NEWSLETTER OF THE NATIONAL DOWN SYNDROME CONGRESS SUMMER 2015 DOWN SYNDRO ME 38 OL. V A REMARKABLE WOMAN Paula Hirschoff In this issue LETTER FROM (Editor’s note: Paula Hirschoff wrote this piece in December as a holiday letter to friends. THE PRESIDENT . 18 In this adaptation, it became a tribute to her sister Heidi who died last year. A sister who had an enormous influence on the writer’s life.) SIBLINGS . BROTHERS AND SISTERS .. 20 My sister Heidi died on March 15, 2014, after a long decline. Another sister and I had been her guardians since 2000, but as big sisters, we’d been loving AN UNCOMPLICATED LIFE . 22 her and helping with her care for 55 years. Heidi was born with Down syndrome (Ds) in 1958, a time when doctors still 10 DEFUSING PHRASES advised parents to expunge memories of such newborns by institutionalizing TO USE AT IEP MEETINGS . 23 them. Instead, our folks brought her home. It was never a question. That was SELF-ADVOCATE CORNER: a crucial decision in shaping our lives, both as individuals and as a family. DOUG MCBRIDE . 25 Stereotypes about people with Ds abound, even today. They are characterized as simple folk, good natured and loving. At Heidi’s celebration of life service, INCLUSION: CELEBRATION her caretakers spoke of her golden smiles and warm hugs. Without doubt, she OF DIVERSITY IN ACTION . 26 gave those in abundance. Her smile could light up a room. Her joyful welcome INFANTILE SPASMS IN could make you feel like you were the most spectacular human in all creation. CHILDREN WITH DOWN I concurred with those tributes. SYNDROME: INVESTIGATING Yet Heidi was more complicated than most people realized. She never talked A RARE BUT SERIOUS much, but her mind was full of ideas; it was frustrating for her to be unable to CONDITION . 28 express them in words. She would get agitated and difficult. I longed to know what she was thinking. NDSC 2015 ANNUAL GENERAL MEMBERSHIP MEETING . 29 continued on page 19 ESPASMOS INFANTILES EN NIÑOS CON SÍNDROME DE DOWN: INVESTIGACIÓN DE UNA CONDICIÓN POCO FRECUENTE PERO GRAVE . 30 PAULA AND HEIDI HIRSCHOFF DOWN SYNDROME NEWS I S S N 0 1 6 1 - 0 7 1 6 Publisher: National Down Syndrome Congress LETTER FROM Executive Director: David Tolleson THE PRESIDENT General Correspondence and Memberships: National Down Syndrome Congress It is hard to believe that as I 30 Mansell Court, Suite 108 Roswell, GA 30076 write this it’s already May, and our annual convention is just phone: 800.232.NDSC fax: 770.604.9898 email: [email protected] around the corner! I can’t wait website: ndsccenter.org to see so many of you again as Statement of Policy and Disclaimer: well as meet new families and This newsletter reports items of interest relating to Down syndrome and provides a forum for others. self-advocates in Phoenix. For The NDSC does not promote or recommend any those of you who are first time therapy, treatment, etc. NDSC will not espouse any particular political or religious view. Individuals or attendees, I know you will find a organizations referred to are not necessarily endorsed gathering place of like minds, high hopes, and realized dreams. As you by this publication or its editor. The National Down Syndrome Congress works to educate, advocate and can imagine, our staff and Board of Directors are working feverishly to empower. We are the leading national resource of make sure everything is in place so you can fully experience our “Giant support and information for people seeking to learn about Down syndrome. Family Reunion,” filled with learning, laughter and love for all children The editor reserves the right to make corrections as and adults with Down syndrome. are appropriate and in accord with established editorial practice in material submitted for Your Board of Directors has been hard at work this year, collaborating publication. Submitting an item to the editor to use in DSN gives permission to do so. with other national and international partners to ensure we are moving Reprints From DSN: the Down syndrome movement forward. The passage of the ABLE Act, We invite editors of other newsletters to reprint items the nationwide debut of the movie “Where Hope Grows,” improvements from Down Syndrome News, provided proper credit is given to the source. Please delineate clearly the to the Adult Sibling Toolkit, as well as dedicated staff for African material you are reprinting and indicate that it American and Spanish outreach are some of the highlights in the Down comes from Down Syndrome News, newsletter of the National Down Syndrome Congress, 30 Mansell syndrome community. Court, Suite 108, Roswell, GA 30076, ndsccenter.org Please note that for material which the DSN reprinted with The NDSC’s website has a beautiful and engaging new look with permission you must contact the original source. updated navigation tools and additional resources, materials, and Board of Directors: information that is only a click away. We are committed to continuing Marilyn Tolbert – President to create more new programs to better serve our members, enhance Bret Bowerman – Vice President communications and advocacy for greater information sharing, and Andrew Bean – Vice President improving and developing more programs for self-advocates. The NDSC Carole Janine Guess – Vice President Lori McKee – Vice President is excited about the future, and we are honored to serve as your national Shawn W. Hardister – Treasurer organization focused on families and creating a better world for Julie Harmon – Secretary individuals with Down syndrome. Jim Faber – Past President Bruce Bennett • Christopher Bennett I’m looking forward to seeing so many of you in Phoenix! If you are Regina Britt • George T. Capone, M.D. unable to attend, stay in touch via our website, Facebook and Twitter. Daniel Chaplin • Kate Dougherty Together, we can change the world for individuals with Down syndrome Chandra Torry, Pharm.D. • John T Farley and make the world a better place! Tonia Ferguson, Esq. • Viviana Fernandez Kathleen Forney • Dana Halle, Esq. My best, Nadine C. Maes • Kishore Vellody, MD Mission The mission of the NDSC is to provide information, advocacy and support Marilyn Tolbert, President concerning all aspects of life for individuals with Down syndrome. Vision The vision of the NDSC is a world with equal rights and opportunities for people with Down syndrome. 18 • DOWN SYNDROME NEWS • VOLUME 38, #2 A Remarkable Woman never went alone beyond the was deeply troubling. In fact, it was continued from page 17 driveway would try to find the horrible. We were agonizing over old house by herself. what to do when suddenly and quietly, our beloved, caring mother After an hour or so the phone passed away. She had a range of passions. Music rang. Former neighbors were calling was one of the most intense. With a to ask whether we’d sent Heidi In the midst of mourning, the task remarkable memory for songs, she over to visit. Relief collided with of telling Heidi seemed formidable. could name what was playing on astonishment. With her favorite doll I feared an extreme reaction. Yet the radio before it registered on our Mattie tucked under her arm, she when I finally told her, she accepted subconscious. She could identify had negotiated busy streets, traffic the sad news stoically, as if she instruments in the orchestra by sight lights and 16 long city blocks. I already knew. If Mom was gone, and sound. She loved Broadway wondered then what else she might she no longer needed to come home musicals and ballet. I once watched be able to do if she and Mattie just to be there for her. She began eating her perform ballet steps, trancelike, strode out into the world together. again. I brought her home to spend a couple days with Dad, Lori (our across the living room floor. It was Heidi had always lived with our caretaker), and me. beautiful but mystifying, as if folks, but as they aged, I worried emanating from a source beyond our that she was isolated at home and That evening Heidi was busy, as reach. As a child, she had said she that we had no plans for her future. always, bent over pen and paper. wanted to become a ballet dancer. With much effort and the help of a Before going to bed, we found the Girl Scouting was another love. social worker, we found her a place note that she had painstakingly When her troop began meeting in a group home and a day activity printed. This time she had found less often, she drew on her fantasy center. We thought weekends with the words to express what was in her world and began running imaginary Mom and Dad would ease the heart: “Dear Mom. Missing you. meetings on Wednesday nights, transition for everyone. Love Heidi.” complete with recitation of the Heidi was a remarkable woman, Girl Scout Promise. The marathon “I worried that she fierce in her loves and loyalties and meetings would last until she fell was isolated at home often unfathomable. Life with her asleep in the early morning hours, was not easy. But she pushed us to exhausted from her leadership and that we had no raise the standards for what we responsibilities. plans for her future ”. expected of ourselves, especially our That fantasy world hid some danger acceptance of eccentric behavior as well, a lesson I learned one day and human foibles. She helped us But after weekend visits, Heidi when she was 12. We were home realize that everyone has a deep would refuse to return to the alone when she told me she was interior life and hidden talents.