I’m more likely these days to celebrate Tariku’s triumphs on this blog than I am to explore our day-to-day challenges. I’m not sure why that is. Maybe the successes are just clamoring louder to be written.
But I got an email the other day from a woman parenting a child who also has Sensory Processing Disorder and PTSD. She told me that she had combed this blog for more about our struggles and had only really found the “everything is so much better” stuff. Better than what? What was it like? Please tell me, she asked.
Things are remarkably different now than they were a few years ago; it’s true. But I don’t mean to misrepresent the situation. Here’s a little snapshot:
T rises from his pillow at 5:30 like a hummingbird who has just smoked methamphetamine. That’s how he rolls all day, until we strong-arm him into bed. He wakes up with approximately one-hundred-and-forty-three questions about cloud formations and tornadoes and Cuba and sharks and death and, and, and… He’s extremely bright and curious and hilarious, but will take almost no direction. Whether it’s baking a cake or doing math or playing a piano concerto, he knows how to do it. His favorite word is no, accompanied by an impressive eye-roll. When he gets over-stimulated, he has no sense of his body in space and very little impulse control. He literally climbs the walls. They have the scuff marks to prove it. He wants to be in control of absolutely everything, including the time and the weather. It’s sort of like living with a cross between Iggy Pop and Fidel Castro.
I love every crazy minute of my son; I truly do. Just the other night we were on the bed together and I was reading while he watched TV. He reached over and took my hand. We held hands like that, while doing our own thing, for the longest time. I swear it was one of the sweetest things that’s happened in my entire life. But I don’t want to mislead you into thinking that he suddenly turned into Shirley Temple overnight.
Much of our life is still spent negotiating therapies and school intervention. Most nights I still wake in a panic at 3am, worried for him.
In fact, this morning I was just on the phone with a new counselor, who offers some innovative therapies. I talked to her about T’s trajectory thus far.
“Did you ever try so-and-so pre-school?” she asked.
“No. We heard about it. We thought about it.”
“That’s too bad. It would have been a really good fit. Their forte is working with extremely bright children with social and emotional challenges. Maybe they could still help you with an after school group. I want you to call them.”
“I…I…I don’t remember why we didn’t. It was so confusing at the time,” is all I managed to stammer.
The rest of the conversation was encouraging. We set up an appointment for an intake. I chirped something about so excited to see what the future holds and then hung up.
I put the phone down and sat, staring at the website of the special needs pre-school he didn’t attend. We’re very happy with our school now, but it looked like it would have indeed been perfect a few years ago. And even though I had already loaded on my mascara for the day, I began to weep.
The essential thing I forgot to do. The thing thing that would have helped him. And I missed it. I failed my child.
Which sends me right down the spiral of… at what am I failing right now that I’ll have to answer for at a therapist’s office in three years?
Scott’s guru guitar teacher showed up at the house as I was in the midst of this. I answered the door and actually cried on his shoulder. I barely know the guy.
He asked me tell him what was going on. So I did.
Have I mentioned I barely know this guy?
I can’t imagine what Scott was thinking. It was truly bizarro of me. But sometimes you gotta just be where you are.
“I’m not doing enough,” I sobbed. “I’m doing the wrong things.”
“Are you willing to let that story go? “ he asked me. “Because that’s just a story you’re telling yourself.”
It’s a story I often tell myself. And it’s true I’m usually getting something wrong. It’s true there are plenty of great avenues of help that we’ll never find. But all three of us are seeking help with such hope and dedication. It’s not ever enough, but it’s our best effort. Just look at our little Iggy Pop. He’s learning. He’s making friends. He’s growing all the time. He’s a wild, white-hot ball of pure love. He’s perfect. And I will fail him many times before this gig is up. But that’s just one story. There’s another in which we’re all heroes.
I deeply relate to the desperation and confusion of the woman who wrote me the letter. This isn’t an answer at all. It’s just a story about my morning. But I hope it helps.