Corn Dogs Are The Best Food Ever

Yesterday Gabriel asked me
Mom, is this a fact or an opinion?
Corn dogs are the best food ever.
Opinion, I said.

Wrong he said back.

Appearance is everything.
Fact or opinion?

When Gabriel was a baby we heard a young man with Down syndrome speak at the Central Florida Down Syndrome Association benefit dinner. He looked awesome. He told about how his mother taught him to always look his best and how this was more important for him because he had Down syndrome. This is a sad but true reality. Not just for people with Ds but more so in that we discuss it's relevancy.
Fact or opinion? Can it be both?

Get on a plane in your pajamas and travel. Now get on a plane, brush your hair and wear casual clothes. You will see a difference. Go to the doctor, go to the mall. Test it out.

When we were in FL the Ds association had monthly meetings. It is a safe place for parents to compare, to stare. Yes it is horrible but we do it. At least it is at an appropriate place I guess. There was a family with a little boy about Gabriel's age who we would see periodically. He was always dirty. His nails were never cut. He always had boogers. His parents fed him junk food. It made me mad, did they not get the memo?!? We ran into them at the local hospital once, same appearance. UG! I was so upset. I cried.
He was the stereotype. The image of Ds many people carry.
Why would his parents do this?
I judged them. Whatever. I judged the system too.
The system is wrong for letting the stereotype prevail but the parents were also wrong for letting it prevail. It is a responsibility we share . Advocacy comes in many forms and we all can play a part. Even a tiny part like cutting fingernails and keeping good hygiene.
Fact or opinion?

 

We do it every day, don't we? Stare. We call it people watching. If you are a woman and you catch me staring at you most likely it is because I like what you have on and I want to copy. I am attracted to you. If you are a man, um...well I'm busted.
But parents of kids with disabilities know all about staring don't we? We can distinguish between a stare and a STARE.

I confess. I hated seeing that kid with the dirty clothes and long nails. He was set up for failure in my eyes. His parents seemed ignorant, thus he was. But he shared a diagnosis with my son, a commonality. It pains me to admit I am so shallow. I am embarrassed of this trait I have.
I can change it. I try.

The image of Down syndrome is something we can change. Now I'm talking about the perspective. The bigger picture. The reason advocacy is a big deal is because it has to be. Because of people like me. Because of preconceived notions like mine. Because of dirty long fingernails. We can change the outer image, but we need to work on the inner one. I need to too.

When Gabriel was a baby (still in the stroller asleep baby), I would see people staring at him. I was so self conscious. I felt like the mean kids at school had put a sign on my back. I never considered that people love to stare at babies. I never considered it was because my baby was adorable. I thought everyone could see the Down syndrome. I was skeptical when people would act shocked when I told them. I felt like I should announce this to everyone. "He has Down syndrome." Oh how I wish I could go back and change my perception.

We all evolve.
Fact or opinion?

Today our history seems to be repeating itself. We really get the stares.
My son is cute. Fact :)

He does not fit the Ds stereotype in some ways.
He is clean.
His clothes are kinda cool.
He is tall and thin.
He is very verbal.
But he is sick. He looks sick.

He is either being pushed in a wheelchair or using a walker.
He has leukemia.
I have the urge to announce it and many times I do "He has leukemia"
So they won't assume all kids with Ds are not healthy. So other parents in our Ds club aren't embarrassed to let us still be in the club. He isn't your poster boy anymore. Jeez, I am tired of justifying his existence.



People like me need to evolve. Fact.

Appearance isn't everything.
Fact or opinion?









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