Saturday, January 28, 2012

Struggling with Apraxia by Tori

I have decided that, on occasion, I will ask someone who is much more of an expert in the field of special needs than I am.  My manager and his wife, Tori,  are struggling with their youngest child's diagnosis of Childhood Apraxia.  So she agreed to write the following piece for me:

Speech Therapy - It Doesn’t Stop When You Leave the SLP’s Office

The Kaufman cards flash before his wide, blue-green eyes that peer out from his long eyelashes. Miss 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 an apraxia specialist 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 Miss 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, meal 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, an 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 sit with him and play on the computer as many times as he wants. 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 and then counting to ten to calm your nerves, when he repeats the same word two hundred times in one day because he can’t say the other fifty 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. 

You can read more about Jake at


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