I’m honored to introduce Crystal – a mom to a six year old girl with apraxia. I asked Crystal to contribute to What Would Gia Say?, because she and her daughter represent hope; something I and so many others are searching for everyday. They also represent a later stage of therapy for apraxia, that took a lot of fight and heartache to get to. This family is truly inspirational. Click here to learn more about Crystal, and how we came to know one another.
by Crystal, Contributing Writer
From about three months of age, my husband and I knew something just wasn’t developmentally right with our daughter.
Taylor, who is our third child, was not developing like our first two kids. People say not to compare your children, but it’s hard not to; comparing them may be the reason we knew something was off. Going against my motherly instinct, my husband and I decided to let things go and hope that Taylor would just suddenly, “catch-up” developmentally.
Months began to go by, and still, Taylor did not coo, did not babble, and was not meeting any of the developmental milestones.
After an evaluation from a near-by children’s developmental center, it was determined that Taylor, at 1.5 years old, was considered to be at 8 months old developmentally. After reviewing the results of the evaluations, the center recommended Taylor be seen for speech and cognitive therapy.
I asked myself, “What did I do wrong? Why is she so far behind? What piece of the puzzle was I missing?”.
At her two year wellness visit, Taylor’s doctor wasn’t overly concerned. He said it was probably because she was our third child. “Why would she talk?”, he stated, “Everyone does everything for her and speaks for her”. He explained that if Taylor was making progress, even if it was slow, that it was okay to just watch her grow for now. He did however, recommend we have her hearing tested along with a cat scan to make sure all the normal structures of the brain had developed properly.
Since Taylor was making slight progress, and the fact that a CT would expose her to an abundance of radiation, we opted out of the test.
So we continued with her therapy hoping it was just a delay.
After little progress and many speech sessions, Taylor’s speech language pathologist said, “I think Taylor has what is called apraxia. Have you heard of it?” At the time, I had never heard the term “apraxia,” so I had no idea what it was.
Until that moment, I was thinking that Taylor was just severely developmentally delayed in her speech, but deep down I knew something was different. My second child had a speech delay and needed help with articulation but this was completely different. Taylor was two and a half and completely non-verbal. I anticipated her needs and could communicate with her using the 20-30 signs that she had. She wanted so desperately to speak, but the moment she opened her mouth, no words came out. Her SLP was working with bubbles at the time and it seemed almost impossible for Taylor to say “pop”.
I ran home and instantly researched apraxia.
After reviewing the signs and symptoms, I quickly realized that my daughter is a child who suffers from childhood apraxia of speech.
I was so relieved to finally feel like someone knew what they were talking about. Until then, her pediatrician, ENT, and other doctors and therapists seemed clueless as to what might be happening with Taylor.
I wanted my child to be able to sing “Twinkle, Twinkle, Little Star” before bedtime, or let me know what her birthday wishes were. I didn’t know if that day would ever come.
Soon after Taylor’s SLP suggested she had apraxia, we moved.
After looking long and hard and experiencing many SLPs trying to tell my daughter to say such things as “Mom” or “Dad”, and getting frustrated with her because she wouldn’t perform for them, we finally found our fit at the Foundations Developmental House (FDH).
FDH specializes in apraxia diagnosis. What a relief! It was here that we learned how uncommon it is for apraxia to be the only diagnosis, and that it often times is a secondary diagnosis. This explained so much.
Taylor began therapy with a new SLP, Jeremy. He was the best thing for Taylor and I. Jeremy worked with Taylor two days a week for two years, making huge strides.
Jeremy was always so patient with Taylor. When she had her “moments”, he would refer to them as “Taylorisms”, and he would just keep going.
There were so many moments that were difficult and challenging for Taylor and our family as a whole. I look forward to sharing more, and giving hope to other apraxia families.