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The Ali-Up Side of Down Syndrome

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If you’d have told me three years ago that my husband and I would eventually start a company driven by the desire to help people with disabilities, I wouldn’t have believed you. If you had gone even further and said I would one day say, “I wouldn’t change a thing,’ regarding our daughter born with Down syndrome, I would have turned my back on you without dignifying what you said.

Well, maybe I would have more simply said “No way,” but my point is, three years ago, I couldn’t possibly see all the good that would come from our daughter, Alisa, having Down syndrome. At the time, I was pregnant and trying to wrap my mind around the prenatal diagnosis we had received and what this would mean to the comfort and normalcy of our lives. I was swimming in a sea of grief, deeply in love with my unborn daughter but wrecked by the reality of an unexpected diagnosis.

One thing I love about being human is the fact that we are able to adapt and change. We are not one-dimensional creatures; we are multi-faceted and complex. We experience a myriad of emotions that stretch us, wreck us, break us down, and build us up. What we think about something or someone one day may change the next day depending on new information, different experiences, and deeper knowledge about the person or topic. In other words, we grow and mature.

I read old blog posts I wrote in the first few months of Alisa’s life — posts filled with the anguish of a grief-stricken mom, and I smile. I remember that mom who fiercely loved her newborn but also ached in the deepest parts of her heart, fearing this new world she had been thrust into without permission. I smile because Friedrich Nietzsche was right about one thing: “That which does not kill us, makes us stronger.”

Purpose from Pain

In fact, though the grief was strong, our love and fierce dedication to Alisa was even stronger. From the moment we learned of her diagnosis, we committed to doing everything possible to help Alisa thrive.

When Alisa was 1 year old, I learned about the incredible therapeutic benefits of mirrors for speech development. Alisa was significantly delayed in speech, so I asked my husband, Trey, to build Alisa a mirror with a balance bar to help her stand. He took off with that idea, building the first of what has become known as the Ali-Up Mirror.

The balance bar allowed Alisa to hold herself up for longer periods of time, building strength in those core muscles that would later allow her to walk, climb, dance and run. The mirror itself engaged her in social interaction as we played and talked back-and-forth through our reflections in the mirror. Alisa made new sounds and explored difference expressions as she worked her facial muscles while playing at her mirror.

Over time, we received encouragement from numerous therapists to make this product available to other children. This is where the vision for Ali-Up Specialty Products was born. The heartbeat of our company is to create purposeful developmental toys for all children, especially targeting the disability population. We sincerely believe in the Ali-Up Mirror because we have seen firsthand how this therapeutic toy has benefited our daughter.

A Worthy Change

I look back on that mom I was when Alisa was born and I see a woman who desperately needed the deepening, the stretching, and the aching of an unexpected diagnosis — without it, my world was too small. I thought the comfort of my “normal” was good enough, but I didn’t realize I was missing out on the richness of a world blown wide open by the beauty of “different.” In the awakening I have experienced since traversing this road of disability, I realize in my most desperate moments I wanted to change my daughter, the person who really needed to change was me. And now, three years later, I find myself saying the words that used to bewilder me to hear: “I wouldn’t change a thing.

Today, I am a mom to a child with a disability, and that phrase “special needs mom” doesn’t bother me like it once did. I think the word “special” has some negative connotations from our culture, but I prefer the dictionary definition of this word: “better, greater, or otherwise different from what is usual.” It is this definition that drives the Ali-Up Specialty Products’ tagline: specialty toys for special girls and boys.

Life with Alisa Jane is certainly better, greater, and different from what is “usual,” and I wouldn’t trade it for the world!

Originally published: July 31, 2018
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