Autism Watch: 2007

Posts Tagged ‘seizure

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.

I was standing in the checkout line of Lowe’s last night, in the throes of a migraine that was only growing worse, when the people in line behind me slapped down some things onto the counter that we were still occupying.  I looked down and saw the first item was a triple-pack of those spiral-y know, those mercury-ridden things that may save some energy but could expose you to a neurological hazard? I turned to dh, and asked him what he thought the man would do if I told him about the problems with those things? Dh looked at me thinking I was kidding, and reached for the debit card slider. Louder than necessary, if I’d just been talking to dh, I said “Don’t knock their bulbs over — might have to call HAZMAT.” Dh either really didn’t hear me, or is getting used to me, or agreed with my passive-aggressive public service announcements. Someone has to tell these people, right?

We are trying to go green, in some regards. We’ve started very internally — a safer home environment by way of stainless steel cookware (no Teflon), not heating in plastic, safer cleaning products — but those lightbulbs will never find their way in here. Not only can they be unsafe when broken, but they are also reported to contribute to seizures, and we have a daughter with seizure disorder.

It’s great that a product to save energy is now becoming more affordable and available, but people need to be aware that you can’t just throw these things in the trash. They have special requirements for disposal, and you can’t just pick up the pieces or vacuum them up when you break them. At what cost are we saving energy?

I was surprised. There you have it. The premiere of “Eli Stone” almost two weeks ago surprised me. I didn’t expect it to be good. I didn’t expect it to turn out the way it did. I moreso didn’t expect to have yet another show on Season Pass for my DVR to record weekly. (Who has time?)

So, way to go, ABC, for not bowing down to the AAP, CDC and whomever else asked you to cancel the show. Thank you for realizing that viewers have their own brains, can think for themselves, and can tell fiction from non enough to not be influenced so easily. However, <insert sarcasm here> way to go, ABC, for directing people with questions about autism to the CDC. CDC?? (I should use big font there. BIG.) As in “what were you thinking?” Center for Disease Control? So autism is a disease? If yes, why hasn’t the CDC found the cure for this disease? Oh, that’s right. Head in the sand. What was I thinking?

Disorder. Syndrome. Fine. But disease? No. So the CDC isn’t the place to refer people for information on autism. So many better places to mention. So many.

Almost two weeks ago, as I shared here already, we started our son on Risperdal. We are 11 days into it (12?) and I wish I could say I’ve seen a difference. His highs are still high, his lows are abysmal, and he’s still got a mean left uppercut…and right jab. Ask his siblings. Ask me. And his mouth? Ask anyone, I’m sure the neighbors all hear it. This morning, he cycled into this horrible sobbing period of depression that it took a while to get him out of. I succeeded, but I’m just waiting for the other shoe to fall. Or to be thrown, more accurately. With a low comes a high, and vice versa. Highs sometimes mean manic running from one end of the house to another, non-stop talking, screaming, laughing hysterically, standing and listing all the reasons he loves me…but lows mean he wants to tell me the depth of his anger, how much he hates us, how he hates himself, and how stupid he is. There are days I just hug him, because I know he doesn’t want to be this way, and other times I want to but can’t because he’s so mad that I can’t get near him. Six months ago, I’d not have been able to understand how draining this type of cycling is. I figured I’d seen the worst of his autism, that he was only going to get better with more treatment. Now all I know is that I don’t know enough, and each day brings something different.

Another update: ds’s ankles are still wobbly, and if we can get him to wear them, we have an orthotics prescription. They won’t ‘fix’ his ankles, per se, but they may make his legs hurt less when he walks a lot. Now we just have to see if we can get him to wear them. I’m not even sure insurance will pick up the cost, and last I knew, they were pushing $300. $300 for something for him to throw at someone at school? I don’t know.

On a similar note, has anyone encountered questions from the school in regards to your child’s behavior that they feel are caused by meds? If yes, I’d love to hear from you. (Hasn’t happened to me yet, but I do have a reason for asking, I promise.)

Back to work. Not much time to be on the computer outside of work hours the last couple of weeks, ds’s meltdowns have been severe and exhausting. Right now, it’s one day at a time. We go someplace if he’s doing good, and we stay home if he’s not. We split up our errands when possible so one of us is home with him, rather than taking him with us. Everything takes such planning, and while we qualify for respite, finding an agency who has an LVN available for part-time hours has been impossible. Tack on my 13 yod, who has seizure disorder and just had another 10 days ago, and every day is something different. I used to laugh at the “God never gives us more than we can handle” phrase because I don’t believe it was intended to be interpreted as it often is. In reality, God doesn’t give us more than we can handle, because we find a way to handle whatever it is. (I mean, really, what’s the option?) He will just always be there with us, throughout all of that, and with God, we can handle all things. Those without faith, I don’t know, it’s what gets me through because I know there’s a reason for all this. I know there’s a reason that we have two kids with extraordinary needs. What it is, I may never know, but I’m hanging onto the “faith faith a faith-a”…and was glad to see that reflected in “Eli Stone,” even if it came via “Everyone want a Dr. Chen” character, who just had a way of breaking it down so right.

So, way to go ABC, I’ll be watching Eli again this week … though I hope that Eli’s future visions have singers other than George Michael. 😉 

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