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Our Family’s Journey to Speech: Childhood Apraxia, a Speech Disorder

My son, Grayson, was born three days before his due date. He was six pounds twelve ounces of perfection. Grayson was holding his head up by two weeks old, sitting up by three months, crawling by six months and walking by eleven months. He hit every milestone perfectly. However, by eighteen months, Grayson only said five words. His pediatrician told his father and I not to worry.

But by Grayson’s second birthday he was only babbling five to eight understandable words. I became concerned.

Everyone said “don’t worry, he will just start talking one day” but my mom instincts told me that there was something wrong. I could see that Grayson wanted to talk- he would grunt and babble and point at what he wanted, but words didn’t come.

How do you know when a toddler's refusal to speak is apraxia?

At Grayson’s two-year checkup, I again expressed my concerns over his lack of speech. This time, his pediatrician agreed with me and explained that Grayson should be saying at least twenty-five words.

I left his appointment feeling a combination of anxiety and guilt.

Was it something I had done… or not done?  I breastfed, I brought him to story time, he ate a healthy combination of mostly organic fruits and veggies. Maybe I should have played more classical music, done more tummy time, stayed home longer instead of going back to work.

Our pediatricians connected us with Vermont Family Network. Vermont Family Network provides services to families with children with special needs or developmental delays. VFN recommended that Grayson enter their Early Intervention Program. A week after Grayson’s second birthday, VFN assembled a team of professionals to support our family. They came to our home to meet with Grayson, my husband and me. Together we developed a plan for Grayson. Within this plan, he would work to reach specific goals over the course of six months.

Grayson began meeting with an Early Intervention team member for an hour once a week. She was a wonderful woman who took time to develop a relationship with our son and built his trust. She would play games and activities specifically designed to engage Grayson’s speech.

Progress was slow, and Grayson became increasingly angry, frustrated, and aggressive.

His father and I attributed this behavior to his inability to communicate. Life became a long and painful game of charades mixed with baby sign language. He would point to what he wanted then I would say “milk” (or whatever he was pointing at) in hopes that he would try and repeat it. He would never try and would begin throwing a tantrum until we gave him whatever he wanted. When we wouldn’t give Grayson what he wanted or he gave up trying to show/point/grunt towards what he wanted he would just get it or do it himself.

Although Grayson could not verbally communicate with us, we knew that he understood and heard everything we said to him. Because he could not easily communicate, we began to notice how observant he was becoming. When I couldn’t find my keys or phone, for example, I would ask Grayson and he would find them. He would hand me the oven mitts when he heard the oven timer go off.

To rule out any hearing problems that could have been linked to his speech delay we arranged an appointment with an Ears, Nose, and Throat doctor. He had his hearing tested and- to no surprise to his father and me, everything came back clear.

At his six month review with VFN, his team (as well as his father and I) agreed he had made little to no progress. In fact, Grayson had regressed and was only attempting to say about five words. VFN recommend that he start public preschool at our local elementary school when he turned three. VFN connected us with the local preschool teacher and the school’s Speech and Language Pathologist (SLP).

A month before Grayson’s third birthday, his soon-to-be preschool teacher and the school SLP came to our home. We developed another plan that would evolve into Grayson’s I.E.P. (Individualized Education Plan,) The I.E.P. had specific methods and initiatives that would be used to reach concrete goals. Grayson began preschool four days after his third birthday and immediately began meeting with the school’s SLP individually three to four times a week. Because of Grayson’s inability to speak or even attempt to form words, the SLP had him begin to use a talker. A talker is a sheet of laminated paper, made up of a grid of squares, and within each square there was a word accompanied by a picture. There are simple words such as eat, drink, help, play, go, up, down, school, home, and sit. The picture and the word would be associated, such as there would be an apple in the “eat” square. Grayson began carrying around his talker and would use it to communicate. When he wanted to get a drink he would point to the drink square. We would then point to the “I” square, the “want” square and the “drink” square and repeat to Grayson the sentence he was trying to convey “I want a drink”. Therefore, the talker was not only used to help him communicate, it was meant to get him to practice forming simple sentences.

Happy little boy heading to preschool for speech and language development.

First day of preschool 2016

After a few months in preschool, Grayson was beginning to say a dozen more words. We noticed, however, that his words were often missing syllables or garbled. When he would try and say a word it sounded forced, and we could see him physically struggling to speak. He would only attempt two to three words sentences and there were long pauses between each word. For example he would say “me…. Toe…. side” when what he was trying to say was “I want to go outside” or “me… snet…. sming” was “I want to eat something”. I would try to ask Grayson questions with answers other than yes or no, and he would get frustrated attempting to answer.

"Talkers" are useful for children with childhood apraxia.

Grayson completing a speech development activity

The hardest thing is to watch your child struggle, and it’s even worse when they struggle with something that should come naturally and instinctually to most humans.

I shared my concerns with his SLP during an I.E.P. meeting. She informed me that she believed that Grayson had Childhood Apraxia. She recommended I read the book “The Late Talker”.

Upon getting the book and researching Childhood Apraxia, I felt as though a weight was lifted. My son had almost all the symptoms of Childhood Apraxia. After a year of fear, panic, and frustration, we had an answer!

By definition, apraxia is a “neurological motor speech impairment.” Simply, ita is a break down in the transportation of messages from the brain to the muscles in the jaw, cheek, lips and, tongue. There is no problem with the child’s muscles. A child will know what he or she wants to say but there is a roadblock preventing the message from the brain to the mouth.

Apraxia is not a cookie cutter disorder and every child will exhibit some symptoms and not others. I am no expert on this condition and if you are interested in more information and learning more about the symptoms, I recommend The American-Speech-Language-Hearing Association  as well as the book “The Late Talker” by, Marilyn Agin MD, Lisa Geng, and Malcolm J. Nicholl . We choose not to have Grayson formally tested because testing is very expensive, and a child with Childhood Apraxia is treated like any other child with a speech delay. The most effective treatment for Childhood Apraxia is one-on-one speech therapy with an SLP. Fortunately, Grayson was already receiving this treatment at school.

Through all of my reading and experience with Childhood Apraxia, I have learned that early intervention is most important.

I am so happy that I followed my instinct and talked to my pediatrician about my concerns regarding Grayson’s speech development. Grayson just began his second year of preschool and currently has a vocabulary of five hundred plus words. He is saying four, five, and six-word sentences and is attempting words that he would once refuse to try and say. I credit this progress with the Early Intervention program, support from VFN, and his opportunity to start school early. There are so many amazing resources available to Vermont families and no parent should ever feel ashamed to ask for help.

Our children deserve to have all the opportunities they need for success.

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