Thursday, April 7, 2016

Kellen's Fight: Learning To Break The Silence

Kellen was what most would consider an ideal baby. He was an excellent sleeping, happy, and really great at going with the flow. He seemed to hit his milestones on schedule—sitting up at 5 months, crawling at 9 months, and walking at 11 months. As time continued to pass with this amazing, incredible little boy moving forward, we began to get concerned he was still not finding his voice. When we expressed concerns to his pediatrician, we first heard things like, “he’s a boy” or “he’s just a late bloomer.”

However, at 18 months, we made the decision to have him evaluated by our state’s Early On program. It was through Early On that we first heard of Childhood Apraxia of Speech. I remember doing some initial research on CAS (which I had never heard of before) and feeling like so many of the things described Kellen. We started him in private therapy at 2. When he was 3 and half, my husband and I drove to the Kaufman Center where we met with Nancy Kaufman. I remember after we told our families about how the appointment went, there was some, “are you guys okay?” questions and concern. It’s funny but it didn’t really “upset” us to have a diagnosis. Maybe it’s because we kind of already suspected going into it. Maybe it’s because it felt more like a relief to at least know what we were up against. But mostly, I think it’s because diagnosis or not, he was still the same kid we drove to Detroit with; this amazing, incredible, funny, intuitive, observant, loving, BRAVE little boy.

He is currently in daycare 5 days a week but set up to receive speech therapy through the school district 2-3 days a week. He also attends an hour long private speech therapy session twice a week. He works incredibly hard each day to make his sweet voice heard. He speaks in almost all approximations and is just now beginning to put two to three of these together. 

It is tough. It is tough trying to schedule therapy and make time to practice at home as often as we need to when all you want to do is play outside or watch Thomas the Train. It is tough when you see other kids his age carrying on full conversations and he cannot. It is frustrating. It is frustrating when he cries, whines, gets mad but can’t express himself in words. It is frustrating because in the moment it is not always easy to understand why he may be crying, whining, or feeling angry. It is even sad sometimes. Mostly because none of us want to think about or see our sweet boy struggle. 

It is also joyful. I could be wrong, but I feel like we celebrate so much more and find more in the little moments because life is harder for Kellen. It is this constant feeling of triumph over hardships. It is remembering to talk about anything and everything, even if he isn’t talking back, he’s listening. It is about being completely connected and in tune with another human being. It is about understanding the power of actions and gestures. It is about making observations, practicing patience and tolerance, and having faith in the love of family and friends. And now, it is about awareness. It is about helping others understand what our world and the world of those working to overcome CAS is like.