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!]

The links on the side

You may notice that I now have three disability related links. Here's why I chose them, as well as some related ones:

Autistics.org has the tagline "The REAL Voice of Autism". This is in response to some curebie organization calling themselves the voice of autism when if they have any autistics speaking, they're just tokens.
They have a compilation of writing by autistics, including most of Amanda Bagg's writing. Incidentally, Amanda Baggs has a blog at http://ballastexistenz.blogspot.com, on this same website. They also have some good links, but unfortunately after a server failure they lost most of them. Some they've gotten back, however.
One thing they link to is a great page called http://www.gettingthetruthout.org, which starts out seeming like most curebie websites, describing a low functioning autistic woman, but it turns out the autistic woman is the author of the website and she describes how she wants to be viewed.

Next, there's the Lissencephaly Network. Lissencephaly is a condition where the brain is smoother than in most people. Lissen means smooth I think, and cephaly is definately brain/head. Because of a smooth brain, lissencephalic people are profoundly delayed and have various other disabilities including CP and seizures. Much more info about that at the Lissencephaly Network.
But why, out of all the websites I see about various rare disabilities, did I link to that one? Because they view lissencephalic people, part of that group so often rejected and dismissed and discriminated against, as worthwhile. For examples, in the articles section there's a section titled "you just don't get it!" which shows to me that these parents do get it. They view their kids as worthwhile. I especially like the one titled "No Trades Allowed".
Which reminds me of a book I want to read but haven't got the chance yet. This book is First Contact: Charting Inner Space, by David Hingsberger, available at Diverse City Press. In this book he talks about the value of profoundly developmentally delayed people. I first heard of it from Amanda Bagg's article The Meaning of Self-Advocacy, in which she quotes that book. My favorite line from that quote is "For those labeled "profoundly retarded," emphasize the word "profound.""

Next is Neurodiversity.com. It's a good website, but not as important to me as the other two. But now that Ooops! Wrong Planet seems to be gone, it's the one I know of with the largest link collection. It's also one that was much more important to me in earlier times, and it's where I learnt about ("pathological") demand avoidance, which has helped me understand some aspects of my behavior. Although I think my own "can't help the won't" is trauma related, I probably am neurologically similar to demand avoidance people, and certainly my outward behavior has been similar at times. Which reminds me of the PDA Contact Group, which is not much different from most little parent-run support groups for rare or newly described syndromes. But which I'm eventually planning to post on their forum about my own "can't help the won't". And by the way, "can't help the won't" is a phrase applied to demand avoidance, that it's not that they can't do it, nor that they are simply defiant, but that they can't help refusing to do it. I'm like that some of the time, and it seems to be related to feeling triggered. My current theory about it is that I was pressured into cooperating while being sexually abused. Similar to deciding to hold in my feelings to prevent conflict with teachers when I entered my second school, when the abuse stopped I think I decided to never, ever give in like that again. So it ended up where if I'm amenable to a demand I'll do it, but if I'm not, I either procrastinate or refuse, if I refuse, the person demanding it pressures me, this reminds me of my abusers pressuring me, I get triggered, and at that point I am restricted by a number of emotional rules, especially not giving in, but when it gets really bad exposure anxiety type stuff comes up where I can't say clearly what is going on for me, I must hint at it. Once I was dissociated and Mom kept asking me what was going on for me and I was trying to tell her what was going on without being allowed to say "dissociated", for example. In terms of procrastination, sometimes I become willing to do it, more commonly it eventually reaches the point where I outright refuse and the process goes on from there.

Yet another tangential post. Had it not been tangential, however, it would've been much less interesting.