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Feeling 'Lost in the Shuffle' as Parents to a Child With Dyspraxia

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Our story began like many others. After an uneventful pregnancy and a relatively easy labor, I gave birth to a healthy 8 pound 9 ounce boy on May 20, 2011. Our sweet Ryder progressed as all the charts said he should, met all the milestones, gained weight and height toward the top of the charts, and started walking at 9 months. At around 10 months, he began to say “cat” very clearly; since we have two cats, it was a natural first word for him. We were always complimented on what a quiet baby he was. In hindsight, we realized that he was very quiet, never really cooing or babbling as a baby. When Ryder was 14 months old, we moved from Boulder, Colorado to Jacksonville, Florida.

After our move, Ryder stopped saying “cat” and began to say “meow” instead. It was cute at first, but then I began asking our new pediatrician about the substitution of words for sounds. I was told, “It’s not a big deal, don’t worry about it; he obviously understands everything.” OK, I thought, she’s the professional, right? Over the next 18 months, Ryder gained a few words, including “momma,”
“dada,” “Sasha” (his sister), “dog” (which he usually referred to as “woof”), and others, totaling 34 words when he was almost 3. At every doctor’s appointment, I brought up his lack of vocabulary. After a year of being told, “He’s a late talker, he understands everything, stop worrying,” we became
accustomed to what I call the never-ending game of charades. He could walk me to his cup, and I knew what he wanted; I’d show him the milk or water and he would point. He could point to the movie he wanted to watch or the puzzle he wanted. I knew it wasn’t “normal,” but I had asked all of the questions, and it had become “our normal.”

Around October 2013, the conversation with the doctor changed. I was told that I talked too much
for him, that I don’t make him work for it; that it’s because I have an older child, and that I should refuse to give him something until he says it. He was 2 and a half years old. Again, I thought, she’s the professional, and I have to rely on her expertise. I had better change everything immediately, because I am hindering my child’s development! I felt like a complete failure.

I met with Ryder’s teachers, who had also had expressed concern, and told them what the doctor had said. They began to try the things the doctor had suggested. Not only did we not gain any words, but everything also became a fight. I shouldn’t give him milk because he can’t say it? Or dinner? Or a toy? Where was the line? What kind of advice was this? Everyone was miserable. When his teachers and I met again, they suggested that he undergo speech screening.

In April 2014, I received the results of Ryder’s speech screening, covered with scribble marks,
a check next to “Fail,” and a note that said, “Call me.” The speech pathologist said he didn’t have enough words for her to screen him. She told me he could point to every letter, number, and color, but he couldn’t say the word for each. Noting a gap between his expressive and his receptive speech, she said, “I think your son has something called apraxia; he needs a full evaluation immediately.”

I’m not sure I heard anything she said after that, because I was frantically Googling while she was still speaking. What was apraxia? Would he be OK? What did this mean for him, for us, for our future? Would he ever speak? As I read the apraxia “checklist,” I realized that he met every single mark. One of the biggest indicators of apraxia is a severe gap between expressive and receptive communication. How did our pediatrician not know this? I will never forget the tears and hopelessness I felt on that day. When we took Ryder for a full evaluation, the speech pathologist’s suspicions were confirmed. We found a new pediatrician, who immediately confirmed the diagnosis and told us that out of those 34 words we clung to for hope, 85-90% would be considered unintelligible, meaning that only we understood Ryder.

Going home to learn everything we could, we discovered that childhood apraxia of speech is
found in about one out of every 1,000 kids. They understand everything going on around them, but they have a neurological motor planning disorder that prevents them from speaking. There is a wide range in severity, from being completely nonverbal to experiencing fluency issues, pitch changes, difficulty “planning” what they are trying to say and/or a combination of these characteristics. To progress, children with apraxia require intense, frequent one-on-one speech therapy. There is no matrix to follow.

Then we received a second shock: most insurance companies deem this condition a “habilitive” or developmental delay, meaning that our child never had the skill, so he can’t receive rehab to regain it — or if it is developmental, he will grow out of it and we should refer to our school system for assistance. Calling every government agency I could, I was told everything from he’s too young, to he’s too old; you make too much, you already have insurance, so we can’t accept you, and my favorites, “We have a 10-year waitlist” or “We have closed our waitlist because we have no idea when we will reach the end.” This past year has been the hardest, loneliest, and most frightening year of my life.

I can’t help wondering, does he have friends? How was his day? Do kids pick on him? What is school like for him? Ryder wears an ID bracelet and necklace, as he could become separated from us and not be able to communicate. We have good and not so good days.

With all of the therapy and information, parents and caretakers of children with apraxia often feel lost in the shuffle. No, our children will not die from this, but we as a family are forever changed. This lifelong battle requires support from family and friends. We need support, and our children need support and patience. Please do not minimize our journey as “only a speech” disorder; the fear, frustration and isolation we feel are incredibly real.

Follow this journey on Apraxia Momma Bear.

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Originally published: October 25, 2016
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