Worrying About Your Disabled Child’s Future

Today, I came across a post by the mother of an adult with Down Syndrome on the topic of birthdays and more specifically, crying on your child’s birthday because you’re worried about their future. I left a lengthy comment, on which I want to expand here.

My parents probably cried on my birthdays too. At least they were usually emotional. I don’t know whether they worried about my future, but they sure thought about it a lot. I survived the neonatal intensive care unit with several disabilities, some of which wouldn’t be diagnosed until many years, decades even, later. I had had a brain bleed, retinopathy of prematurity, and a few other complications. My parents knew soon that I would be severely visually impaired, possibly blind. I don’t know whether they knew or cared about my other disabilities.

My parents started thinking about my future early on. They started communicating to me about my future early on. At age nine, I knew that I was college-bound and had to move out of the house by age eighteen. I don’t know whether it’s normal to plan so far ahead for a non-disabled child. My parents didn’t do this with my younger sister as far as I know.

It is understandable. With non-disabled children, independent living and college or employment are the default. Positive parents, we’re told by the disability community, keep the bar of expectations high, so they expect the same from their disabled children that they do from their non-disabled children. To be honest, I hate this attitude, which sends the message that to be successful is to meet up to non-disabled standards. We aren’t non-disabled, for goodness’ sake.

Let disabled children be children please. I understand it if parents worry about their child’s future, especially in societies that don’t have socialized health care and if the child is severely disabled. I understand that these worries get somehow communicated to the child. There’s no way of preventing this. What you can do, is minimize the worrying as much as posoible and turn it into positive but also unconditionally accepting encouragement.

26 thoughts on “Worrying About Your Disabled Child’s Future

  1. Thank you for a very thought provoking post. As parents we seem to be planning what our child will be or do from the moment they are born and sometimes don’t stop to let them be children. However I think applies to disabled or able bodied children.

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  2. This is a very interesting post, one I don’t really have any experience with. I can understand that a parent would worry about a disabled childs future, but it would depend on the level of disability. I could guess that they would worry that they may not lead a normal life.. which isn’t the case! As for no disabled children… it’s the same, all parents worry but I guess in a different way. I’m a bit shocked that at the age of 9 you knew where your parents wanted you to go…

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    1. That was the hardest bit, knowing early on what I’d have to achieve. I am a natural worrier, so it wasn’t fun. I’m not sure whether my parents actually had sone kind of “grow up” talk with me in which they laid out their goals for me. I’m pretty sure not, but that this was just communicated indirectly by saying stuff like “later, when you’re at university…”.

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  3. My parents always had high expectations of me and I know I have the same of my children. Ultimately I just want them to be happy and lead a fulfilling life.

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    1. Of course I understand that. To be happy is however sometimes different than to have a fulfilling life (by non-disabled standards). I am not terribly happy, but not unhappy either and I’m okay with my level of success. However by non-disabled standards, I’m not successful at all, having dropped out of college and living in an institution.

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  4. Astrid, thank you for sharing your point of view, it’s really interesting to read. As a parent I think it’s important to remember that we don’t own our children, they’re independent people and need our support and encouragement to find their own way in life, even if they follow a very different path to our own.

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  5. I have friends who do worry for their severely childs care after their own deaths, and I can understand why they would in that circumstance. In less severe cases I would hope I just would wish them a future that makes them happy. I am hopeless at planning whats for dinner, let alone beyond that though.

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  6. This is a hard one. As a parent you will worry about your children (abled or disabled) and you will worry about them when they are adults. It is a bond that will never break.

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  7. You make such a good point and I have to say I agree. As a child SECURITY is paramount. Feeling like you turn into an unwelcome pumpkin at 18 (like midnight) couldn’t be good. I don’t know much at all about SEN or disabilities but I definitely agree with the sentiment you express.
    Liska xx

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  8. Very interesting post. Cannot imagine how hard it must be worrying about a disabled child’s future. My cousin has a disabled child and I know she finds it tough sometimes

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    1. Definitely. My point wasn’t really that you shouldn’t be worried, although the blogger I replied to wished she’d worried less. I think that you can turn worry into positive encouragement.

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  9. Thank you for sharing this! It is so important! A couple of my kids have fairly minor disabilities, and it has surprised me (in a good way) how wonderful life is if you just accept the difference and see the kids as who they are – with their unusual strengths as well as unusual weaknesses. I hope my reaction would remain the same if their issues were more serious. I think it would, but it’s so hard to tell if you haven’t been there.

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  10. I think they can worry but without putting guilt on the child… I’ve seen it happening – young people feeling guilty because they are different, because they are disable – all because parents made them feel this way…
    All we need is much more support for disabled people and their families.

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  11. I know my parents worried for us. The blindness was a huge thing in th e 80’s. I think nowadays its less of a big deal. But back then not much was known about how to help blind kids. Xx

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