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Celebrate the Milestones

Brenda Veselka

Victoria Pearl

My name is Brenda Veselka, and I am the proud mom of four-year-old Victoria Pearl. When I was approached to share a few words about my daughter's success story, I was at first taken aback by the request. That was due to the fact that I am always so focused on the next step, the next goal, the next task at hand that I had been missing the small successes that were right in front of me. It made me reflect on the necessity of taking time to appreciate the always slow, and often subtle, successes along the way. So here is a bit about Victoria's journey, but MY journey, too. It's what I like to call our success story in progress or "A Lesson to be Learned from Ferdinand".

Our journey began in January of 2007 when my husband and I joyfully welcomed Victoria. She was born healthy, so I thought we were home free. We could go live our lives as I envisioned - afternoons spent playing at the park, cooking dinner for Daddy... I hadn't anticipated that she would be terrified to get on playground equipment, gag at the smell of most foods, and refuse to eat them once they were served.

She was my first child, and although I read every baby book on the market, the realization that something was amiss came slowly to me. Although frustrating, I thought little of her eating habits. Aren't many kids picky eaters? When she didn't want to join in an activity, I often referred to her as Ferdinand the Bull from the children's book, preferring to wander around and smell the flowers. Wasn't that sweet? Her clumsiness never resulted in injury and became one of her endearing traits - I even teasingly called her "Gracy". In short, I celebrated what I chalked up to being her quirkiness!

Also, she met all her first milestones - barely within the range of normal, but still NORMAL! That is until she turned two and still wasn't talking. After an evaluation, she started speech therapy right away for what I was sure would be a 2-4 month process. After six months, the realization that it was something more serious was obvious, and she was diagnosed with Childhood Apraxia of Speech (CAS), a neurological speech disorder.

About this time, we had started to get invited to birthday parties. I went from being excited about receiving an invitation to cringing when one was received. The parties were torturous and the first place that I probably figured out something other than her speech was not quite right. While the other children were running around, splashing in the water, hitting pinatas, bouncing in the bouncy houses, Victoria was running for the door. I would come home and wonder what was wrong, and I would cry.

Victoria at dance class

My speech therapist had been suggesting an OT evaluation and the words "sensory issues" were mentioned. I had a very narrow view of what "sensory issues" meant and was sure my daughter didn't have them. After additional prodding by the speech therapist and my growing feeling that something else was going on, I had the OT evaluation. I went from being sure of everything to being sure of nothing. She now had a Sensory Processing Disorder (SPD) diagnosis coupled with her CAS diagnosis. New words like proprioceptive and vestibular would soon be part of my vocabulary.

Victoria is not a typical SPD kid, although I would imagine that no two kids are alike in how SPD manifests itself in their bodies. With the help of my OT, we developed a therapy plan, which included two hours of private therapy each week, as well as suggestions for how I could help her at home. Those plans included getting Victoria involved in activities that would support the therapeutic process and get her around typical kids - such as dance class and gymnastics. That was a difficult step for me because I was afraid of how she would react in such an environment. I am happy to say we DID eventually try some classes - not always successfully. Figuring out the balance of protecting and pushing continues to be a difficult one, but I know it is essential for her continued growth.

Victoria on a jungle gym? Truly a milestone to be celebrated!

I describe the last two years as a fact-finding, book/article reading, therapy-attending, conference-going, bank account-draining, tear-shedding whirlwind. Much of it has been spent with a heavy heart and swollen eyes. I have gone through almost a grief process: denial, anger, guilt - but now on most days, acceptance. While I am two years into my journey, I know that I have a long way to go. I have had to accept that there is no fix for this but that the goal that it can be managed is a realistic one. I will keep working in partnership with my therapist, school, family and friends -those people who are vital in this journey to help Victoria manage her SPD in a way that will enable her to have a full life. For right now, though, I will remind myself to not only focus on what lies ahead, but also on these successes that are happening along the way. For me that means watching videos of my daughter from the most recent birthday parties we have attended. They show her riding a pony, trying to pump her legs on a swing and even sliding down a slide - in a bouncy house, on her tummy, face first!

While we couldn't do what we do without the help of those people I just mentioned, it is parents that are on the front lines day in and day out battling this disorder. I needed to be reminded and hopefully can now remind others, too, my fellow warriors to put down the shields and forget the heavy lifting for a moment. Instead, sit down and feel the air on your face and the grass below your feet and enjoy your children, because if you forget to do that, you forget to smell the roses along the way - and Ferdinand the bull really had a good idea about that one!

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