Childhood Apraxia of Speech Awareness Day

14 May

May 14th is Childhood Apraxia of Speech Awareness Day.

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This is the face of Apraxia of Speech. First, let me give you a little background. Childhood Apraxia of Speech is a neurological oral motor coordination disorder that causes children to have difficulty moving their mouth to speak. Children with Apraxia know exactly what they want to say but they can’t get their mouth to create the words. Imagine the frustration of struggling to get every single word out.

Many times this disorder manifests itself when the child is quite young. Sawyer struggled to drink from a bottle or even swallow baby food. We didn’t know it at the time, but we were already experiencing symptoms of Apraxia. This difficulty with feeding continued to affect Sawyer resulting in an extreme low weight and problems with constipation. He also had delays in walking, crawling, and other motor issues which is also known as Dyspraxia. Dyspraxia is similar to Apraxia and they sometimes occur together causing motor coordination problems all over the body.

At 14 months old, Sawyer was referred to our state’s early intervention program called Birth to Three. Sawyer started receiving services from an occupational therapist and an early childhood teacher. He had no words and no sounds, so they worked with him on making noises with his mouth. The occupational therapist helped him learn to crawl and walk. They had us teach him sign language to help him communicate. At first this seemed counter-intuitive, we wanted him to talk, not sign. With many reservations, we started working on the sign “more”. Every time he wanted to keep playing or keep eating we would take his hands and help him make the more sign and also modeled it ourselves. After about a month, I threw in the towel. It wasn’t working. I was sick of signing “more” with him a million times a day.

Sawyer was so frustrated all the time. It was clear that he understood us, he could point to things in pictures and follow simple directions. But he couldn’t communicate with us. Not only that, but he was still barely eating and was so plagued with constipation that he was in constant pain. He spent much of his time laying on the floor screaming. I would call my husband, Jeff, crying many days and hold the phone up to Sawyer so he could understand what I was dealing with. Nothing I did would soothe him. I felt helpless.

Finally, I pushed for more tests and medical consults. He saw doctors, nutritionists, and got poked and prodded by lab technicians. We ended up seeing a pediatric gastroenterologist. We tried a pediasure based diet to see if we could get him to gain weight that way. After no improvements, the specialist decided he should have an upper GI endoscopy. We went to the Children’s Hospital and he was put under anesthesia and had tissue samples removed from his esophagus, stomach, and upper small intestine. They thought that he may have Celic or a different malabsorptive disorder. They found nothing. We started using medicines to correct his constipation in hopes that it would resolve the stomach pain and lack of weight gain. The pain subsided, but the weight did not improve.

Then, a breakthrough. Out of the blue, Sawyer brought a bag of chips over and signed “more”. It had been several weeks since I had worked with him on signing. I was so excited! We went back to teaching signs and Sawyer caught on quickly. He could finally communicate in some small way.

When he turned two, the Birth to Three program had a speech therapist evaluate Sawyer. That was when we first hear the words “Childhood Apraxia of Speech”. The therapist thought it was likely that he had it.

We had a speech therapist at our clinic confirm the diagnosis. Then we found out that our insurance does not cover any speech therapy or occupational therapy for children with speech apraxia. We would have to depend on the therapy provided by the Birth to Three program and when he turned three, the local school district. While many speech disorders are well treated with short weekly therapy sessions, Apraxia of Speech is more severe and requires much more aggressive therapy. Our options were to hope the available therapies were sufficient or pay over $350 per hour for clinical therapy services.

Now Sawyer is almost five. He talks up a storm and is the most outgoing of my three kids. In some ways he is much more mature than other children his age, in other ways, much less mature. He loves animals and spending time outdoors. He rides a two wheeled bike all by himself. He still can be difficult to understand and probably has years of speech therapy in his future, but he is happy, thoughtful, and caring. He continues to receive therapy at school and I work with him at depth on a daily basis. He has made huge leaps and bounds over the last few years, but it has been a challenge.

Today, on this Childhood Apraxia of Speech Awareness Day, please think of the children like Sawyer who are affected by this disorder and help make sure that they have access to the therapy that they need to become fully functioning members of society.

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