Posts Tagged ‘parenting’

My complicated thoughts about the Angels Pageant

January 31, 2013

a close-up of a plastic crown

image courtesy of Allison Ko via Flickr

People keep asking me if Chloe is going to be in the Angels Pageant. And I want to say “do I LOOK like someone who enters her kid in a beauty pageant?” But I do look like someone who enters her kid in this pageant, because it’s not a beauty pageant exactly, it’s a pageant for disabled kids. They get dressed up in fancy pageant gear and get their pictures taken with crowns on. The website is full of grinning girls in wheelchairs. And, since this is a feel-good, “exciting and super-fun experience,” I assume everyone is a winner.

And when you have a disabled kid, you do stuff like that. There are so few activities out there that are guaranteed to be fun for disabled kids, you leap at every chance to give your kid something exciting to do. But I have complicated feelings about this one, and here they are:

  1. This is great. The kids love it, the parents love it. The kids get to feel pampered and recognized by people other than their parents, which for many of them probably doesn’t happen very often.
  2. So why do I feel so repulsed?
  3. When I see “beauty pageant” and “kids” together, all I can think of is Honey Boo Boo.
  4. At the Angels Pageant, they believe every child is a gift from God. Okay, fine, but is this religious? Am I expected to be religious for this?
  5. The pageant is open to “any boy or girl newborn to 105, with a special need,” and the website constantly refers to children.  So apparently, if you have a disability, you are a perpetual child.
  6. It’s “not about ability.” It’s about celebrating our kids just for existing. That’s not enough for me. My kid has abilities. Every kid, no matter how disabled, has something to offer the world, and these things are rarely celebrated. Other kids are recognized for what they can do, why not kids with disabilities?
  7. I’ll admit, number 6 is probably a politically correct attempt to say it’s not about disability. In other words, it’s a break from the constant obsession with large challenges and tiny achievements that make up our kids’ lives. And that’s great. But it IS about disability. Because it’s for disabled kids. It’s not a typical beauty pageant. It’s a disability pageant. Just admit it.
  8. I’m not against this in general; it’s probably the greatest thing ever for some kids. But I don’t think we’ll be doing this. Chloe already goes to drama camp, where her awesome teacher finds ways to make her a star right alongside the typical kids. If we want to get her dressed up in taffeta for pictures, I’ll take her to my friend’s photography studio. Extra attention from adults outside her family? She already gets too much of that, because she’s a charmer. Before I had Chloe, my plans for parenthood never, ever included a beauty pageant. And I’ll be damned if I let a diagnosis change that.

How to be on time when you have a special needs kid (or probably any kid, really)

January 30, 2011

  1. figure out the latest acceptable time to get somewhere
  2. think backwards through all the steps it will take to get ready to go and estimate the time it will take, adding 10 minutes to each step, just in case.
  3. if a wheelchair is involved, don’t forget time to load and unload (20 minutes).
  4. add half an hour to the total.
  5. come up with a simple, all purpose excuse, because when you show up late in spite of all this, your real excuse will probably be a little TMI.  no one wants to hear, “well, we were about to go, but then someone had a big potty accident and then while I was cleaning that up I saw something that looked like a seizure but I don’t think it was but the mere possibility made me sit on the couch and weep for 15 minutes and then I had to wait for my eyes to get less red and puffy before we could go and by that time it was time for another tube feeding.”
  6. consider staying home.

Raising kids with disabilities

January 22, 2011

A while ago, a friend told me that when she had her son, a few people questioned her ability to care for him.  I was astonished.  My friend, who is a single mom, is one of the most devoted and capable parents I know, and it’s hard to believe that anyone who knew her would imagine she could be anything less than a great mom.

So what’s the problem?  My friend uses crutches and sometimes a wheelchair to get around.  This hasn’t held her back in any other area of her life, but for some reason, people thought it would keep her from being a good parent.

It seems a little funny to me that this attitude surprised me.  But I guess it’s because I see parents with disabilities as kind of mirror images of myself. Many of the issues we face are similar. Grocery shopping, for example, is not easy with a kid and a wheelchair–it doesn’t matter who’s pushing and who’s riding. Parenting is hard, and when someone involved has a disability, it’s very hard in one specific way. So why do I get automatic “super parent” status while my friend has to prove herself over and over again?

I know several parents who also happen to have physical disabilities, and I have learned a lot from them. I’ve learned that my daughter’s disability doesn’t have to hold her back from attending college, getting married, or having kids and grandkids. Adults who have “been there” are wonderful resources for parents trying to do the right thing for their special needs kids.

Not only that, but children who grow up riding on their parent’s wheelchairs learn important things about acceptance and perseverance. I had to wait until my twenties, when Chloe came along, to learn these things, but my friends’ kids were able to start at birth.

One of the best play dates Chloe and I ever had was at the house of another friend of mine, a woman who has cerebral palsy and is an advocate for people with disabilities. Unlike most kids, her two boys boys were immediately comfortable around Chloe.  They brought us different toys and tried different games until they found things she liked, and then proceeded to entertain her for an hour and a half. These kids have met many people with different disabilities, and they have grown up knowing–really knowing–that there are all kinds of ways to be human, a rare and valuable gift that only a mother with a disability could give.

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