Monday, January 9, 2012

A Donkey Between Two Buns

So ten months and three counselors later, we have finally found someone who agrees with us that our oldest child, Hunter, might in fact be dealing with some neurological differences. This counselor doesn't believe that he is depressed or simply displaying a "difficult temperament". Instead, he said he'd readily give the label of PDD (Pervasive Developmental Disorder) and that as time goes by, we'd look into a diagnosis of Asperger Syndrome. I hesitated to share this information here on this blog at first. Especially since I've tried explaining it to Hunter and he doesn't seem to even want to listen much less understand it. I'll continue to fill him in and keep him in the loop (meanwhile, putting books on hold at the library, consulting the mothers of other Aspie children, and researching the syndrome like crazy on the internet). I decided to go ahead and share this new journey with my readers, however, because I didn't see how it was any different than sharing our leukemia journey. Is Asperger's the same thing as cancer? No. But is it something that should carry a stigma any more than cancer? No. Did Hunter even fully understand what leukemia meant when he had that? No way man. In fact, he never once asked questions and has never shown the least bit of interest in his disease. Despite Hunter's lack of interest in his own story, however, my sharing our journey has been especially helpful to a number of people. Hunter has inspired, touched, and blessed thousands of individuals with his fight against leukemia. And I suspect that his resolve while dealing with Asperger's (a syndrome that he'll have for the rest of his life... his sister can't fix this one for him!) will inspire other Aspies, friends of Aspies, and parents of Aspies. So, I'll be blogging some about our new diagnosis. It's not really a new journey as the "symptoms" of aspergers that Hunter displays aren't new. He's had them his entire life. It's just that I was blown off when I asked for help in the past. And then the very week that I finally made an appointment for Hunter to see a local DAN doctor, he was diagnosed with leukemia. So that kinda took a back burner to more pressing issues. But now he's off of all of his meds, he's taking a high quality fish oil, a high quality multi vitamin, he's eating well, and it's time to get our hands dirty finding this kid some help (which mostly means Occupational Therapy... and training for his parents)! I'm actually quite excited about the progress we've made. Hope. Help. Answers. Validation. It's all REALLY good stuff to me right now.

I have asked Hunter if he'd like to talk more about this thing called Asperger's and his answer was that he knew it just meant a donkey between two buns. He wasn't interested in THAT. And maybe that's okay for now. After all, it's not really his problem right now is it?

Some of you who have met Hunter and who have known Hunter for a long time may be finding it hard to imagine that he's autistic. Just keep in mind that it's a spectrum disorder and that means it looks different for everyone affected by it. Some days Hunter's behavior is like that of someone who would be considered to be "neurotypical" but on other days, it's clear that he's struggling. A lot. The important thing here isn't the label. It's to find him (us) some help so that he doesn't struggle so much. If we didn't think the quality of his life was deeply affected, we'd not be seeking out such a diagnosis. But from what I've come to understand, a diagnosis can lead to help. And help is all we want.

He's been through so much. He deserves to have a high quality life that he enjoys.

I look forward to sharing more of our journey into this world of autism with you. I hope that our story will inspire you, educate you, and help you appreciate your situation, no matter what it might be.

Update: Hunter has undergone a series of psych evaluations and the person who did these assessments does not believe that a diagnosis of Asperger's is appropriate at this time. His diagnosis is depressive disorder. So we are still dealing with the exact same issues, just looking at a different diagnosis. Somehow it feels harder to share this journey... depression has such a stigma attached to it. If you would like to talk about this matter privately feel free to email me at shebrakes4rainbows@gmail.com.



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3 comments:

  1. Cade could care less about his Aspergers. He's called it the hamburger ass syndrome before;)
    Its hard for other people to get it sometimes because he is so smart. And can be very sweet. But he is very factual, unsociable, irritable, and extremely literal. He plays better with other Aspie kids.
    Thanks for sharing about Hunter!!

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  2. I'm 99% sure that if my dad had been a child of the 00's he'd have a diagnosis. All the behavior stuff that drove my parents apart, make it hard for him to make friends, turn him into a sort of antisocial workaholic all point towards A.S.. It was hard having a father who didn't connect with other people (in the schools some teachers were even mean to me because they despised my dad so much) but he's been quite successful, even earning 6 digits in his last job. I'm *really* thankful you got a diagnosis now instead of years from now. I read something last night about autism and leukemia possibly being linked to a repression of some sort of hormone... if I find that article again I'll pass it along.

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  3. My young second cousin was diagnosed as "being on the spectrum" years ago. His father did not allow his mother to tell anyone--for years and years now no one has known and it's been devastating for the family (because of all the negative attention received and no real explanation).

    Now my cousin and her husband are divorcing, she's told the family her son has been living with Aspergers for years and finally, they're able to get the help he needs (he's 13!)

    Great Job, Mandy...for sharing Hunter's story. You'll help a lot of people. :)

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