Life in progress

10/16 – Yesterday’s News – Caring

50 Comments

moon

The article in yesterday’s newspaper that caught my eye was about a community group which takes disabled adults (over age 16) on outings. The sentence in the article that sparked my interest in particular said, “Without our programs, some of these individuals would be staying at home so it helps reduce the risk of isolation for the parents and caregivers as well as the participants.”  That got me thinking.

The first thing that comes to my mind when someone mentions ‘caregiver’s isolation’ is simply the fact that when they’re stuck at home caring for someone who is disabled, they just don’t go out. But it goes so far beyond that.

As a parent of disabled children I find it hard to have discussions with parents of “normal” children, because we have so little in common. Even people who aren’t parents of kids the same age as mine (for instance, if they’re grown up and moved out) have a hard time relating to me. Whether they assume because my kids aren’t like theirs, they can’t possibly have any of the same tendencies, or whether they’re afraid of being told that their problems can’t possibly be as bad as mine, I”m not sure. Maybe it’s both. Therefore, I try not to talk about myself much. When they are kind enough to ask me about myself, no matter how nonchalant I am about the way I live, telling anyone about my kids is a slow death towards being a conversation stopper. Occasionally they’ll mention a niece, or a neighbour who has a similar circumstance, or they’ll ask me questions about the health of my children, but when I’ve said all there is to say, if I don’t quickly find something other than the weather to talk about, (and it’s always up to me to find something, because no one knows quite where to go after being told about my kids) then it’s game over. In fact, come to think of it, it shuts people up about as fast as telling a stranger I’m writing a novel. Think about that for a while.

Having said all that, I’ve been invited out tonight with my next door neighbour and six of her closest friends for dinner, none of whom I have met before. As long as I can keep the conversation away from my kids, I should be fine. But of course someone is bound to ask me what I do for a living…

My point is, the isolation parents and caregivers of the disabled experience isn’t necessarily as clear-cut as it sounds. So next time you come across a single, stay-at-home mom of disabled children, or a novelist for that matter, don’t be afraid to look beyond what’s apparent.

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Author: Linda G. Hill

There's a writer in here, clawing her way out.

50 thoughts on “10/16 – Yesterday’s News – Caring

  1. EightLeggedGemini's avatar

    friends should be there to listen to what’s on each others minds, and notice what isn’t said but maybe should be.
    i’d be upset if my friend with her autistic daughter felt that she couldn’t speak of her, just as i speak of my own daughter.
    every time i get the chance to visit them, the stories of what they’ve been upto, the tantrums and rituals, we laugh 🙂 and if we don’t, then a cuddle and a cup of tea usually bring a smile.
    xx

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  2. joey's avatar

    I couldn’t relate to this. I was actually perplexed and wondering if you were too sensitive, or even imagining the reactions of other people, UNTIL I got to the “writing a novel” bit.
    *pause*
    Obviously you’re just, and I’m sorry I even questioned your perception.

    Some of us do ask questions with every intention of hearing the truth to “How are you?” and “What have you been doing?”
    But see, I am a weirdo, who finds the truth much more interesting than “Same ol’ same ol’, can’t complain.”
    I’ve got nothing to learn from pleasant conversation.

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  3. suzjones's avatar

    Having never had a child with a disability, I wouldn’t even presume to know what you go through however I work in a disability organisation so I do see both sides of it. I know that without us, some parents would never get a break. Good for you for being proactive in your role as a mother and caregiver. 🙂

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  4. AnnZ's avatar

    Thanks for posting this, Linda. To me it seems like we (single parents of disabled children/adults) are invisible or, conversely, expected to “suck it up” and join in with everyone else. No matter how well meaning, it still stings. Thanks for bringing this to light.

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    • Linda G. Hill's avatar

      Thank you very much for commenting. There’s so much unseen work that goes on in our lives, and I find it’s the professionals who demand the most of me at times. They don’t seem to be able to understand why I can’t do everything.
      I think we really need to stick together, don’t you?

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  5. Pingback: 10/16 – Yesterday’s News – Caring | 1st thought of the day

  6. stanletta's avatar

    I’m not a parent of a disabled kid but I always say that parents of disabled kids are special….hand pick by God. My cousin has a disabled son and I help her care for him but I don’t have the patience she does. I have to reblog this article..it is insightful and needs to be kept going. Thanks for sharing.

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  7. bigbadbith's avatar

    Reblogged this on Big Bad Bith's Joy of Life Bogspot and commented:
    Another good read

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  8. rosie154's avatar

    Very insightful. I’m a social worker in the Disability field in Australia and am working on a support group for parents once their adult child moves into shared supported accommodation. It must be difficult not having that peer support.

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    • Linda G. Hill's avatar

      Thanks very much!
      It is difficult to find people in the same situation. Half of the reason is that we do rarely get out of the house (especially single moms like me) and the other half is that we miss one another when we do meet, because we hesitate to talk about it for fear of scaring people with “normal” lives away.

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  9. Matthew Fray's avatar

    I really liked this. It is something I have, in 34 years, never considered until now.

    Thank you for the insight and enlightenment.

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    • Linda G. Hill's avatar

      Thanks very much 🙂
      It’s not something a lot of people talk about, so I’m not surprised that it might not have crossed your mind. I find WordPress to be an invaluable source of information on the experiences of others.
      Glad to be of help 😀
      Thanks very much for commenting and for visiting!

      Like

  10. Emily's avatar

    Very insightful piece. It is hard to know by looking at someone how lonely they may feel or what they are struggling with- which is also a great reason to always keep in mind to treat strangers with kindness as you never know what they are going through.

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  11. Sue Peterson, MA's avatar

    Great post and good reminder Linda. So much of our day-to-day interactions have so little to do with actual reality of our day-to-day lives, but that is easy when we can just deal with surface level similarities and assumptions. It becomes more difficult when our day-to-day lives become more complicated than that…

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    • Linda G. Hill's avatar

      Thank you so much 🙂
      As caregivers of the disabled, our lives are complicated, but at some point it just all becomes normal for us. The problem is, what’s normal for us is alien to most others. It’s all just a matter of perspective.

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  12. adoptmomof6's avatar

    People definitely don’t understand ….. we have 4 kids that have reactive attachment disorder besides other things …. really hard ……..

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  13. Pndrgn99's avatar

    Nicely and honestly spoken. You can believe having spent 20 years as a case manager and mental health but I’ve heard Heming & hawing and b******t. I guess those of us who actually done the work and loved it are more uncomfortable with the awkward way that people relate to your children and any others with mental illness or disability then we are with The real feeling human realities of the situation. As a worker the most common comment ever people asked me what I did was I isn’t that difficult!. Sometimes it’s rewarding and sometimes it’s difficult like, oh my God anything else, wow that sounds almost normal. Perhaps you’re kinder than I am I get the feeling when I read your article that I would probably turn to somebody and say so what do you think I’m my kids worse than a heart attack or about like A bad case of the flu? Well I’m getting older and a little less “assertive”. Maybe as I get older I’ll become adjusted to equitable around “normal” people.

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    • Linda G. Hill's avatar

      I think everyone has their own level of comfort with the disabled. I’ve seen people interact with my kids and I’ve seen them quite literally run away. But even some of the people who realize that my kids are human beings like everyone else have a hard time with me. Sometimes I actually wonder if they think I’m going to ask them for help…
      Thanks very much for commenting and for sharing 🙂

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  14. tlryder's avatar

    I occasionally go silent and stupid on the subject of other people’s disabled kids because I don’t want to say something ignorant and offensive. In my own defense, I once made a mom of a young man with severe mental illness cry in the video store where I worked by simply always treating him as a valued customer– just like everybody else. So I guess I’m not totally hopeless. I think a lot of us are well-meaning but terrified. People say gob-stoppingly stupid things with the best intentions. Like the woman who told me she was sure that I write the most wonderful, sensitive children’s stories EVER, because I’m a homeschooling mom. I didn’t know how to tell her that my stories are all full of sex and violence and flawed characters and stuff. So I just stood there and blinked at her, gob-stopped. 😮

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    • Linda G. Hill's avatar

      Haha! Yes, it’s incredible how much people project their assumptions of what fits where on others, isn’t it? I think that’s exactly what we need though – what you did for that young man – to be treated as “normal.” Even for the caregivers of the disabled, it’s a rarity.
      Thanks for the comment and for sharing your story 🙂

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  15. Bruce Goodman's avatar

    We seem to be having lots of weather over here too – but you seem to be having more weather than us! (Just kidding! – great reflection).

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  16. Opinionated Man's avatar

    Reblogged this on HarsH ReaLiTy and commented:
    And I am sure at the same time we are not to assume anything either correct? 🙂 This was a good read and something people should keep in mind. -OM

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    • Linda G. Hill's avatar

      Just like when I’m walking around the block delivering papers, people assume that if that is my job I must be uneducated – it’s usually better not to assume anything.
      Thanks for the reblog, my dear. 🙂

      Like

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