I am the mother of 3 very different and unique sons. Each of my boys has different looks, different builds, different personalities, different strengths and challenges. They each have different dreams as well as ambitions. It has never been a boring household, for sure, and I am grateful for the experience each of their lives has brought me.
Twenty five years ago I gave birth to my first-born son, James William, III. However, from the get go he was never called James, Jim or even Jimmy; he has always been called Jaz. Jaz has turned out to be the perfect and fitting name for this first born son of ours, this young man who has been and continues to be the light of our lives.
On the day of Jaz’s birth, I was stunned to be informed that our very first beautiful baby boy, had Down syndrome. I had not had any testing done when I was pregnant with him, so this news came as a shock. Even though the news was not what I expected (and I did grieve for what was not to be…) I immediately and unequivocally fell in love with this special baby. In fact, I craved his presence (like I have craved nothing else).Looking back at that time, I can remember not knowing what to expect – the information I was given to read about Down syndrome was minimal and did not portray a very bright future for him. I remember one doctor popped her head in my hospital room and her profound statement to me was, “they like music”. Thanks doc, that was helpful…..
Twenty five years later and I can emphatically state what a bright life Jaz has had and continues to have!!! I jokingly like to say (but I really mean it), that Jaz is the only “functioning” one in this somewhat dysfunctional family of mine. All of my boys know that I love them, but I also know that they would agree hands down that Jaz has been by far the easiest one of the 3 of them to raise!
I could go on and on about why life with Jaz has been so bright. I’ll share a few of his special qualities: Jaz has an innate sense of always wanting to please everyone. He is happy to do what is asked of him (imagine that!), and he always forgives and forgets the wrongs of others. The rare instances he may need to apologize for something, he does so without being told. Jaz truly is one who has the special gift of offering unconditional love to all. He doesn’t care if you are rich, poor, fat, skinny, pretty, ugly, unpopular or famous; he’ll reach out and offer you his friendship. He is happy with what he has and he never complains about what he does not have. He actually tells me every single day, “I am having a fun day”, even on a day when all we did was go to Costco and it was 110 degrees out!
Jaz never rushes through life and because of this, he has taught me to slow down. In doing so, (because of Jaz) I have enjoyed and continue to enjoy, some very special moments that would have otherwise passed me by. A story I like to share… While on a bike ride with Jaz, I was up ahead of him maintaining a steady pace so I could get in a decent workout – after all, isn’t that why I was on my bike? Jaz on the other hand, the one who knows to stop and smell the roses, I noticed had gotten way behind. Irritated, I turned around to see where he was; frustrated that he wasn’t keeping at a pace that encouraged a good heart rate (ha!). When I reached Jaz, I discovered that he was off of his bike and he was looking up at this gorgeous sky full of glorious colors made from the setting sun. Upon approaching Jaz, I heard him whispering prayers to his deceased grandparents as well as a dog of ours that had recently died. When I reached him, he smiled and pointed to the sky and said, “Mom, heaven”. You see, I was riding in the direction opposite of the setting sun and I was totally oblivious to the beautiful sky that was behind me. I would have missed that slice of heaven on that day, had it not been for Jaz.
My husband and I chose to set high expectations for Jaz. We weren’t afraid for him to fail at things and we figured it was worth giving him a variety of opportunities to see what he could succeed at. With this attitude we found activities and opportunities that focused on Jaz’s strengths as well as his interests. In addition, Jaz was provided with the proper support and guidance during these activities. Gratefully, with hard work and determination, he has been blessed with many successes. The doctor who spoke to me at his birth was right. He does love music (ha!) and he loves to perform. With that in mind we exposed him to the world of performing arts. Jaz has been in over 30 performing arts performances (starting at age 2) and he became a designated Thespian in high school. He also enjoys sports and while he couldn’t compete at the level of his typical high school peers, we found a way for him to participate. He was the first person with a disability to be the water boy for his football team. In turn, the baseball team saw what a great water boy he was and they insisted he be the bat boy for what turned out to be the State Champion baseball team. His senior year, because of his popularity, he was elected Homecoming King of his high school (which even earned him a feature in the news, both in the papers and TV). It didn’t hurt that his best friend (they still have an exceptionally close relationship today) was one of the most popular kids of the high school. This friend even included him on his Sr. Prom date – Jaz was the third wheel.
Today, Jaz enjoys a very busy, active and diverse life. We have found that it has worked best for Jaz to have a variety of things to do during the week, rather than just one or a few things. His weekly schedule includes attending an adult day program for 2 or 3 days a week – this program offers all kinds of activities including bowling, swimming, soccer, basketball, tai chi, as well as various outings and field trips. Twice a week Jaz works at his job at Barro’s pizza and once a week he volunteers to teach yoga to preschoolers. In addition, Jaz participates in a social skills group a couple of times a week and he belongs to a Kiwanis-sponsored civic group that meets twice a month. In his “free time” Jaz plays in a 9 hole golf league every Friday with his dad, he talks to his long list of friends on FaceTime or his cell phone, he plays basketball, goes on bike rides, swims, goes out to eat and more. His best friend from high school is now a college grad with a full time job and a steady girlfriend; none-the-less, he has Jaz spend the night at his house at least once a month, takes him out for evenings with “the guys” and they talk every day.
In conclusion… I would like to state that from my perspective and because of my experience, I believe that each child born with Down syndrome enters the world with their own unique strengths, challenges and personality. A child born with Down syndrome is not the label of Down syndrome – he is a beautiful human being with many strengths and gifts to offer, and who happens to have Down syndrome too.
–Jill Pearns is a Special Education Advocate/Consultant. She is available to help families with their child’s special education issues and concerns. Contact Jill at 602-579-0631.
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