How many kids do you have and who in your family has special needs & how long have you lived in Westport? My husband and I have three kids. We moved to Westport when our oldest was 10 months old. He’s now a junior in high school. Our daughter, who has Williams syndrome, was born a couple of years after, and we eventually had a third.
What is the biggest challenge in taking care of a child with special needs to date? Our daughter was born with some substantial medical and developmental challenges. But the biggest challenge was finding ways that would allow her to grow up and develop like any other child, meaning at her own pace.
What do you enjoy most about having a child with special needs? I love how genuine our daughter is. The love she has for people is pure and un-calculated. The happiness she experiences when she does things that she likes is complete. The sadness that she feels when others get hurt is devastating. She is a reminder of what all of us should be more often: unfiltered.
How has your own life been impacted after having a child with special needs? Our life was thrown upside down when she was born, for all of us. But we soon got comfortable with our new normal and couldn’t imagine our family any other way.
How has having a child with special needs impacted your other children? Both our boys adore their sister. They each have their own special relationship with her and value her outgoing personality. She is the perfect ice breaker in every situation and she will always be their biggest fan.
What helps you relax and de-stress? Nothing feels better than accomplishing something so I aim for simple, satisfying things like baking a cake, building a puzzle or going for a walk.
What is the best piece of advice you have received on this journey of uncharted waters? Take it one day at a time. Little bites are all you can handle sometimes so knowing that it’s ok takes the pressure off.
How are you involved in your local special needs community? When our daughter was in second grade or so, I joined the SpEd PTA Committee and served for a few years. I was always surprised with how few options there were for children with special needs to participate in a meaningful way in sports and other after school activities, just like their peers. I happened to attend a Special Olympics fishing event one weekend and discovered the amazing programs that they organize. So I approached the Westport Y and asked if they would start some S.O. programs. Within a few weeks, they had launched an incredible swimming program for 21 athletes. Our daughter got to compete in the S.O. Summer Games and won two gold medals and a silver. It was amazing. One of her school mates also competed and won three golds that year. Both of them were asked to appear on “morning news” at school the next day, which gave them such a boost. By fall, the Y had added basketball to their roster of special ed sports and the following spring they added track and field. They also expanded special ed swimming instruction, added special ed dance classes and began a floor hockey class.
More recently, I launched a Facebook group called Special Westporters. The goal is to help spread the word about events that benefit the special ed community, from young children all the way through adulthood. These events include after school activities, special programs, and educational events.
If there is one thing you hope people can take away from your story what would it be? Having a child with special needs doesn’t define what (s)he and you can or can’t do. You just need to find a way to do the things you enjoy your way.
