Tuesday, October 28, 2008

Misfit_toysAutism and the Island of Misfit Toys

I just ran THIS piece on Huffington Post. I hope you'll swing over there to leave a comment. It's not "pro" either candidate. Thanks.

There's been a lot of talk about disabilities on the Presidential campaign trail. Sarah Palin has been presented by the McCain campaign as an expert in disabilities by virtue of the fact that she has an infant with Down Syndrome and a nephew with autism. The Obama campaign has put out statements regarding the Senator's commitment to disability issues and correlated that to having a staff member with a child with autism.

Well aren't we just in the news, autism Moms and Dads? Big whoop, I say. Newsflash, autism is to the disability world what cervelles de veau is to a snooty, French restaurant menu. Sure, it's French food, but it ain't Chateaubriand, no one quite knows what to make of it, and very few people order it...


JC said...

Great piece, Kim! I especially love the MADD comparison. I hate being judged and having to be defensive every time I go to the pediatrician. I am not anti-vac, but do have an alternative schedule. My kids do not have disabilities, but I have a son turning two this weekend, and I watch him like a hawk!
Neither candidate is an expert on special needs - it's a joke that they are considered "educated" because they have a staff member who has a child on the spectrum. Palin has been a mom a special needs kiddo for all of 9 or 10 months - clearly she isn't an expert. She has so much ahead of her.
Keep fighting the good fight, Kim!!

Amanda said...

Isn't it great? Everyone wants to be in our gang - suddenly we're the cool kids! lol!

And as for Palin - would love to hear what she would say when questioned about special needs, going by her "newspaper" interview it'd be pretty short.

Grace Wallis said...

Kim, take heart I am one of those parents who want to be in the Autism club. My son (failed) the ADOS in ohio 2 years ago meaning he didnt get the autism label although many other professionals think he has PDD because of his challenge w/language when frustrated (prefers signs/or nothing, lack of eyecontact, difficulty w/relationships, getting stuck on certain things, rigidity in schedules difficulty w/transitions and sensory integration issues. They said he had a severe communications disorder but ruled out ASD and didnt see mood disorder. Frankly I dont think Akron Childrens team knew that PDD is on the spectrum! The result was I could not access reimbursement from the State of Ohio for the private program I put my son in that cost almost $1000 a week because the public school had been restraining him in an incorrect basket weave hold w/two people even after our son's private Psychologist went to an IEP meeting and explained to administrators that Henry (his pen name!) couldnt breathe when they used the incorrect restraint and that was why he was telling Mommy to ask the people not to hold him that way. He also showed staff how to do a safe restraint and use restraint as the LAST option. Unfortunately while many staff were wonderful two administrators decided not to care and hired a new staff person with out thinking to tell them of the restraint issues. Bottom line was we could not get reimbursed for that very expensive education. At that time I went out in public often with my Ohio BFF. She has a child w/autism, the kind that is diagnosable! When we were in public many strangers would give her the you are a WONDERFUL person look and even comment if we were waiting in line to her about her beautiful child (who is adorable). But my son who was not flapping but being hyper and oppositional caused me to get the, you are a terrible parent looks. Let's face it Parents, Family members and people with Autism have been Terrific advocates. Try counting the number of puzzle auto stickers on road trips. When I went into college and majored in Special Education our culture had finally accepted that children with down syndrome were not the fault of something mothers did that they could control and were realizing that children with autism did not come from frigid mom's. The chronic nuerological disease that includes the whole spectrum of ADHD, ASD, and mental illness (bi-polar, depression, OCD, ODD, schizophrenia and psycho-affective disorders ect.)is the last frontier. These nuerological brain disorders ( No casserole conditions!) need greater advocacy and charity funding. There are more children in Connecticut Public school with the IEP label Emotional disturbance than their are children w/the Autism label. This blew me away. Where is my support system? I go to autism parent meetings to get support since they are the only group of parents that have children with a disability that causes significant behavior challenges. Also NAMI reports that charity funding for Brain disorders are at the bottom of the heap even thought they are more common than heart disease and cancer. There is a high percentage of people that has a family affected by this chronic disease which is life threatening. I want my son who is in the hospital to be treated the same as a child who is hopitalized for cancer. He has a nuerological disease and can not help his behavior. He needs medical help, meds, and therapies just like any other chronically sick child. So when the construction workers at Yale New Haven Children's hospital write kind comments in spray paint on the new building structure for children in the Psych unit as well as for the cancer unit ("Bald is Beautiful", dont you love that!), Then I will feel we have gotten somewhere. For more information about NAMI, National Alliance for Mental Illness, check out the national web site! www.nami.org

M. said...

This post... yes. Yes. When our son was diagnosed, I had everyone and their second cousin giving me phone numbers of people who had special needs children. There was one particular friend who had a coworker who's son had Downs, and she REALLY wanted us to be friends.

I know I'm late on this, but your post is just about word for word how I responded to comments McCain made (Sarah Palin knows about autism) It felt very much like he was throwing the A word around to tug at heart strings. Frankly just made me want to scream.