I am in the process, thanks to a local grant and a hefty re-mortgage, of adding an extension to my house for Harry to have his own bedroom and wet room. This was always my intention from the day I bought the house because, back in 2012 when Harry was 7 years old, I was certain that he would always live with me and never move to an assisted living placement.
Recently, celebrity Katie Price has come under huge attack for deciding to place her eldest son Harvey in an assisted living arrangement. She has defended her decision when she shouldn’t have to and tried hard to help people understand why it’s in Harveys best interests but her efforts have fallen on deaf ears. Because unless you live with a child with SEND (Special Educational Needs and Disabilities) there is no way you can comprehend the challenges and no way you could possibly know the heartache that accompanies the decision.
Here are just a few of the reasons why, having once been adamant that Harry would live with me forever, I now accept that one day I will have to consider an alternative.
Harry is almost 14 years old now and with each year he grows taller and stronger. Not too long ago he pushed me down the stairs without meaning to and the fact that he laughed rather than was concerned when I stumbled and cried out, shows that he is a long way from knowing how much harm a moment like that could lead to. His meltdowns are fewer nowadays but more volatile and it’s much harder for me to intervene and help him. He simply doesn’t know his own strength and can be a danger to himself as much as anyone else. Harry is also waking earlier and becoming fascinated by the workings of the microwave, oven, toaster etc. Yes, I can lock the kitchen (and will shortly be doing this) but do I really want either myself or my son to live in a home that he can’t fully access at any time? Is that the quality of life I hoped for him?
I love to see Harry growing in confidence and ability. Independence is something that we take for granted in our children until we have to work hard to encourage it. However, I am a soft touch. I don’t always push him to do the things he is capable of, as much as I should. I know his teachers do and I see the brilliant results. As much as the thought of someone looking after my son simply because they are paid to do so, terrifies me, when I think of the school staff who have taught and loved him over the years, it reassures me that the right staff, in the right assisted accommodation will not only encourage Harry’s independence in a way that I probably won’t but the knock-on effect of that is that my boy will be equipt to live without me.
When I am gone
Ok so, playing devils advocate for a minute, let’s say Harry lives with me forever and I employ carers for the times when I struggle to care for him. He would always be close to me and I could see him every day which I would truly love. Then one day I will die. Harry will lose daily contact with me. He will also lose his home. Everything for my boy whose world is dictated by routine and the familiar will change in an instant and right now I cannot see that he will ever have the emotional intelligence or reserves to cope with this. Even if I wanted him with me 24/7, I couldn’t put him through this inevitable pain. It would be wrong of me and so as his Mum, it is my duty to ensure that his routines, his life, his future carries on seamlessly when I disappear. It hurts my heart even to think of it but putting Harry first, means I must do things that will cause me pain.
True, Harry struggles to articulate his needs and wishes at times. He understands far more than he can explain but this does not mean that he is without an opinion. Maybe Harry won’t want to live with his Mum forever. Maybe he will want that independence I am trying to help him develop and access to friends that have something in common with him. Maybe he will want to feel a part of something bigger than himself. I see how much he loves school. The enjoyment he has from belonging to a group and how the group has helped him in ways I never could. Maybe assisted accommodation will be a new group for him to feel a part of. I simply don’t know but I do know that I can’t impose my own wishes simply because he’s unable to explain his yet.
My own health
Harry doesn’t need much sleep. On average, 5 hours is plenty and he has no problem being awake for the day from 1 am onwards. And once he is awake, so am I. Watching him, keeping him safe, protecting him from his own energy and curiosity. For almost fourteen years I have been a faithful guard, only having respite on the nights that he sleeps at his Dad’s house. I am not playing the martyr here. There are many other families who have much tougher nights with no respite at all and they are my heroes because I know how sleep deprivation can affect a person. It distorts common sense, clouds a clear mind and slows an active body. It permeates into every aspect of your own health – physical, social, emotional and mental. Even now, I see that a bad few nights take me longer to recover from – think ‘hangover’ without the booze. So how will I fare in 30 years as a 70 year old, up from 1 or 2 am? I certainly won’t be able to offer the care I pride myself on giving my son nowadays. The sad truth is that my own health will suffer and if I want to be around to spend as much time as I can with both of my children (and the step-children I adore) I simply have to take care of myself (even though it feels selfish to acknowledge!)
There are so many reasons why, when the time is right, assisted accommodation will be a great option for my boy. We have created a trust fund so that he can have the very best quality of care and life and will, in time look at various locations for the place where he will live.
The only issue I have in seeing my son settled into assisted accommodation one day is that it will break my heart.
Loving and raising Harry is an honour and pleasure. Being his Mum, carer and advocate gives me a role, a purpose in life. Even on days when he is not with me, I instinctively look out for him or feel conflicted to be eating a meal without helping Harry to my right (always to my right). On the nights that he sleeps at his Dads, I wake thinking I have heard him. My brain and way of life are wired for Harry. What will I become when he is gone, when he begins the transition to a life without me? I need him as much, maybe more even, than he needs me. I can’t bear to think of it and so I don’t.
For now, I am excited about the extension to give him his own bedroom and wet room and the extra years that that will give us together as a family. I am taking it one day at a time and although the day will creep ever closer when I have to put my son’s best interests before my own, I am making the most of each and every day (can someone please remind me of this the next time I moan about a 1 am wake up call?)
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Dear Harry, When the time comes it’s ok to forget me
Charlie it’s IMPOSSIBLE for me to say how much I admire, respect & appreciate you lady!! Harry is a Blessed boy to have you for a Mum!! ❤️❤️❤️❤️
Thank you so much for your constant and much appreciate support! C xx
I think that assisted living is great. My uncle is severely learning disabled and he lives in a really nice place (in America) attached to a school. He can now make himself a sandwich and has a job (mainly doing repetitive tasks which he is good at and likes doing) which helps them all to feel “normal” and gives them a way to earn money that they wouldn’t be able to do otherwise.
He also has made some friends and has a pet fish. It’s good because they all get taught life skills as well, such as making beds and things, and when my gran and grandpa died (he lived with them when he was younger and before he became too much for them to cope with) he could deal with it and had friendly faces to talk to. He goes to see my aunt all the time and they all go on holidays together so he doesn’t not see them.
It’s a really nice place to visit as well and it’s great seeing him so happy.
He had previously been somewhere that wasn’t so good (I think he had a big argument with another resident and the staff weren’t so good about it) so it is important to find the right place for Harry to go.
It’s also good because it takes a lot of pressure off of you and the rest of the family, which is so important as well, and means that when you do see him it’s not so hard on you and is more special.
I hope that all makes sense… Its definitely not something bad at all and it’s disgusting that people think it is.
I love that your uncle is having such great experiences and that he had the friends and support to help him when your grandparents passed away. It gives me such hope for our future C xx
Thanks. It’s definitely the best for him. Try not to worry about the future too much, we are lucky to be living in a society today where the ideas and thought surrounding learning disabled people are rapidly changing for the better. You are such an amazing mum, that I’m sure your future will be good. 🙂
Charlie I really hope my daughter Naomi reads this . You are absolutely correct and selfless to want your boys life to seamlessly continue in his own safe routine. Naomi gets no break from Olly . Like Harry , he doesn’t need much sleep . She is exhausted . Although I help as much as I can . Olly is very strong and can be volatile. Of course we all love him dearly . You are a pioneer , a becon of hope . I’m so inspired by your determination to make the right choices for Harry ., whilst educating children and adults . Love and respect to you Fiona xxx
Thanks so much for your beautiful words C xx