Jake's Journey with Apraxia

by Lynn Carahaly, M.A., CCC-SLP, creator of the Speech-EZ Apraxia Program

I suspected my son, Niko, may have speech issues when he was eight months old because he only babbled a few sounds.

At 19 months old, his Montessori school was offering speech screenings by a parent there that was an SLP. I signed him up and did not disclose who I was or what I did for a living. I, like many parents experienced friends and family telling me, “You are just paranoid, he is fine….he is a boy…..you are just overreacting because you are an SLP.”

I got the call later that day from the SLP who did the screening at his school and she gently explained to me that she had concerns regarding his expressive language skills, but receptive was great. She suggested I have a comprehensive evaluation. I felt validated for sure.

At six months old, I taught Niko sign language and when he was 18 months old, he learned hand cues. From the time he started on solid foods I suspected he might have sensory processing issues as well. He could not round his lips and could not move his tongue side-to-side with a model at 2.5 years. As he gained more verbal language, his speech errors were phonological in nature, although he did have several instances of atypical errors.

He is also dysfluent; stuttering runs in our family. Typically, kids will go through a very normal “stuttering” phase between the ages of 2-6 years old. It typically precedes a language burst, which has been the case for my Niko man.

What is concerning and what might be pathological rather than developmental, is he has gone through multiple “stuttering phases” which last for a few months at a time, and he is now exhibiting audible fixations, which could be a sign that this is not just developmental.

It is good that I know so much, but it also drives me crazy that I know so much. I worry too much.

I just had him evaluated by an OT and she confirmed a Sensory Processing Disorder. We enrolled him in gymnastics and got him a Strider bike (he picked pink!); both have been amazing. We recently started The Listening Program as well. He is doing great but we are not out of the woods yet.

While I know gesture (of course I use Speech-EZ® hand cues) helps significantly with motor planning, and speech sound disorders, I continue to be blown away with the results for phonological awareness and early literacy skills. The brain maps for sound without directly working on “letters.” I started sound-to-symbol recognition with Niko at two years old. At two and a half he was able to tell me the initial sound in a CVC word.

“Niko, what is the first sound you hear in the word ‘pig’?” He would say and gesture the hand cue for /p/. So cute, and so amazing.

As he would pair the sound with the gesture, his articulation and sequencing of sounds significantly improved. But the literacy aspect of it blows my mind. He can not only identify initial phoneme, but last phoneme as well. He can identify rhyme and create rhyme. He can also blend when given a CVC word segmented verbally. “What word do these sounds make?” … s-u-n … “Sun!” We recently started syllable counting. He is currently 3 years and 3 months old.

We also practice digit-span and word list recall, as working memory and attention deficit are intimately related, and run on both sides of the family. Yikes! He is up to four-unit recall. We make it a fun car game and he loves my antics.☺

Some may say I am crazy, neurotic, SLP mom, but I know too much. Good and bad I guess. Having a good understanding about our family’s genetic line drives me to waste no time. In addition to stuttering, ADHD with high intellect in the superior range, and dyslexia runs in our family.

My mother saved all my report cards and test scores from preschool on. Now, as a professional, it is fascinating to look back at those and see I did in fact have an undiagnosed learning disability in reading comprehension, undiagnosed AD/HD Inattentive Type, and probably sensory processing issues as I was a tippy-toe-walker (considered a soft neurological sign).

IQ testing in early elementary yielded a Standard Score of 120 (90th percentile); IQ testing as an adult (age 26) yielded a Standard Score of 128 (97th percentile). Interesting, because “the experts,” yeah you know those guys, say IQ does not change. I think those are the same guys that tell parents to give up hope as their child will never speak.

Yet my SAT scores and GRE scores were in the gutter, less than 16th percentile. I took the SATs three times. If I had an IEP or 504 plan with a modification to take tests in a quiet room with no time limit, this would have been a night and day difference for me.

I explain all of this because I painfully remember certain subjects being really hard for me and I had to work harder than my peers. I did not feel smart at all. In fact, I began to label myself. Perhaps receiving the label of a learning disability and ADHD would have helped me understand myself.

I excelled in Math and Science but struggled with English. I remember doing most of my English reading assignments with books-on-audio. They held my attention.

Yet at 23 years old I graduated from Ohio State University cum laude with distinctions and had written two theses (one published). I started my private practice at the ripe old age of 26. The Type A personality helps.

I hope that in sharing all of this, mothers will not be so hard on themselves, as I often see. Furthermore, disabilities are not synonymous with impaired cognition. As a clinician, I see this far too often… mommies questioning themselves and trying to pinpoint the reason. When a child is diagnosed with a disability or even when you suspect there is a problem, the questions begin to stream in.

What did I eat/drink during pregnancy, OMG I had Botox when I did not know I was pregnant yet (I really did with my JoJo!), I had a little too much fun at that party that night….. Even I, as a respected professional with all the knowledge I have (and there is still so much I don’t know), could not have prevented Niko’s speech-language delays and sensory processing problems. It is just the genetic make-up my little Niko man was born with. Just like my daughter was tongue-tied and recently had surgery. Yes, very ironic for this SLP mommy!

The denial and depression phase of the grieving process are the hardest. What is even more difficult is when mom and dad are not at the same phase within the grieving process. It has been my experience that daddies tend to hang out in the denial phase for a much longer period of time, compared to mommies. I often see “mother’s intuition” keeping her completely away from the denial phase and shifting straight into acceptance and taking action. Thank you Mother Nature! Mommies sadly will hang out in the depression phase far too long, due to feelings of responsibility, helplessness, and even feelings of taking on the challenges of a special needs child alone.

Focus on what you can control. I can control my acceptance of the challenges he has. I can control my steps to take action to help him in any way I can. I can control my attitude and actions.

The brain is so pliable at a young age, and one can absolutely develop new neurological pathways for many cognitive processes, skills and motor plans. Truly amazing. I have worked with so many families who were told their child would not speak. Do not give up hope.

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Thank you Lynn for sharing your story!