One year ago my husband and I hovered over my 3 year old son’s bedside in the PICU making deals with God, the Devil, anyone who was willing to get our son to open his eyes and talk to us. A murmur, a whisper…anything would have sufficed. I can say without a shadow of a doubt it was the longest day of my life. At 8:00am that morning, JD had woken up and began to seize and he did not stop for 2 and a half hours. It was the beginning of a crash course in everything Epilepsy and SPD.
That morning the attending pediatrician fired every question at me. Meds? No they are high, locked up. Cleaning fluids? No they are locked up as well. I assure you doctor we are child proofed. Anything like this ever? Any significant behavior changes? He screams at the TV! When the words escaped my lips I couldn’t believe I said it, it sounded so silly, but I went on. I explained when he would watch the Mickey Mouse Club house he would scream uncontrollably when Goofy would fall. And his temper, JD goes from 0-60 in no time. He hates buttons. He rubs his belly on me and relentlessly rubs my upper arm. He breathes heavily into Daddy’s ear and then rubs Daddy’s earlobe. He can’t transition. Okay. That was all he said. I said the same things to the Neurologist. I asked him does that mean anything. I have told the pediatrician about it and he said if it didn’t go away by 3 and a half, we’d look into it more, he’ll be four in a few weeks, some of it got better, but there’s a lot there still. Okay. He said too. JD woke up that evening. He smiled and said “Hi Mommy.” Our boy was back.
After that it was “Your son has Epilepsy. Here are the treatment options, see us in the office in a few weeks.”
Prior to that follow up neuro appointment, JD had an annual checkup. I cried when I told our office’s PA what happened. God love her, she was amazing. Older woman, a young mother of three once, like me (I was pregnant with number 4). She said “Let’s have him see our developmental nurse.” We did, that nurse said “Let’s get him to OT.” OT said “He has Sensory Processing Disorder.” Truth be told, I knew what it was. A year prior when JD began to scream at Goofy, I knew something was not right. As a Mommy, I knew in my heart it wasn’t right. So I looked it up, I read it and I denied it. He’ll be better by three and a half, I reminded myself.
This past year has been, well, crazy. After a disastrous week at a private preschool, JD was evaluated by the county and placed in a special education setting where he has grown and thrived. We still hate buttons and our belly and feet are our favorites for sensory seeking. I was so frustrated after again talking to the neurologist about JD’s SPD. I wanted to know if they were connected, he politely dismissed it.
I found a new one, a DO. On our first visit, I told him: JD has SPD. He leaned forward and said “Tell me all about it…” We don’t know if the two are connected, but it’s comforting to know that it’s at least considered.
It’s been a long road. It continues to get longer. But I am strapped in and ready for the long haul : )