There are certain days you never forget. The day you marry. The birth of your children. Another date I will never forget is September 10, 1987. Not because it was my 10th wedding anniversary but because that was the day we learned our nearly 1 year old son, Ryan, had tuberous sclerosis complex (TSC). Like most of you, I had never heard of TSC. I was told it is a genetic condition – so I not only feared for the health of my infant son, I immediately thought of my two older sons. Any diagnosis your child receives is horrid – but when they say “genetic” – it suddenly is magnified beyond belief!
For parents raising children today, whenever you have a question, you run to the Internet and find many resources to help you. In 1987, we hit the library. And we found little information on TSC and what we did find was decades-old research that spoke of institutionalizing your TSC child due to profound mental retardation, uncontrollable seizures, and even worse.
We also found the National Tuberous Sclerosis Association (now the TS Alliance) and learned that this condition is characterized by benign tumors that can grow in many different organ systems. Most common are the brain, heart, lungs, eyes, kidneys and skin. We learned that individuals with TSC often experience varying degrees of seizure activity, Autism, mental health concerns and mental retardation and that TSC brings a wide spectrum of manifestations – from extremely profound to very mild. We knew of no other family member with any of these manifestations and to our knowledge Ryan just experienced a genetic mutation causing TSC. Ryan’s TSC has brought skin, brain and kidney tumors, seizures, Autism, ADHD and cognitive impairment. The TS Alliance was a lifeline of objective information and a great support, helping us to stay on the leading edge of research and meet and become friends with many families who share the same bond.
As Ryan grew, he met nearly all developmental milestones on target; however, when the terrible twos hit they were terrible beyond belief. And by the time he was three or four… they didn’t disappear… they magnified. A growing boy with unpredictable and violent outbursts made family life challenging to say the least. There were no easy answers with Ryan… our parenting techniques were by far the most difficult I had ever experienced but with hard work the outbursts disappeared and a kind young man emerged.
When Ryan was 17 we went searching for a place for Ryan to succeed, to be physically and socially active… and we found it! Special Olympics! Ryan joined a basketball team that first winter and we knew we had found a perfect fit for the rest of his life.
Ryan began competing in the Special Olympics all year long. In 2010 he was selected to participate in the National Special Olympics Games in Lincoln, Nebraska. This was a remarkable experience for him! He traveled with his teammates and coaches via plane, stayed with them in a college dormitory and competed in the Pentathlon and 400m run. He brought home several medals, a new found confidence… and a big smile!
Each year Ryan competes in the State Summer Games. You’ll find him once again on the track at Central Michigan University trying to bring home a gold medal this May! Off the track, you’ll find him having a great time hanging out with his friends and the volunteers who make this all possible.
As a parent of a special needs child, I would like to leave you with a few things I’ve learned through the years that apply to all parents. 1) Trust yourself. You know your child best and you are your child’s best advocate. 2) Get help! You are never alone and there are many, many resources available to you if you just seek them out. Look everywhere: Physicians, Educators, Universities, the Internet and Library, Service Agencies and most importantly – other families! 3) Find a way to allow your child to find success. Whether it is music, dance, art, drama, or athletics – each of us needs to find what makes us happy and successful.
The most important bit of “Mom advice” I would like to leave with you is one I am reminded of every time I travel by plane. “Remember to put on your own oxygen mask first before assisting others.” Take care of yourself. Find time to relax and recharge. Your children deserve a Mom who is strong, happy, rested and ready to take on whatever comes their way.
Picture – Track & Field teammates:
Ryan Groves (participated in 2010 Special Olympics National Games in Lincoln, NE)
Molly Hincka (participated in 2011 Special Olympics International Games in Athens, Greece)