It’s October!!

Down syndrome awareness month

My FaceBook feed is flashing blue and yellow, October has arrived. If you didn’t already know, October is Down syndrome awareness month. I have a love/hate relationship with Down syndrome awareness month. I’m not so sure how I feel about ‘celebrating Down syndrome’ especially when I think about all the parents and kiddos who are really struggling with the health, behavioral and other complications from Down syndrome. Just the other day, I talked to a mama whose baby spent the first 14 months of his life in the hospital and had been admitted again. Those stories are just heartbreaking and frustrating. However, I do think the idea of spreading ‘awareness’ is worthy. Sharing the stories of success and triumph should carry just as much weight as the stories of struggles and setbacks. It’s a time for our community to really support each other as we try to share what this experience is like with others.

If I were honest, I’d have to say I also have a love/hate relationship with Down syndrome. In the past few months, I’ve had to really dig and share more of my thoughts regarding Down syndrome in front of people and with people who know little about Ds. Of course, this causes me to really reflect on my relationship with my son and the fact that he has Down syndrome. Add to that the idea that he is no longer a cute and charming little kid. He is fast becoming a teenager and his personality is emerging. I’m very happy to report that I love the young man he’s becoming. He’s engaging, thoughtful, funny, observant and more than capable of getting into mischief. He is a dude. On the other hand, he’s stubborn at times, prone to odd sensory moments and has difficulty expressing himself. We truly do have a lot of fun with him and I wouldn’t trade him for the world. Our family also makes lots of accommodations to adapt our busy lives to fit with Jake’s needs. Sometimes we do this unknowingly and other times we do it begrudgingly. However, that doesn’t mean that I wouldn’t take away the Down syndrome if I could, because I would. What it does mean is that I no longer wonder what he would be like without Down syndrome. I can no longer imagine him without Ds because it is part of what makes him Jake. It’s a big deal that I have come to this level of acceptance and it makes the future way less scary.

As I have shared our story and talked to others about Down syndrome I am reminded at how little many outsiders really know or understand Down syndrome. They simply aren’t aware of the issues that accompany a Down syndrome diagnosis. They often dwell on the cognitive issues but have no clue about the medical, physical and behavioral issues that come with the extra chromosome. Many believe the myth that our kiddos are always happy and are little angels here on earth. They then cross their eyes when you explain that his not so happy issues are related to many factors from sensory & communication issues to actual physical complaints. In fact, they aren’t aware that for many of our kids, cognition issues are the least of their concerns and they are way more capable than people know. Of course, we know that with capability comes mischief and sometimes, as I am discovering, more than a little teenage attitude.

For obvious reasons, I’m not always ready to roll out my blue and gold ribbons to celebrate Down syndrome. I’m tired, done advocating and my kiddo can be a real butt. While I am pleased with his development, he’s not the rock star that you often see pictured as the awesome person with Ds. That’s why my recent increased involvement with the Down syndrome community has been to beneficial to me. Every week I get to see people with Down syndrome of all ages and capabilities trying their hardest and just being themselves. The little kids are so darn cute I love being with them. However, I have got to say that I have really grown to appreciate the wide spectrum of personality in older kids and adults. If you haven’t gotten a chance to participate in a dance party with ‘the dudes’ or others, you are really missing out. Being with them makes me aware that celebrating life and the little things is well worth the effort. So, maybe my experiences have changed my viewpoint of October, ‘The Down syndrome Awareness Month’. Learning to accept a diagnosis and grow with it is a journey. Sharing that acceptance with others in our community is supportive. Spreading awareness about the little things that come with Down syndrome is advocating for more acceptance within a wider community. Celebrating our differences is pretty liberating.

President of the Board GiGi’s Playhouse Milwaukee, Sue Pelikan