Published onTrisomy 21 Update
Stephanie Rosati-Pratico talks about her family's experience with living with Down syndrome and the role Special Olympics has played in their lives.
Many parents have or will experience the joy of their high school senior receiving college acceptance letters. In my list of dreams for my children, that falls somewhere toward the bottom. When my son John, 20, and my daughter, Sara, 15, were born with Down syndrome, I knew the likelihood of receiving even one college acceptance letter may not be a reality. However, the day John received his letter of acceptance for Team New Jersey in the 2014 Special Olympics USA Games, I believe I experienced the equivalent.
Over the years, I have spent countless hours in doctors’ appointments, IEP meetings and on the phone with various state agencies discussing my children’s diagnoses, limitations and challenges. Fortunately, after shedding many tears, I realized early on that although it is important to recognize the areas of development that need support, those are not what define the wonderful people my children are.
Although John was fortunate to reach some of his developmental milestones with minimal delays, Sara’s road has been much more difficult. John actually learned to walk at 16 months; Sara was over 3 years old. In spite of their varying abilities, we were at home at Special Olympics.
Role of Special Olympics in the lives of children with Down syndrome
Special Olympics is where we go for sports training and competition. My children need to be in a place where, despite their disabilities, they are among their peers, can have the same experiences as any other child and are valued for their special abilities. It is so wonderful to have a place in the community where we can be a “typical” family.
Regardless of what sport or event they are in, our family sits in the stands of — or often stands anxiously on the sidelines — cheering and jumping and sometimes praying, just like other parents and siblings. It is hard to describe how that feels as parents who were never certain when our children were born that they would live to see their first birthday because of their medical issues. When you begin to raise a child with special needs, especially one with chronic medical needs, it is very easy to get caught up in what is emergent; you almost simulate a firefighter’s approach.
Then one day, someone walks into your life from Special Olympics and makes you remember that part of being a child is just that: being a child — having fun, playing sports and building friendships. The people and programs at Special Olympics have enabled John and Sara to experience that.
In addition to the obvious aspects of fun, the therapeutic benefits are the best, bar none. I have come to realize that the most beneficial therapy is therapy John and Sara receive that they don’t even realize is therapy. These training programs encompass so many aspects of learning because my children are challenged to listen, follow instructions, and use their gross and fine motor skills, along with cultivating their social skills.
When I think back to when John started playing Special Olympics basketball, I can remember being so thrilled that he would grab the ball and run toward a basket — not even necessarily his team’s basket. It never occurred to me then that one day I would have the opportunity to watch him compete as a power-lifter on Team New Jersey in a national competition.
As John has become a better athlete over the years, competition has become more meaningful to him. He understands that practicing hard and really giving it his all has a tremendous benefit, which comes full circle when he is being honored with a medal. He recognizes and appreciates the different levels of achievement between a gold vs. a fourth-place medal. I learned a long time ago it is easy to teach our kids how to be winners, but much more difficult to teach them how to handle disappointment. Throughout the process, we talk often with John about how awesome this experience has been and that no matter what medal is on his neck at the end of the games, he is already a winner.
There has been no greater joy than to watch my sweet little boy grow into such a fine young man. Given the challenges John has faced (whether it be emotional, academic or medical), the fact that he has made it to this level of competition is a testament to the man he has become, largely due to his own tenacity and hard work. This competition is the embodiment of everything good and beautiful about John and his peers! It’s those moments when these beautiful athletes transcend the achievements of their typical peers and teach us such a valuable life lesson. I can only hope the community will open themselves to our athletes during this week so they can experience the enormous joy and perspective John brings to us every day.
Reprinted with permission from the June 17, 2014, Huffington Post.