Saturday, April 03, 2010

Autism Awareness Day

So many of you know that yesterday April 2, was World Autism Awareness Day. I suppose I *should* be thrilled about this but honestly it's a mixed bag for me. On the one hand, I am glad that there was actually some decent coverage on all media outlets about the Autism epidemic, but beyond that, I am not all that impressed.

I believe that many well-meaning people (perhaps you) wore blue in support of Autism awareness, but all I could think is This is not a pep-rally. This is our life. Our reality. Our childrens' futures, and it is much more serious than it's being made out to be.

Sure, the President got up and gave some grim-faced speech of serious words and compassion and concern, but what good does that do me, or my children for that matter? I don't need sympathy or pity, and neither do our kids. What good does that do? What we need is HELP. What our kids need is options and the promise of a future. What I want to hear is the TRUTH about the seirousness of the Autism epidemic and a plan to get to the root of the problem and get serious about getting a handle on it.

It seems that only parents of kids with Autism are freaking out, when truly this is everyone's problem. It makes me think of a Friends episode: The Last One Part 1. Chandler and Monica find out their adoptive birthmother is giving birth to twins instead of a singleton. Chandler's response is how I feel about the Autism epidemic.

Chandler: Uh huh! Join me, won't you?

Autism is everyone's problem for several reasons. Did you know that it takes approximately $3.5 MILLION to raise a child with Autism? And did you know that 1 in 53 boys in America is Autistic? Let's think about this purely from a practical standpoint for a moment. Who do you think is going to pay for some of that $3.5 Million per child? YOU. 2 of my 3 kiddos are on Social Security Disability. Lucky for you and other tax payers, my kids probably won't qualify forever, and thus won't receive money, but MOST kids with Autism who qualify will continue to do so for the rest of their lives. Many will never go on to be "productive" taxpaying citizens. SO what happens when these people continue to need care but no longer have health insurance through their parents? Many will have to be put into a facility at some point in their lives as family members/care givers die and are unable to continue their care. Who pays for this? Yep, once again you and me.

And then lets think about the military for a moment. It's no secret that military recruitment is at a SUPER low right now. What will happen in 10 years when 1 in 53 boys is automatically ineligible to join the military and ineligible for a draft if it becomes necessary?

And it is important to realize that Autism is no respecter of persons. Just because you are reading this today and have no personal experience with Autism, that doesn't mean it will be so tomorrow. I assure you I never expected to be here. Autism steals your child right in front of your eyes and you are powerless to stop it. It is a horrible reality that no number of blue shirt wearing individuals can grasp. I am horrified by Autism, and truly you should be too. If not for the emotional reasons, then for the practical ones I mentioned above. This is a crisis and it continues to get worse, yet we are getting no answers.

I wish instead of an Awareness day with an assortment of speeches and heartwarming stories, instead people would spend time with a family who has an Autistic child. I know that you may not come in contact with these families at school, as most kids are not mainstreamed, but you are surrounded by them at church, at the store, at the park. You need to really *SEE* what Autism is. To live it. You will be horrified too and want to be sure this epidemic is stopped yesterday.

I often worry that this blog is the only exposure many of you get to Autism, and that is unfortunate, because for all of our struggles, my kids Autism is EXTREMELY mild. My kids are high functioning. We caught it early, stopped vaccinating, implemented a special diet and supplement regimen years before most parents do, and my kids were in therapy at age 1. WE ARE BLESSED. And yet, we often drown with this Autism albatross around our necks. So how must other families feel?

Did you know that some children are in therapy 24 hrs per week, just for ABA? Add PT, OT, and Speech to that just to round things out. Then factor in that MOST children with Autism have co-morbid illnesses such as bowel problems, allergies, asthma, seizures, etc. Can you hear the clock ticking and that "ca-ching" of all of those medical bills just racking up? Oh--and insurance doesn't cover much if any of those services that can run up to $200 per hour.

Families are bankrupt emotionally as they grieve the loss of the child sitting before them. Marriages dissolve at a disturbingly high rate. Families collapse. Siblings fall to the way-side as the "sick" child dominates everyone's time. Money is gone, and so is peace of mind. And for many, there is no end in site. As I said, we have it EASY.

I want you to see and understand that we are simply the tip of the proverbial iceberg. We have it easy compared to what is out there.

So there are people who may watch all of this and think it is not a big deal, but I dare say no one would want to watch their child in the pain and suffering that many of these kids live in perpetually. Parents are not equipped for this. We have no idea what to do. The good options are expensive options, which makes them out of reach for some. The key is to stop this form happening to begin with. Autism used to occur 1 in 10,000 kids. It still occurs at that rate from birth. It's regressive Autism that is CRAZY high and continuing to climb. *Something* (things) is causing this.

If you aren't horrified, you should be. No blue t-shirt can touch this. We don't need to throw pennies at it and get our cute blue puzzle piece shirt in hopes that our pennies will multiply themselves and fix this. It is going to take a lot more than pennies and A LOT of people who do NOT have kids with Autism to stop this madness. Why people *without* Autistic kids? Because for the rest of us, every minute is a battle. Going to the store is a battle. Changing a diaper, a battle. We fight entire wars in 30 minutes that no one else EVER faces in a lifetime. We NEED help. We need parents to get pissed off that this is happening and to demand answers. People to whom no one can say "well, you just want someone to blame for your kid's Autism". We need grandparents to insist that something be done. We must demand it from our government and this takes time and energy that frankly, people in my shoes don't have.

As you raise a typical child, it gets easier as you go along. As you raise a child with Autism, it just gets different, but there is ALWAYS a battle.

Get involved some way. If people don't en mass, there will be tons of you reading this right now blogging about your experience with Autism in just a few short years.

I'm Panicking. Join me, won't you?

1 comment:

Liz said...

I hear ya....