Friday, March 30, 2012

One in a MILLION!

1 in 88? Nope. 1 in a MILLION!

… and here I am again… staring at the ceiling. It could be that I am still excited from meeting John Elder Robison earlier tonight. Maybe I am still geeked up from beating my boss in our NBA 2K12 league? I don’t think that is it though.

 Here we are a couple of days out from Autism Awareness Month, a few days away from Autism Awareness Day and the CDC has rocked me. Why? I don’t know. Does it really come as any surprise at all to anybody with a child on the spectrum and in the autism community that the diagnosis rate is higher than previously thought? Not I.

I have said forever that the rate was higher. Why are so many people advocating? To raise awareness. With that increased awareness, we should see an increase in early diagnosis… and diagnosis in general. I also felt that at issue was the minority community and the impoverished. Being a Latino, I have seen firsthand the stigma within the community. It isn’t just dealing with autism though; it is any sort of birth defect or issue that makes the child “not normal”. Compounding the problem is that often times the mother is blamed. If you are a mom and you suspect something is up with your kid, are you going to take him/her to get evaluated knowing that if your suspicions prove true you will be criticized and blamed?

So here I am watching the same World News Now segment for the third time. I suspect if WNN tested their demographic, that autism parents would rank pretty highly amongst their viewership. The lead story tonight/this morning? 1 in 88. This is not helping.

So if it comes as no surprise to me that 1 in 88 kids are receiving an autism diagnosis, then why am I still up at 3:45 AM with my brain working overtime?

1 in 88. That is pretty alarming. Autism is the lead story on every newscast I turn to. That is good. I like seeing that the media is finally taking notice. Autism usually isn’t a sexy story to cover unless it can be spun into a “feel good”. I cringe as I see some misinformation and spin being put on the autism coverage. It isn’t being brought up tonight, but there is still a perception out there that kids with autism just need a good kick in the ass, and to learn to behave and shut up or that kids with autism are musical geniuses or computer whizzes. What is being brought up is the perception out there that parents are trying to get a trumped up autism diagnosis so that parents have access to services… never mind that any autism parent can tell you that you have to fight, scratch and claw for every service you can and then you have do it all over again when it is time for a review every 6 months. I mean I had a child that COULD NOT TALK who was DENIED speech therapy for a year because she wasn’t demonstrating “significant improvement”. That was despite that fact that she was starting to sign for the first time on her own, and had actually expressed a need for the first time in her life by signing “more”. Who knows where she would be now if she hadn’t had a year off only to be approved again a year later. I am not going to say the name of my insurance company, but let us just call them “Cyan Cross Cyan Shield”… did they need to save the money so badly that they had to deny my daughter a year of progress with a therapist that she really likes and appears to genuinely care for her?

1 in 88. So many kids. So many teens. So many adults. The countless number of families affected.

Then it hit me.

1 in 88 is a breath taking number. It is concerning. It is scary. But these people are already here. My daughter is already a part of my life. Does she have autism? Sure. But she is a great deal more than just 1 in 88. She is 1 in a MILLION. She was a gift. Having suffered multiple losses, a stillbirth and massive complications during Bianca’s pregnancy to the point at which one night we rushed to the ER KNOWING we had lost the baby, only to be told otherwise… we had Bianca; a perfect, healthy, happy baby. A baby that let me know that everything was going to be OK by smiling at me with her eyes open not moments after she was born.

1 in 88 does not define Bianca. That isn’t to say that we should hide from the statistics, in fact we should embrace those facts and figures and raise hell until the world can no longer deny the severity of the issue… but our kids put the “special” in special needs. They are amazing. They teach us so much about life, about who we are, about what we can do and achieve.

As challenging as things can get sometimes, the lessons we learn from our kids about what is important are invaluable. As an autism parent do you care about whether or not your house is pristine? Do you freak out at a stain on the rug left by a sippy cup… or worse? Once you got over the initial sneers and stares, do you give a damn about what that snooty lady in line at the grocery store thinks about your child? My guess is no.

We have learned that unconditional love is all we need. We have learned that we don’t even need to have it reciprocated in the way that we feel is appropriate. We know that what matters in life is that we have each other and that the bond we share with our incredible kids and loved ones is unique and rewarding.

So the CDC says that your child and mine are 1 in 88… I say again… they are 1 in a million.

I ask you to say the same thing. Share a picture of your child today with the caption:

“1 in 88? Nope. 1 in a million!”

Let the world know that while our kids may have autism… autism does not have them… and it sure as hell does not have us.

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