The invisible disability

Warning: This is an emotionally written post. It's for our journal. Read at your own risk.:)

I tell you what, most days I think I have this parenting a child with a disability kicked in the pants. Tonight, I'm deciding it has officially kicked me in the pants. They tell me that parenting a pre-teen or "tween" is pretty darn tough....then add a nice bit of autism to the picture and BAM! you get your toushee kicked.

A note about aspergers..it is quite invisible to the naked eye. It's invisible to me a lot. I don't see Garrett as a boy with a disability until it rears it's ugly ugly head. And even then I have to teach my brain to be compassionate because he looks so "normal" that how in the world could he be acting like this?


I've been watching NBC's new drama "parenthood" since last season and I love how they portray Max, the boy with Aspergers. He is a pretty great example of what it's like to live 24/7 with a child with aspergers. Best of all, it shows how tough it is to parent this child. Parenting is tough enough isn't it?

I so wish we got that infamous "instruction book" with our children. Should we really be allowed to ruin them just because we forgot to pick up the instruction book?:)


Back to this stealth bomber they call Aspergers...Tonight we were headed to a play and Garrett was just beside himself. Complaining about his clothes(we were dressed in church clothes) and wanting a suit and tie to wear. Just FYI, Garrett has NEVER wanted a suit and ties have caused some serious temper tantrums since he was about 6. So along with the whining that he needed new church clothes, he was emphatic about needing a suit and tie. Well, who knew??

And yes, contrary to all parenting (non-asperger kids) books advice, we skipped the play and headed straight to the mall. We purchased a suit, a shirt and tie, and a few other shirts that were "cool" for school. He was disgusted that we made him go to the mall with his church clothes on (very normal I know) but instead of being quietly mad, he protested very loudly the whole time we were there. A normal parent would have turned around and left, but not us, we're not normal parents. We have an awesome boy who needs us to endure that trip to the mall. So we did.

We endured by: listening to his whining, correcting him, listening to his whining, helping him choose a correct size, shape, texture, style, color...all of these things are sensitivities for aspergers children, whispering to the other two kids to smile and be good and ignore Garrett, making our trips to any other store VERY quick but not totally doing what he wanted..man it's a fine line!


I LOVE Garrett with all of my heart -- and then some. I love what he teaches me. I love how he helps Philip and I to communicate better. I love how he humbles me. I love that he is so interested in life and the many facets of it. I love that he teaches his brother and sister compassion and patience. I've decided that some days I may not like what he does but that is his CHOICE....and I was ALWAYS love him!

Quite honestly, I wish we could all live in an aspie world, it would be so freeing. It's such an honest and open place to be. It's "our world" that causes them to get frustrated due to so many social norms or "rules" that we have adopted. A perfect example is in the last episode of Parenthood where Max's Mom is trying to teach him how to trick or treat. Check it out here. I cried when he was at the haunted house...and just to validate that I'm not totally crazy, so did my girlfriend who has a boy with Aspergers.
Apparently walking around the mall hollering that you don't want to be there is not okay. Apparently learning to phone someone or knock on their door is not always easy(because it's not planned or routine) But the honest truth is, we all struggle and we are all learning from each other. As tough as it is to see your child fall behind socially, emotionally and academically....it's much better to see the huge strides he has made since he was a preschooler...and I do mean HUGE!

At his IEP the other day I mentioned that I knew an older person who has Aspergers (or so I thought) and I told him that the older person didn't know he had it. Garrett said "WHAT?? How could he not know...he's lived his whole life and he doesn't know? " I thought it was great that Garrett is so secure with his "ugly label" as others like to call it. We call is -- "who we are" Some days he hates Aspergers, and so do I. Most days we embrace it.


Seriously...watch Parenthood...it is such a great depiction of aspergers(while remembering that you could line up people with aspergers from California to New York and you'd never find a duplicate). Check out this link here.


PS Man do I love my niece Maddie that helps him through everyday at school -- and just as much as I love her, he does too. He knows she helps him -- the Lord is mindful and always watches out for all of us!