Friday, September 26, 2008

Asperger's Syndrome isn't a death sentence

I have Asperger's Syndrome, a condition that falls within the Autism Spectrum. My older son has it, too. We're not stupid, though we are a little naive and may not get jokes as much as others do. We manage to get through life just fine. The organization known as Autism Speaks does NOT speak for me or my son. We can speak for ourselves.

Asperger's Syndrome and Autism spectrum Disorders are not a curse or a death sentence. It's just another way of being.
I hope that people on the Autism Spectrum are understood by those around them. That's been the best thing for me & my son. We need to be understood. That doesn't mean you have to know our thoughts and expect certain things. That means you need to be patient with us. Ask us what we need. Don't expect verbal response. Let us write it down or email it or text message it. We need structure, routine. Help us maintain that. I, personally, can't keep things organized to save my life (a blog for another day!), but I crave organization!

On my Special Needs parenting board a mother wrote: When you have a child with high or special needs, it's not just the child that needs treatment and therapy. Parents often need it, too.

She is so right. Having children with Autism, Sensory Processing Disorder, and Anxiety is quite a challenge. How one deals with it varies. I love my children to the very depths of my being and beyond, but some days I'm just spent. I'm worn out from Max's perseverating on his video games or Rachel's anxiety over bad people in the world or each child's issues with the way socks feel or the texture of food or the long pants or short sleeves. It can definitely get to a person.

Some days, my saving grace is my Special Needs forum and I am so glad to have that. Additionally, I have an aunt with a son that has been dx'd with Asperger's Syndrome and she has been an ENORMOUS source of comfort, help, and support.

1 comment:

Casdok said...

Well said!
Yes all we need is a bit of understanding.