Sadly, there is no 'Dear Abby' column for what to do when your friend's down syndrome child gives your autistic daughter a black eye on the school bus, sighs...

Last week, a study came out in the Journal of Autism and Developmental Disorders which said, in essence, that in many cases mothers of teens and adults with autism are under tremendous stress. The blog DisabilityScoop cites the study as saying:

Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities.

No kidding is all I can say about that. I had to leave a job I loved to care for her, we moved to another state for family support and better schools, and I am isolated from most of my family because they choose not to be supportive in our search to heal our child. I have to tell friends not to stop by because she can't handle the interruption, and any time we have company I HAVE to make them leave at her bedtime, 7:30, or she goes nuts. It is not similar to combat stress it IS combat stress. If I had a dollar for every time I had to physically restrain her I'd be able to pay for all the out of pocket therapy, supplements and special food we buy for her.

Enough of that, now I would like to see a study on how stressful it is for their NT siblings and dogs.

A picture is worth a thousand words

This picture represents so many issues surrounding being the parent of a child on the spectrum. Notice the ridiculous number of giant hair bows in our possession. When she was a baby, I had grand aspirations of raising this ballerina/princess/hair bow-dress-tight-tu tu wearing Diva. She was going to Juilliard. I invested much in this plan and purchased every hair bow in existence, long before she had any hair, in addition to lots and lots of dresses and pink feathery stuff.

In reality, C has far too many sensory issues to allow any sort of hair styling and if she had something in her hair it would drive her and all of those around her to distraction. So we just have a drawer full of hair bows and every year at Christmas she wears one for about 20 seconds after threats of Santa not showing up. She can't handle ballet because she can't pay attendtion or sit still, not to mention she is completely floppy with very poor motor skills, and I got really tired of the 'looks' from those perfect moms and their perfect ballerinas. And dresses, not unless you want the world to be well acquainted with her undies. However, it is not so bad to have a kid who doesn't need dresses, bows, uggs, earrings or tu tus. This isn't what I planned on for us, but what the hey, Juilliard is expensive...

Another intesting part of parenting a kid on the spectrum is that life is a chess match. You always must be anticipating what will set they off, what situations they can handle and engineering every aspect of life to ensure she can manage not to fall apart. This particular photo is the result of her being sent to her room for an hour after I engineered faultily. I desperately want her to have friends, fit in, go on play dates. All the things NT (neurotypical) families take for granted. She was asked on a playdate by a nice girl whose mom doesn't seem to mind haning with the aspie (believe me, we have been dumped many a time when parents realize we have issues). Against my better judgment, in a rash decision I allowed her go on an open ended playdate. Huge mistake. A child on the spectrum needs constant structure. They have to know what is coming next. Her behavior was deplorable, and as a result she had an extended vaca in her room, resulting in the 'look'. At least the hair bows got used, right?

The picture represents what I planned on and what I got. You don't always get what you want, but if you try sometime, you just might find... I don't want this blog to be me riding on my daughter. Any success she has puts us over the moon. She works so hard to do things that come naturally to most children. She has taught me so much and given me new perspective on life. Now does anybody need some hair bows?

Today with this first post I will start my journey to share my experience parenting a child with Autistic Spectrum Disorder. Eight years ago when my daughter came into the world with ten fingers and ten toes I thought everything was going to be perfect. Since then we have struggled, spent a whole lot of money, done a lot of research and laughed a lot. I hope to help others by sharing what we know, what worked for us and give you a few laughs on your way! I am the out of sync mom!