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Mel, Elk Grove, CAStars

Mom of TJ, age 13

MEL AND tjTJ was diagnosed with CAS a month shy of turning 3. Since then, there’s scarcely been a day where I haven’t been called on to be his advocate. Early on, that meant literally being his voice while he was working on his own. Strangely, ages 8 and 9 were the toughest years. I was full of fear for his future. The wear of over half a decade of therapy weighed heavily on both of our shoulders. The ever-widening gap between TJ and his peers became itself an omnipresent entity. He had successfully left behind his AAC device and PECS booklets to communicate in school, but his newfound voice (squeaky, nasal, and toddler-sounding) had made him a pariah. He came home crying. Kids had teased his “baby voice” and one boy had punched him in the chest. Of course, I immediately addressed the incident with his teachers and administrators – but I also scheduled a time that I could discuss Apraxia with the kids in TJ’s class. We’d attended our first Apraxia Conference in Boston the summer before and I came armed with material. After his teacher and vice principal addressed bullying with the class, I gave a brief overview on speech apraxia and discussed how far TJ had come – how hard he had to work every day. I read My Brother is Very Special by Amy May. His classroom teacher organized structured recess activities where TJ would not be excluded. Privately, I scheduled a palate surgery and TJ added voice therapy to his already full therapy load to address his hyponasality.

As of last two weeks, TJ is taking his first extended break from speech therapy in well over a decade. An avid reader, he’s been working on strengthening his typing, grammar and writing composition skills. He is empathetic, open-faced, opinionated, and individualistic. He stands straight and speaks up with veracity and confidence. TJ is very singularly himself. He doesn’t speak like other kids – never curses or speaks mockingly. His voice is very much his own and it has been 100% worth all of the effort to hear.

My Apraxia Mom motto is:

We are tougher than the challenges we face. As we and our kids persevere, we become stronger and surer. It gets better, and so do we.”

Apraxia Awareness Day 2