The other day the very lovely Sharon from @the_arched_windows posted a very poignant picture on her Instagram story. It highlighted what many of us parents of special needs children have at the back of our minds 24 hours a day. It’s one of our first thoughts in the morning. And one of the last ones as we fall asleep. And although this affects all special needs parents when your child’s disability is hidden getting support is not always easy. How will they get help when many of the difficulties they face can’t be seen on the outside? My biggest fear in life is what will happen to my autistic child after I am gone?
As you know I have three boys, two of whom are autistic. My youngest I don’t worry quite so much about but my middle son…… Sometimes the worry is so great that it’s a physical pain. Sometimes it’s so bad that I can’t leave the house. Other times it’s just there, constantly in my head. Making living everyday that little more painful. Then suddenly a week or so ago a very dear friend died very unexpectedly. It’s hit me so hard that I just can’t get it out of my head. One day you’re here and the next you’re gone. And I could go on and on about how life affirming it is and how we should live everyday as though it’s our last!
THIS IS SHARON’S INSTAGRAM STORY POST – SORRY IT’S A BIT BLURRY
But truth be told, my heart just feels a little emptier and the only affirmation is that one day I won’t be here to look after my boys. I might have years to come with them but after losing both my Mother suddenly when I was eleven. And then my brother, again suddenly when I was twenty one, I know the future is not always rosy. Because of this, life for me has always been about grabbing it by the balls and making the best of it. So it’s really not like me to have this dark thought as a constant companion. It wasn’t there when the boys were small. It’s crept into my brain over time. Nestling in a corner starting off as a whisper it’s now shouting at the top of its lungs!
As I write this I wonder how many other mums with autistic children feel the same? After all it’s not something we are likely to say out loud. I mean it’s a great ice breaker at a party isn’t it?
Hi, I’m Rach, oh and by the way my greatest fear is what will happen to my autistic child after I am gone!
Not that many of us get out to parties, I mean getting a baby sitter for your eighteen year old isn’t always easy. Autism covers such a huge range of difficulties. People say well what’s your child’s gift? Because we all know that every autistic person on the planet is a savant, NOT! No, every person on the spectrum has certain traits that they share but how these traits manifest is different for everyone. Just like us neurotypicals every person on the spectrum is an individual. Every person is different and with that has a set of needs that are individual to them. Yet professionals stop listening to the parents once our children turn eighteen. I’ll give you an example.
MY BOYS ON THE RARE OCCASION WE ARE OUT AS A FAMILY
On my eldest sons eighteenth birthday we had a huge party. We let him go out with his friends and basically have a whale of a time. In stark contrast when my middle son turned eighteen we couldn’t get him to leave the house. In fact in the last 5 months he has left the house only four times. As if the pressure of having an adult child with special needs isn’t bad enough all of a sudden they are an adult and your parental rights vanish. Now his GP won’t speak to me about him. Anything that concerns his future lays on his shoulders which of course he can’t do. Nor should he have to.
Let’s not even get started on what happens when your special needs child turns eighteen. For other families it’s a celebration. For us, its about transitioning to adulthood! That’s what Social Care call it. It’s a move from children’s services to adult services. Basically a social worker turns up to access whether your child will need help in the future. This one person makes the decision whether your child will need help. Your child also has to move from paediatric services to adult. My middle son has had support with his mental health since he was fourteen. Now that support has gone. Apparently he doesn’t meet the criteria for adult care. So I’m left with a GP who no longer speaks to me and an autistic adult who also suffers from OCD, anxiety and pathological demand avoidance. Yes, that really is a thing.
NO IDEA WHY I’VE INCLUDED THIS RIDICULOUS PIC (YA GOTTA LAUGH OR YOU’LL CRY) – THIS MAN IS MY ROCK
But, and this is a big but, the strain on social care is so huge that the real likelihood is that my eldest son will end up being the carer of his two brothers when we are no longer here or able to do it ourselves. A sad fact of life is that many siblings of autistic children end up looking after them. That in itself is a heavy burden for a mother to carry around. We all love our children and whilst I fear what will happen to my two autistic boys I also mourn the life that my eldest will never have. He will I know take up the mantel, he already attends all the endless and usually pointless meetings with me. But in all honesty why should he?
I feel so sorry for our neurotypical siblings. Whilst we fear what will happen after I’m gone….. They live everyday knowing that one day they will be parenting their own brother or sister. It’s seems somehow that this country’s professionals has forgotten how to care. I don’t want my eldest to be a carer for the rest of his life. I want him to fall in love, travel the world, be happy. And I want some help for my middle son now! Not when I’m no longer here. He deserves happiness too. I want the support he needs. The support that countless times professionals tell me doesn’t exist in the system. That there’s a loop hole you know! You only have to read the statistics to see that an entire and significant proportion of our population isn’t getting the support they are legally entitled to!
I’ve no idea why I’m sharing these ramblings with you all. I certainly don’t want you to feel sorry for me. I do know though that I feel better for having written it down. My thoughts feel more centred and it feels so cathartic to say my fears out loud. I’m sure I’m not the only one that lives with this fear everyday and yet you never hear about it. And that only adds to the feeling of isolation. Perhaps I’ve written this to say you are not alone. And to never be afraid to speak out about it. Share your story, let people know. I mean obviously don’t bore the pants of everyone. But, if we don’t speak out how will things ever change? Please don’t let it be forever be swept under the carpet of life.
NB. I was lucky enough to have this piece picked up by You Magazine. I am so grateful to them for highlighting an issue that affects many families across the UK who find themselves in my position too.