My Socially Awkward Life

What Will Happen To My Autistic Child After I Am Gone

What Will Happen To My Autistic Child After I Am Gone

 

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!

 

What Will Happen To My Autistic Child After I Am Gone

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.

 

What Will Happen To My Autistic Child After I Am Gone

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.

 

What Will Happen To My Autistic Child After I Am Gone

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.

 

Rachel's Signature

 

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.

 

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3 Comments

  • Reply Anne Newsham-Firth July 7, 2019 at 4:00 pm

    Hi Rachel, I just read your article in the Mail on Sunday . I have an autistic daughter aged 35 and constantly worry about what will happen when I’m gone despite me being fit and healthy. It’s such a nightmare. She is in supported living and has just moved for the fourth time! This time I’m hoping that this is the place and all will be a success but having just had a phone call to say she is refusing to go to an activity this afternoon and what can they do I do wonder. Having only been with her this morning and told in no uncertain terms to leave it’s very frustrating.
    You sound to have an amazing family and reading your article rang so true with me . Unfortunately my marriage did not survive the pressure but I have been blessed in finding my soulmate who is also an amazing stepfather.
    Wishing you best wishes for your boys, they are lucky to have parents like you. It’s a frightening and exhausting journey but the good times are so worth it.

    • Reply Rachel Edmonds July 8, 2019 at 9:33 am

      Hi Anne, thank you so much for taking the time to leave a comment and read the article. And I’m so sorry that you too are having problems. It seems that even those that do get some support don’t have the right sort. I do often wonder why professionals are confused when someone on the spectrum won’t engage?? It’s as though they don’t actually understand autism at all. Another mum I know had similar with a school. They wanted her to leave so they could get on with ”teaching” her daughter. She ate the class goldfish half an hour after her mother left! I so hope your daughter settles and that it’s the right place for her. And yes, the good times make everything worth it don’t they.

  • Reply Name withheld February 3, 2020 at 5:05 pm

    Hi Rachel, I typed in RFW looking for a plastering you tube and got you! No offence but not who I was looking for but I stayed awhile. Tough with offspring with needs isn’t it? I’m a step dad with two adult sons with support needs, who despite this are now out in the big world. It’s not perfect by any means but they not reliant on us any more or overly reliant on their sister who has her own family.

    It’s been rough, I used to work in the sector contracting for social care services then go home to the mayhem. Autism, Aspergers, Learning Difficulty, Dyslexia, Drink, Drugs, OCD, Crime, Criminals and Abusers, yup ticked that box.
    We’ve won with one, and lost with the other. A classic case of one falling thru the net due to School/Care Service failing to support.
    Key things you have to do to set them free, and fight like hell for it; Get each of them an independent Advocate asap even before 18 if possible. They will represent your child after 18, with or without you, and possibly against your own apron strings. Don’t rely on any Council who might be required to provide now, but either cannot or change the contract and person periodically. For J we found a lawyer, pro bono, took a long time but it has been great. Unbeknown to us she had to actually threaten the Social Service with legal action to keep him in the supported living accomodation of his choice when his high needs had finally reduced.
    Find a specialist autism Provider with supported living capacity, and move them OUT. They need to have it all explained and it’s heart breaking, very tough on all, but really they want to be “normal” and this is what normal is, just like any student or other young adult. It takes time, the Council will fight it, pay if you have to but get an independent assesment of needs, go through the legal process of having them thrown out of home as opposed to intentionally homeless etc if need be. It will get worse before it gets better. Then you have to develop employment ideas and help the Provider and keep them up to the mark as well.
    If (? When!) you die the Social Service will get the inheritance not them, unless you set up a Trust, and make a will with the correct wording. Do it now, before the unforeseable incident happens, make a will and ensure any other potential benefactors like grandparents have the right wording in their wills aswell.
    I found our advocate via the Law Society when researching this bit.
    I recommend doing it through a specialist Charity such as the Disability Trust. Such charities get best investment advice, legal deals and will outlive both you and any trustee, and can appoint new trustees as and when necessary. I also suggest making it a discretionary and joint trust so that all the children can benefit even if one dies earlier. Afterwhich, it is optional but surely the charity itself deserves the rest.
    We won with one, he is relatively happy with pretty normal concerns about lack of a girlfriend or getting another job, secure in his shared home and benefits.
    The other? We tired so hard but lost. No proper diagnosis when young, no support at school(s), disruptive, deliberately engineered leaving a good special school because of insecurities about his mum getting together with me. Domestic violence, emergency housing, probation, petty crime, muggings, then a serious offence and an Indeterminate Sentence. Unfortunately he liked prison at first, wing mates, drug dealing, a system to kick against, food and no bills, repeated violence. We have been all over the country to visit him, sent cards, letters, calls, a little money, trying to get him to change and getting close once. Prisons are not cushy or easy places. Everywhere the prison staff have been great and really try against insurmountable odds.
    We still support him, but now it is from afar. Despite despising hard druggies he finally subcumbed and took Spice. Mentally it affect him badly and he has never been the same. After a lot of very aggressive demanding calls from him we all had to step back a pace. He has grown deliberately distant from us, refusing visits, out of contact for 18 months, a recent call shows no improvement. He would like to leave prison now but only on his own impossible terms. It has been 10 years now, even if released in at best 3 years he will happily throw himself upon the Social Security and probably return to prison. Strangely, supported by the Prison Service, he is now free and not reliant upon us as we grow old.

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