The National Advocate for People with Down Syndrome Since 1979

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Family Hiatus
Ella at Malahide Castle, Ireland
Ella at Malahide Castle, Ireland
Family Hiatus

The reason I want to share our story is to encourage families, especially families of very young children with Down syndrome, not to set limits on what life with Down syndrome will be like. Life with Down syndrome is a grand adventure! When our second daughter, Eleanor "Ella", was born in 2001 with Down syndrome, I thought my life had forever changed, and not for the better. It was a difficult time and I thought about Down syndrome a lot. Eventually, as Ella grew older, I started to think about Down syndrome less and less. By the time Ella was in first grade and an opportunity for an adventure presented itself, we didn't think twice about Down syndrome keeping our family from doing anything. In August 2009, our family of five left the Florida suburbs to live on a biodynamic farm in rural Ireland for one year. My husband and I were "house parents". We lived and worked alongside young adults with special needs, including several students with Down syndrome. We left behind a very convenient and structured world of inclusive school, friends, activities, private therapy appointments, and individualized education programs. Things are done differently in Ireland. Life is slower and much more relaxed. We learned to balance the high quality of life with a relative lack of services for people with special needs. Ella's occupational and physical therapy routine became fence climbing, flower arranging, bread making and playing the lyre; speech/language therapy was addressed through drama, playing wind instruments and conversing with people from all over the world. Ella never had an IEP at the local school she attended but received everything she needed including an aide in a mainstream classroom. She made excellent progress in reading and social skills. She was invited to play dates on a very regular basis. We had high and low experiences in Ireland but none of us would trade the overall experience for anything in the world. All of us have a better understanding now of what life may be like when Ella is an adult. Our eldest daughter, Mary, may have decided to work with people with disabilities when she grows up. Our youngest child, Dylan, sees no difference between people with and without special needs, or from different backgrounds. Ella communicated her awareness of her own special needs during our stay in Ireland. That moment would have been hard for us no matter where in the world we were but I am glad that it happened during a time when we were living an adventure and not letting Down syndrome keep us from doing anything. Down syndrome has not limited our experiences or adventures in life, in any way. In fact, some doors were opened for us because Ella is a lovely little girl who just happens to have Down syndrome. We chronicled our adventure on our blog, www.familyhiatus.typepad.com.




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