Tomorrow’s the last day of Autism Awareness month. I haven’t posted in weeks. It’s not that I didn’t want to, it’s just that there’s so much to say and so much going on in everyone’s lives. I suspect each one of you is also having trouble articulating thoughts and feelings. For me, the feeling of anxiety and worry comes in waves. This weather does not help. And let’s face it, this is the first pandemic we’ve all been through; I’m not even sure what to think, feel and do. It’s made me want to keep to myself.
Putting all of those feelings aside, I’ve also been filled with laughs, pride, and admiration. As I type this, I’m sitting across the table from Tommy who is in the midst of his Speech group via Zoom. If you were sitting here with me, you could look around our dining room and see academic schedules posted on the walls, social stories taped to a chalkboard easel, schedules to velcro routines to, work routines stare as reminders of expectations, and laptops are sprawled across the table. It’s overwhelming. It’s overwhelming to me, but it’s so comforting and grounding to Tommy. I would be remiss if I did not tell you that I did not create a single “tool” used here to homeschool Tommy Pickles. The staff at the Collaborative where he attends school is absolutely nothing short of amazing. They have called, Zoomed, emailed, consulted and dropped off everything needed to bridge this unprecedented isolation and the life we knew just a few months ago. He hasn’t missed a single service, be it speech, OT, counseling, academics, physical education; amazing.
Eric and I weren’t quite aware of the extent to which Tommy was missing his routine until last week, when I heard him saying “hello” repeatedly from the playroom. I knew he had been working on Nintendo Wii incessantly for a few days, but I assumed he was boxing, bicycling or playing baseball against the computer. That’s what my other two spies reported, anyway. As it turned out, that’s not quite what he was doing all of those hours in solitude. Tommy obviously spent a great deal of time creating a Mii (Nintendo version of an avatar) for each of his teachers, therapists, nurse, classmates and yes, even George. If you’re familiar with Wii, you know there is a “lobby” where Miis gather before a game is selected. Tommy found great comfort in sitting on the couch greeting each friend from a lost routine as they appeared across the screen. When I walked in, there he sat waving and stimming with so much joy.
It was amazing to me to “see” Tommy’s perceptions of the people who are so crucial to his daily life. For the most part, the Miis look very similar to their real life counterparts. I was pleased he sees me slimmer than I am, that’s 10 credits for you, my friend! The Mii Tommy created for himself is black, bald and wears glasses. When asked, Tommy is adamant that’s what he looks like. It was also amazing, and perhaps astonishing, just how much Tommy was struggling with this “zig zag” to his daily life. He craves order. He isn’t able to articulate what he’s thinking or feeling, it spills out in asteroid facts and Nintendo characters. I wish I understood his world and how it operates.
There’s also been a significant uptick in the running scrip Tom has in his head. Any interruption to that visibly makes him upset. The moment he can, he’s right back to the script. One would think he’s talking to himself. Tommy doesn’t really talk to anyone nor is he creative in dialogue. For example, I overheard him playing with Mr. and Mrs. Potato Head in his room. “It’s so nice to see two people in love!” At face value, awwwww. I know better, it’s a line from a Pixar short on Disney Plus, “Forky Asks a Question.”
We’ve also had plenty of moments I will treasure. I would not have them if we weren’t at home through all of this. We’ve laughed until we’ve cried, we’ve painted rocks, made chalk drawings to brighten people’s days, played soccer and baseball, watched movies, and ridden bikes. As the weather warms, there’s so much more for us to explore together.
Occasionally, a wave of emotions will unexpectedly hit me. I cried when Tommy’s shipment of pull-ups arrived from a medical supply company. He’s 8, it’s hard. I panicked momentarily when his feeding tube formula was delayed in shipping due to work shortages. And I break out in hives each time get a phone call from his critical care team at MGH that are just checking in to see how Tommy’s doing, along with the rest of us. My “Mom Tribe” has validated what I’m feeling (regression, isolation, frustration) without even having to articulate it. I’m so thankful for them.
I’m not sure what the next few months will bring not only for our family, the people most important to us in our lives, or even the world. But what I do know is that this time has reminded me once again how very lucky Eric and I are to have Tommy as our son. He has brought some of the most amazing people into our lives through their work with him. We truly could not be any more grateful.
Sidenote: Since Eric colored my grey roots (fret not, we used salon grade hair color not the boxed shelf stuff), Tommy has changed my hair color in Wii.