We’ve always said, if we told people the name of Isaac’s genetic diagnosis and they googled it, they would find a very different picture from what we know of our son. This was one of the reasons we chose initially to keep his diagnosis private. (See A Rare Diagnosis.) What does provide a helpful description is developmental dyspraxia, a significant piece of the puzzle that explains Isaac’s challenges in gross and fine motor skills and speech. (Although when Isaac was young, many doctors were not familiar with developmental dyspraxia, either.) 

An interesting little anecdote: the actor who plays Harry Potter, Daniel Radcliffe, also has dyspraxia, though not to the same degree of complexity.

Even before we learned Isaac’s diagnosis, we knew his gross and fine motor skills were delayed. But I clearly remember thinking, surely speech would be a strength. It has always been one of my strengths. He was growing up in a language-rich environment. We read to him, and we were both good communicators. But once we knew Isaac had an XY chromosome variation, we knew speech therapy would be another part of his story. 

First words

As with so many other milestones, Isaac was tiptoeing around the edges of typical language development. When he was 12 months old—to the day—I was nursing him for the last time, and he leaned his head back and very clearly said, “Mama.” He didn’t repeat it or speak any other words for a long stretch, so maybe it was an accident—but it never felt like an accident to me.

Several months later, when he was around 17 months old, Isaac stood up on the couch and pointed right at Todd, who was coming in the back door from work, and very intentionally said “Tha tha” (Da da). There was no mistaking it. And there was no “he-said-my-name-first” game, either. Every word—every syllable—felt like a miracle. 

I remember sitting around the table with our extended family and watching Isaac’s face while we played a little game. We would say someone’s name and then pause, and Isaac would look directly at the person whose name we called. “Grandma” was different from “Granny,” and there was no doubt he knew everybody’s name. He was learning and building relationships, even if his expressive language didn’t yet register.

We started working with a speech therapist shortly before Isaac turned 18 months old. He was right on the verge of an official speech delay. The words didn’t come quickly or easily, but they did come. “Ball” was the first word to follow “Dada,” and for a long season everything round was a ball. (To this day I still think of water towers as “balls,” as Isaac pointed them out on all of our car rides for years.)  

With assistance from his speech therapist, we were also teaching Isaac sign language to be able to communicate basic needs and desires, like “more,” “milk,” “hungry,” and “ouch.” At one point around age two, Isaac knew about 50 signs. 

Apparently, some parents fear that teaching their kids sign language will prevent them from learning to produce speech, but the reality is that all language development stretches the same learning muscles. Learning signs to communicate, in other words, actually helps kids with speech. (In hindsight, I wish we had kept learning and using signs after Isaac started talking, but we didn’t. We had a lot on our plate back then, and all of the stakes felt high.)

A marvel

Despite the title of another recent post, He’s not sick, Isaac was sick a lot when he was young. From the time he was 18 months to two and a half years old, he had 10 ear infections in one year and coughed until he threw up almost every night. Pediatrician #7 (who we love and who is still our doctor) finally got us some answers and relief with a diagnosis of cough-variant asthma, yet another condition we’d never heard of before Isaac.

One of my favorite early Isaac stories came on the early end of that tough chapter, when he was 18 months old. He was crying out from his room, and when I walked in, I found him standing up in his crib. He stopped crying, put his pointer fingers in both ears and then touched his fingertips together, the sign for “ouch.” Message received. I took him to the pediatrician (#5), and sure enough, he had a double ear infection. She marveled that any child his age—speech delay or not—could communicate what was happening so clearly. 

So much was hard when Isaac was young, but we did have these intermittent signs of hope. And that’s how it’s always been with our Isaac. We don’t always know what to expect. But he is a marvel, an original, his own person, down to his DNA.