My son is by all accounts a normal boy. More than once in his short life, we have either said or heard, "Boys will be boys" when referring to Max. He loves to play, dance, and laugh. He especially loves cars. Wait. Stop. Loves is not a strong enough word--he's obsessed with Disney/Pixar's World of Cars. He sometimes hits his sister, and he's 100% a "mama's boy."
For the most part, his development was normal. He rolled over and walked on time. Nothing really pointed to anything being significantly wrong with him except at his 1 year well-visit when his pediatrician seemed surprised that he wasn't talking at all yet. We hadn't been too concerned. We knew in general boys seemed to take more time before talking, and after all he had a big sister do all the talking for him. He was just a quiet baby.
Despite the encouraging words of others like "he'll talk when he's ready," "he doesn't have anything to say yet," and "my son didn't talk until he was three--I think," I accepted an evaluation from ECI (Early Childhood Intervention) at 18 months. As a teacher, I knew how important early intervention is, and if something was wrong, I wanted to catch it and deal with it quickly.
The evaluation seemed simple. I proudly answered questions about Max, told funny stories, and bragged on his accomplishments. Unfortunately or fortunately, Max showed delays in expressive and receptive language. They recommended two therapeutic visits a week, one with an early childhood educator and one with a speech therapist.
"Are you sure he understands you?" the speech therapist asked.
"Yes. He'll come when I call his name. He'll follow short, easy instructions." The evaluators seemed skeptical, so I had his hearing checked.
It was fine. The tests showed that Max heard everything clearly. I felt vindicated and relieved. See, I thought. They're so wrong. Max is fine. He'll talk when he's ready.
At his first speech therapy visit, I proudly showed her the report. "See. He can hear."
The speech therapist wasn't quite as excited as I was. "I think he might have apraxia."
"What? What's that?"
She sighed. I could tell by her hesitation that apraxia wasn't a good word. "I can't really diagnose him. Not until he's three, but he sounds like other apraxic children."
She explained to me a little bit about it, but then she started backpedalling. "I'm not at all saying that's what he has. He'll probably start talking very soon." She smiled. I wanted to believe her, so I put the apraxia word out of my mind and refused to google it.
Max saw his therapists twice each week. They were supportive, but success and progress were slow especially since we were in the process of moving to another state. We'd have to start the ECI process all over again.
Once we moved, Max started therapy in Colorado. Progress continued to move slowly. He could say, "Mama," "Buhbuh" (for bye-bye), and "Nuh-nuh" (for night-night). He learned some sign language and communicated specific wants using pictures. His Colorado therapist referred to problems with motor planning, but I didn't think motor planning issues were a big deal. From what I understood, one could overcome and learn motor planning skills.
In May, Max had is IEP evaluation meeting with Child Find. We sat at a large conference table with members of the school district special education team. I felt comfortable. Special education was an area I felt comfortable with because I had participated in IEP meetings before.
That's when I heard it again.
"I think Max has severe apraxia."
What? The room started spinning around me. I tried to hold back tears and maintain a positive demeanor. The speech therapist continued to talk, but her words fell flat. I wasn't listening. I was saying goodbye to all the preconceived notions I had about my son and his condition. I knew he wasn't going to talk when he was ready. He wasn't going to talk for a very long time. He wasn't going to sing opera like I secretly wanted him to. He was going to struggle, really struggle.
I watched Jedidiah ask a few questions. How serious is it? What do we need to do?
I went back to my classroom at the high school. I still had twenty minutes before I had students. I had to find out if his therapist suspected the same thing. I furiously typed an email. This just wasn't fair.
"I didn't want to scare you with a word like apraxia. I said motor planning because it seemed easier to process," she explained. "I do think he has severe apraxia."
I started researching like mad. I kept working on end-of-the-year school stuff and finishing up the yearbook, but everyday I spent time learning about Max's issues.
That was only a few months ago. Max has continued therapy and started on fish oil. Since then he can approximate the word "banana." He's learned more signs to help eliminate frustration. Many times he invents his own. I laugh when my in-laws and friends ask me what his gestures mean.
Many times I simply shrug.
"I don't know. That's a new one. I kind of think of it like an elaborate endless game of charades. Guess what it is. He'll nod if you're right."
