The moment our daughter Shira was born with Down syndrome in 1997, a strong support team of family, friends and community began to form.
My friend was with me in the delivery room when Shira was diagnosed and immediately called her husband. He went to his boss, said there was a family emergency and arrived at the hospital within minutes.
The recovery room quickly filled with rabbis and friends, some of whom have children with Down syndrome. Each offered positive support as my husband Todd and I accepted the challenge of raising a child with special needs in addition to our six other children.
Rebbetzin Feige and Rabbi Michel Twerski returned to visit us at the hospital the next day with a special request. Still in the yearlong process of mourning his mother, the rabbi asked us to name our special daughter after her. Her name, Shira Devorah Chaya, honors the memory of Rebbetzin Devorah Leah and simultaneously creates a bond between their two neshamas (souls).
What a beautiful way for our rabbi and rebbetzin to make the statement that our child would be a fully accepted and beloved member of our community.
At every turn, we were guided by the hand of Hashem (G-d). From the school lunches that miraculously appeared on our doorstep for the older kids, like manna in the desert, right after Shira was born, to the recommendations for everything from vitamin therapy to a feeding specialist, our team grew stronger and stronger as Shira grew.
When we started a strenuous physical therapy program that required a lot of home follow-through, community children popped in (on their own initiative) to entertain and distract Shira. Whether in shul, at home or in the neighborhood, people lined up to hold, amuse and shower Shira with love.
When it was time for Shira to go to preschool, we spoke with Rivkie Spalter, director of the Mequon Jewish Preschool, who unequivocally said that Shira was welcome in her program. When I told her that Shira has Down syndrome, she said that she knew and that every Jewish child deserves a Jewish education.
With that in mind, when she hired a new teacher, she chose one with a background in special education. Early in that year, it became apparent that additional resources were needed, so Rivkie enlisted the services of Keshet, a Jewish Family Services program for children with special needs.
Keshet means “rainbow” as it applies to the uniqueness and individuality of each Keshet child as they add to the beauty of our world. Our connection to the program began with an aide who worked with Shira at MJP eight years ago. Now, as Shira walks to school each morning with her friends, we continue to be grateful for Keshet.
Shira has a program specifically designed to allow her to reach her fullest potential while staying within the Jewish educational setting of our choosing.
The Keshet staff — along with Shira’s teachers at Yeshiva Elementary School, her occupational and speech therapists, and us, her parents — developed an individualized program in both Jewish and secular studies. With it, she receives personal instruction and is wholly integrated in her class.
Shira is thriving in this environment, becoming an excellent reader and mastering a wide range of appropriate academic and social skills.
When looking at options for summer day camp, I remembered an article in The Chronicle about Albert & Ann Deshur JCC Rainbow Day Camp and their Shiluv program for children with special needs. From my first conversation with RDC director Lenny Kass, I knew it was a perfect match.
Lenny’s intuitive ability to identify and meet the needs of each camper, not only the ones with special needs, makes RDC an extraordinary place for kids. At RDC, Shira is totally included in a group of girls at her grade level. This group has an extra counselor, available to provide any additional assistance she may need. All year long, Shira talks excitedly about camp, counting down the days to summer.
During the school year, Shira participates in activities with the Friendship Circle, a Lubavitch of Wisconsin program that matches teen volunteers with special needs children. At monthly events, Shira is able to bring a friend and participate in a variety of entertaining activities.
From the moment of Shira’s birth, we were well aware that we were in for many special challenges but our family never doubted our ability to meet them. Given my Master’s degree in special education and our family’s strong belief that Hashem has a purpose for giving us Shira, we remain confident that we will continue to be successful raising her.
Our primary goal is for Shira to be a part of the Jewish community. But we also want to demonstrate that children with special needs have gifts in many areas and can contribute to our society.
We trust that Hashem will continue to guide our way and place loving people and outstanding resources within our reach.
Terri Miller lives in Milwaukee.
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