Abilities Count More Than Disabilities--Raising a Child With Down Syndrome

With October being Down Syndrome Awareness month, we have had the pleasure of having Karen McConeghy Prewitt join us as a guest blogger. Karen is mother to Caleb, and one of the leaders behind Caleb’s Crew. Caleb has Down Syndrome, but as Karen outlines below, that does not stop Caleb, not even for a second, from enjoying his life to the fullest. We hope you enjoy Karen’s words on parenting below:

Parenthood – it’s a pretty interesting ride, isn’t it? When most parents find out they are expecting, you start thinking, researching, reflecting. Not quite sure what’s going on, we attempt to do our best by baby, figuring the journey out as we go.

Parenthood 2.0 for us came just about 13 years ago, when we discovered our then 26-, 24- and 17-year old children were going to be joined by our bonus baby. Surprise! We had some research to do. When we discovered we were expecting a baby in the fall of 2006, our youngest daughter was looking at colleges, and we were making travel plans; the proverbial trip to Italy. Caleb was a surprise all the way around, sporting an extra chromosome when he arrived. Our trip indeed, became a "road to Holland" (see the poem by the same name) when we not only had to figure out life with a new baby, but also life with Down syndrome.

Those first years flew by - filled with therapists and specialists, making plans, discovering new friends and our other travel companions on this unique road. Although his road was parallel to his siblings, it was…different. We learned about Early Intervention, heart conditions and hypothyroidism.  School began early for him, and therapists came and went. We learned about the need for advocacy and being the squeaky wheel. Support along the way was greatly appreciated.

Fast forward to today.  Caleb is now 12 - bridging the gap between child and adult.  He's grown tremendously this year, and so have we.  We've had to narrow our focus in order to start looking further down the road...to really dig deep and begin exploring what his adult life might look like.  I'm a planner by nature, always looking ahead.  Having a child with “unique abilities” forces your hand a bit in that respect.  Things take planning to work out successfully, for the most part. 

This is not to say we don't enjoy our lives!  One of the best things Caleb has brought to our lives is the gift of treasuring each day; of living life to the fullest.  He loves his life.  He has friends, he has activities. He loves his school and sports and family.  He has taught us joy, and he's taught us patience.  He's expanded our vision of the world, to include others that we may have missed earlier.  He brings color to our living; excitement and certainly, love.  He loves unconditionally, the best lesson he's taught us.

As not only a parent, but someone who has worked “in the field” now for most of Caleb’s life, people often ask me for advice.  What should their child's behavior be like?  What road should they take for school?  How do they find resources?  How can they encourage their child?  All my best answers come from our experiences with Caleb, and those wonderful lessons he's taught us.  My advice? Your child is his or her own person, with their own unique qualities.  What are their strengths?  How can you build them up?  What tools do you have in place to help them grow; to feel nurtured; to have their own version of success?  It looks differently for each one of us, whether we have a disability or not.  As a parent, that's what our ultimate role is – to guide and to help them fly. 

Our parenting road with Caleb may be a little different. We don’t want him to be like anyone else though. As we’ve discovered, he has his own talents and gifts. Each of our children do. “Success” for Caleb really depends on Caleb. But he knows we’re there behind him, figuring out the journey as we go, trying to do our best by him. Really not so different, is it?

Peace,

Karen, “Caleb’s Crew”

Karen is a long-time resident of Jacksonville, FL, spouse, parent of two children, and advocate for those with Unique Needs. After the arrival 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 twelve years working with a number of disability-related organizations locally, statewide and nationally. Her passion is making sure parents have information and resources.

If you’d like to connect with Karen on social media, you can find her on Facebook, Instagram, and Twitter.