BIG INSPIRATION IN A tiny PACKAGE- how a little girl with CAS taught me to believe and persevere.
I received the phone call after recently rejoining the workforce from maternity leave with my second child. I remember exactly where I was when the service coordinator called to ask if I would consider joining the team of a 2 year old diagnosed with Childhood Apraxia of Speech (CAS) whose parents are both special educators. Whoa! Talk about pressure! The family was requesting me because of a recommendation they had received from another family I worked with whose son had CAS. I had recently developed an interest in the speech disorder after serving two other children with suspected CAS. I took a couple of courses and settled on a therapy kit to address CAS but like they say, “experience is the best teacher” and I wanted some of that. So I agreed to be Camryn’s speech therapist, anxious to learn more about CAS through my treatment of her. Although I didn’t know it at the time, Camryn would end up being MUCH more to me than just experience.
I first met Camryn one Spring evening at her home. She was a pint-sized toddler full of spunk and cheer. Our first interactions let me know it was going to be a long road for her. I explained to her parents that her speech therapy would be more like a marathon than a sprint. They asked me questions like, “Will she ever talk ‘normal’?“ and “Will this be something she will struggle with for the rest of her life?”. All valid, good ‘concerned parent’ questions, all of which I could not answer. And so began my journey with Camryn, me teaching her-her inspiring me!
ASHA (American Speech-Language and Hearing Association) defines Childhood Apraxia of Speech (CAS) as a motor speech disorder where children have difficulty saying sounds, syllables and words in the absence of muscle weakness or paralysis. The brain has difficulty planning the movements required of the tongue, jaw, lips, etc. needed for speech production. The child knows what they want to say but are unable to get their mouth to move in a way to produce the words. These children require frequent, intensive speech therapy to improve and sometimes CAS co-occurs with feeding difficulties and/or cognitive delays/learning difficulties. There is little data available reporting the prevelance and incidence of CAS however, some sources suggest that 1-10 in 1000 children have the disorder.
When I started with Camryn she could say /s/ and /ah /. That was it. Because of her sweet, laid back personality she wasn’t yet experiencing much frustration. Plus her mom had been very proactive in teaching her sign language, which gave Camryn a way to express her immediate desires. We started with 2 sessions per week and continued on with this schedule for a few years. Her improvement was slow and steady with some bursts of progress here and there. While me being there was important to guide her therapy along, the biggest job was left in the hands of her family. I stressed to them that her progress would be hugely dependent upon them practicing with her EVERY single day. Their dedication was obvious when I would come week to week and witness her saying new sounds and syllables with less effort. Each sound, syllable and word Camryn said was earned. Repetition, practice, dedication, perseverance and determination were required for her to do something the rest of us take for granted. Camryn’s challenges were huge. What I was asking her to do week to week in therapy was extremely difficult but she didn’t give up. When I think of the challenges Camryn has faced over the years I am ashamed to think how quick I am to give up on much less challenging tasks. She has never backed down, only risen up. And her progress and successes are proof of that!
It’s been 5 years since I had the pleasure of meeting Camryn and her family. Today she is an aspiring gymnast who attends kindergarten, speaks in 5 word sentences, ask questions and carries on lengthy conversations. She has inspired me and challenged me beyond my expectations. She is my success story; my proof that hard work and a positive attitude can only lead to awesome achievements! Camryn will go far in this world inspiring others to rise up to whatever challenge they may be facing. I am proud of her, and her family! And Camryn will forever remain one of the strongest, bravest, FIERCEST girls I know!
If you are concerned that your child, or a child you know, may have CAS, contact a speech-language pathologist to request an evaluation. For more information on the disorder visit: www.asha.org and www.apraxia-kids.org.