Wednesday, June 28, 2006

The Ramblings of a Sleepless Night - More on Awareness

We are at St. Charles Medical Center in Bend, again. Billy Ray is continuing to have pain and weird lab results that keep the whole team hopping. "Dr. Brice" had him admitted this morning.

I am writing this in the middle of the night when BR is sleeping but I can't. This time the hospital put us in a slightly bigger room that a rollaway bed will fit (barely) in but I can't seem to relax on in.

Like Sue Rubin wrote "The argument dividing the autism community regarding the need to cure autism as opposed to accepting autism as a natural emission of diversity has been on my mind lately."

I wrote about Awareness my prior posts and also asked for your input relative to why people were somewhat critical of the Autism Everyday, a video by Austim Speaks. The feedback received seems to suggestion that much of "awareness" is really protraying autism as a death sentence leaving no room for joy and satisfaction together with the frustration.

I saw a bumper sticker yesterday. It said "Think Autism, Think Cure". It seems to me there is one main problem with the cure goal, it may take years and probably won't have an impact on some of our kids. Of course, we should fight for a cure but not because so focused on the cure that we lose the good in today, helping our children to be the best THEY can be. It goes back to an article I have loved and quoted for many years, "Don't Mourn for Us" by Jim Sinclair.

Mr. Sinclair recognizes the natural grief a parent experiences when they get the dreaded diagnosis. At the same time he suggests: "But this grief does not stem from the child's autism in itself. It is grief over the child the parents had expercted.*** But this grief over the fantasized normal child needs to be separated from the parents perceptions of the child they do have; the autistic chidl who needs the support of adult caretakers and who can form meaningful relationships with those caretakers given the opportunity."

In a real sense the idea of cure needs to be put in that same perspective. We should give every dime we can spare to places like Autism Reserach Institute and other reputable organizations seeking a cure, advocate for research but make helping our individual child to have the highest quality of life possible.

Thanks for your best wishes through comments, email and my Yahoo list. Billy Ray is actually a little better tonight. I will try to keep you posted.

Please note that the links file is at home on my own computer and I tried to cut and paste the link for my Amazon Blog but the computer in the hospital family room will not left me cut and paste. If you want to see the Amazon Blog scroll down to a prior post to click on it.

Until next time,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

3 comments:

Lora said...

I just love that article "Don't Mourn for Us" and I think that anyone is even remotely associated with autism could gain some insight from reading it. I am so sorry to hear that Billy Ray is still in so much pain and I do hope that he recovers very soon.

Vidya Ganesh said...

My best wishes and prayers for Billy Ray to recover soon.

The point you have made about spending every dime to places like ARI and other organizations is SO TURE!!!!

Thanks for sharing.

K.C.'sMommy said...

My thoughts and prayers are with you and Billy Ray. I hope he feels better soon. Please keep us posted when you can. I hope he is well soon and back home with his Penny Lane soon. I love that photo of Penny Lane and Billy Ray! It is ever so cute!