Special Needs Parents: why they scare me!

I remember watching an Oprah episode with Jenny McCarthy in which the entire audience was filled with “Warrior Moms.” They stood up and cheered for themselves every chance they could and regaled Oprah and Jenny with their triumphant war stories.

I wouldn’t want to cross those ladies in a dark alley, or at an IEP meeting. I could tell just by looking at them that they were some tough broads. They looked civil and well-intended from the outside. They were even all glammed up for the Oprah show. But what was brewing underneath their self-congratulatory smiles was pure venom. Venom for anyone who poked a stick at their baby bears. Venom for anyone who crossed their paths and threatened their families’ happiness.

Frankly. They scared me.

As I sat there watching these women I thought, “Why were they always ‘fighting?’ Who were they ‘fighting?’ Why was everything so hard? Clearly, they just had some bad experiences.”

Even when Finn was first diagnosed, I spoke to a few friends whose children had autism and their advice was always very combative, “Fight for what you believe in,” “Get an advocate,” “Never let them see you sweat.” At the time, we didn’t even know what we should fight for and from whom we should be hiding our sweat! Our philosophy was “We’ll trust you until you give us a reason not to.” Now, that I’ve come over to the “dark side,” if you will, I realize that that was like ringing the dinner bell for a pack of hungry wolves.

It takes a while to get the “special-needs-parent-chip-on-your-shoulder.” I didn’t want to have it. I tried my best, really I did. But here it sits. Because, you see, if you don’t have it (and maybe you don’t and I welcome your comments), but I believe that if you don’t you are giving your power away to someone else. There needs to be a certain amount of what I (and Pink Floyd) like to call “comfortable numbness.” You have to be strong enough to stick up for your kid, educated enough to know what he needs and numb enough to keep asking the same questions over and over until you get the answers you want!

Some people call that the definition of insanity. I call it tenacity. I call it necessary. I call it being being a special needs mom.

Now that I see the world through the lens of my kids, everything else either makes sense or doesn’t matter anymore. Now I understand what the “Warrior Moms” were fighting for.

As a special needs parent, it’s easy to feel like it’s me against the world. I have to choke  back that urge, a lot. Because when my kid doesn’t act how other people think he should act, believe me, the claws come out! And when the insurance company doesn’t approve a doctor because he is “out of network” or the “treatment isn’t covered,” the Momma Bear starts to growl. And when the Child Study Team doesn’t agree with what I think is “necessary and appropriate” for my child, the mighty Momma Bear roars.

In the face of all this animosity, who wouldn’t feel like she were backed into a corner with no other choice but to come out swinging?

So, to you “Warrior Moms,” I apologize for misunderstanding and judging your plight. Only someone who has walked a mile in your pumps can truly see the world the way you do. I’m sorry it’s taken me this long to realize. I’m sorry I had to become one of you to do it. But I am proud to stand among you and FIGHT for my sons. I realize now that sometimes progress takes controversy. “Fighting” doesn’t make you mean or combative, it just means that your heart is bigger than the bureaucracy. Your fight is bigger than the “bottom line” and the school budget and out-of-network-costs. And it isn’t about the “fight.” I realize now, that you were proud of the “fight” because you were proud of your KID! You weren’t bragging about the fight, you were bragging about your kid. And so, I too, have picked up my cross and only just begun to fight. Maybe we will meet along the way. Only this time, I will be cheering right along with you!

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3 thoughts on “Special Needs Parents: why they scare me!

  1. This blog makes me want to be the best teacher I can be, to help out the “Warrior Moms” and give them a breath of fresh air while I have their students in my class. I should be able to get CE credit for reading your blogs Shan!!! Great insight from a parent, to a soon-to-be Teacher!

  2. My son is now 22 and living on his own in his own apartment with his dog as his “companion.” I home-schooled him because I was in the position do and realized that public school wasn’t the answer for him. I didn’t waste my energy trying to get educators to conform to the kind of teaching style I desired for my son. I realized the school was an institution and that institutions remain just that. As I look around me today, I see basically two groups of “Autism moms:” the ones with common sense who are respectful to any who at least try to do a good job with their kids, and the ones who blame everyone ALL THE TIME for not being a perfect clone of themselves.
    What I’ve learned is this: Being a human being, one with kindness and nobility of spirit towards others, should be priority number one. Number two – “autism mom.”

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