So to speak

In spring 2012 I was trying to predict when Jasper might walk. He was an expert crawler and speed crawler – also called victory crawl, we learned at therapy. He could pull to stand and cruise somewhat but walking was unpredictable. Jasper would turn eighteen months old in August, and that was about my best estimate. With summer on the horizon, I dreamt of walking on the beach with Jasper, holding his small hand in mine, our footsteps making trails together in the wet sand.

Gross motor skills are Jasper’s strongest area. Strongest does not mean avant garde, but he has been within the normal developmental range, usually on the late end. He surprised me one Sunday morning last May when he took his first few steps forward away from the shelf of stuffed animals beneath his bedroom window, stumbled, and fell down. And then got up and did it again. It took time, a few spontaneous steps here and there. Jasper put his whole body and mind into it. Seeing him walk was amazing, seeing him vertical was like a whole new world.

Predicting when Jasper will talk is different. Jasper was approaching eighteen months. By then, children should have about half a dozen words. Jasper had no words and nothing approximating a word, no mama, no ba-ba. His vocabulary consisted of vocalizations, sound effects, “yeah-yos” and raspberries. Until then, I did not know much about speech therapy. The phrase was misleading. What is speech but communication. That is when I became concerned.

A few weeks ago, Jasper turned two years old and is still not talking. In the fall, a speech therapist (SLP) was added to Jasper’s team at school. Come January, at the start of winter quarter, our SLP explained a communication tool called PECS (Picture Exchange Communication System) that she wanted to try with Jasper. Signing was not sinking in. Jasper was not making the kind of progress she wanted to see, and his communication had not progressed “substantively” since he transferred to the infant-toddler program several months ago. So I asked the hard question, Is it time to look for additional speech therapy? And I was left to deal with the hard answer, I think that’s a good idea. Following this conversation, I headed out on my bike for an errand while Jasper was in class. I hadn’t pedaled more than a few blocks before stopping on the side of the street to cry. I did not bother to seek privacy.

I got right on top of it and we met our new SLP about a week later. Our first appointment ran well over an hour, as they often do. I wanted to believe language was near, right around the corner, that Jasper’s “WUH-buhs” and “bibble-BEEs” were inchoate words, perhaps “what’s up” and “bumble bee,” respectively. Our new therapist mostly watched Jasper play, and wander around the room. To adults, it is wandering; for Jasper, it is likely something more. Mapping, moving in order to use his vision, the method he has come up with for learning about a new environment. She described the different levels of play – play, so critically important in all of this – and the many steps that need to happen between now and words. Functional play, shared play, imitation, turn taking. Jasper is still rooted in sensory play, at the beginning. I had thought, hoped, maybe six months, by summer, by two and a half, Jasper will be talking. By the time we leave, I understand that words are a long way off.

With Jasper, it is not only about talking, or words. It is about communication. I did not request an initial speech evaluation because Jasper was not talking. I requested it because Jasper does not try to communicate. When he is hungry, or not hungry, or wants his bottle, he resorts to crying, fussing, whining, leaving me guessing, trying to interpret him. Often, it leaves me exasperated.

There are lots of ways to communicate. Pointing is a form of communication. We do not have pointing. In children who are visually impaired, imitation behaviors, like pointing, are often absent or delayed (Roman-Lantzy). For Jasper, I want to believe it is delayed. He cannot or does not point to what he wants, or sees, or what interests him. Like everything else, we practice pointing. I hold my arm up close to Jasper’s eye level and extend my hand toward a yellow ball, one of his favorite objects, nearby. Occasionally his gaze will follow, he locates the ball, and retrieves it. Other times, he loses visual interest, gives up and moves on to something else. Looking at books together, his hand atop mine, we hold our forefingers in a pointing position. We point at animals, toys, photos of family. When playing with Jasper’s iPad, we again hold our fingers in a pointing gesture. After a while, he reaches for my hand to hold and help him, as if my hand combined with his was required for the act of pointing.

There are the well intended comments. There are other ways to communicate besides talking. He’ll start yapping away and then you’ll wish he didn’t talk! Regardless of intentions, these are not helpful things to say to a parent of a child with special needs. From day one of a diagnosis, parents wonder if their child will crawl, walk, talk, feed himself… or drink from a cup, point at a bird flying by, look at my face, wave bye bye, recognize mommy from across a room. I long to hear my son’s tender, babyish voice. I imagine his babble drawn out into words, talking to me, asking questions – telling me what he sees.

Two speech therapists. One SLP pushing for twice weekly sessions instead of once a week. A five week long Parent Education class for parents of children with speech delays. The kids range from two and a half to three and a half years old, and have anywhere from ten to thirty words. Jasper is the youngest by about six months and the only one without words. The other parents understand, they have been there very recently. The instructor gives us tools, bring your communication way, way down, especially in Jasper’s case. Slow down, keep it simple, statements not questions. Learning a new way to communicate, so that one day Jasper might learn too.

From the archive. So to speak was originally published March 5, 2013.