Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

3/6/08

Where's Her Mito Pin???

Hannah Poling's mother at the press conference today...see here.

I am trying to find the complete press conference, please leave me a link should you have it!

From the clip I saw, I am livid. This mother, whose child, let us not forget, has a mitochondrial disease, spoke of how agonizing autism is . She and her husband wore their big puzzle pins (where are the green UMDF pins???????). She speaks of how Early Intervention labeled her as "multiple intensive needs" (which, from what my friends at ECI tell me, words like that are typically left for children who have breathing tubes, multiple disabilities, etc., very rarely used with a child with "autistic features"). and how her husband's heart broke when he realized his daughter may have autism. The same old pity party that tells the world that all of us living with autism in our life are miserable, how we've been cheated, and how desperate our situations are. I am now certain she has been trained by DAN! or whoever on her talking points.

Product ImageHow sad, not only for the autism community, but also for the mito community. This could have been a wonderful time for this family to use the media as a tool for awareness for mito (and raise much-needed funds for a disease that can be fatal).

For what it's worth, Hannah is a beautiful young girl. The camera panned to her, I think in an attempt to show how "injured" she was from the vaccines. Well, for any 9 year old, to sit there quietly with a swarm of strangers and cameras, in a strange place, I think she did amazing! We've all seen politician's children go nuts during press conferences. Could I see some "signs" of autism in Hannah, yes. But, I also saw a child who sat politely (in an outfit and setting, that would probably send both my daughters into distress, btw), was able to unscrew & replace a water bottle lid, and, most importantly, a beautiful girl, with gorgeous red hair, and a contagious smile. She is, like my daughter, full of life.

5 comments:

Kassiane said...

GAH.

What the hell is wrong with people?!?!? They could have gotten "awareness" for what their daughter ACTUALLY has and helped kids ACTUALLY like Hannah, but...GRRRR.

I share your frustration.

Sharon said...

Those are some big ass puzzle pins! You're right here, it would have been a splendid opportunity to raise the profile little known, serious disease. But they obviously wanted to blow up the balloons and join the autism pity party.

Their little girl is adorable.

Another Autism Mom said...

Sounds like the mito was just a way to get the government to concede the case... And then they come out in public and only talk about the autism part.

She looked pretty healthy, huh? Very cute.

Club 166 said...

Well, they've hit the Jackpot!, and that depended on them talking about the vaccines causing autism, not the natural progression of a genetic disease.

I'd like to thank them for fanning the flames of "pity parties that want to blame someone else" everywhere. A local autism list in my area has already become chock full of people wanting to know where to go to see someone about mito disease.

Joe

p.s. Yea, I've never seen such huge puzzle pins.

S.L. said...

My friends whose children have lost their lives from mitochondrial disease would give anything to have that type of media coverage for the disease. A press conference, article upon article, a Larry King Live appearance...think of the awareness and dollars that spotlight would raise to help those with mitochondrial disease. So sad.

A hysteria literally has begun because of irresponsible reporting and improper representation of this case. I hope that families will seek out credible physicians, and that mito testing will only be done when truly warranted.

On a lighter note, those puzzle pins reminded of prom boutonnières! You've got to be kidding me!