Family Nature

Stutter

My ten year old son stutters. He always has. When he first started talking he’d stutter from time to time. “It’s normal” we were told – and it certainly can be. When kid are learning to talk, stuttering is fairly common as they learn how to make it all come together: words, breaths, sentences and the way your brain sometimes wants to get words out quicker than your mouth will allow. His stutter came and went. Even when it was around it wasn’t very obvious. Most people didn’t even notice it.

The spring when he was nine was when we noticed his stutter worsening. All of a sudden Mr. FamilyNature and I were like “when did that happen?” It was almost overnight. The stutter was there, and it was obvious. What used to be something subtle was now right there, in every sentence. Still worse at times than others but now it was always there. People started noticing. At times, we even had trouble understanding him. By the time the summer came we figured it was time to have him assessed.

Phone calls, waiting lists, lots of questions … I spent a lot of time at the end of the summer trying to find an OHIP covered option for assessment. Finally, when September came around and I found out to have him assessed through the school would be a year-long wait, we decided to pay for a private assessment. I can’t remember the exact amount but it was over $200 and it was money well spent. We finally had an official diagnosis in hand: “moderate severity of stuttering characterized by blocks, sound repetitions, prolongations and secondary characteristics including eye blinking, and hand and body movements.” Now we had to get him on the waiting lists for speech therapy; more phone calls, forms and waiting. Lots and lots of waiting.

The waiting hasn’t been all bad, though. It’s given us time to think about this more. We’ve also had the chance to connect with other stutterers; and I don’t know if I would have sought out these connections if the speech therapy had been readily available.

Peter Joynt is Ottawa rapper. I connected with Peter when I read an article about him on Facebook. He’s a life-long stutterer who, when he raps, is perfectly fluid. I haven’t met many stutters in my life and at this point I don’t think my son had ever met one. In fact, one night around this time we were watching Dragon’s Den, a group was making a pitch, and one of the presenters had a stutter. My son’s head whipped around and he looked at me. I think that maybe, up until that moment, he’d never heard another person stutter. His face lit up and my heart broke just a little bit.

When I sent Peter an email thanking him for speaking publicly about stuttering he replied. Not only did he reply quickly, he replied with an offer of support. He and I have exchanged many emails, and he’s talked to my son on the phone. I doubt Peter knows the impact he’s had on us. For me, as a gleaming example of how we should all be: generous and giving, willing to help others. And for my son: as a cool guy who stutters, and who hasn’t let that stop him from doing anything.

Peter also connected us with a local stutter, 13 year old Jake Zeldin aka Lil JaXe. Jake is also a rapper who stutters. My son and I met him and his mum (coincidentally, the same day he rapped for Drake backstage after a concert). I’m telling you, that little dude is an inspiration. With his you tube videos that kid is well on his way to being famous, Justin Bieber-style.

Meeting these people and having a chance to think about all this leads me to this: I love my son, I accept him for who he is. He is not broken; he does not need to be fixed. He can take all the time he needs. I will always be here, listening patiently, never finishing his sentences. He is smart, he is fantastic, he has so much to offer. He is exactly who he is supposed to be.

But then it also leads me to this: Not everyone is kind and patient. He will be judged. He will be teased. I don’t want him to be afraid to speak. I don’t want him to dread answering the phone.

I read a lovely and eloquent article by Nathan Heller, The Stutterer, in which he writes:

Stuttering, in my mind, is a word that conjures beiges and grays: the feeling of always being lusterless and square in conversation; of woozy headaches brought about by gasping through my sentences; of childhood boredom in stuffy, cork-tiled offices where speech therapists told me to slow down and read long lists of words aloud. Somehow, I never wanted to slow down, and still don’t; and in this respect stuttering also signifies a bargain I have spent adult life trying not to make.

and

In the seventh grade: A substitute asks the class to read out loud, and when I stumble over my first sentence, she inquires of the other students whether I’m “OK” and “always like this,” and while I continue fighting with a pr sound, my ears tune in to every judging shudder in the room—the creaking chairs, the restless exhalations, the uncomfortable shifting, in the desk beside me, of a girl with many colored pens who seems to me in some way very beautiful. In high school: A medical assistant taking down my charts asks whether I just have a problem with my speech or whether there is mental retardation, too. (“As far as I’m aware …” my answer begins.) In college: I slow down several seminars trundling through fragile language meant for clever tongues. And so on. In each case, what I feel most impelled to explain to the people who can hear me is just: This is not my voice.

Go read the article. It’s so good. It’s a really interesting (and somewhat heartbreaking) account of stuttering from such a personal perspective.

What’s in store for my boy? I’ve heard mixed reviews about speech therapy for stutters. It’s a huge commitment:  weekly appointments in blocks of 10 to 12 weeks, which would have my son miss a lot of school and for which we’d have to do some major schedule-juggling; practice at home – where we’re lucky if we’re able to carve out a few minutes of one-on-one time with each of our four kids. We’ve been on three different waiting lists for almost a year: through the school, at Sick Kids Hospital and at The Speech and Stuttering Institute.

This week we got a phone call from a Speech and Language Therapist letting us know that our son is going to start speech therapy through the school this week. The good news is that the SLT comes to the school, so for now we don’t have to worry about getting our boy downtown every week for an appointment. The bad news is that because of budgetary restraints, he may only receive one block of ten sessions (not nearly enough). But it’s what’s available now and we’ll take what we can get. It’s a start.

We told our boy about the upcoming meeting with the SLT and he smiled from ear to ear. He told me he’s excited about it.

Me, I feel surprisingly emotional about it. I’m happy about it. I’m glad that we only (only?) had to wait eleven months. I’m glad that he’s excited about it and that he is open to the idea. But I worry that he’s excited about because he thinks it’s a cure. There is no cure for stuttering. Even for the most committed patients, the results of speech therapy seem mixed. It works for some, but not for others. For most people stuttering is a life-long condition. The goal of speech therapy is to give him tools and tricks to cope with his stutter. I just hope my boy isn’t disappointed with the results.

Is there a balance? Something between weekly speech therapy appointments – stuffy, cork-tiled offices – and sharing one’s voice without the fear, shame, judgement and everything else that goes along with it? I hope there is. I hope we can find it.

Photo by versionz via flickr.