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.

October 26, 2013 at 5:23 pm
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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October 26, 2013 at 7:09 pm
For me it’s hard to find friends in the first place. Your friend is lucky to have you 🙂
Thanks for the comment and for sharing your story 😀
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October 26, 2013 at 12:53 pm
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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October 26, 2013 at 2:09 pm
It’s funny, having the double whammy. If I get a bad reaction from someone when I tell them my kids are disabled I go for the, “And I’m writing a novel, too!” just to see them run. 😀
But seriously, I get the same reaction to both sometimes. Some people just don’t know what to say. Then there are people like you. 🙂
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October 26, 2013 at 6:18 pm
I’m the same. If I ask a question, it is genuine. There are some of us in the world. Have faith 🙂
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October 26, 2013 at 7:10 pm
🙂 I’ll keep looking.
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October 25, 2013 at 6:53 pm
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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October 26, 2013 at 10:54 am
Thank you, Suz. 🙂 There’s only so much that can be done to create awareness – I do what I can.
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October 25, 2013 at 6:32 pm
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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October 26, 2013 at 10:52 am
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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October 26, 2013 at 11:31 am
Yes. We do. I read an article recently of the qualities “employers” look for in potential candidates. 26% require community service. As you can imagine…I saw red. We perform community service 24/7 and when we aren’t doing that we are truly grateful for the employment we have, since it reminds us we once had a “normal” life.
Good suggestion, Linda. Keep me posted. I’ll follow you. Have a great day…and enjoy the small things.
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October 26, 2013 at 11:55 am
What we do is the least appreciated of all services by far.
Following you back, and thank you. You too 🙂
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October 26, 2013 at 12:45 pm
That’s what upsets me the most is the professionals that don’t even try to get it ……
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October 26, 2013 at 12:50 pm
And you’d think they would be the most compassionate and understanding…
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October 26, 2013 at 1:16 pm
I know exactly …….. RAD is our biggest issue and we were blessed with a great school that allowed me to educate them ……..most families aren’t that blessed therefore it makes kids that have RAD worse. I just don’t have any tolerance of a professional that can’t pick up a book or get on the internet ……….
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October 26, 2013 at 2:13 pm
Why would they? They know it all already. *sarcasm at its finest there haha*
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October 26, 2013 at 2:34 pm
Haha ……. thankfully some wonderful parents pointed me in the right direction …..
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October 25, 2013 at 6:07 pm
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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October 25, 2013 at 6:15 pm
Thank you very much for your kind words and for sharing. Somehow, when we have no choice, we find the resources inside us to do what we have to do. I’ve never considered myself to be special, nor am I burdened… I just, simply, carry on.
🙂
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October 28, 2013 at 12:44 pm
You’re very welcome. keep doing what you and always remember that there may be a million moms on the planet but only a few can do what you do.
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October 28, 2013 at 4:50 pm
🙂 I’ve been told that before, but I still like to think that most moms would step up and do all I do and more.
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October 25, 2013 at 5:22 pm
Reblogged this on Big Bad Bith's Joy of Life Bogspot and commented:
Another good read
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October 25, 2013 at 5:29 pm
Thanks for the reblog 🙂
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October 25, 2013 at 4:47 pm
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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October 25, 2013 at 4:58 pm
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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October 25, 2013 at 4:31 pm
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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October 25, 2013 at 4:53 pm
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!
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October 25, 2013 at 3:34 pm
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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October 25, 2013 at 3:43 pm
Very true. Everyone has their own problems to deal with – something I never really considered until I had my kids.
Thanks very much for your kind words and your comment 🙂
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October 25, 2013 at 3:10 pm
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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October 25, 2013 at 3:40 pm
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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October 25, 2013 at 3:06 pm
People definitely don’t understand ….. we have 4 kids that have reactive attachment disorder besides other things …. really hard ……..
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October 25, 2013 at 3:37 pm
It’s hard on so many different levels too, isn’t it? It’s not only caring for them, it’s figuring out how we fit into society, because society just doesn’t understand how we cope.
Thanks for commenting 🙂
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October 25, 2013 at 6:22 pm
Sometimes we don’t fit into society or even in our families. Education is the key. I was blessed because my brother married a special ed teacher. I taught her about RAD and she helped with my family when they thought I was to strict. Our kids have lots of special needs but besides a little with one they can’t be seen …..therefore we have been harshly judged.
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October 25, 2013 at 6:28 pm
You are so right – it’s all about educating people. Things are better than they were when I was growing up forty years ago, but there’s still a long way to go.
I’m constantly having to tell people my son is Deaf. Until they realize that, they think he’s ignoring them…
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October 25, 2013 at 7:28 pm
We are working to try to raise awareness about RAD ….. that is why we are so open about our kids ……
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October 26, 2013 at 10:56 am
Exactly. I thank you on behalf of people with disabilities everywhere and of every sort. In a way, we’re all in this together. 🙂
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October 26, 2013 at 11:08 am
Please visit our website http://www.patches-ff.org our oldest son is the 2nd story under child histories ….. our facebook page is Patches Family Foundation – RAD
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October 26, 2013 at 11:16 am
Thank you! I’ll have a look 🙂
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October 25, 2013 at 3:00 pm
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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October 25, 2013 at 3:33 pm
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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October 25, 2013 at 2:57 pm
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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October 25, 2013 at 3:27 pm
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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October 25, 2013 at 2:45 pm
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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October 25, 2013 at 2:47 pm
Haha! I was waiting for someone to comment about the weather. Thanks for not letting me be disappointed. 🙂
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October 26, 2013 at 2:29 pm
I’m too predictable 😦
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October 26, 2013 at 2:59 pm
Nah. Look at it that you’re the one I can really count on. 😀
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October 25, 2013 at 2:35 pm
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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October 25, 2013 at 2:51 pm
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. 🙂
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