Why do Holidays Have to be the Same For Everyone?
The current disability blog carnival, #20, is themed On Holiday. This is my blog entry on this topic.
A sibling of a boy with lissencephaly, a brain anomaly causing very severe cognitive disability, cerebral palsy and seizures, said the following about his brother:
"Tomorrow is my brothers birthday. He will be 7-years-old. We bought a caramel cake, but he won't be able to eat it. He will have 7 blue candles on his cake, but he won't be able to blow them out or make a wish. He will have birthday presents wrapped up in wrapping paper, but he won't be able to unwrap them."
This is a common complaint by family members of developmentally disabled people, it seems. I've heard plenty of parents complaining that their child doesn't understand or enjoy a holiday or doesn't do it 'right'. This is viewed as a sad thing and a source of frustration. Very often they keep doing it the conventional way, hoping 'this time' their child wil react the 'right' way. In fact, higher functioning children may be expressely taught 'social skills' related to how to act on holidays, such as 'open all your presents and thank the gift-givers before playing with your new toys.'
But why should they do it that way? What are holidays for, anyway? Really, most of them are all for being with those you care about, getting a break from everyday stresses and having a good time. When the disabled child and/or their family is getting stressed out by the holiday, it defeats the purpose. If your child doesn't like standard birthday or Christmas presents, for example, don't buy them. Get something your kid likes, even if it is a string to twiddle with or a shiny ribbon to wave around. Why waste money getting something your kid probably won't want?
In general, if you go away from the idea of holidays and 'having to be' a certain way, you can find ways to fully include the disabled person. I was anxious about having an 18th birthday where the only guest was a 10 year old severely autistic kid because it 'didn't fit how birthdays are supposed to be' but I did it anyway. And I had great fun, even though my guest spent all his time watching fans and didn't eat any birthday cake. Even though I was focused more on his enjoyment than my own. I had fun doing interactive fan-stimming, playing tin whistle to him and chatting with his mother. If, instead, I'd tried to have a 'standard' 18th birthday, I'd have had to invite strangers or distant acquaintances, because I don't have any friends my own age. I'd have had my birthday invaded by NTs who'd expect me to fit in. I'd have ended up on the sidelines, watching everyone else have fun and waiting desperately for it all to be over. And that's a best-case scenario.
What about if I just didn't invite anyone, because I don't have any 'standard' friends? Well, I did that for several years, and I found that birthdays didn't feel very special - almost like just another day, except I got a nice treat and some new things. It was nice, but I wanted more. I wanted a memorable, special occasion for a birthday party. And I got one, but it was not a standard 18th birthday.
In general, this is just another application of a general thing - you should change how you do things to fully include your disabled child, rather than trying to force-fit them into the standard. The same principle applies to teaching, playing, discipline and numerous other things. Why must they do it the standard way? They aren't standard people, and that's just fine. Put them in the round hole, not one of the square ones.
[Edit: Unfortunately, I didn't notice that the Blog Carnival #20 is already over! Oops!]
A sibling of a boy with lissencephaly, a brain anomaly causing very severe cognitive disability, cerebral palsy and seizures, said the following about his brother:
"Tomorrow is my brothers birthday. He will be 7-years-old. We bought a caramel cake, but he won't be able to eat it. He will have 7 blue candles on his cake, but he won't be able to blow them out or make a wish. He will have birthday presents wrapped up in wrapping paper, but he won't be able to unwrap them."
This is a common complaint by family members of developmentally disabled people, it seems. I've heard plenty of parents complaining that their child doesn't understand or enjoy a holiday or doesn't do it 'right'. This is viewed as a sad thing and a source of frustration. Very often they keep doing it the conventional way, hoping 'this time' their child wil react the 'right' way. In fact, higher functioning children may be expressely taught 'social skills' related to how to act on holidays, such as 'open all your presents and thank the gift-givers before playing with your new toys.'
But why should they do it that way? What are holidays for, anyway? Really, most of them are all for being with those you care about, getting a break from everyday stresses and having a good time. When the disabled child and/or their family is getting stressed out by the holiday, it defeats the purpose. If your child doesn't like standard birthday or Christmas presents, for example, don't buy them. Get something your kid likes, even if it is a string to twiddle with or a shiny ribbon to wave around. Why waste money getting something your kid probably won't want?
In general, if you go away from the idea of holidays and 'having to be' a certain way, you can find ways to fully include the disabled person. I was anxious about having an 18th birthday where the only guest was a 10 year old severely autistic kid because it 'didn't fit how birthdays are supposed to be' but I did it anyway. And I had great fun, even though my guest spent all his time watching fans and didn't eat any birthday cake. Even though I was focused more on his enjoyment than my own. I had fun doing interactive fan-stimming, playing tin whistle to him and chatting with his mother. If, instead, I'd tried to have a 'standard' 18th birthday, I'd have had to invite strangers or distant acquaintances, because I don't have any friends my own age. I'd have had my birthday invaded by NTs who'd expect me to fit in. I'd have ended up on the sidelines, watching everyone else have fun and waiting desperately for it all to be over. And that's a best-case scenario.
What about if I just didn't invite anyone, because I don't have any 'standard' friends? Well, I did that for several years, and I found that birthdays didn't feel very special - almost like just another day, except I got a nice treat and some new things. It was nice, but I wanted more. I wanted a memorable, special occasion for a birthday party. And I got one, but it was not a standard 18th birthday.
In general, this is just another application of a general thing - you should change how you do things to fully include your disabled child, rather than trying to force-fit them into the standard. The same principle applies to teaching, playing, discipline and numerous other things. Why must they do it the standard way? They aren't standard people, and that's just fine. Put them in the round hole, not one of the square ones.
[Edit: Unfortunately, I didn't notice that the Blog Carnival #20 is already over! Oops!]
Labels: assumptions, autism, Disability Blogs, lissencephaly, normal parents, normal siblings
posted by Ettina at 3:54 PM
5 Comments:
Ah, no problem--go over to the latest edition at Andrea's, put a link to this EXCELLENT POST in the comments, and you're part of the carnival.
I completely agree--we celebrate our way, and our own kinds of holidays. If we eat polenta and salmon on Thanksgiving, well, that's what we all LIKE to eat, so why not? We make brownies instead of cake, for birthdays and pretty much any "named" day (Mother's Day brownies, Halloween brownies, sure).
We also celebrate WHAT we want. For example, we celebrated our son's 100th month (it happens somewhere between ages 8 and 9), for example. There are no cultural expectations about HOW to celebrate a kid's 100th month, so we were completely free to make it up as our own "tradition."
Don't worry, i didn't notice it was over either ;)
I have now pretty much given up on birthdays - although i have friends, they are so scattered all over the place that it's almost impossible to bring them all together, and every time i try to have a party, it ends up a disaster, with none of the people who i really wanted to be there coming, and other people coming who i hardly know and find myself unable to speak to. After the last attempt (at which, ironically, i was the only person who *didn't* have a good time), i came to the realisation that i would much rather celebrate other people than myself...
Yes. I agree.
I think that part of the problem for some people/families is the backlog of "tradition" involved in celebrating holidays. ("We've always celebrated Christmas this way...")
Some of the problems(s) also reminds me of parents who look at their kids and say, e.g., "My 4-year-old autistic son will never get married or have a family." (You can't predict that in children, and if the son grew up and truly didn't *want* to get married or have a family, why is this a problem?).
As you said, holidays are for spending time with the people you love, breaking from everyday stress and having a good time. There are TONS of ways to do those things.
Expectations cause unhappiness so many times, in so many ways.
Thank you for so wisely pointing out that we need to always be honest and mindful about what is right and best fit for individual and situation; time and place.
I just entered this post for another blog carnival - 'doing it differently'. Not specifically disability-related, so maybe some people will read it who otherwise wouldn't think about disability issues.
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