Looking Back/Looking Ahead: What Will Life Be Like With Your Child Who Has Down Syndrome?

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Looking Back/Looking Ahead

I was asked a while back friend about our early days with Caleb. Where was my head back then? How did I process the diagnosis, and what happened after that? What were my hopes and dreams for Caleb, and did they change after his diagnosis? This sweet mama is concerned about her child’s development and what the future might look like. Of course, she is, because she cares for her child. It’s a natural parental instinct – for every one of our children, but more so if your child has a disability. The default for almost every parent when they learn they are expecting is that they will have a typical “healthy” child. If you happen to be surprised by a disability diagnosis, unless you’ve had an opportunity to interact with someone with a disability/condition/difference, you really don’t know much about any of it all initially.

Caleb Prewitt Down Syndrome Advocate

I like to say that Caleb’s birth didn’t thrust us into a new world, but actually expanded our world vision to include others that had not been part of it (much, sadly) before that time. It was a shock, for sure. But I really had no preconceived notions about him before his birth. We knew he was a boy, and that was about it. I didn’t have dreams that he would be the President, a professional athlete, an actor, an artist, a musician, etc. We were just thankful for this bonus baby and took things day by day.
As such, we didn’t have that difficult of a time with his diagnosis. No mourning of the baby that we thought we’d have, because our minds hadn’t gone there. We dove in and got to work. Perhaps the fact that we were older parents and had raised children before helped? Who knows. I just know that even early on, we knew he was a blessing, not a burden. We celebrated his life! And wanted others to too! We were eager to learn everything we could to help him learn and grow.
We’ve had struggles, of course. What parent doesn’t? Our struggles are different with Caleb than they were with Courtney. She was quick to learn, a smart cookie. Everything was fairly easy with her. Caleb, on the other hand, was late with so many things – walking, talking, etc. But we just kept plugging away. Trying to expose him to as many situations and opportunities as possible. When he started soccer at three years old, he had just started walking, so kicking or anything else was quite a stretch. But we kept going to practice. He mostly sat and watched, but we felt it was productive, being there. We were exposing him to new friends and new activities, and in talking with parents who were there, we were learning from those who had been on “the journey” a bit longer than us. He didn’t participate much that year, but the next year, he was right in there with the other little ones.
One of the best things, for us, when Caleb was young, was our local Down Syndrome Association. Eleven years ago, most of the social media support groups were not around. Facebook was new; our online support was limited to BabyCenter (which was very helpful BTW). But those early days of connecting with other local parents who were in our shoes helped so much. We shared our struggles and our successes. We had playdates and workshops. We learned together and supported each other. And now, all this time later, we are still friends through this common denominator called Down syndrome.


Caleb Prewitt Down syndrome advocate

What were some of our biggest fears back then? I think it’s safe to say that “Acceptance” has always been a concern. It’s one of the reasons why we worked (and still do) work on appropriateness with Caleb. Being polite, having proper etiquette, social skills. They will take you a long way in life, and it’s no different with someone with a disability. Certainly, there are social cues that he will never understand; subtleties that even some typical people don’t pick up on. But for the most part, he is pretty good in public, unless he’s tired or not feeling well.
Speech and language was another concern, especially as he gets older. Caleb does speak, although sometimes Mom or Dad has to be the interpreter 😊 Caleb’s had Speech and Language Therapy since he was a baby. We still work on it – daily. Again, exposing him to situations and activities helps, but I feel as though he might always struggle with this area. It’s a tough one for most of our kids.
His strengths? His big beautiful smile, certainly. His love of life, of enjoying each moment. He loves sports, he is a good friend and great encourager. He is quite social. He is a great traveler. He loves to dance, and to cook with his dad. Having worked “in the field” for some years now, I’m aware that using his strengths is something we can (and will) be doing to consider job opportunities for the future. His future? Who knows? Maybe something with a culinary program. Maybe a restaurant. Maybe working for Publix, a great company that both his dad and I have worked at. Maybe college, or a trade school. Options such as these are growing by leaps and bounds for individuals with intellectual and developmental disabilities. We look to the future with excitement for Caleb, and will encourage him in whatever path he might choose for himself.
So, here we are, at ELEVEN. What’s that saying about the days go by slowly, but the years speed past? SO true. How can it be? The future looms closer than ever before. Looking back, however, I can say that parenting Caleb has been quite a journey so far. Challenging, rewarding, fun, joyful, difficult. Filled with adventures and disappointments, but always filled with love. Would we change Caleb if we could? Would we take away the Down syndrome? No way. Even with all the hard times and struggles, Down syndrome is just part of Caleb. He wouldn’t be Caleb without it. We love our son – just the way he is. His life is absolutely worth living and I will continue to shout that to the skies as long as I am able.


Caleb Prewitt Down Syndrome advocate

My advice to parents of younger ones with Ds? Keep up the good work. Look for support when you need it, be the support when you can. I know what it’s like, but I also know when you look in your child’s eyes, that amazing love that radiates out. They are worth it, every single baby.


Karen Prewitt

Karen is a long-time resident of Jacksonville, FL, spouse, parent of two children, and advocate for those with Unique Needs. After the birth of her son Caleb in 2007, who was diagnosed with Down syndrome at birth, she has embraced the special needs community. She has spent the past eleven years working with a number of disability-related organizations locally, statewide and nationally. Her passion is making sure parents have information and resources.


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