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brenae My daughter, Emily, was born on July 24, 2007. From the outside, a perfectly healthy newborn. Just one week early, 6 pounds 12 ounces, and 20 inches long. However, as we settled into our daily routine, it was the little things that I noticed at first. Breastfeeding was only okay with her if it was on the left side of her face. That was the only way she felt comfortable. Any touch to the right side of her face would make her very upset. She’d being to squirm and tighten up her body and stop feeding immediately, every time. Bathing her was a struggle as well. She never liked the water to touch her face and using a wash rag was out of the question. Drying her with a towel was also a process that she extremely did not enjoy and wiping baby lotion on her body, she could not tolerate. Crowds of people, although she was just an infant, would make her very fussy and she did never liked to be held, not even by me.

All of these things made me wonder if there was something wrong. When I finally mustered up the courage to ask her pediatrician about it, my worries where quickly dismissed and chalked up to, “Some children just don’t like these things.” I was embarrassed. I felt like the pediatrician labeled me as an overly concerned, inexperienced mother. I tried not to question further and I continued to play the game, as frustrating as it was.

As the months went on, I noticed that Emily was not meeting some of the typical milestones that other mothers commonly mentioned. At every doctor’s appointment, we would discuss the facts. She’s not making sounds, she’s not rolling over, she’s not picking her head up, she’s not sitting up on her own, she’s not crawling, but her pediatrician would just say that she was doing fine and it would come in time. Well, at thirteen months, Emily was walking, but still I found it odd that there were no sounds, she never did crawl, and sitting up on her own was still very difficult for her.

Once again, when I mentioned it, it was dismissed. I started to become even more frustrated but at the same time so confused. Why were my concerns only mine? Was my daughter truly missing some of the pieces or am I being a worry-ward for no reason? So, as before, I continued to play this game with no instructions.

The turning point for us came when Emily was almost two years old. Emily was still making no sounds and when I discussed my concern I was told, “She’s not talking because all of her demands are being met.” I remember thinking “What an absurd explanation. Does that mean that every other child only speaks because their needs are not being met?”

From then on I realized two things; one, that Emily and I would be finding a new pediatrician and two, that the only way I was going to get any of my questions answered was to advocate for Emily all on my own. So, I continued to play the game, but only this time with my own set of rules. I took her to see several different specialists, and kept plowing my way through, spinning the dice repeatedly, until I finally landed into the hands of the right people.

Emily was almost four before she said her first word, “keys” and was diagnosed with global apraxia, sensory integration disorder, and severe hypotonia. But through my persistence and the help of her many wonderful therapists along the way, Emily is now ten years old, and is doing great. She has endured hundreds of hours of Speech, Occupational, Developmental, and Feeding therapy and has made wonderful progress, far beyond what was expected of her.

She is a honor roll student, wonderful, kind, silly, and overly empathetic towards others. She attends a charter School for the Arts and lives for acting, dancing, and drawing and is an extremely talented writer. Her strength and determination is unmeasurable and her self-confidence is truly remarkable! However, we still have our daily struggles, navigating through this game, we now call Apraxia, but as her Mama, I couldn’t be more proud. I still don’t know if there will ever be a definitive ending, and her life might always be just a little different to those around her, but I’d say, that’s just fine.  As far as I’m concerned, we have already won.

 

My name is Brenae Solis and my daughter’s name is Emily. We live in the Tampa Bay Area of Florida. Through the help of Apraxia Kids, formally known as CASANA, I started the Tampa Bay Walk for Children with Apraxia of in 2010. I served as the walk coordinator for the first five years, and as a liaison/ volunteer for the last 3 years. My mission, to honor my daughter, promote CAS awareness, and to lend support to other families like mine here in the state of Florida.