Autism Watch: 2007

Archive for January 2009

Before I had my fourth child, I have to admit that I laughed when I heard people setting up playdates. Play date? Play what? Really?

To me, playing with other kids was a normal childhood activity, something that happened without schedule, without planning, forethought or real effort. With child number 1, 2, and 3, I didn’t have to arrange any play. Not only did they have older siblings they could easily play with, but we had neighbors and other friends with kids the same age. Then, my fourth child (finally) came along. In ways we didn’t imagine, things changed.

Child number four, my precious Barnacle Boy, had issues getting along with other kids from day one. He actually did love his siblings and show interest in certain activities, but from the minute he could talk, he expressed his dislike and anger towards one sibling, then another. It was this adamant, negative emotion that finally pushed me over the edge into making ‘the’ appointment, you know the one, the appointment where you tell your doctor that something’s wrong and you’re not leaving until you have an answer.

Fast forward several years, my son is the one with zero birthday party invitations from any of his classmates, and it’s January. He’s gone to two parties in the last six months; one was his, and another was the birthday of a friend from first grade, a really fun, compassionate boy with an equally fun, compassionate mother. He’s got 20 other kids in his class at school, and a pretty good sized group of similarly-aged boys/girls in our church family, and gotten one invitation since September.

Anyway, my son wants to be social. He wants kids to come over and wants to, at times, be invited to their house. When your neighbors don’t invite your child over (from reasons ranging from not enough neighbors to not wanting to deal with him), there’s no close family of similar ages within an hour’s drive, and maybe it’s just okay to ignore the ‘different’ kid, I’ve become a playdate setter-upper. Really.

Today, he invited a friend over from church, and he came. We had 2.5 hours of listening to them giggle, laugh, and go back and forth about whatever they wanted, or didn’t want, to do. He got along perfectly with this boy, and the boy seemed to have a good time as well. When it came time to end their time together, as we know our son’s limits and on a Sunday afternoon, we know how soon he’ll become overwhelmed, neither wanted to part ways, but ending a playdate on a successful note is way better than ending it because my son’s locked himself in a closet or because they are just tried of co-existing, which happens with 8-year-olds, and is normal, but some parents don’t get that.

After laughing at the word playdate, in my pre-autism days, I can honestly say I ‘get it’ now. Playdates are necessary. Much like many people won’t ‘get’ autism and its behaviors until they experience it in their own family, I didn’t get playdates. Now I do. Dare I hope the same for others and autism?

A couple of days ago, I heard about an opportunity to get tickets, courtesy of Autism Speaks, for tonight’s Anaheim Ducks game. I immediately emailed, and quickly heard back from the AS representative in charge. Ds and my husband were on the list. Score!

See, this is a big deal. This is ds’s first hockey game. First major sporting event. A father-son opportunity at an event for autism awareness, and even better? It fell on the night that my youngest dd is having a slumber party for her 14th birthday. I’ve currently got eleven 13-14 year old girls in my family room, listening to music. Loudly. Dancing. Eating odd food. Noisily and messily. Not having ds here to have to deal with it, or to deal with being put aside by a group of girls talking about boys is awesome. AWESOME.

When ds and dh arrived at the Mighty Ducks home, they went to the TACA booth and were thrilled, dh has heard about various TACA people and finally got to me them. They visited the Jack FM booth (93.1 here in SoCal) and got their picture taken. They checked out their seats, then scoped out the pizza booth. Then they called me. The conversation between ds and I goes like this:

“Mom, this is awesome here. We got here. It’s big. We saw the…Ta…what was it, Dad? Oh, yeah, TACA place and Jack FM and we got our pictures taken. Now we’re getting pizza. I can’t think of anything else to say, so now I’m giving the phone back to Dad.”

He was so excited! Sounds like they’re having a blast. I don’t expect them home for a couple of hours (it’s about a 45-50 minute drive from the stadium to our house) but I don’t expect it to be any quieter here, so he may be sleeping on the floor of our room tonight, wrapped in numerous blankets because despite the hurricane-force winds that last days on end now, 70mph gusts and onwards, argh, it gets cold at night. That’s okay with me, he’s got a birthday party first thing in the morning, another yay!

So, to Autism Speaks: thank you. Mighty Ducks: thank you. Giving our family this opportunity is much appreciated. From making obtaining the tickets so easy to great seats that were easily received at Will Call, thank you. And TACA, thank you, so glad my husband got to meet you (Lisa in particular) and see your organization in business firsthand. I can’t wait to hear the details of the whole evening when they get home! (And to see the photo that Redbow took — thank you to you, too!)

We have a little game we play here. We call it “Guess the Earthquake Magnitude.” See, I’m deathly afraid of earthquakes, and I live in Southern California.

I don’t scare easily, but there’s nothing like your house shaking side to side, things falling down, and the rolling thunder sound…accompanied by every dog in the vicinity barking. We live close to a couple of fault lines, so they typically come fast and hard, no slow build. BOOM. Then you feel the slight aftershocks for sometimes hours afterwards.

When earthquakes happen during the day, dh always calls me right away. Sometimes, phone lines are down but they were unaffected in this quake, and dh was home so he only needed to run to where I was standing in my master bath, arranging a phone cosmetic containers that suddenly starting shaking on end. Nice. Great. A quake. Then BOOM. 5.0, about 10 miles from here. Yep, our lovely fault lines are still in business.

Anyway, onto my point. My little guy usually isn’t too affected. But, I don’t usually yell like I did this time. Before I could catch myself, I was AHHHHHHHH. Smart move, Mom. Barnacle Boy is saying he’s afraid of going to sleep in his room because we might have an earthquake. He wanted to know all the mechanics of how earthquakes happen, and he’s so full of questions, you can hardly respond because he’s five steps ahead of you. Out come the laptop (which, btw, we had no net access for a while due to the quake) and when I could, I found us earthquake animations. Now he is fascinated, and playing Magic School Bus Earthquakes on his computer. Phew. A little knowledge IS power.

Never understimate these special kids!

Over the past few days, since a prominent actor’s son died, presumably from a seizure, I’ve seen the story everywhere. I see it on the numerous autism/seizure lists I belong to. I see it on the news, on talk shows, in emails, and on message boards, blogs, newspapers, you name it. In all of them, there’s a pervasive sense of sympathy, but overwhelmingly a sense of blame. It shouldn’t, but it shocks me.

The media frequently sensationalizes what they call ‘news.’ “The public has a right to know,” and all that. First, I’m not sure the public has a right to know, and second, if I want to know something, I want to know the truth. And this story, I’m not sure that we’ll ever know that, nor if we really need to.

I’ve seen a lot of people talk about this family as though they have an inside line, as though they’re best buddies and have real proof, when it turns out, the closest I’ve heard anyone, outside of the media, say is “I met a brother…” Big deal. Unless people were in this home, they haven’t a clue. There, I said it.

We need to remember that first and foremost, this is a family dealing with the unfathomable pain of loss of a young, beautiful child. In the end, does anything else really matter? We can’t bring him back, and we can’t change the circumstances that caused the death. We can only hug our child a little longer, and if anything, learn something from it, if there’s anything to be learned.

Instead, I see a lot of people placing blame. There, I used the word again. Sure, there are some things I blame — I blame vaccines for contributing to my son’s autism (not causing, but contributing: please notate the difference). I blame the wind for knocking over my plant out back. And I blame myself for spilling nail polish remover on a perfectly good dining room table. But these are my things to blame. They are things in my household. My children. For us to blame this family for harming their child, or not doing enough — it blows me away.

We parents of autistic children are usually the first people outraged when someone judges us for our parenting, for what we do or don’t do to our children, for trying or not trying biomedical. We are judged for not spanking a child having a tantrum or for daring to take this child in public. We are judged for expecting kids to be nice to our kids, or for letting our child wear a sherpa cap with orange gloves and a black/red cape with flame-colored pants..oh wait, that’s just me. Anyway, we don’t like to be judged. So why are we judging this family now?

And more importantly (I guess there’s a lot I feel is important in all this) — why are we feeling so superior that we can blame them for not acknowledging that their child may have had autism? WHY is this necessary? Why are we holding this family responsible for not contributing to the autism cause by announcing that he had it? (And we don’t even know for sure that he did.) Why are they responsible for sharing a private thing? Do we tell everyone we meet? Heck no, it’s no one’s business. It’s not a matter of shame that stops me, it’s a matter of the fact that I don’t find it necessary to tell everyone about my son’s health anymore than what I had for breakfast or when I had my last exam.

I could go on and on about this. The more I read, the more indignant it makes me. And there’s absolutely nothing I can do about it. But, I still can’t help but feeling these people are being put through the wringer at a time where they can least afford it.

In case I didn’t  make it clear:

1) It’s not the family’s responsibility or requirement to publicly state their child’s health issues.

2) It’s not the family’s responsibility to create enlightenment or awareness towards any health issues.

3) It’s not the family’s responsibility to answer our questions about the circumstances, or what treatments they did or didn’t do.

There. Phew. Oh, and it’s not their responsibility to defend their religious views, if scientology can be referred to as a religion. Seems to me, most people whine when you dare to mention your religion,  if they aren’t fellow believers. Can’t please people, can we? “Mention your religion, but only when it suits me. And it’s up to you to know when that is.”

I digress.

Leave the family alone. Let them bury their son in whatever peace they can find. Let’s take responsibility for our own children, and if we want public awareness, let’s not rely on celebs to do it for us. Sure, celebs get a lot more attention, but that doesn’t preclude us from trying. And if we don’t do it, are we responsible to others with autism or seizure disorder or anything else? Heck no, we’re responsible only to our family and our children. Just like “that” family.

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