Childhood Apraxia of Speech: Living in Silence
Photo: Jessika Savage If you had asked me what I envisioned motherhood would be like when I was pregnant with James, I, like every parent in the world, definitely would have described a very different world than the one I live in today. I probably would have told you James would be an only child, but SURPRISE when I was exclusively breastfeeding my baby who was a product of fertility treatments, I got pregnant! I probably would have described how my home was going to be full of books and questions. I would have told you about how I would patiently explain the answers to the world of questions my perfectly clean, and articulate two year old had to ask.
Fast forward two years later, and my world with my little boy – well… it's silent.
For me, the most outspoken, overly analyzing, over explained girl I've ever met – the silence it's deafening. In my world, my child was born without the ability to speak. My son has something called Childhood Apraxia of Speech and his case is considered severe. In the best description I can give you, my son has a hard time with motor planning – meaning he understands everything, he even knows exactly what the words he would like to say sound like, but somewhere in that little brain of his there's a misfire and he can't make the muscles in his mouth make the sounds. He is literally trapped in his own little brain, desperate to tell me what he wants, thinks, knows, and feels, but totally and completely incapable of even calling out my name. This leaves my little guy miming, and pointing and grunting. It leaves him frustrated sometimes to the point of crying, and sometimes he just gives up trying to tell me what he wants me to know. It makes my heart break a little more every time I watch him give up trying to show me what he wants or needs or has to say.
The outlook is pretty unsure. I've brought James to numerous pediatric neurologists, developmental pediatricians, speech language pathologists, and a variety of other professionals. They all tell me his cognitive testing is way above average and they all tell me he is not autistic (this was my original fear, and apraxia is very often misdiagnosed as ASD). But the questions no one has answers to are the daunting ones…Will he talk? When? Will we be able to understand him? Should we teach him to sign? (We do sign) Should we use an iPad communication program? How will I actually know if he knows how to read? How do you potty train a nonverbal child? Can he go to a regular public school? Do we need a special ed school, or will Montessori work? Will he be able to make friends? How much therapy does he need? Will insurance cover it? Can we afford it? What causes this? Could my other baby have this too? They also can't answer the big questions about my child I wish I knew the answers to…What kind of ice cream does he prefer? Does he want milk or water? What's his favorite color? Does he feel okay? Is he scared? Why is he crying?
I hate to make this sound like it's about me, because my world is all about James, so much so that I have to remind myself to make sure my younger baby goes to a music class or to a play group of her own because she is so often just dragged around to the millions of appointments I bring James to. Sadly, I know someday she will be one grade behind him, his baby sister, but she will likely have to speak for him, because he will not be able to tell someone what he wants or needs, or he will make a sign or a sound that maybe we know in our little home and family, but no one on the outside would have any idea what on Earth James is trying to say. And with those thoughts, I cry for both my kids, because they have each other, but also because James will have to find his own way or make one in this world, because it is a long and scary road ahead.
With all of this though, we have a happy home and family. I have also found myself to be more of a fighter than I ever really thought I could be. I admit that on most nights my husband rolls over to find me deep in research, looking for a new doctor, a new treatment, the right school, the best options, on those nights he finds me feverishly typing away, making a plan and figuring out how I can make that plan happen for my kids. After the really bad days my husband rolls over to find me not tucked in our bed but sobbing and hopeless in the dark on the bathroom floor, deeply wanting to keep the sobs and hopelessness as far removed from my kids and family as I can. On those nights I feel like I understand James the most, that I truly get how sad and scary and lonely it is to be screaming out for help to have no one know what you are saying. On the mornings after those nights I pick myself up, I wash my face and I pick up my kids and I hug them as tight as I possibly can, I take their little faces and kiss them all over until they are giggling uncontrollably and pushing me away. I remind myself that I am hopeful, I'm a fighter – I will find a way.
There are a few things that give me hope. I am blessed with more amazing friends than any mom could really ask for, friends who love and support my family, and friends who know when and how to make me laugh, and when I need a stiff drink! My husband is one of the most likable people on the planet (me, not so much!), and somehow James inherited that trait from his daddy. James has a goofy little grin, he loves babies, and he shares well. I can't take credit for any of these things, as I still don't share well. I was blessed with a neighbor two doors down from me who is my real friend, the kind of girl who really appreciates a sarcastic comment, and who is always a good drinking buddy. She also has a little boy who is six months older than James, and her little boy, Max, gives me true faith in human beings and the kindness of children. Max is quite possibly the exact opposite of James in many ways. He is the most verbal two year old boy I've ever met! He speaks in complete and totally understandable sentences, and he talks nonstop. And maybe because of this, Max and James are best friends. Max is constantly asking to show James things, to play with James, to come to our house, for us to come to their house. Max plays nicely with James, they share their toys, they show each other things. Somehow in these interactions Max is the narrator, explaining every step and detail to James and the world, and James is laughing and understanding and not saying a word. I hope Max will always be that friend to James, I hope they grow up to be lifelong friends. I am thankful every day for the kindness of that two year old down the road, he makes my little boy's life better and we love him.
I also will say I'm lucky enough to be pretty good at a lot of mommy stuff. I can breastfeed like a champ. I cook all the meals in our house and I love doing it. My friends never want their husbands to hear the huge menus I plan and execute upon my husband's request or because something good was on sale. I can trek two kids anywhere, and it never seems hard. I can handle a fussy baby, and live on very little sleep. I love children. I love children's books, and have taught hundreds of kids to read. Finger paint, and play dough and colored pasta – I make all that stuff. I know a lot about schools and was a teacher in my younger days. In college I tutored poor kids, and usually ended up with the downtrodden kid on my lap teaching him letters and sounds. I spent my teenage years babysitting for every child in town, including a family with 5 children under the age of 6, I adored them all. I remember my dad saying to me just before James was born that he knew I was born to be a mom. I believed that too, I never had a day in my life when I didn't want to be a mom, and not just any mom, but the best mom.
Now that I am a mom, and not just any mom but James' mom (Anna's too), I know that everything I ever did in my whole life was preparing me to be James' mom. Come hell, high water, or kindergarten, I will find the best way to fix this for my child.