My heart has been broken tonight. We went to visit Elliott Richards new school this evening. Everything was went real well. Then we went into the classroom to meet the teachers. Most of his classmates were there. Everyone was playing together. Elliott Richard was off by himself and for the first time I saw him as an Autistic child. It was all I could do to keep from bursting into tears in front of him and everyone else. I tried so hard not to cry. I eventually had to go outside to get some air.
I knew Elliott Richard had sensory and anxiety issues but for some reason I never saw what was behind them. If I am to be honest, ER is my weakness. I am the closest to him. He’s my first born and he almost died it’s just a special bond you form when something like that happens.
I turned 32 this afternoon and I have been evaluating my life and what I have done with it so far. Honestly, trying to raise 3 Autistic children is an impossible task that I can’t even begin to describe. Trying to raise 3 Autistic kids and realizing that the absolute best I can do isn’t even close to enough just kills me.
We have officially outgrown the car we have. With both car seats in place Gavin has about 10 inches of space to sit. This officially means we can no longer all ride in the car at the same time. This is really going to complicate things going forward. There is no way for me to get my family the van we need. With all the out of pocket expense associated with Gavin hospital stays I couldn’t pay the mortgage this month. Autism just seems to keep taking and taking. I honestly don’t understand how or why people refer to Autism as a gift.
Especially for those of us with kids that were “typical” and then were taken away by Autism. Autism isn’t a gift and if I had the power I would make my kids better. I don’t understand why anyone wouldn’t. It’s about want the best for our kids. It’s about having the best chance at life. Autism can make that all but impossible. So yes, if there was a cure I would want it for my kids. I love and accept them for who they are. That doesn’t mean I’m happy with their lot in life. I want my kids to have the same chances in life as any other child. I want them to be able to experience life at its fullest and realize their dreams.
So Autism, I hate you for taking that away from my babies. They deserve better then you. I will love them for who they are but never stop trying to free them from your prison.
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Rob….you and me are so much alike that we could be brothers.I also almost lose it when i used to see my son hiding under the table, scared and alone.The pain you feel as a parent is horrible….you just want to grab your child and run out the door to try and make things better.No matter how hard you try, its never even close to enough,you feel like a failure.This week the great guy i've worked for 26 years took away our health insurance and since that time i've become the meanest person in the world. My inner circle has become very small and i'm so annoyed by everybody that i could scream.Money once again will dictate the kind of help i can get for my son and i'm so pissed and bitter about it that i almost can't stand it. I make too much for help but not even close to enough to pay for therapies out of my pocket. Some people just don't get it even if you show them on paper…….I think this is a battle that we just won't be able to win this time.Greedy people are the worst kind to be around and i'm so ………well, i'm sure you know the rest of the story………….Misplaced priorities and self centeredness are 2 qualities i no longer wish to be around. What comes around,goes around and i hope i'm around to see it.Keep up the good work Rob………
My heart goes out to you absolutely. I cried when I read what you shared about going to your son's school & noticing his 'differences' compared to the other kids; seeing him in a different light. I am sad & crying as I write this b/c it hurts to see my son around other kids ('typicals') his age on the playground, for example, playing as a group, & my child is way far away talking to himself, stimmimg & flapping, spinning, clicking, etc. It's so lonely looking. And when he brings up his birthdays, I never invite kids b/c I know he has no friends & they wouldn't come anyway. He thinks kids in his class are nice to him when in fact they are teasing & bullying him. He's in a mainstreamed 4th grade class room this yr, he has an IEP, but only 90min of interaction w/ the ECE teacher. The ECE teacher is in his classroom helping 31/2 hrs out of the day but I'm sure the teacher can keep track off my son, his class is the one w/ the majority of the IEP students b/c the other class is bi-lingual.
Anyway, I totally rambled but my heart was and is totally w/ you & your beautiful boys. I thought one boy was a handful! Lol. I tell myself all the time that somebody 'up there' must really think I am an ok parent, b/c I wasn't just gifted w/ a son, I was given a sense of humor. I cry often but I laugh ten times as much. I hate autism but I have to be able to laugh off some of the crazy stuff or my son won't have me. We are joined @ the hip. I live for his hugs & kisses & "I love yous.". They are therapeutic.