This is my temporary home
It’s not where I belong.
Windows and rooms that I’m passin’ through.
This is just a stop, on the way to where I’m going.
I’m not afraid because I know this is my
~ Carrie Underwood, Temporary Home
OK, so the other day I briefly alluded to the ‘pages-long e-mail’ that we had received from one of Brooke’s speech therapists. I didn’t really do it justice, nor explain its rather large part in sending me down the rabbit hole that morning.
I’m still not going to get into the specifics of it, but I will say this by way of background – I remain eternally grateful to the speech therapist for her incredibly keen insights. She gave us a window into our girl, and even more, perhaps a key to the inner vault. However, said insights we hard to swallow. Her revelations were big. Huge. Ginormous. Overwhelming.
Like Stork in Animal House, all I could think after reading it was, ‘What the hell we s’possed to do now, ya MO-ron?’ (Obviously not calling the speech therapist a moron, but I’m sure you already knew that.) I was lost.
I spun my wheels for a while, then decided to send the e-mail to Dr I Would Follow Him To The Ends Of The Earth and ask his advice. I sent the e-mail, called his office to schedule a ten minute phone call two days hence and then, finally, for the first time in three days, I exhaled.
Have I told you about Dr I Would Follow Him To The Ends Of The Earth? I have a secret, actually. Want to know what it is? Come a little closer and promise you won’t tell anyone.
I don’t actually call him Dr I Would Follow Him To The Ends Of The Earth. I mean, OK, that was obvious. But I mean that I don’t even call him Dr Anything. Cause he makes me call him by his first name. And well, he’s kinda dreamy so that’s sorta special.
For a while, it was really uncomfortable, because he kept insisting that I call him by his first name while still calling me Mrs __ until one day I finally snapped and said, “For heaven’s sake you’re not my pool boy; you’re an esteemed doctor who I would follow to the ends of the earth. I mean, heck that’s what I call you on my blog – Dr I Would Follow You To The Ends Of The Earth! So listen, I’ll call you by your first name if you call me Jess, but if I’m Mrs then you’re Dr.”
OK, maybe I didn’t say ALL of that, but why let the truth get in the way of a good story? Besides, the result is the same – we now we call each other by our first names, though he still slips occasionally and gets all pool boy on me.
But dreamy he is, so he really can call me whatever the hell he wants. He’s dreamy because he calls our kids “our kids” and because his affection and concern for my girl are unmistakable. He’s dreamy because he talks WITH parents, not AT us. Because he takes the time to go the extra step -EVERY SINGLE TIME. He’s dreamy because he values our children and believes in what they CAN do. And he’s dreamy because he makes appointments at 7:30 in the morning and 8:00 in the evening so that both Luau and I can be there.
But mostly, he’s dreamy because when he gets on the phone after reading a big, huge, ginormous, overwhelming e-mail from Brooke’s speech therapist, the very first thing that he says into the phone is, “Jess, this must have broken your heart.” And I get to say back, “You know what? The truth is that my girl struggles every day, so honestly, my heart was already broken. This overwhelmed me, Dreamy. And scared the crap out of me. And I simply don’t know what to do with all of this information.”
He gave me a place to start – a children’s psychologist who specializes in play therapy with ‘our kids.’ Someone who might be able to help put some of the pieces together without the words that aren’t there. Someone who has the tools to HELP.
Later that night, I spoke with my dad. I told him that I thought we were doing the right thing by proceeding down the path that Dreamy had suggested. That certainly, even if it weren’t the ultimate answer, there could be no harm trying.
As we talked some more, I told him what keeps me up at night – the fact that having a doctor who one would follow to the ends of the earth is so damn rare. The fact that it took me YEARS to find him, even in this great metropolis of famous hospitals and autism resources. That when I did find him, I could afford him. That so many others can’t. That so many others are stuck in that big, huge, ginormous, overwhelming, lost, what the hell are we supposed to do now, ya moron place. That I just couldn’t stomach the idea that care for our kids could be stratified by access, location, education, money, power, by ANYTHING. It can’t be OK.
Though I’m not ready to write about it yet, I will tell you that I’m working on finding ways to make things different. That I found inroads to the seats of power – or more accurately, they found me – and we are moving forward to find ways to help.
We all pass through big, huge, ginormous, overwhelming and lost on this journey. It’s par for the course and it is what it is – as long as it’s a temporary stop. It can’t – it simply CAN’T be the place that we land.
If you have the means to help, please help. Give money, give time, talk. Talk to your friends, your neighbors, to those with the power to affect change. Because EVERY child who struggles with the challenges of autism deserves a doctor who his mama would follow to the ends of the earth.
To find an autism support network in your area, google “(your city) autism resources”