Autism Watch: 2007

Archive for January 2008

…what do you do?

To say the last couple of weeks have been eventful is an understatement. I just wish it was good events. Don’t get me wrong — there’s been a lot of good things that have happened, a lot of fun, but a lot is overshadowed by the difficulties we’ve faced with ds.

Bottom line, the little guy’s meltdowns are worsening. Supplements are being refused, and being casein-free hasn’t made a stitch of difference. We’ll keep on with it, but it sure isn’t encouraging that after almost a month without milk/dairy and we’re not seeing the change so many told us we’d see. We went into this knowing that we may not be one of the 46% or so that see dramatic improvement, but we did still hope. Being GF didn’t do it either. Supplements were doing it, but he’s refusing them anymore, so of course, the refusal is causing some regression. Makes sense, but I really hoped that the improvements would make taking the supplements that much easier. No such luck.

I’m still entirely behind the biomedical theories. I believe they work, just not for everyone…just like not everyone that gets a vaccine gets autism. Some people are just pre-disposed genetically to either get better, or to get autism. And maybe at some point they will again work for my son, but for that to happen, he has to take the supplements. Maybe then he wouldn’t swing at me, and maybe he wouldn’t get mad at just about everything.

Such a sweet, smart, and loving little boy. So adorable, good-looking, beautiful eyes, long hair, and funny demeanor…when he’s not blowing up because he doesn’t want to get dressed, stop playing Wii, put away a toy…

Meanwhile, therapies that may help are too costly to afford, unavailable in your area, not covered by insurance, or don’t work. Research is being done, but that will mainly help future generations of kids. What about our children today?

Don’t mind me…tiring, not so good day…a sock in the face this morning put me in a mood. Ds comes home from school in an hour, I’m hoping it’s been a better day for him. Autism program tonight, good timing. It’s almost hard to write about it, to sound negative, to share a not so cheery moment, but a day in the life of a parent of an autistic child is, well, not always so cheery. Maybe if more of us were honest and shared, the world would realize exactly how important finding a cure and funding treatment really is. And that if you’re a parent of a newly diagnosed child, you’re not alone.

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Finally, someone has the cajones to take on the vaccines vs. autism story. I don’t know that the show itself is any good, and from what I hear about the previews, it’s probably not a show I’ll watch otherwise, but the premiere episode of Eli Stone apparently takes on the issue of vaccinations causing autism.

The Associated Press does a good job of covering it here: TV Drama Perpetuates Autism Myth, though I’d have preferred a better title of the article. Newflash, writer: It isn’t a myth.

Sure, that’s just my opinion, but it’s a pretty popular opinion anymore.

I think the scariest part of the whole article is where cancellation of this episode is encouraged because people might come to the conclusion that they should educate themselves about the possibilities that the current vaccine schedule is too aggressive. In other words, people might <gasp> think for themselves.

Scary too that it’s not okay for parents to make their own decisions, no matter what inspires it. Amazing that with all the garbage allowed on TV, things that truly could cause problems by encouraging certain behaviors, this show is being questioned for this reason. (Yet the commercial for it, including the sex scene shown during daytime hours, isn’t questioned?)

This one’s probably the best article I’ve read yet as far as explaining why the latest ‘study’ on mercury and autism is misleading. Read for yourself, and you may pick up on a couple of scary factoids.

Parents Say California Autism Study is Flawed (Injuryboard.com)

For a long time now, mornings on school days have been difficult. No, you can’t play Wii! Turn off the Gameboy, it’s time to get dressed! Pause Spongebob and go brush your teeth. No, you aren’t staying home. Yes, you are going to school. No, you can’t quit school. Yes, you have to wear jeans, it’s raining. And so on. We’ve taken games out of the equation: no more electronic games before school. (“Cool, I can draw pictures?”) I have had to resort to telling ds that he will have to go to school wearing a pajama shirt or that I’ll carry his shoes if he keeps throwing them. There is no escaping school, or the attire that it requires. I had this ongoing worry that one day he would actually make me prove this. And so, yes, it finally happened.

Yesterday morning, ds had a major meltdown. MAJOR. M.A.J.O.R. (I’d turn that red if I wanted to take the time.) He didn’t want to go to school because ‘everyone tattles on me.’ First, the immediate problem was getting him to school, important items in hand if not on his being. The secondary problem was to find out if they really are tattling on him, and why. Afterall, autistic children aren’t known for their diplomacy and shining social skills.

Long story short, after I forced him to get dressed, dd carried him to the truck, and I rode in the backseat, holding the seatbelt so he couldn’t unlatch it, and holding ds so he couldn’t climb out. Thank God the school is 1/4 mile away; I’m not as similar to Elasti-Girl as I’d like to be. While I climbed out of the tiny backseat of dd’s tiny truck, dd got ds out. She carried him to the classroom, while I carried his shoes, backpack, and jacket. His wonderful classroom team of teachers didn’t blink an eye, but jumped right in to help him adjust. We stayed secluded for a little while in the backroom, and by then, he’d gotten to the crying stage of this meltdown. Dd had to leave for work, so she left me there, and a quick call to our other ds assured me a ride home. (Nice having older kids who can come to your rescue.) Little guy by this point was muttering that he couldn’t stay due to the tattling, he was quitting school, and I could never ever leave his side. Ever. His aide got his shoes on, and his teacher assured him that the imagined tattling wasn’t nearly as bad as he was portraying. (But, I still think there’s some merit to his concerns.) A few minutes later, I kept to my word that I was leaving soon, and he had to stay. I left, with him crying and his teacher and aide talking to him. Talk about heartwrenching, but if I’d caved, we’d face this battle daily.

Such is life on the autism parenting spectrum, yes? I heard someone say the other night how you can sometimes look at your child and think “nah, no autism, he’s just a kid.” (I realize not everyone can say this, so I don’t mean to be ignorant of that. My son just happens to be verbal and as such, those are the parents we often run into at therapies, classes, etc., that group by similarities in kids.) I could agree with him, as there are times I look at my son drawing pictures, or playing with his 57 Pokemon character stuffed animals, and see just a child in his own world, having a blast. Autistic? He’s fine, he’s just a kid. Then BAM, there it is again. You realize he hasn’t looked you in the eye all day, or he’s lining up his cars, he’s telling a group of irritated kids how they’re going to play tetherball with him, or he’s staring at trash cans just a little too longingly. Or as in my case, a horrible meltdown that takes hours or has your child sobbing hysterically over something so minor, he can’t really even remember what it is.

Bam.

If you’ve read this blog for a while, or my old one, you probably know that I have an issue with what ‘normal’ is. There are times where I think that those on the autism spectrum are much ‘normal’ than we are, and how I’d love to have some of my son’s kind of normal in my own character…but that’s for another day.

Anyway, today I went to pick up my son from school. I wait for a few minutes, among droves of other parents. As my son runs out, literally knocking me over backwards into someone standing behind me, he’s yelling, excited to see me. Then he sees another boy from his class, and steps up to tell him goodbye. Granted, my son is over-exuberant often. He’s a child of extremes, always has been, and it’s only continued and sometimes worsened over the years. So he grabbed this little boy’s arms exuberantly, saying “Goodbye!” and other similar phrases repeatedly. The little boy responds, smiling, but mom instantly goes on alert. My son is not only half the size of this other seven-year-old child, but he’s clearly not hurting this little boy at all. I pry ds’s hands off the boy’s wrists, tell him to tell him goodbye for the final time, we’re leaving. Apparently, that means “give a big bear hug,” because that’s what he did. Mom looks even more disturbed. The friend standing with her looks aghast (I’ve never had the opportunity to use that word until now!), mouth hanging open. Maybe in her world, boys don’t hug or this boy is made of glass. Either way, he was smiling and laughing, and mom starts to say “Okay, that’s enough.”

Stop the truck. I’m right there. My child is not hurting your child. Your child is playing along, laughing, and you see that I’m in the process of leading my child away. So you feel it’s necessary to say something? Meanwhile, even though I’ve looked up and smiled, you can’t acknowledge my presence and basically treated us as though we were some dirty homeless bums with leprosy asking for spare change. 

What is wrong with people? This woman must know by now that my son is special needs. He has an aide. He clearly has some issues that she’s seen, because she’s a hovering mom. Hover all you want…but have a little compassion. Or plain out, be nice. That’s what’s wrong in this world today — people are nowhere near as nice as they could be, and so often refuse to open their minds. Children are routinely rude to others because mom and dad let them, and often under the guise of “Well, I want MY child happy, and being nice or not trampling your child to get in line first, well, those things don’t make my child happy, so I’m tolerating his rudeness because his happiness comes first.” Way to go.

Sure, I’m being a bit judgmental here. Not everyone’s like this, and out of those who are, some have valid reasons. Others, they aren’t selfish on behalf of their kids — they’re just ignorant.

I don’t believe necessarily in announcing to the class that your child is autistic, since so  many people mentally check him off the list for a party or encourage their child to play with someone else, but I’m beginning to lean more and more towards some sort of ‘special needs talk,’ or something that addresses the fact that all children are different, some behave differently, and that we are nice to all…then send a copy home for the parents. It could mention that there is/are special needs in the class and we need to remember that before we make faces or judgments or shorten our party lists, without singling out the child/ren.

All that aside, if someone hugged my son too hard, he may not like it but I’d not let my mouth hang open. I’d not tell the other child to get off, unless he was being hurt or the child had no supervision, and even then, I’d still think twice. My son wouldn’t make a judgment or decide that child was weird. He blessedly doesn’t notice these things like ‘normal’ people do. I wish I could be more like him, not being bothered by what others say or do about us. (I’m not even brave enough to go pick him up at school without changing out of my comfy clothing and into something ‘acceptable,’ nevermind the fact I was fully-clothed and what I was wearing wasn’t bad…) So who’s normal — we ‘neurotypical’ people who make judgments of others and stare and worry and even dare to state our opinion towards another whom we don’t even know, in a negative way, or the people who disregard all that, don’t interfere with others’ lives, and are happy. I think I’d vote for the happy people.

…people are listening. More and more. Not enough yet, so if you haven’t read her latest, read it here: Age of Autism: Katie Wright on Autism Speaks’ Grants.

I don’t like to say that anyone speaks for me, but I’ve wanted to scream so many of the things she said. The contradictions in the medical field and/or government entities supposedly designed to ‘help’ our kids…there are no words, they just amaze me. All I can hope is that people will be willing to pull their head out of the sand, be willing to at least consider that it makes no sense that it’s recommended that mercury not be in mascara but it’s okay in a flu shot. Be open-minded to realize that parents of autistic children shouldn’t need to sit and do little to nothing to help their children so we try alternative things, and many of those children are recovering. I can hope people will at least be willing to say “Not for me, but more power to them.” Be willing to acknowledge that any positive change in a child is better than none, and is reason enough to try ‘extreme’ (but not really) things. Be willing to realize that doctors don’t know it all. (Remember thalidomide? Lots of deformed children before the government had to acknowledge that a ‘safe’ medication truly wasn’t.) Above all, be willing we just love our children and want the best for them, just like everyone. And maybe, just maybe, that giving small children that many vaccines, in that short period of time, is no longer safe…after all, kids of today are the guinea pigs. What looks good on paper may just not look good in the developing body/brain of a small child, or a child genetically pre-disposed (which not all kids are) to auto-immune or other dysfunctions.

So thanks to Katie Wright for speaking up and sharing her thoughts, many of which are unpopular in the medical profession because they MAKE SENSE and would require a complete directional change. In other words, those ideas will cost money and possibly put focus on things that people would rather not be in the microscope.

And, let’s be real — how many parents of autistic children here have been contacted by an autism organization so they could offer you help? I frequently get mail from AS…asking for money. Does it make sense to fund all the genetic research and other ridiculous research on the backs of those who need their money to pay for treatments and therapies for their own autistic children, because insurance companies don’t want to pay and because there are SO many autistic children anymore, that waiting lists for free/funded services are years long? I can’t support research that won’t help my child in the slightest, though I do have a hope that my grandchildren’s risk of autism is less at least.

I did attend a wonderful seminar by AS a year or so ago, with a doctor who shared extremely helpful information. It was ironic, imo, that this speaker was funded by AS but no studies are being funded in that same direction. Why not?

I’m not against research, nor am I against vaccinations. I’m against research that’s a waste of money and time, and doesn’t come close to helping those affected with the disorder now. I’m against vaccinations with enough garbage that it takes over a page to list all the ingredients, pushed so closely together that the child’s body has no time to recuperate, and that have ingredients that are considered poisonous/hazardous in any other use. When will the public begin to see that options are available — vaccines can be spaced out, safely, and without all those ingredients, but it’s a question of money. Who wouldn’t pay to ensure their child doesn’t become the 1 in 150, or the 1 boy in 94 that won’t develop autism?

No, not you. My son. Sorry, I’ve said it so often lately, it just comes out at random times now. I probably yell it in my sleep.

The last week has been a week of increased temper tantrums and meltdowns. All I have to do is say meltdown, and anyone with an autistic child understands, so enough said.

So what to do?

New autism program is working, but maybe we’re not doing enough. New supplements needed? Social skills training?

This past week, ds had testing at his karate class, to see if he could earn his yellow belt. Talk about painful. Other parents are laughing because a cute little boy was pirouetting (word?) between blocks and kicks, pulling at his upper lip and rubbing his hair and face every movement. They didn’t know they were laughing at a little boy in his own world, completely lacking focus and only listening enough to knock out the move and go back to his internal choreography. Dh blows it off, but I don’t want to hear him laughed at, even if I know they weren’t laughing to be malicious. Today, ds and I attended a birthday party for a wonderfully sweet and compassionate classmate of my son’s. Ds had a meltdown, and parents of children not as old as ds witnessed it. Sigh. So hard. Ds was on the floor and against the wall, in full pout-and-crossed-arms-yelling mode, and I was trying to calm him in front of 20+ other people. Thank God, birthday boy’s mom is one of the rare few who doesn’t judge; she helped me out but an understanding mom, not a lot of sleep and another social event where he stands out, in a negative manner, made me tear-y. So now you have Meltdown Boy and Emotional Mom.

Ever have one of those days?

We also went to Disneyland again on Wednesday evening, for dd’s birthday. The big 13. California Adventure closes early during the week right now, so we visited there first to ride Tower of Terror. Ds loves it. (And our occupational therapist encouraged this type of ride, if he likes it.) A quick visit to Guest Services, dd had her happy birthday pin, and ds had his special guest assistance pass. We headed to Disneyland after the ride, and went on a number of rides in a short period of time. Lines were short, but given ds’s mood, we still used our pass because I’m not sure he could have done even the shorter lines. We used his stroller (a larger-sized jogging stroller), worth its weight (and cost) in gold.

We made ds’s orthopedist appointment. It’s several weeks from now, but we know the ortho. She dx’d ds (pre-autism dx) with pronated ankles and flat-feet. His orthotics didn’t work, and years later, he’s still got the leg pain and muscle weakness. We’ll see if the ortho can help us figure out why, and what to do.

And on a good note? Ds got his yellow belt! He passed! All in all, very busy week for a little guy that’s easily overstimulated. And I wonder why he’s having such anger issues.


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