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the thing about autism

Julie - posted on 05/08/2010 ( 3 moms have responded )

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I'm the mom of an almost 9 yr. old boy with severe autism......he was diag. at age 2 and since that time I've realized why sites like this are soooo important; not that I'm belittling the heartaches and problems that come with other disabilities.....but autism (AS disorders) are in a class all their own due to the inablilty to communicate and the urge for my son to isolate himself (turn inward...into himself...get lost in his own world). Many other disabilities are more straight forward and that can make the struggle with autism so much harder. The other thing about autism is how isolated we become....my son stresses over alot of things in his enviroment to where we have to be very careful where we choose to take him. I myself feel rather lonely despite what a great hubby and kids I have...I can never help out at church, I can't hang out or go visit people that COULD be friends. I admittedly worry about my other 2 kids; they can't 'do' things like go to an amusement park; do various summer activites (a result of the autisic reactions by Erik as well as my own disability); as greatful as I am to have such a great kid like Erik; and Iwe truly believe that God handpicked us to raise such a sweet boy (a compliment that He trusts us with such a daunting task) the autism certainly takes a toll on us all in many ways. So I'm glad that connections here are possible with others that would understand!!!

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Judi - posted on 05/29/2010

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Our challanges are greater but so are our rewards. Sites like this remind us of that.

Shasta - posted on 05/08/2010

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Hi :) I know what you mean. This is a place where ppl actually get it. I have three son's on the spectrum. And I love their therapists and their teachers. And I know that they mean well and work with children like ours everyday. But, even they don't really get it. They don't live it 24/7 like we do. This is a place where we can be free to express ourselves and find people who trully get it.

Sheila - posted on 05/08/2010

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Hi Julie,

I know what you are saying. We often take two cars in case we need to leave an event with my son....an event can be as simple as a family birthday party.

We don't do many "whole" family events. Today my daughter is in a competition, but my son can't handle the crowds/music (cheerleading). So, I went to the last one...my husband goes to this one.

We love to go to the pioneer museum in our city. It is quiet, often there might be only 5 or 10 other families there. We find something new each time. In the summer, we go to a Splash park...

There is a stress that comes with the isolation, and the judgement that some of us endure when parenting is blamed for a neurological disorder. I think that is what is different about autism....in that, if someone sees a parent dealing with a child with an obvious physical difference , there is an acceptance/understanding of that parent's difficulties. With autism, well...if you can't see "the problem" people can jump to their own conclusions.

Somewhere in the "new mom" parenting books there should be a section called What if There's a Problem. You never think that you might be faced with a PROBLEM.....but it should clearly state that, for some moms, you will face a problem, your life and the life of your child, will face challenges you never thought possible. To prepare yourself, the first thing that will happen is you will be knocked down to your knees. And when you are down on your knees, that's when you will feel the weight of the world come crashing down on you...and through this, you will have to dig deeper than you ever thought possible, and you will have to stand up and deal....because your child is relying on you.

Sites like this help us all to "deal". We ease the isolation, we find support, and we look for those happy stories that shine light on the days to come.

Sheila

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