Most all of the time, while in the moment, you don‘t have the opportunity to reflect, or at the least, slow down, especially when the moment is raising a special needs child.
So right now Kim is sending emails, making phone calls, lurking and trolling local user groups, etc…to build the support system we’ll need for Demetrius, and I’m not even talking about in-school services.
How different it is than just signing up for gymnastics or soccer, or some other summer-bound activity that may lead Maya to more potential little girlfriends – no interviews at the pool to see if Maya and little Suzie are the ‘right fit’ for each other like Demetrius will have to go through with therapists and special needs pediatricians.
Beyond this, I’m also reflecting a bit about our last ‘big move’, from California to Atlanta in 2002. Certainly a cascade of angst and fear, our discovery phase in evals and tests that the boy was autistic, and trying to figure out just what the hell this actually meant. As I always write, it was a gray time, a move that seemed less than exciting or promising – not at all an adventure because of the situation.
So maybe, with this relocation, we are more in a ‘phase three’ – if phase one was what I wrote above and the learning and understanding of what the diagnosis would mean to and for us all, and how our days and lives would be shaped by it, and how it blended in to become…well, phase two may be the realization that autism is just part of our life, like the sun rising and setting and Maya’s non-stop chit chat. Still hard and still making us peer around corners as we approach new moments in life, but nothing so gray as the last move.
So what could phase three be? We know so much more about the boy and his habits, the ongoing give-and-take with remote control and DVD player passwords, what nervous ticks really mean for him (twirling of the hair when nervous or tired), TV talk from movies he liked when he was younger when he’s happy, etc…that he’ll actually talk with us now (still much prompting) – we also know he’s generally happy and nervous about going to a new school, no different than any other soon to be third grader who has relocated.
This leads me to think that phase three is much more about moving on? Could it be that we know that whatever is around that next corner, it won’t deaden us anymore? There will be low moments, but we know what that black hole looks and feels like, and we know that we’ll come up from it? Moving on, maybe moving with speed? We’ve had a few conversations about if I take to trip to NYC for work that we might take a trip in the City and see the Statue of Liberty…sure, we’ll go grayer (all those people on every side walk… aggressive cabbies!), but I don’t know if I could even contemplate doing this with Demetrius a couple of years ago, let alone consider it from a positive frame of mind first and foremost! Moving from NYC to a conversation about hitting the mall in DC and doing the Smithsonian (might that be too much? Maybe, but not because of autism, but because how long can a 7 and 9 year old hang at a museum?!?).
I like this house, it seems brighter to me than the one in Atlanta. When I walk in the door I don’t feel like I have to take deep breath of trepidation because we might be staring out the window and haven’t spoken to Mommy all day. Coming home is an exhalation and someone running by with his Indiana Jones hat on asking me if I know where his whip is (Mommy has hidden it), or being told I need to change and I’m Darth Maul, and being instructed on how I need to die in a light saber battle. Moving on.
We were lucky to live in Atlanta. There is nowhere better in the world than the Marcus Institute and even if we have an absolutely great developmental pediatrician in the future – she or he won’t be ‘Dr. Amy’. We have some great friends coming to see us soon, and we’ll be making many drives down 75 to see these friends in the future, no doubt. I miss them already. The kids got along and we could spend hours and hours just sitting, watching TV and chatting.
But maybe for phase three to happen, we had to literally move on? We’ve moved a lot in our marriage, professional gypsies, but maybe we needed the literal and figurative to happen for this to begin to take shape?
Who can say if Lexington will yield the friends Atlanta did? Lets check back re: school after next year to see if third grade was a success. But right now I’m a place where it feels that we’ll be able to quickly move on if we hit a few bumps.
Oh, and for you long time readers of this blog, I’ve told you about what happens when I put my headphones on when I fly. Somehow all the pain and frustration hits and leads to tears. Some weird manifestation I’ve never figured out that wigs the shit out of the people in the seats next to, and around, me. And those of you I’m closest to, I’ve promised not to blog about being out of town when Kim and the kids are home alone.
Well, by the time you guys read this, I’ll be back home from a trip to San Francisco. I’m typing this over Colorado and the Rocky Mountains, I’m listening to the Cars, “It’s All I Can Do” from Candy-O, one of my all-time favorite albums. No tears.