My wife and I have three children. Two of them never stop talking. At least, that’s how it seems to us. They babble about everything. They talk so much half the time I don’t even know what they are talking about. It’s easy to tune them out because THEY NEVER SHUT UP. But we have one child who never says anything. On the rare occasion when she puts two words together, we celebrate.
Eleanor is not a baby. She’s four and a half years old.
Eleanor has a neurological disorder called Childhood Apraxia of Speech (CAS). CAS is a condition in which a child is unable to consistently produce the motor functions required for speech. Speech seems so simple to those of us who can talk, but for a child (or adult) with apraxia, the process is laborious and incredibly frustrating. Speech, after all, is quite complicated. One must force air out of the lungs. Engage the larynx. Open the mouth and use the lips, tongue and teeth to create specific sounds, constantly changing the shape of the lips and position of the tongue. To vocalize a single thought requires a great number of combinations of lips, teeth, tongue. And air. Let’s not forget the air.
Most of us learn the shapes required for specific sounds. We learn how to combine different shapes to produce syllables, and we never think about them again. For a child with apraxia, these shapes have to be learned and relearned and relearned and relearned. And then we start adding new shapes so she can use more than one word at a time. All this takes years of intense therapy to program the brain to do what most of us do without the slightest thought.
Imagine that you are asked to play your favorite song on an instrument you do not know how to play. That’s how apraxia affects my daughter. She knows the song, but she doesn’t know how to play the instrument. The problem is that the instrument is her voice.
Early in this journey, I found myself becoming embarrassed during casual encounters with acquaintances or, even strangers. Don’t get me wrong. I’ve never been embarrassed to be Eleanor’s dad. But I felt like I had to explain why my two and a half year old daughter was drooling like a six month old baby, why my adorable three year old girl couldn’t tell you her name or how old she is. I found myself offering unsolicited apraxia education to other parents at the park and apathetic checkers at the grocery store. I felt like people would judge us as being inept parents. Who has a four year old still in diapers? Who lets their kid make that big of a mess when they eat? What kind of parent doesn’t teach their kid how to talk?
Here’s the conclusion I’ve reached. I don’t have to apologize for my child. I don’t have to offer an explanation. I don’t have to worry about what other people think. I can celebrate my child and everything that makes her who she is.
When it comes to Eleanor, there is a lot to celebrate.
Eleanor is probably the most loving child anywhere on the planet. And I mean that. She has a way of making everyone feel like they are the most important person in the world. Eleanor is the one who looks for me when I’m at work. She’s the one who taps her mom on the leg, and holding her hands out in question says, “Da-e?” Meaning, “Where’s Daddy?” Eleanor is the one who squeals and runs to meet me at the door when I get home. She’s the one who climbs all over me until I swing her in the air. Then she sits in my lap and kisses my cheeks – left, right, left, right, left, right. And then she straightens my face, aiming for the lips. If I turn my head, she will chase me around with lips puckered until I finally surrender.
Eleanor is determined. She runs to meet her therapist, four times every week. She is tough. (Kids with apraxia are unusually clumsy, so she falls down a lot.) She is patient. She doesn’t get frustrated when we don’t understand. She points and repeats her best effort at the word she wants to say. She takes us by the hand and leads us to what she wants us to see.
She has good ideas. At her preschool, she made up a game. The kind of game that made her teachers ask, “Why didn’t we think of that?” Now they lead all the kids in playing Eleanor’s game. She can’t talk, but it doesn’t mean she isn’t thinking.
I don’t like apraxia. I hate to see my daughter struggling to produce monosyllabic sounds. I hate it that she can’t tell me how she hurt her foot or why she is scared or what she is so excited about or what she did with her friends at preschool. I hate it that she has to spend so much time in therapy every week. But I love her, and I am very proud of what an incredible, little human being she is.