Wednesday 19 February 2014

Toby's New Home

Toby left home an hour ago, and it feels so final, and so sad, but I know in my head I'm doing the absolute right thing for him, I just need time to allow my heart to catch up and see sense too. 

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. 


If you’d like to buy a copy of Yvonne Newbold's book,  “The Special Parent’s Handbook”,  here’s the link to the Amazon Page:






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22 comments:

  1. You did it!!!!! I'm so so proud of you!!!! You got the right place for him, at the right time, and even if only in a small way, he gets it! You... are a superstar!!!!!!!

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    1. You are such a dear friend, Benedicte, with a finely-tuned intuitiveness which always enables you to say exactly the right thing, thank you so much. I don't feel close to being a superstar yet, though, but if he is still happy, settled and accepting of the situation in a few weeks time, I'll be over-the-moon ecstatically happy. Thank you xxxxx

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    2. Ah... the thing is that you have utterly done the right thing, with all the information and power at your hands. He is not always going to be happy, but you are so close that you can keep an eye on him. You will know if he is well cared for, and when you feel that, you will begin to relax. That's the measure of happy and superstar. Toby will undoubtedly go through a really tough time as he begins to realise he has moved out, and eventually will come out the other end and enjoy the visits home. Allow yourself to be proud of you.... You deserve it :)

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    3. Thank you Benedicte. We've been to see him a few times now, and he just wants to come home, which is so so sad, but everyone there, staff and other residents, are all being so lovely to him, which helps. You're right, it's going to be tough for a few weeks, but it helps to look and see how happy all the other residents are and to know that they must all have had to go through the same curve of acceptance to begin with. Thank you xxxx

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  2. You have showed Toby nothing but unconditional love and support. You have arranged for Toby the best possible future you can give him! And that's marvelous.

    "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." - ABSOLUTELY.

    This is a very powerful statement here..."I can begin a new phase in our relationship, and for the first time ever, I can be his mother, not his carer."

    Enjoy this new phase of your relationship! High 5.

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    1. Thank you so much, your lovely words almost moved me to tears this evening, your kindness means so much. I'll save the high five for when I know he's happy with the situation if I may! Very many thanks. Yvonne xxx

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  3. Yvonne, I'm so delighted that Toby has not had to move too far, everything will be familiar to him and you will be moments away, you seriously could not have done any better for him. Having been both Mother and Carer to Toby all his life you will still be both, as you will be his Mum and care for him but just with a little extra help xoxo

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  4. Thank you Adrienne. As outcomes go, it's a pretty good second-best, and the home is really so lovely that I'd be happy for him to be there wherever it was located. Some families have their children placed over 200 miles away because getting the right fit is so hard. So yes, we're lucky, it's just I can't quite see it like that until I've got my head around it. Your lovely kind words mean loads, thank you so much xxx

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  5. Yvonne, you have been so selfless throughout Toby's life and, even though you are feeling guilty because you have perceived some 'benefits' to you in yours and Toby's new life situations, that is as it should be. You haven't made any selfish choices here, they have all been based on what's best for Toby but you need to know, and to believe, that even if your choices had been for you and only you, they would have been the right ones for Toby. You are the centre of his world and anything you can do to relieve your stress, aid your immune system and help yourself to prolong the amount of time you can stick around to share your wonderful, loving and inspiring self with him - and the rest of the family - isn't selfish, it's essential. Love lives inside and what you do for yourself in a loving way, you do for others too. We've never actually met Yvonne, but I need to tell you I love you xxx

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    1. Heather, thank you so much for your very kind and very sensible words. I'm a lot more philosophical and together about the decision today, and you're right, it isn't just a straight choice between me and Toby, it's a choice between me being around for the longest possible time to support him or not. You are also always so supportive and caring and I always feel you're looking out for me and on my side. Next time you're in this neck of the woods we must meet up for that coffee. Take care and lots of love and thank you again xx

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  6. You are a hero without a cape

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    1. Bless you, Eaglex, and thank you. Am I allowed to wear my pants over my trousers now too please?! Thank you too for making contact today xx

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  7. dear Yvonne,

    I am so thrilled for you and your Toby. my hope for both of you is for sheer joy, and you deserve nothing less. savor the goal well met - that your found the very best possible solution, and all the bonuses attached for you, Toby, and your entire family. I am doing a happy dance in my head for all of you!

    you are an extraordinary woman, so full of love, generosity, fortitude and a wonderful example to us all with your determination to do your best. do all you are able to take good care of yourself and enjoy your huge accomplishment. I love ALL the photos of you and Toby - each one shows the very special bond of love and joy you have for each other.

    much love and light,

    Karen XOXOXO

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  8. Thank you Karen, I laughed at the happy dance in your head - I do that all the time over all sorts of thing too! Thank you too for your very kind and thoughtful comments, I am slowly getting my head around things and getting past the guilt too. It helps that I'll see him this afternoon hopefully too. I'm thrilled with the photos too, and I normally hate my photos taken. I'm so grateful you have taken the time to connect with me, and your words mean so much to me. Take care, love Yvonne xx

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  9. Yvonne, oh my dear, you are just an incredible human being - that's all I wanted to say - sending you love from down under x

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  10. Bless you, Marie. You are always there, always saying lovely supportive things, and I can't tell you how much your words always mean to me and how much I appreciate your very kind words. Love Yvonne xxx

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  11. It takes such great courage to odd the right thing for Toby just now. Go well and be kind to yourself. Sending you my warm wishes and huge admiration for all you do.
    Audrey

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  12. Thank you so much for your good wishes Audrey. Things are a bit brighter, I'm hearing positive reports that he's settling well and last night I was on the phone to them and in the background I heard his infectious laughter which made me really happy. I'm very grateful that you took the time to leave a cooment, it means a lot to me. Love Yvonne xx

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  13. Hi Yvonne. It is brilliant that Toby is so close to you. Yours and Toby courage is wonderful and truly an inspiration. Your words convey so much love and honesty. I wish you and Toby all the happiness in the world.

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    1. Thank you. It still feels really raw and really sad, but I think we'll both get through it and out the other side before too long, hopefully. Thank you for your kind wishes xxx

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  14. You are amazing, Yvonne, for all you have done. I cannot imagine this was easy in any sense - but I hope it is going to be so for you both.

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    1. Thank you Catherine. I don't feel in any way amazing yet, but it's very early days still. Everybody is working together to support him and help him settle, that it will happen, I'm sure, but I think we've still got some way to go yet. It's so hard when I see him and all he can repeat over and over again is "home". However, I've also heard him laughing and shouting very happy noises sometimes when I ring up, so I think it's just going to be a matter of time. Hope so anyway! Very grateful for your kind words xxx

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