Autism Watch: 2007

Archive for March 2008

April is Autism Awareness month. I keep looking around to see what major entities are going to do — you know, how they have pink appliances, pink pens, pink ribbons, pink makeup, everything pink for breast cancer awareness and blue bracelets for cancer, etc. — but so far, the only place I’ve seen so much as a slew of puzzle piece pins is in the Nascar community. We’re at 1-in-150 children with some form of autism, and that’s all I can find? (And way to go, Nascar, for doing this. I would love to see the money go to NAA or TACA, rather than Autismspeaks, but at this point I am at least glad to see the awareness there, period, as they do a great job of discussing autism and giving back to the community.)

I heard Barnes & Noble was doing some reading or related events to help with awareness, but when I last looked at the participating branches here in California, I was sad to see only a couple listed, and nothing local. An email to B & N asking what I could do to help with one locally, or where more were, has gone unanswered for over two weeks now. I see CNN has some autism-related content on Wednesday, April 2. I can’t really find much being done for month-long exposure, though there are some one-time events scattered around. I sure hope I’m missing the big entity events somewhere, and in case I am, I’d love to get some comments directing me on where they are so I can promote them.

On a related note, what are you doing for autism awareness this month? I created some new cards to hand out to people in public: green for mild autism awareness, yellow for “hmmm, you could do with a little autism education” and red for “whoa, hold on, you did NOT just say that to/about me or my child.” I’ve been sharing more and more online links/articles with people. Not sure what else yet, as awareness has become a part of my everyday life, so it’s hard to think of new things that go above and beyond. Guess it’s time to ramp it up a bit….along with this blog entry, a pretty mundane one but considering I’m coughing up a lung as I type, I’m just glad that I can backspace enough to fix my typos.

Have a good autism awareness month — I’m anxious to see what others are doing.

Did you just hear that high-pitched scream? The kind that makes you wish you were only hearing nails on a chalkboard? The kind that makes dogs howl and cower under a bed? The kind that you think “wow, my kid’s tantrums don’t look so bad now.” That’s what just occurred here. We haven’t seen them this bad in a few weeks, and I didn’t miss them. Nope, not a bit. In fact, for a second, I was thinking “how did I ever deal with this all day every day?” Then he sat up with monstrous strength unknown to small children, and I remembered that this is why we decided to put him on medication. I couldn’t deal with it all day, every day, and neither could he.

I don’t know what is wrong that caused this. Well, I do know what caused his anger, but for it to get to that level? Who knows. On a ‘normal’ day anymore, finding his Gameboy case on a shelf other than where he put it would cause some annoyance and yelling, but not the “Curse you, Bubba, curse you!” that it caused today. This week, he’s out of school, had some Easter candy (though none since Tuesday) and there’s been a few dietary infractions…but this seems extreme for that. Then again, who knows. Maybe the dyes are still in his system from the Easter candy he ate on Saturday/Sunday. Yep, who am I kidding, I helped bring this on.

Right now, he’s calm…after he exploded, the extreme sadness and sobbing kicked in. The heartwrenching, saddening sobs that make you wish for anything that could stop your little one from feeling that sad. That out of control. That much hate. (And hate it was, based on what he was yelling.) There’s gotta be more that can be done, but we’ve tried behavioral therapy…a lot of it. At one point, we were told that without medication, he may never truly get a grip on it. Now that scares me, though I have hope.

During Autism Awareness month, I truly hope not just the non-verbal, handflapping children are in the spotlight. Not that they shouldn’t be, don’t get me wrong, but people need to see ALL types of autism. They need to see the aggression of little kids with strength of someone twice their size, hear the venom coming out of their mouths, and hear a list of what little is available to help. We can’t let the public think that there’s two kinds of autism: non-verbal, and Asperger’s. They need to realize that there’s a spectrum, and this population of kids like mine exist, in big numbers. They aren’t spoiled. They aren’t products of bad parenting. They aren’t lacking self-control..well, they are, but not of their own or anyone’s choosing.

So now he sits eating a milk-free brownie. My older ds is astounded by his brother’s complete and utter lack of an attention span anymore, and I am in a way, too. He’s never had a long one, but this week, he’s bounced from watching Wonder Pets, spreading Pokemon all over my bedroom, spreading stuffed animals (his friends) all over his room, starting to make a book, playing a round of Guitar Hero, and back to Wonder Pets…all in about 8.4 minutes. How is he not exhausted, but everyone in his wake is?

Life with autism is unpredictable. As the saying goes, “If you’ve seen one person with autism, you’ve seen one person with autism.” They’re all so different. Yet, ironically, they’re each predictable in their ‘issues,’ if you will. I know my son will get up and want his pancakes heated on a plate, stacked, then cut in two directions, then slathered in syrup. He wants his ‘coffee’ (chocolate almond milk) in his white cup with the blue lid, and placed at his chair. From there, on a non-school day, all bets are off, but I know it’ll be a whirlwind of activities, many odd, in a short period of time. I know if we talk quietly so as not to interrupt him, he’ll accuse us of talking about him. I know that if a show he’s Tivo’d is deleted, he’ll scream and yell that he’s going to beat up the stupidhead that did it. I know that when his sister gets a phonecall and he doesn’t, he’ll flip out that he has no friends, and we’ll have to limit his talking about no friends to three minutes, or we could fall asleep to that same discussion ten hours later and he’d barely notice, only to have to start the conversation over, verbatim, if our snoring disrupts. And I know that when he falls asleep at night, finally, and only after his clonidine helps, I’ll cuddle him and hug him and tell him he’s the sweetest boy in the world.

Julie’s Health Club: Where Alternative and Mainstream Health Meet  (Chicago Tribune)  Great recovery stories, or just encouragement and information about biomedical treatment.

 Autism: The Musical (NYTimes)   A must-see! (And a must-read.)

Arizona OKs Insurance Mandate for Autism Coverage  ( Why can’t every state head in this direction? Oh, yeah, right, costs money!

Workshops to inform police and safety officers about autism risk management ( Now if only every county/state required this of their first responders.

Sometimes, even for those of us with the best of intentions, life just gets away from us. We look at our “To Do” list and pat ourselves on the back that we got everything done. We feel relieved we got through something, some other fun but stressful event is over with, and start planning the next. (And obviously, a blog update hasn’t been on my list for a couple of weeks.) But then it hits you — while you’re stuck in the minutiae, life is passing you by. The little things…the fun unplanned moments…the smiles, the laughs, the roses you need to stop and smell, they’re all either going unnoticed or they’re getting the cursory, obligatory glance while you head onto the next item on your list. Before you know it, weeks are gone by, and you have a long account of things you’ve achieved, but what about life?

I dread moments of deep thought and realization like this. I’m not a ‘deep’ person. I don’t like drama, no matter how easily it seems to find a family with numerous kids, especially those with special needs. I am not one to pontificate on life and philosophize on what something really means. I believe in God, and that’s where I put my ‘deep’ faith. Beyond that, I can appreciate a good poem or symbolic piece of art, but I myself don’t create them, so when reality hits me in the face, I need to recognize it and give it the acknowledgement its due, slowing down on my list writing at least for a while.

Over the last couple of weeks, we’ve seen improvements in ds. He has these moments of clarity that are getting more frequent, where he can calm his anger down somewhat on his own, even in small measures. We can talk to him, reason with him, if you will, before he gets to the point of hurting himself or someone else. He will still get mad, sometimes extremely mad, but we can see glimpses of what we think he’d be like if unaffected by autism.

When researching on treatment with medication, one thing that kept standing out was the likelihood that we’d see other signs that were always there but masked by his anger. I wasn’t sure what to think of that in the beginning, because autism symptoms/signs have always been there, but as time goes on, I think I’m understanding now. Routines, anxiety, irrational fears, and his particular specific need for sameness, control, and advance knowledge of what’s going to happen definitely stand out more than they did. Cut the pancakes this direction, but no syrup until after they’re all cut — and keep that fork out of the way until the syrup’s poured, too. Don’t let the kids in the room whisper when he’s there, they could be talking about him! His particular type of conversation, and the need to control it, starting over when interrupted…in a word, wow. Yet, it’s a good thing. We know now what we need to work on, and it’s no longer hidden by so much mad that we can’t see where to start. We can focus more on the things that are causing him problems, particularly in school, and address them with less tantrums to interfere.

This week, he’s off school for spring break. The Easter bunny brought him candy, and he’s been eating it. A lot. We also had three other gatherings over the holiday weekend that have contributed to him having a lot of dietary infractions, and he’s literally bouncing off walls. We’re focusing now on getting that back under control, and we know when he’s in control, he’s happier. Yesterday, when he’d need redirection towards better behavior, he’d literally repeat back to us, dh in particular “the same things you always say to me when I have an attitude, so I already know what you’re going to say, so don’t say it again,” all the while making the “wah wah wah” signs with his hands. There was more than one moment where we needed to turn away or completely get out of the room so he wouldn’t see us smile. Sure, he’s being sarcastic and he’s making light of discipline, but he’s being sarcastic! He’s getting sarcasm! He’s showing us he hears us, even when he’s mad. How much can I really complain about that?

The Easter bunny also brought the kids Guitar Hero for the Wii, hence the name of this blog entry. Ds wasn’t as excited as we thought, possibly distracted by the Captain Underpants book he’s been coveting, or the two new Pokemon characters he’d found in his basket. (And the Pokemon shirt? Initial scream of excitement, then it was tossed aside….) Turns out the Guitar Hero intimidates him. He didn’t think he could do it. We persevered, he persevered, and he can now get further through a song before he’s boo’d off the stage. That’s a big deal for him, to continue to try through the frustration…though I think he’s fascinated by the whammy bar and plays only so he can use it. Either way, he’s my little guitar hero. A year ago, that guitar would have been thrown across the room, no matter how heavy. Now, he tries and tries, and when he can’t do it anymore, politely tells us “no, thanks, I want to go do something else.” Major strides, and small blessings. These are the things I need to slow down and enjoy instead of grabbing my pen and adding one more thing to the To Do list. 

It’s amazing to me today that the vast numbers of children who are not the same after the vaccines are simply ignored by the CDC and doctors who say there is no credible reason proof that vaccines contribute to autism. WHAT IN THE WORLD IS IT GOING TO TAKE??

I watched Dr. Jerry Kartzinel on TV this morning — I wish I could have a transcript of his explanation about vaccines and just repeat it to anyone who refuses to at least look at stats and educate themselves on the real ingredients in vaccines, or to at least be on board with understanding why other parents want vaccines redone. His words explain it like no other, and makes sense. It makes SENSE.

 We parents know our children. We can tell when they’re one way on one day, and then an entirely different child from a vaccine (or vaccines) and beyond. How is that not proof that there is something going on? Why are we not credible enough to believe? If it was just a few of us, that’d be one thing, but we’re talking thousands upon thousands upon thousands. Numbers like that can’t be ignored…yet we are.

One child out of 150 children — 1 out of 94 boys — is on the autism spectrum. Something is causing that. There’s no such thing as a genetic epidemic, and these are kids that for the most part, were developing normally (maybe with some eccentricities) until a certain age. With these numbers, it IS an epidemic. If these kids were dying, something would be done. The public outcry would be horrible. But because they’re simply dealing with communication, behavioral, sensory and social issues, it’s not worth it. (I say that with much, much sarcasm.)

I don’t need something else to get upset about. It’s been a rough day already — but how can I not? What’s it going to take? How can these doctors stand up there on tv or say anywhere publicly that vaccines are safe, all kids should get them all, and we need to do them to prevent mass illnesses..that’s saying that my son, and any other child out there with autism, is an acceptable casualty. Who is willing for their child to be the acceptable casualty?

I’m not, and I will join the thousands upon thousands upon thousands of other parents who know that our children being fine before a vaccine, but never the same after, is not okay. It’s not a coincidence. Stats this high aren’t coincidence. It’s not paranoia. It’s not trying to blame something. It’s fact — toxins are not good for our children, and there are toxins in vaccines. Fact is also that vaccines can be made safely, and given on a better schedule. Why wouldn’t everyone be okay with that? Oh, yeah, money. It’s all about the dollar…and we’ll just leave us parents to foot the bill for their vaccine-damaged children.

I almost can’t watch the news on it anymore. Few newscasts are unbiased, and there’s always one doctor who has to refute it….yet there is no definitive proof that it doesn’t contribute to autism either. You don’t hear that on the news, do you?

Over the last couple of weeks, I’ve gotten really caught up in the news of the day re: autism. I’ve spent too much time reading about the court case and which politician is going to do something for the cause of autism. Not that it’s not good reading, but I have to remind myself, it’s not the big picture. Technically, for the world at large, it is the big picture. But for parents of autistic kids, the big picture is daily life with our child; it’s keeping our child safe and happy each day. It’s attending therapy appointments, IEPs, going to the school or answering school phonecalls. It’s buying and making special food. It’s researching what supplement does what, or what new equipment we can buy to help supplement occupational therapy at home. It’s cuddling our child when he gets upset, or tending to a boo-boo without overwhelming him. It’s bathing and brushing teeth in the regular routine, getting haircuts without sending him over the edge, and paving the path for shopping trips and other unknowns. That’s the big picture.

I’ll continue to read the news, to state my opinion that vaccines contribute to autism (in a way that will eventually come to light more than now) and I’ll keep researching who to vote until election day is over with. But, I won’t let it overtake the big picture, my focus, my priority. I think sometimes we tend to get so caught up in fixing our kids, we forget to enjoy them and handle them as they are.

Turn on the news right now, and you’ll probably hear about it. CNN had a great piece about autism and the story of Hannah Poling and her family. Here’s a link to a blog about it: Paging Dr. Gupta.

Another article, this one from Georgia Girl, 9, Helps Link Vaccines to Autism Cause.

And perhaps my favorite one of the day, from Couric & Co., CBSNews: Autism: Why the Debate Rages. If you read no other article, read this one. Share it.

Yes, there’s no definitive proof saying “vaccines cause autism.” However, this latest story has got to give people pause. Me? I think children with autism are genetically pre-disposed and vaccines contribute to their autism. At this point, how much longer can it take before it’s pure common sense to re-visit the vaccine schedule to space it out longer and remove any toxins from it? And to remove thimerasol, an unnecessary preservative, from flu shots and other vaccines? (It’s already mainly out of typical childhood vaccines, but those are not the only vaccines, a common misconception.) With the amount of concern, even without proof, why can’t things be changed?

I know, a mind-boggling, head-banging trillion dollar question.

I’m not big into politics. I’ll admit that freely. I vote, and I have a lot of opinions, but discussing politics is not an interest of mine. However, in the year of a political campaign, it’s hard not to be sucked into it. I don’t yet know who I stand behind, but I do know that I want someone who has a good, solid plan to get our troops out of Iraq, that I want someone who’s going to rebound the economy without me being penalized because I’m a two-income family (silly me to want my tax dollars to benefit my own family) and that I want someone who takes the needs of children seriously. Along with taking children seriously is the whole business of autism, vaccines, thimerasol, etc. I want someone in office who actually follows-through with what he promises. (Refer back to my prior post where I mention Bush’s ‘promise’…and I use that term loosely because I guess in his eyes, promise has a different definition than the norm.) So, while I’m excited that John McCain is big into the removal of thimerasol now, I’m still somewhat skeptical, and even if he was going to be our next president, it’s far too early to get excited. Still, seeing it as a topic of discussion is intriguing.

Anyway, for the whole story, check out: Political Punch  (ABC News)

If you check out you’ll see a lot of good info on questionnaires they sent the candidates. Very enlightening information…but still a bunch of political promises.

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