Apraxia of Speech.
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Three words I wish I didn't know. That I could remain unaffected by the diagnosis. That not knowing meant not having to be an active part of the condition.
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Let's back up. Ryder, as you know, was born without any major complications, at 11 pounds, 1 ounce. A large baby, for sure! He hit every gross motor milestone with ease, and many well in advance of his peers. He hit fine motor skills at or before the appropriate ages. He was and continues to be healthy (to this day, has not been sick enough to see a doctor). Ryder babbled, endlessly at times. He has always been social.
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When Ryder didn't start talking at the same age as his friends, Patrick and I didn't worry. I was a late talker - just ask my mom - she loves to recount the story of me going from one-word answers at times, to a full 8-word sentence one night. His Pediatrician didn't worry - we were told that when he turned 2, if he still wasn't making progress with his speech, we would start to consider something more than just late speech development.
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Patrick and I suspected that as an only child, perhaps we didn't give him enough opportunity to talk for himself. That when his brothers were born, and the attention was split into thirds, he would start talking. But - it didn't happen. Ryder learned a few words, primarily "ball" and "balloon", but didn't even call Patrick or I "dad" or "mom".
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Ryder is smart. His ability to understand what we are saying is completely amazing at times. He is able to answer complex yes or no questions. He has an amazing memory. Ryder is able to find toys that he "put away" days, or weeks, later.
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Ryder can follow 3-4 step directions consistently. We work on more sometimes, and he can do it (of course, if he is in the mood, it works better!). He knows all of his colors. He can count accurately (with his fingers) to 10. He is able to point out (in books/puzzles) most letters when we tell him the letter name, or the letter sound. He is kind. He shares. He is loving.
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So - at his 2 year appointment, we were referred to a local hospital to see the Child Life Specialists. They completed an evaluation, and confirmed, as we already knew, that his speech was delayed. When they did not have much as far as resources for us, we pursued our school district's Early Intervention Program. Navigating this process was involved, and time-consuming. A month after starting the process, he was evaluated. They confirmed, again, his speech was severely delayed. His comprehension score was in the 84th percentile - confirmation that he is smart beyond his age. That he understands, and can process information extremely well. But, his verbal expression was in the 3rd percentile. Just about as low as you can get. Meanwhile, we also pursued a Certified Audiologist exam through a local deaf and blind school. His hearing registered as "at least average".
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We started pursuing every-other-week Speech Therapy through Early Intervention. This is their maximum frequency. It took a little while to get on the same page with the Therapist, but after a bit we seemed to be making very (very) gradual progress.
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While all of this was happening, we have contacted dozens of other resources. The term "Apraxia of Speech" was first introduced to us at the beginning of August. And, deep down, I knew this was what was wrong. I just didn't want it to be true.
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Finally, in December, we were able to pursue an evaluation with Primary Children's Medical Center (PCMC) for Ryder's speech. At the evaluation, I mentioned our concern of Apraxia of Speech (something the Early Intervention Therapist had also started to think was the problem). The Speech Pathologist was kind about it. But, she informed me that typically this condition isn't diagnosed until age 3.
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Less than 10 minutes into the evaluation, she turned to me, and told me she didn't want to alarm me, but that Ryder has "severe" Apraxia of Speech, and requires intensive Speech Therapy. Intensive, meaning at least weekly (preferably more), for 2-3 years.
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Gut-wrenching.
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Now, what is Apraxia of Speech? Basically, it boils down to the fact that Ryder does not have an unwillingness or a laziness about speech. He is unable to speak. The motor planning connection from brain to mouth doesn't function properly. It's not a physical paralysis or disability, it's the brain connection.
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We get it. It's not a life-threatening diagnosis. It is something, that with years of therapy, will likely be improved (although, most research indicates it does not go away). He continues to be the healthy, happy, loving boy that he was pre-diagnosis.
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But, our baby lacks the ability to talk. He wants to. Desperately. He wants to tell us what he is thinking. What he wants. What he needs. You can see it in his eyes that he has so much to share. But, he can't. It's stuck inside of him. Because of his inability to express himself verbally, he will act out - and, yes, I know that every toddler does. But, it is different. He is acting out not only because he is upset over something (whether it's minor or major), but because he has an inability to verbally express his emotion.
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Ryder does know a handful of signs. Things that are essential communications. But, as he learns a sign for a word, he loses the ability to verbalize the word. His body finds an easier way to communicate it, and he no longer is able to say it. We've avoided teaching him more sign language in order to encourage more speech. He attends daycare, or Preschool, 5 days/week, and we can't expect everyone to learn every single sign.
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I write this post to educate our family and friends. Not to make a pity party for us. We get it - we still are very blessed. We know that.
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If you are someone that has any, regular or infrequent, interaction with Ryder, know that you shouldn't treat him any differently. That you should still talk to him like normal, and continue to remind him to speak - to "Say thank you" - he won't be verbalizing it, but he will sign it. Still ask Ryder questions. Encourage him to say the correct word (currently, he says "meow" for "cat" - recognize that he is talking about a cat, rather than repeating "meow"). It's good for him to hear expectations of him talking.
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| Ryder - loving his time in the bath! |
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We are now pursuing weekly Speech Therapy through PCMC, and continue to participate in the Early Intervention Speech Therapy. We are learning to take this diagnosis one-step-at-a-time. Our current battle is getting our insurance to recognize Ryder's speech is not simply delayed. That Apraxia of Speech is preventing his ability to speak. Whatever the outcome, we know that the Speech Therapy is necessary, so we will pursue it as such.
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If you have any questions about Apraxia of Speech, feel free to ask.
