by Sam, Contributing Writer
Oh my, after 2 1/2 years of work, sleepless nights and worry, what do you write about when given an opportunity to post to others living a similar life? After some contemplation I’ve decided to share my day of reality with you. Not the day that I realized we needed speech, not the day we started speech, not even the day of diagnosis. It was the day my denial began to fade.
My sister-in-law called me on May 14th of 2013 to let me know it was the first annual Apraxia Awareness Day. “What?! There’s a day dedicated to this? Enough people know about it to justify an official day?!” So once the kids were in bed I decided to sit and write a letter to all of my family and friends throughout the country. Many of which had no idea of what we were battling.
When I started writing I was indifferent to any emotion really. As I continued to summarize the beginning of our journey it was through tears. Had I really not reflected on what this is and what it means? Don’t get me wrong. I had already spent many sleepless nights prayerful or researching, but I always allowed a bigger part of me to think that things will click soon and this challenge will vanish.
This letter was my lonely reality. I hope that this letter will reach the beginners who are also feeling alone. It can be a suffocating feeling to take on something in your world that no one else in your world seems to grasp, but you are not alone and you can do this.
I just wanted to take a minute to let everyone know that today is the first annual Apraxia Awareness Day.
Apraxia is one of the most severe speech challenges in children. In childhood apraxia of speech, the brain struggles to develop plans for speech movement. As a result, children with CAS don’t learn accurate movements for speech with normal ease. These children have the words, they are just lacking the ability to verbalize them. There is no cure for apraxia, but with therapy children can overcome its challenges.
For those of you who don’t know, Andon was recently diagnosed with apraxia. I became concerned with Andon’s speech progress at about 18 months old. At first my doctor had no concerns because, on paper, his speech was age appropriate. I, however, felt strongly that he was delayed.
I remember that at 14 months old Andon said “turtle” clearly in the pet store and would yell “Adam” down the hall to get his brother to come and play. He was also able to say “daddy.” Those words were only spoken a few times and he stopped progressing. We started hearing mostly vowel sounds and “daddy” became “na-na.” I know now that the regression and vowel usage were signs of apraxia.
Andon started throwing tantrums when trying to communicate and it became obvious that he knew he could not communicate effectively. He was becoming old enough to have a very specific idea of things he wanted, but had no idea how to tell us.
For a short time I tried the strategy of holding the thing that he wanted until I got some type of speech effort from him, but quickly realized that this ended in disappointment and frustration on his part. I stopped any effort to advance his speech because I was at a loss. He communicated by nodding yes and no and by pointing.
I brought it up each time that I was in the doctor’s office and at 22 months old, I was referred to First Steps. I pursued the evaluation process which took some persistence. I asked a lot of questions and consistently voiced my concerns. He began speech therapy by age two and I quickly saw the therapist implementing exercises that would have never occurred to me. He was also more receptive to her efforts.
I was so relieved that we had finally gotten some help and expected magic to happen. Unfortunately, while we were finally seeing progress, there was no magic. The therapist was thrilled with his progress and with the fact that his evaluations were showing him above his age level in other areas. While I am very thankful for these things, I just expected speech to click quickly and for Andon to be 100% by his six month mark. After a couple of months, there was talk of apraxia and a little later he was officially diagnosed.
He is 32 months now. He applies himself and has progressed some, but is still rarely understood. We are learning what certain sounds and actions mean and are implementing sign language.
I’m realizing that I’ve been in some denial. I’ve just been thinking that his case is mild and that he’ll overcome soon. The reality is that it will likely be years of therapy before he’s close to age level. Now of course I know that it could be so much worse, but let’s face it, this life is challenging enough and no one wants to see their child start it with any additional challenges.
We continue working together. We celebrate with Andon when he succeeds with new speech efforts. It is so obvious that he knows when he has successfully said a word and is understood.
This letter is meant to raise awareness of apraxia. It is to tell you that apraxia was a new word to me and I’ve not met others who have heard of it. This causes me to think of all of the children who could be out there frustrated because they can’t be understood and of all of the parents who are wondering what they are doing wrong.
This story is also to tell you to be confident in your concerns for your children. It took some persistence on my part to be heard, but in the end it was rewarded. The therapist and his team at First Steps often tell me how wonderful it is that we started services early.
It is also important to me for people to see Andon’s potential despite his lack of verbal communication. Andon is very intelligent and loves interaction. It can be difficult to see these qualities in children with speech challenges. I hope this story can help you or someone you know who is dealing with similar challenges.
Bio: Sam lives in Kentucky with her husband of ten years and four children. Her son Andon was diagnosed with apraxia of speech at age three. He has a severe peanut allergy and some other food intolerances. Andon also has sensory processing disorder along with some sleep challenges. She is a stay at home, homeschooling mom with a bachelors degree in elementary education and a masters in early childhood.