Autism: it's a trip ~ we've come a long way baby

>> Monday, July 26, 2010

“Your Aspergers is showing.”

This is what my husband says to me when I am having an anxiety melt down, or getting overly excited (not that kind of excited…sheesh…get your mind out of the gutter).

You see our oldest son Avery has Aspergers syndrome, and my husband says he gets it from me. I frankly don’t know what he is talking about; stop looking at me. If you’re not aware of what Aspergers (AS) is, and you give a rat’s fart, Google it. (And NO it is not like Rain Man)

For us AS has been a real rollercoaster ride, the kind where you just never can get off no matter how much you want to, mostly because your butt is glued to the seat. Now that my son is 12, the ride is not so scary and I want to toss my cookies a lot less, but the ups are still ups and the downs can still get you running to the local market for some beer and smokes.

Today I’m going to share our journey through this wonderful and scary world of AS, and the Hope that comes after the nightmare. So buckle up and enjoy the ride, the barf bags are located under your seat.

When you accept the hard fact that you child is not “Normal” you grieve the loss of the child you envisioned having; the one that may never learn to ride a bike or even tie his own shoes. You fear the unknown and are paralyzed by the possibility of having a "dysfunctional child”.

I remember sitting across the table form my sons second grade teacher, in one of them little chairs, ya know the ones that you just can't feel like an adult in, as she tried to tell me she thought my son had AS…then try and explain to me what AS was…poor woman. Once she said the word autism, I turned her off "there is no way my son has autism," I informed her, “he doesn’t rock in the corner flapping his hands and banging his head on the wall, are you new or just stupid." (Ok I didn’t say that last part, but I wanted to) He was our first son, to us he was fine, to us there was nothing wrong, and to us …we were lost.

At first it was 6 months of complete denial, lack of knowledge, pain and confusion. Then we could no longer fight what was staring us right in the face (or in this case what was NOT staring us in the face).

Dealing with the reality that your child is not like all the others kids, that he isn’t “normal” is overwhelming to say the least. But adding the stress of getting a diagnosis, finding the right doctors, jumping threw hoops dealing with the school system, driving to all the therapy apts, OC, PT, Speech, Social skills groups etc etc. can be downright exhausting and emotionally suffocating.

We, or more like I, (husbands seem to have a harder time dealing with this kind of stuff then moms) read every book ever written on AS and spent countless nights up to 3 am searching every web site and support message board on the internet, slowly we/I (He took longer to come around) begin to understand our sons thinking, and why he does what he does. We realized it’s not our bad parenting … (like every one said behind our backs and worse, sometimes to our faces) We started using the new tools we learned, cause everything you’ve ever known about parenting didn’t work with our kid. Then Avery started using the tools he learned…and before you know it a weight started to lift and the black clouds part.

It’s been a long crazy scary journey, and at some point my theme song had become:

Bob Marley's - I Can See Clearly Now (for the rest of this post this song should be playing in the back of your head)

Through our journey I've gained a passion, a mission, a purpose to advocate for my son. To push back at the school system that wanted to put him in the “resource room” or use a “jacket” to tie/weigh him to the chair. I’m not making this stuff up. As a parent you find out fast your on your own, no one holds your hand.

It would of been easier to just label my child as "broken" played the victim, sat back, thrown my hands up, saying “poor me” at the crappy hand life dealt me…my son has a neurological disorder and he'll always have limits and problems. Letting Avery fall through the cracks and into that box labeled "broken"

 I couldn’t put him in that box; it’s been a struggle and a fight the whole way even now. I made a choice to fight hard…But I couldn't have done it without God and his hand in my life. With lots of prayers begging "God help me, give me something... anything I can't do this by myself.” God gave me the strength and clarity...His loving hand opened doors for me; brought supportive people into my life, and showed me the way around road blocks.

God has shown me how to remove the label off of Avery…Our son may have Aspergers but it doesn't have him, man has set limits on him; God has not. I focus on the gifts and what a true blessing he is, as the song goes, "Nothing but blue skies." God has blessed me with Avery for a reason and with my love he can do great things.
"All the bad feelings have disappeared."

Today I honestly think that if we had Avery tested (again) for Aspergers, it would be a test he would fail with flying colors. “There is the rainbow I’ve been praying for.”

I'd like to think that Avery is an example of what is possible, to quote Avery when I told him what I was writing about...

“I’m an example of all that is awesomeness!"

All we need is a spark, that starts a fire of hope…when you put your fears in God’s hands and focus on the gifts they become limitless.



9 comments:

Cheryl D. July 26, 2010 at 3:15 PM  

Oh, that post made me cry! Just beautiful. And it gives me great hope. Let me know if you want me to include your blog in my list or if this post was a one-time deal.

You keep fighting the good fight. My husband thinks I'm an Aspie as well. And he's probably right! LOL

Bethany@ImperfectMom July 26, 2010 at 5:19 PM  

Beautifully written post! My nephew is about the same age, and he was also diagnosed with Asergers at some point, although his diagnosis has changed a little-it definitely is a roller coaster ride.

Gigi July 26, 2010 at 5:33 PM  

Aw. What a terrific read.

My son had a bit of an "autism scare" when he was 2. he had all of the signs of full on autism or PDD-NOS. I was desperately searching for a black and white answer to what was going on. Thanks to some real life angels who intervened, we held off on searching for a diagnosis and just sought out therapy...as it turns out, he was simply a sensory kid. Once we got him on the right sensory diet, the other autism markers just fell away month by month.

so, while I could never say I've walked in your shoes, I had a slight taste of that "mourning" you speak of and I'm happy to hear what a wonderful advocate you are for child, and how much he's obviously grown as a result of your advocacy. Kudos to you, Mom!

Grace July 26, 2010 at 6:40 PM  

My sister's son went through testing for Asperger's last week, but they're telling her he's too social and his verbal skills are too good for it to be true Asperger's. They can't figure out where to put him on the autism spectrum. I'm going to give her the link to your site.

PS -- You're right -- her husband is having a much harder time than she is.

Lynn July 26, 2010 at 7:54 PM  

Great story of your journey..it's very close to mine (including the husband having difficulty coming around). Good for you for busting ass and getting to where you are today. It's a fight that I'm still in the thick of every single minute of every single day. Our kids deserve nothing less.

Rose July 26, 2010 at 8:26 PM  

your words are from the heart and commitment to your child.Some children may not have parents that will go the mile. your son is fortunate to have you as a parent.

Bossy Betty July 26, 2010 at 9:37 PM  

Wonderful post! What a journey it's been for all of you! I love that you can write about this with such humor, insight and sincerity too. What a woman you are, honey! Avery is one lucky boy!

Marlene July 27, 2010 at 6:47 AM  

Beautifully written!!! I have a couple of friends with an Asperger's child...and a cousin with one. They're just like you...refuse to take it lying down...work with their kids, and march onward and upward! Go you!

Mamma has spoken July 28, 2010 at 5:21 PM  

As a person who works with Asperger's on a regular bases I want to tell you, he's not broken!!!
There are many successful people out there that have Asperger's. My pain management doctor comes to mind along with many others.
A student with Asperger syndrom means they learn differently then others, but THEY CAN LEARN!!!!
Find what he is good at and build upon that. Take what he is having trouble with and teach him. Many of these kiddos just don't get the how, why, what, where. You have to tell them and be blunt with your explaination. Aspergers kids can't read between the lines.
I can't begin to tell you how many times I have had to tell a young boy/girl that you can't touch your privates, pick your nose, burp, etc. in public but you can at home,in private because no one wants to watch them do it.

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