly as I can,
I owed it to Toby to find the very best solution I possibly could for him, and that's one area where I really do feel I've done well.
We have lived on our road for over 12 years, and directly across the road is a Residential Care Home for Learning Disabled adults. They are our neighbours. Over the years I've got to know a few of the more able residents, and I've seen how consistently happy and well-cared for they all are. Today they got a new resident - our Toby!
So he has moved across the road, still in the community he has grown up in, and still able to be an integral part of our family. He will be able to pop home several times a week, but in time, once the dust has settled, hopefully he and I can begin a new phase in our relationship, and for the first time ever, I can be his mother, not his carer. Other people will do all the stuff that exhausts me, the stuff that gets in the way of doing things like playing silly games, singing crazy songs, laughing like drains together at nothing in particular, and just having fun. Just like any other young person who is leaving home, his bedroom will still be here for him to stay over on the occasional night too, and certainly for birthdays and Christmases there's no way that our very own King of Celebrations could possibly be anywhere else but at home.
He has spent a lot of time over there during the past few weeks and he has quickly worked his magic on the staff who already seem to adore him. He is incredibly proud of his new bedroom. He can stand on the pavement outside our house and point correctly while saying "Mummy's House" and "Toby's House". However, I don't think it's dawned on him yet that this is permanent.
Please don't think for a moment that organising such a perfect solution has been easy in any way whatsoever. Normally people like Toby can get shipped off to somewhere miles away, even to the other end of the country. I've had to stand and fight Toby's corner against all the odds to make this happen, and it's taken months. Obstacles, hoops, political agendas, funding, policies, protocols, ideology - I've had to battle my way through more than you could ever imagine to make this happen. Only time will tell, if and when Toby is settled and happy, whether the standing my ground was worthwhile or not. I so very much hope that it was.
Next blog - I'll tell you about how we made it happen, and some of the rather shocking lessons I've learned along the way.
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