Arah Iloabugichukwu is a former Water Cooler Gossiper turned Helicopter Parent. She’s also a Gym junkie, holistic medicine buff, and alternative parenting specialist. Arah writes about life from the perspective of her kitchen window. That’s where she keeps the wine.

9 Things You Need To Know About Childhood Apraxia of Speech

9.) What Is Childhood Apraxia of Speech (CAS)?

Not to be confused with Acquired Apraxia which typically affects adult trauma victims, Childhood Apraxia of Speech is a rare neurological speech sound disorder in which the brain struggles with oral motor planning. Now talking may seem like a fairly simple process to those of us who’ve never struggled with a speech impairment, but the process is actually quite intricate, First, you subconsciously start with an idea of what you want to say. Then in the blink of an eye, you piece together a manual consisting of particular sounds and syllables, muscle movements, force needed to activate each muscle, appropriate timing, and a host of other specifications. This manual is what we’ll call a speech movement plan. The final step is to transmit the entire speech movement plan to the mouth, and Houston, we have lift off. It is believed that children with CAS struggle with the inability to transmit, create, and recall speech movement plans.

8.) What Does CAS Look Like?

Because of the rarity of CAS, a Speech Language Pathologist who is untrained in spotting the specific signs can easily misdiagnose your child with a similarly presenting disorder. For this reason, it’s imperative that we look at the various physical forms that CAS can take. In many children, CAS can look like difficulty chewing and swallowing or poor manipulation of food in general. After one year of speech therapy, my son was finally identified as having CAS after a specially trained therapist saw him chewing and using the tongue and roof of the mouth to break down food. Additionally, CAS can take the form of difficulty smiling, kissing/puckering, or mimicking other oral movements. CAS can also look like oral groping with no sound production, indicating your child knows what they want to say but are having difficulty formulating the full speech movement plan.

7.) What Does CAS Sound Like?

There’s no one size fits all when it comes to Childhood Apraxia of Speech cases. Any particular case can vary from mild to severe and everything in between. Some symptoms are common across the board with speech impairments, symptoms like late first words, improper tone and stress, and difficulty with longer/complex words. CAS in particular can present itself as long pauses between words, repeated syllables or sounds in place of whole words, or saying the same word many different ways.

6.) Can CAS Can Take The Appearance Of Other Things?

I was offered 3 very different diagnosis’ for my son before he was finally diagnosed with CAS. One diagnosis in particular was tossed around by 2 professionals, that was Autism Spectrum Disorder or ASD. Most children with ASD are vocal, yet non-verbal which means they may produce repeated syllables, vowels, and consonants but will not pair these sounds together to form words. This is also very common with children with CAS. Children with ASD often have coexisting disorders stemming from sensory processing difficulties, fine motor delays, and learning difficulties, which is also something we regularly witness in children with CAS. The combination of speech and language delays coupled with cognitive and behavioral delays can often result in misdiagnosis’ like ADD, Dyspraxia, and Developmental Cognitive Delay.

5.) Who does CAS Affect?

1 out of 10 children in the US are diagnosed with a speech and language delay. Of those children, approximately 3-4% are determined to have CAS. This disorder affects more boys than girls between the ages of 3-21 at a ratio of 3;1. While CAS can be present in children with no co-existing conditions, it is more prevalent with certain conditions such as Down Syndrome and Galactosemia. Less noticeably, CAS affects moms and stepmoms, dads and stepdads, brothers and sisters, grandmas and grandpas alike. Loving a child with CAS is one of the most rewarding jobs a person can have. It’s also a stressful job that requires endless amounts of patience and tons of optimism. It’s important to recognize that you go through the journey of recovering from          CAS alongside your child, sometimes even carrying an extra load on their behalf. It is important to tend to your physical and mental wellness just as much as you tend to your little one.

4.) How Is CAS Diagnosed?

While doctors, therapists and educators may provide vital information that can contribute to a comprehensive assessment, a Speech-Language Pathologist, or SLP, is responsible for diagnosing and treating speech and language disorders. Because CAS is such a rare disorder, we find that many SLP’s are not specifically trained to spot the symptoms. For this reason, I encourage all parents to seek the opinion of multiple professionals, challenge any opinion you disagree with, and remember that you are an expert on your child. No one else. During an assessment, the SLP will observe oral motor movements, speech intonation, sound, and muscle strength. The SLP will also assess your child’s receptive language, which identifies how well your child understands what they hear. This tends to be higher than expressive language in children with CAS.

3.) How Is CAS Treated?

It’s important to recognize the difference between a treatment and a cure. While CAS has no cure, it can be treated and, in most cases, improved through intense specialized speech therapy that utilizes specific methods proven to be most effective in treating Apraxia. Speech therapy that focuses on the repetition of sounds, syllables, phrases and words is beneficial in familiarizing a child with the sound and feel of certain speech movements. The application of specific principles, proper diagnosis, and a trained SLP can make all the difference. The adaptation of alternative communication methods can also be very effective in helping your child communicate. Some of these methods include electronic tablets/devices and sign language. Apraxia is unlike other speech impairments in the sense that it is unlikely to go away on its own over time. This means early detection and treatment are crucial in helping children with CAS. Finally, all treatment isn’t created equally. Apraxia therapy with a specially trained SLP can run upwards of $150 an hour. And because children with moderate to severe CAS can require intense therapy 3-5 times a week, this can prove to be impossible for most families in the US. Fortunately, there are university-led Speech & Language Development programs conducted by graduate students at most local state funded universities. These programs also offer individualized speech therapy services and sliding scale tuition for those who need it.

2.) Overcoming Apraxia Isn’t A Race

One of the first questions I asked after hearing that my son had CAS was “Will he ever talk?”. My next question was “Great! When?”. The latter being a far more difficult question to answer. CAS is rare, so rare that not much research has been published exploring life with and after the diagnosis. We don’t hear too many individual success stories which can make parenting a child with CAS a scary and uncertain thing. My son’s SLP couldn’t tell me for certain whether or not my son would ever speak, but she could tell me that the prognosis looked positive with continued therapy. And she couldn’t tell me when that might happen, but she could tell me that some children see improvement in a couple years while others require therapy well into adulthood. Every child has their own race to run and there’s no telling just when you might see the finish line. What I do know is that hearing my son call me mama for the first time made every assessment, every 2nd and 3rd opinion, every appointment, every tearful night worthwhile. I’ve learned to offer my sons journey the patience it deserves and I encourage you to do the same!

1.)    You Are Your Child’s Best Advocate

My son was seen by two Pediatricians, one Pediatric Behavioral Therapist, one Audiologist, three Speech Language Pathologists, one Occupational Therapist, and one Otorhinolaryngologist before he was accurately diagnosed with CAS. Although I’ve found most health professionals to be well meaning and understanding, there’s an undeniable tendency to offer a diagnosis even when there is uncertainty. My son received speech therapy for the diagnosis of Expressive-Receptive language disorder for over a year before I decided to have him re-evaluated. His therapist seemed genuinely confused as to why there had been zero progress since she started seeing my son. She would often tell me how her other clients were making progress and she couldn’t figure out why my son wasn’t. I resolved to start the process over, rejecting any diagnosis I disagreed with and seeking out additional resources wherever I could. Two years after his re-diagnosis, my son is receiving treatment at one of the top Apraxia treatment centers in the country and has over 30 words and phrases. He continues to work hard daily and seeing his progress has been nothing short of inspiring. I encourage you and every parent or guardian to a child with CAS to trust yourself enough to be a constant voice for your child. The “Thank You” will be well worth the wait.

 

Written By: Arah Iloabugichukwu