Jake's Journey with Apraxia

My husband works for a company that recruits speech therapists for public school systems across the country. One of his co-workers has a blog geared towards SLPs and employment, and in January of this year, I was a guest writer on her site. This particular post has been sitting in my computer for the past six months and I decided to share it on my own blog today. As I re-read it, I realize that we really have come so far in the past five months. Many days I feel frustrated that Jake is not progressing as quickly as I would like, but thank goodness, this feels and sounds like it was forever ago.  

The Kaufman cards flash before his wide, blue-green eyes that peer out from his long eyelashes. Ms. Kelly, the love of this little man’s life, is down at his level, demonstrating perfect sounds and pulling out all of the skills in her bag of tricks that she uses to help children speak. She is trained in the PROMPT technique and touches his mouth, neck, back, and chest in ways that can make the words fly out like magic, which makes a mother, like myself, get teary in an instant. She uses hand gestures that help him say the sound on the end and whispers /p/ and /t/ words.

My son, Jake, is three years and five months old and was diagnosed with Childhood Apraxia of Speech the day before his third birthday. Two days a week, on Tuesday and Thursday mornings, he sees a speech-language pathologist for 30 minute sessions.

After two months of intensive therapy, his mouth is cooperating more and the sounds are getting easier to pronounce. But, it is still hard for him. His eyes still tell me, ‘Mama, this is hard. No matter how many times I practice these words, no matter how hard I try, it’s still hard to say the words that are screaming in my head. And why, why, could I say this word perfectly yesterday, but today it’s no where to be found?’

When it’s time to leave, Jake gives Ms. Kelly a hug goodbye and shouts out a loud, perfect, “Bye!”  He picks out his favorite sticker to take home and then we are off.  After we leave, it is business as usual. Preschool on Mondays, Wednesdays, and Fridays, play dates, taking his brothers to and from school and extracurricular events, grocery shopping, cooking, laundry … all of life’s little distractions rolled into a week that flies by in the blink of an eye. To say the least, reinforcing the words he learns at speech could easily get lost in the shuffle once we leave the SLP’s office.

When we first started this journey, a SLP told me, “You are his mother. You are not his speech therapist. That is my job. Your job is to love and nurture him.” And for a couple of months, I took this advice, breathing a long sigh of relief that teaching him to talk wasn’t my job. But, what I’ve come to realize in this past year, is that if he’s ever going to sing a song, invite a friend over to play, or read a book aloud, I better be there to make sure it’s going to happen.

It takes discipline, hard work, and love, which eventually turns into a habit that feels a lot like normal life. I make him say words for anything that he points to or grunts at throughout the day. I demand that he always gives me his best. I drill him on Kaufman cards on the days he doesn’t have speech therapy. I’ve learned to turn off the television, ignore my household chores, and interact with him by playing games or molding play dough. I research online and talk to other apraxia moms to find out what’s working for their child. I read books and point to pictures, hoping one day he’ll be able to mimic the words that I say every night at bedtime. I have found the right therapy when the wrong therapy wasn’t working. Most importantly, I’ve learned to turn speech therapy into an all day, every day challenge and make the most out of every moment I have with him.

The bottom line is, being the mother of an apraxic child means always doing your best to ensure that one day your child will be able to speak. It’s also about taking a deep breath of patience when he repeats the same word two hundred times in one day because he can’t say the other fifty words he was saying the day before.

But, as our public school SLP told me last year, “Children with apraxia have good days and bad days. The goal is to have as many good days as possible in order to see progress.” Now that we are getting therapy that is designed to beat this frustrating disorder, we are hearing voices up ahead in this silent tunnel we’re trapped in. And I know, if everyone pulls together and works hard, we’ll make it to the end, holding hands, and most importantly … talking.