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Dandelions are Flowers, Not Weeds

2014-September 4
by Dawn Pytlik, Office Manager

                                           Matt (age 3 1/2)

Like dandelion seeds, our four main funding categories - mental health, substance abuse, learning disabilities, and intellectual disabilities - have most likely drifted into your life, affecting either someone you know or someone in your own family.

One of these seeds floated into my life fourteen years ago. My twin sister, who was pregnant at the time, had called to let me know that her amniocentesis screening test came back positive: Her baby would be born with Down Syndrome. My heart sank; I can remember exactly where I was and what I was doing. She carried a huge weight of the unknown throughout the rest of her pregnancy -- Would her child have health problems? Would he/she be able to do things that my three healthy boys could do?

Fortunately, her little man Matthew came into the world without any major health problems and has become an engaging, funny young man with a huge personality.  As he has grown, I have observed my sister's joy at being a parent, but on the other side of the coin, I have also seen the many challenges and obstacles that she and her husband have had parenting a special needs child. Honestly, from my observation tower, sometimes the obstacles have seemed as high as Mount Everest. Thankfully there are many terrific community organizations providing services and programming to help families and children, like Matt, deal with every day challenges as well as the "mountains." SABAH (Skating Athletes Bold at Heart) is one of these organizations and has been a part of my nephew's life since he was very young.   

From the time Matt was born, my sister Ilene has networked to find services/programs for her son. SABAH, a therapeutic skating program for children and adults with special needs, was among the programs recommended to her.  She signed Matt up when he was 3 1/2 years old; he began ice-skating in their Evening and Weekend Skating program. Besides the good reviews from other parents, she enrolled him because she wanted to get him doing something physical to work on his balance, coordination and strength, as well as to have an outlet for him to make friends. Now he can skate better than me, forwards and backwards!

As Office Manager, I have had the good fortune to be a member of the Tower Foundation staff for 14 years. Although I am not directly involved in grantmaking decisions, I am well aware of the many agencies the Foundation funds to support individuals with intellectual disabilities and their families, including SABAH. At first I was reluctant to write about my experience because I work at the Foundation. However, I started thinking if you have a developmentally disabled family member and live in Western New York, it is quite likely you will engage with SABAH.

Over the years, I have been to many of SABAH's annual Celebration on Ice skating shows.  It is really heartwarming to see all of the faces of the skaters on the ice. They are stars for the day; and from all the smiles, it is obvious that they are having a great time.  It is a win-win not only for the skaters but also for the parents and families too. Their son/daughter, granddaughter/grandson, nephew/niece is treated like a rock star for the day with clapping and celebration of their accomplishments, both on and off the ice. Many friendships are formed with volunteers, other skaters, families and many high fives given.

This year, Matt's skating coach approached my sister and asked her if Matt would want to be the soloist for their upcoming 2014 show in March, "SABAH Goes for the Gold," to celebrate the Olympic year. The day of the show all 48 of his family and friends watched as he did his performance without a hitch! I have to admit I was very anxious ... sitting on the edge of my seat.  He shined that day! Seeing him "fist pump" the air, skating around the arena after his performance, on the same ice that NHL hockey stars skate on. I was overwhelmed with pride and emotion. It is a day Matt will never forget.

Kudos to SABAH and the many organizations working with intellectually disabled individuals and their families. You make lives easier and help families, like my sister's, feel they are not in it alone. Your efforts are making a difference. Look at Matt. He is thriving and in full bloom!  


 

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