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The overwhelming mind games that come with autism

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Depending on who you speak to, your kiddo could have Autism, not Autism, Sensory Processing Disorder, a “leaky gut,” an inability to process external toxins, too high levels of metals in his system, unable to hear properly or allergies. These are all the things I’ve heard from the variety of professionals I’ve spoken to since Z’s diagnosis. Crazy, huh? You hear something different from every professional you meet. After all, it’s human nature to see things you’re trained to see. What’s that medical (para)phrase? ”Don’t look for the zebra?  Because it’s probably just a horse (or in autism’s case, a jackass).” Or something like that.

You hear a million different stories from parents who SWEAR by things they’ve done for their kids. You read a million different stories online about things that are GUARANTEED to work.

And you think, WTF?!?

And you want to try absolutely everything. And you want to do it now. This minute. Yesterday. Last week. Because the one thing that flashes in neon lights everywhere you turn is “The earlier, the more, the better”. So, you panic. And you take your kiddo to eleven billion screenings because someone tells you to do this test and that test. And you read and you talk and you take notes. And you drink a glass of wine. And you try to remember that the sun is still shining and the earth is still rotating and the seasons will change and that you’ll all be OK. And maybe you have one more glass of wine.

And you start OT and SLP before you truly know what it’s all about. And you feel hopeful when the OT says she doesn’t think it’s autism but rather he’s got some sensory issues. And you feel relief when the speech therapist says he’s just fine one-on-one but maybe he needs a little help in a group setting. Because, then, surely, it can’t be THAT bad, right?

And you find out your son has chronic fluid in his ears and possibly has enlarged adenoids and you think maybe not being able to hear properly and not being able to enunciate words properly is part of the problem? So you get tubes put in and adenoids taken out. And now, everything’s a little too loud for him and he has nightmares because of the lingering effects of anesthesia.

And then you watch a video and read a book that say that seizures are common in autistic kiddos. So, you and your hubby look at each other and wonder if those moments of spacing out at the dinner table could be small seizures and what if THAT’s part of the problem? So, you take your little guy to a neurologist who recommends an EEG and you keep your kiddo awake too late and wake him up too early so he’s nice a tired when you get to the office. And you watch them attach eleventybillion electrodes to his head and then go lie down in a bed with him while they run the test.

And, thankfully, the results come back normal.

And then you talk to another mom whose kiddo was diagnosed a few years ago and has done her homework and has chosen to go down the biomedical path of treatment. And you wonder if THAT’s part of the problem, that there’s something wrong with his guts. And you think, well, his grandma has celiacs disease, so maybe there’s something to this even though he’s never complained of stomach pains, never has diarrhea or constipation and only rarely throws up.

And you take the other mom’s suggestion to set up an appointment with THE expert on biomedical treatment. Even though this expert is a 3.5 hour drive away, isn’t covered by insurance and will cost close to $1k for the initial visit and labs and supplements. And even though on the phone, this expert is a witch.  But, she’s the expert.  And you want to do everything you can for your kiddo.

But, it just isn’t sitting right. So, you and your hubby decide to first go to your pediatrician and talk to her about going down this path. And your pediatrician scoffs at this “so-called” expert and calls her a snake oil salesman. And, if there’s concern about your kiddos gut sensitivities, let’s test him for allergies and Celiac disease. And didn’t the pediatrician tell you few months ago that she thought his issues were related to allergies?

So, you bring your brave little guy to the doctor’s office and have them draw blood. You lay him down on a table and give him a lollipop and put your body weight on him so he doesn’t squirm. And you talk to him while they put a needle in his arm and he stoically takes it all. And, you know that you’ll pay for this good behavior the next time you need to take him to the doctor and he’s now terrified of “red bwood coming out of my arm”. And the doctor calls you a couple weeks later to say that everything’s normal.

And you breathe a sigh of relief. Which is quickly followed by the thought ”So, what is it? Why? What do I do now?”

So you continue educating yourself. And you watch your little guy work so hard to keep it together at school only to fall apart when he gets home. And you try to keep your frustration to a minimum and fail. And you start researching new/additional therapies to help him. And you take a breath. And you start hearing what makes sense to you. That, yes, early intervention is key but there’s no such thing as a window of opportunity that you need to capitalize on before it’s gone. And, you stop listening to the headlines and you start listening to your gut.

And then life throws another curveball at you and you move half way across the country. And you wonder how that’s going to affect the progress he’s worked so hard to achieve. And what kind of fall out you’ll have to deal with. Only now you know not to believe everything you read and you think you know what will be most beneficial for him. And you read and you talk and you take notes. And you drink a glass of wine. And you try to remember that the sun is still shining and the earth is still rotating and the seasons will change and that you’ll all be OK.

And instead of that next glass of wine, you go to the gym.

After all, you’ll need to be strong and healthy to keep this battle up.

Rebecca lives in Denver where she spends her days wrangling two kids, a dog and a husband, working part time and enjoying Colorado as much as possible. She even manages to eek out some time to write in her blog, MBA Mommy, where she talks about, you guessed it, wrangling 2 kids, a dog and a husband, working part-time and enjoying Colorado as much as possible!


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  • comment avatar Lana March 29, 2012

    I think the mind games are the worst. I’m now prone to think of worst-case scenerios because for me, our diagnosis was the bottom of the barrel for me. We are still in the middle of digging ourselves out. 🙁

    • comment avatar Rebecca March 29, 2012

      Oh, Lana, I hear you. I was definitely in the worst case scenario place for a long time. Now, I try to prepare myself for the worst and hope for the best. That way, everything’s a pleasant surprise. Take care of yourself and know there is a light at the end of this tunnel. *hugs*

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