This week “Everybody’s Boy” made an impact. The Open Letter I posted about Autism insurance reform went”viral”…or at least as viral as anything about Autism insurance reform could go.
A dear friend, Clara’s mom, blogged about it on BabyCenter. Then it showed up on People.com. There has been lots of support, some healthy disagreement, and a little bit of pure vitriol.
The support and agreement overwhelmingly outweighed all else.
From time to time people say to me “I don’t know how you do it?”.
I never know how to respond to this.
Because I didn’t do this. We did this. Mostly you, actually.
So tell me, how do you do it?
How do all the parents of children with Autism continue to have the fortitude to fight – every single day – after sleepless nights and huge setbacks?
How do our family members and friends find the wherewithal to support us? To love us despite our myopia?
How do our therapists continue to work with a child for years on end, while being just able to support their own families on Medicaid reimbursement rates? Or the generous discounts they offer for private pay clients?
It’s love, I guess. It’s passion. It’s the inspiration and the hope that these children give us. The hope that if we invest now – if we fight hard up front – that some day it could be our own version of “okay”.
While all of this was happening our world was imploding. We are still trying to find the money to private pay (even with greatly reduced rates) for EB’s therapy when Medicaid ends soon. The nights I have slept this week have been fraught with unnerving nightmares.
There was an emergency IEP meeting. Our boy did not acclimate at all well to the transition to mainstreaming. In fact he regressed – like a lot. It was scary. Him being so clearly anxious and confused and absolutely out of control.
We hit the reset button and he’s back in the Autism classroom for now. Our primary goal is to bring him back to where he was several months ago. He is angry, scared, confused.
He’s hurting himself, lashing out at others, running away.
All things I foolishly thought were behind us.
That’s the thing with Autism.
There is no set trajectory. Progress is gained and lost, sometimes it’s lateral, sometimes not at all.
How do we do this? I don’t know.
But I do know that it’s not a special power we have. In my case, this is what being a mother is. I don’t know any mother that wouldn’t fight for her child – some of us just have to fight harder at times.
The only sage wisdom I can offer comes to you courtesy of PBS Kids. While watching “Super Why” the other night a phrase resonated with me. I wrote it down on my hand – because it was dark and I couldn’t find any paper and I had a sleeping little boy in my arms.
When I woke up the next morning, at 1:15 a.m. with a very anxious and definitely-not-going-back-to-sleep-child – I read the words through bleary eyes.
Breathe. Believe. Begin.
These past few days it’s stuck with me, this preschool lesson clearly meant for me (and maybe for you too).
Breathe: Don’t let anxiety get the best of you. The outcome might be insurmountable but the task at hand probably isn’t. Breathe. Take a walk. Make a phone call. Read Us Weekly. Do some yoga in your office (yes, I did). You might feel like you don’t have time, that you can’t lose a moment working, that everything is falling apart right now and only a miracle can make it right…
Breathe Anyway.
Believe: Even if you can’t believe in yourself. You can believe in your child. You can believe that the fight is worth it for them. You can believe that this is bigger than you and you don’t have to do it all (although it often feels like that). You just have to do your part in that moment. If you wait for the confidence of an army, you’ll be waiting forever.
Believe Anyway.
Begin: Know this, you’ll never be adequately prepared. No matter how many binders or reports, or letters of support you gather. No matter how many hours you spend at Kinkos printing “whitepapers” on your child. You’ll never be 100 percent ready.
Begin anyway.
That’s it. It’s all I have. It came from a children’s show. Yet maybe more of my wisdom should come from children. Because every single day, my child tries with all his might to meet the expectations of this world. It’s a lot harder for him than it is for me, but for the most part he does this with great success.
Maybe he understands better than I do how all of this works.
Breathe. Believe. Begin.
