Written by Elizabeth Fought
Time rolled by slowly. I busied myself playing with our 1-year-old, trying to not let worry cloud my mind while keeping a nervous eye on the clock. The waiting room began to bustle with kids and therapists streaming out of the therapy rooms, chattering about their sessions. My two-and-a-half-year-old, William, came through the door with the Speech and Language Pathologist (SLP) and ran to me beaming with a sticker in hand.
His SLP, Miss Julie, smiled as she shared all that she and William did during the assessment, her kind eyes giving me strength and encouragement as she shared the news that would alter our world. “The results still need to be entered into the system, however, due to his extreme speech limitations and single-syllable words, he demonstrates signs of Childhood Apraxia of Speech.”
My heart sank.
William was not able to get complete words out and spoke only in single syllables. He was unable to say any ending sounds, so "ma" was "Mom," "da" was "Dad," and "cu" was "cup." His limits were obvious, which was why we were standing here today. But this was not supposed to be the result! The SLP was supposed to come out and say everything was fine, that he had just a minor delay and any speech concerns were unfounded.
However, everything was not fine. Time seemed to have stopped. I shifted my younger son on my hip, overcome with emotions as William busily played with the sticker the therapist had given him.
“Ba. Ba,” he said, pointing to the figure on the sticker, and then looking up at me beaming.
I smiled at him. “Yes! Bob the Builder- good job!”
This was not supposed to be the result. I nursed him for a year, read to him, played with him, and even made homemade organic baby food. This news made me speechless. I didn’t know what to say, so I reached out to squeeze his hand.
A memory flitted through my mind. William was 8 months old, and I was walking up to the library door, chattering to him as I held him in my arms. A woman who was walking behind us asked, “Excuse me! Are you talking on your phone?” I turned towards her, and replied, “No, I was talking with my baby.” The woman gave me a huge smile, and responded, “Oh he will be an early talker if you keep that up!” My husband was on a deployment to the Middle East for the first year of our son’s life and I was doing my best on my own. Her compliment made me feel accomplished as a new mom. Maybe he would be an early talker. I kissed his head as we entered the library.
I squeezed William’s hand again as parents, therapists, and children continued to bustle in and out of the busy waiting room. I felt heartbroken at her words. Words. Not until this moment did I understand the power of the spoken word, which was something I had taken for granted until now.
Miss Julie found my eyes again and continued. She reached out to pat my arm in reassurance. “I’m so sorry to not have different news.”
Words began spinning in my head as she explained that it would take quite some time to determine that Childhood Apraxia of Speech would be his diagnosis, and therapy would begin right where he is at and build on his skills from there. She gently explained how complex speech is to get the words that you want to say to the mouth in the correct order with the correct muscle movements. She told me, “the reason Childhood Apraxia of Speech is so difficult is that there is a disconnect between the part of the brain that knows what he wants to say and actually saying it.”
I felt like I was listening to a different language. And how had I never understood how powerful and complicated spoken words were?
As I tried to make sense of her words, Miss Julie added, “Please know that he has so many strengths and so if it is Childhood Apraxia of Speech, it is a milder form. Also, be cautious in your research…the worst-case scenarios you may read about are not likely what your son will face.”
I nodded slowly at her, but I could not grasp it then. I learned over time that no one knows what causes Apraxia. While William did not have a stroke, what was happening in his brain is similar to what happens in some stroke survivors. It was as if there was a short circuit between the part of the brain that plans what he was going to say and the part that gets the words out.
Miss Julie continued, “To help children with Childhood Apraxia of Speech, something called PROMPT is a great method of treatment. And I’m actually trained in PROMPT so this is rather amazing that your son was matched with me if he does have Childhood Apraxia of Speech. PROMPT is rather complex to explain, but basically, by using tactile prompts with my hands on his face, this will help encourage muscle coordination and memory needed to form sounds and encourage speech.”
Another memory came to me. This time, William was 18 months old, and we were in the pediatrician’s office. She was telling me that she thought he should have a speech assessment. “But he’s still so young!” I had confidently stated to the doctor. “He talks a lot and we can understand what he says! Can we wait?”
We had waited, yet he did not advance in his speech. When Miss Julie gave us the results the following week, we were shocked to learn that William was in the third percentile in verbal speech due to his speech limitations. Getting this news brought a flood of emotions. Some of my heart was filled with the what-ifs about his future, worrying that we had messed up by not bringing him for assessment earlier. I wondered what would lie ahead. And yet, it was surprising to feel like a heavy burden was being lifted knowing that we were right where we needed to be.
Miss Julie shifted the folder in her hands to the crook of her arm and gave my arm a quick squeeze. “I am so sorry to not have better news. Please know that with therapy here, and with your support and practice at home, he will improve greatly.”
I smiled with misty eyes, partly with sorrow and partly in relief. Not knowing was agonizing. But now we had a plan for William, a passionate SLP, and it was time to take action with weekly therapy sessions. As she began to walk away, I found my voice to tell Miss Julie, “Thank you so much, and I guess we will see you next week!”
We said our goodbyes, and I began gathering up the boys and my bags. As we left that day through the double doors, I had no idea that Miss Julie and other therapists and staff would become like family, or that the building we were leaving would become a second home for many years to come. But it did. William would have years of Speech, Occupational, and Physical therapies, as would two of his siblings for various diagnoses.
Through the years, we have learned so much on our special needs journey, both from our children’s challenges and from learning about the challenges of many other children and their families. I have learned to appreciate countless moments that I could have easily taken for granted. I am thankful for the support and love of family and friends; the expertise of incredible doctors, specialists, and therapists; the care of teachers and school staff; and the patience and compassion of people who have touched our lives. And I am forever grateful for how my life has changed since that first day in that waiting room.
Author Behind the Legacy Essay
Turning the Page
"Resilience. Grit. Perseverance.
These words are often used to describe the attributes of military spouses, kids, and families.
They are also a hard mantle to continuously uphold move-after-move, deployment-after-deployment, community-after-community."
To read a story on military family mental health, click here. Being a military family is sometimes a tough gig, but we don’t have to do it alone."