Childhood Apraxia of Speech: One Mother’s Journey

By Guest Blogger, Merritt Tise, founder of the Charlotte Walk for Children with Apraxia of Speech

I had a very normal and healthy pregnancy. Tripp was born 5 days past his due date and weighed 6 pounds, 12 ounces. He met all of his milestones on time, except for speech. He was always very quiet, the kind of baby that you could take out to dinner or really anywhere because he was so “good”. Looking back, that wasn’t typical.

He was my first child, and we lived in Toronto at the time so I was not around my friends that had babies the same age.  I did know that he should have been saying “mama” and “dada” around 6 months old, but when I mentioned it to the pediatrician he wasn’t concerned at all. I started to get very concerned when he turned 1. He still wasn’t saying anything. By that time, we had moved back to Charlotte and I took him in for his 1 year old check up, where he had his first (of many) documented ear infection. I mentioned my concern at the checkup and he wasn’t concerned yet and said that we could talk about speech at his 18 month check up. We were in and out of the doctor’s office almost each month for ear infections. Tripp wasn’t making progress with his speech, but we wondered if the constant ear infections were the cause.

At Tripp’s 18 month check up, I told the doctor that he still wasn’t talking (well, he said “uh” for up and outside, and  “uh oh”) and he agreed that it was time for a speech referral and an ENT referral for all of the ear infections. Tripp had his first speech evaluation at 19 months, and I was told that he functioned as a 6-9 month old infant in terms of speech. Let me tell you, that was a blow. I knew that he didn’t talk, I knew that something was going on… just didn’t know what or how to help him.

I sobbed when my Case Coordinator shared that information. Literally within a week of having the speech evaluation, Tripp had tubes placed. I had my fingers crossed that he would just start talking because I had heard that so many times children would just start talking after the tubes were placed. That didn’t happen for us. He started speech therapy immediately. At first it was once a week. Even that early in the process, I was very aware that he was not clicking with the therapist. She was having a hard time holding his attention so we had to make a change. I am so thankful now that I did because that change led the the next therapist who was very honest with me.

When he was about 2.5, the therapist that he saw mentioned that he might have apraxia of speech. She also told me that she hadn’t had the training to understand this complicated disorder. The first thing that I did when she left was to Google “apraxia.” Googling is such a huge mistake when it comes to things like this. I saw nothing but the worst. I started thinking that he’d never speak (some children with apraxia aren’t verbal communicators), that he’d depend on us forever, he’d never get married, never have his own children, etc. I cried, called my husband who is the rational one, and then I got my act together and looked for someone who could help us.

I made an appointment for a new evaluation not telling them on the phone about apraxia because I wanted to know their honest opinion. He had the evaluation and started seeing his current therapist a few months before his 3rd birthday. She mentioned after seeing him for several weeks that he might have apraxia and that she was going to treat him as if he did. She started doing the Kaufman method with him and more recently took classes for the PROMPT method which Tripp responds to in a positive way.

Speech therapy for children with apraxia should look much different than traditional speech therapy. That’s why we weren’t seeing progress in his early therapy years. Therapy for apraxia requires lots and lots of repetition of a targeted sound or word. Apraxia is a motor planning disorder meaning that the child with apraxia has a hard time “planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech” (taken from CASANA). At age 3, Tripp was officially diagnosed with Childhood Apraxia of Speech (CAS).

Tripp just turned 5 in July and we decided to wait a year to send him to kindergarten. He attends a specialized Communication and Sensory Preschool. He receives private speech therapy 3 times a week as well as OT and PT once a week (the motor planning part also affects his fine motor and gross motor skills to a lesser degree than the speech). Tripp has gone from speaking in total approximations of words to speaking in sentences (not like really complicated ones, but still, big progress). His father, brother, grandparents he sees the most, and I understand the majority of what he says. His younger brother is a great interpreter. When in doubt, just ask Tobin! I’m amazed at how the two of them communicate and play together. They are a true blessing to one another. An unfamiliar listener still would have a hard time understanding what Tripp says, but that’s why he’s still in therapy.

Many people ask me about the prognosis and it’s good! Most children who have apraxia become verbal communicators. It takes A LOT of hard work (by everyone involved) and sometimes years of therapy. Even then, Tripp may sound like he has an accent…. but don’t we all! Tripp is such a sweet, funny, caring, hard working, and smart child that I just know he will go far!

I started coordinating the Charlotte Walk for Children with Apraxia of Speech to raise awareness about apraxia in our community. Apraxia isn’t a special need that many people outside of the diagnosis or the medical community know much about. I also wanted the children to have a fun day! The work so hard each and every day to be understood. Speech is something that comes naturally for the majority of people. Our walk does both of these things and raises money for The Childhood Apraxia of Speech Association of North America (CASANA). CASANA is the only non-profit organization dedicated to apraxia. They help fund education for parents and SLP’s, research apraxia, help provide iPads to be used as a communication tool for those that need them, and help send children to speech therapy since it can be very expensive and so much is required for a child with apraxia to succeed. Apraxia experts suggest that a child with apraxia receive speech therapy 3-5 times a week with a speech therapist who understands the disorder!

The 2nd Annual Walk for Children with Apraxia of Speech will be held September 28th at Lower Independence Park (300 Hawthorne Lane is the park address). On site registration and activities start at 9 am. We will start the walking portion around 10:30 followed by the raffle. We have lots of fun activities planned for walk day: face painting, the fire truck (assuming there is no fire), a variety of arts and crafts, games, snacks, free raffle prizes, and well as raffle tickets for larger prizes. Those tickets will be $1 each. There is a Richard Petty Driving Experience, a Nascar Race Packages, an American Girl Doll, and Xbox 360, and more up for grabs! The walk registration fee is $20 for adults and $10 for children. All proceeds go directly to CASANA. Please visit http://secure.apraxia-kids.org/charlottewalk for more information.