Friday, November 13, 2009

Wish they would understand....

It's 2:40am and I am still awake....Karl has just fallen asleep and Victoria is between us snoring up a storm...I can't sleep....there is a fire very close to us and I can hear the trucks and saws and explosions and it's keeping me awake right now...so here I am blogging once again...

I was out with my mother today....and I tried to talk to her about my feelings regarding Trevor - basically about what I had blogged about the other day. And she just doesn't get it....none of them really seem to get it. It's so frustrating! I know we are struggling to come to grips with it, so I can understand from that perspective, but to just think he'll grow out of this is ridiculous. You just don't one day get up and voila - no more autism. That isn't how it works! Yes, as he gets older, it could get better in terms of how he handles/manages it, but it will never just magically go away.

When I tried to explain to mom about how I miss the "old" Trevor...the smiles...the giggles....the eye contact....the hugs and kisses...well she played it off that all school age kids stop doing that. I beg to differ! This isn't like Trevor just doesn't want to kiss his mommy anymore. He actually says it hurts when we hug him now...he says he can't breathe. And we aren't talking bear hugs here either...but just a normal "I love you" type of hug. This is a child who as I said avoids eye contact - he'll carry on a whole conversation with someone looking in the opposite direction. This is a child who often complains that his brain hurts and that he had too many thoughts.

I am just so tired of hearing that so and so said he's normal, so he must be. Does so and so have a degree in developmental pediatrics? Does so and so specialize in Autism and Autism Spectrum Disorders? Does so and so have a child on the spectrum? What's that you say? No? Yeah, I didn't think so!!! Just because some 60 yr old woman who sees him for 2 hours at church a couple times a month feels he is normal, doesn't make it so!

We just got a new case manager for Trevor and she seems wonderful. She's working on getting us things we/he needs, be it locks for the doors, information about a horse therapy program, local activities, etc. We are having a group meeting next week and I've requested that my mom and both of my sisters who live here attend - I want them to see and be part of this....hoping that this will help them understand what we go through...that maybe they'll see how we need their support and understanding instead of just brushing it off or trying to explain it away.

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