Family Support Makes a Difference with a Deafblind Child: Orion's
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FAMILY SUPPORT MAKES A DIFFERENCE WITH A DEAFBLIND CHILD: Heather Withrow is an artist, writer, and track and field coach. Orion’s She is also a reviewer for the National Intervener Certification E-portfolio and a guest moderator Jou rney for the Communication Matrix Community By Heather Withrow (www.communication matrix.com ), and she contributed to creating modules for Open Twenty-five weeks into my pregnancy, we learned that our new son’s eyes Hands, Open Access. were not developing, a condition called complex bilateral Withrow and her husband, Thomas microphthalmia, and that he would be born blind. When Orion arrived Withrow, Jr., are the on July 19, 2010, indeed his eyes had not developed. Further, there were parents of three no responses to the hearing screening tests given at the hospital; a children—Skyler, subsequent test showed profound deafness. Anastasia, and Orion. She welcomes questions While some people feel that an infant who will never see or hear can bring only and comments about heartache, we—his deaf parents, hearing sister, and deaf brother—knew differently. My this article through husband and I were aware of how deafness could be perceived as unfortunate, and we did Facebook ( www.facebook. not like the perception. Our lives are full—both professionally and personally—our com/O.T. Withrow ) or friendships deep, our children active. After the initial shock and grief of learning Orion’s through her blog prognosis, we put on our “Deaf Can” lens to appreciate our newborn son. We were (www.OrionTheKid.com ). overjoyed to meet him and amazed by his beautiful wizard-white hair. We knew he would show us much that we had been missing about deafblind children and about life itself. The cause of Orion’s deafblindness—as well as the cause of deafness for myself, my husband, and Orion’s big brother Skyler—is genetic. My husband and I have Waardenburg Syndrome type 2a (WS2a), meaning each of us carries a single copy of a gene that causes a series of factors, including deafness. Orion got a copy of the WS2a gene from each of us, and the most noticeable results are his deafness, blindness, and lack of pigment in the hair. Dr. Brian Brooks at the National Institutes of Health’s Clockwise from top National Eye Institute, in Bethesda, Maryland, is investigating this condition called left : Orion’s siblings COMMAD (or coloboma, osteopetrosis, microphthalmia, macrocephaly, albinism, and holding him for the first deafness). Apparently, it had not been seen or even read about in medical journals prior time; with teachers in to Orion’s birth. KDES’s PIP classroom; (center) a happy boy at Deafblindness: An Information-Gathering Disability 8 months; with Mommy Deafblindness is not just about the absence of sight and sound. It is so much more than at 10 months in his PIP the sum of these two parts. What one learns from experiencing the collaboration classroom; exploring between a teacher of the deaf and a teacher of the visually impaired is that deafblindness Daddy’s face. Photos courtesy of Heather Withrow 38 ODYSSEY 2017 is a unique condition “out on its own,” intensity, hugs, kisses, and the brush of As the child experiences the cat, with separate challenges and soft cheeks. They can know the warmth recognizes the parts as they are intervention needs from either deafness of the sun; the purring of a cat; and the consistently found in the same places or blindness alone. It is, as Dr. Linda slithering of cold, gooey ice cream as it and the purr as it reoccurs, he or she Mamer—a teacher and consultant in dribbles down their chest. They can builds a memory of these shapes and the areas of blindness, low vision, know the textures of their toys, the feel characteristics into the concept of cat . deafness, and multiple disabilities—has of the toilet lid dropping hard, and Once the child has the concept of what said, “an information-gathering other details of their environment. a cat is, he or she can associate this disability.” Information does not flow as quickly concept, with all its pieces, into first a Some deafblind children may have a through touch as it does through sight. symbolic and eventually a linguistic bit of the senses of vision and hearing, Sighted toddlers identify objects representation. but their primary sense is that of touch, instantaneously. Young and sighted Now as Orion is ready to turn 7 years and this sense attains overwhelming children take in pointed ears, delicate old, we know that once a deafblind importance. Even children who can’t or whiskers, tail, and paws, and they child has a loving family, the top three don’t yet actively use their hands to know right away the object is a cat. A biggest difference-makers in his or her “look” can feel through the skin all deafblind child needs the time to touch life are: over their body. They can come to each of these—ears, nose, whiskers, • early intervention services, know human touch in its gentleness or tail, paws—and to feel the animal purr. 2017 ODYSSEY 39 Left: Orion at 17 each program visited the others’ months during physical program to coordinate care, an therapy time in KDES’s undertaking that was special and deeply PIP classroom. appreciated. Each program’s IFSP contributed to Orion’s growth. While PIP provided language-rich signers who blindness are the knew how to communicate tactilely, the same for all children, county program had essential loaner when a child is born equipment. As a stay-at-home mom deafblind, the impact with a little more “brain to myself” time is unique. than many people, I found it fairly easy Orion received to coordinate the schedules. home visits every These programs—and the support of other week from a the state’s Deaf-Blind Project—enabled teacher of the deaf Orion to begin his development in and a teacher of the communication and physical visually impaired. development early, and the curve of his He also received development was exponential. occupational and physical therapy, and State Deaf-Blind Project we were able to Every state has a federally funded Deaf- borrow equipment Blind Project that families and schools from the county, can contact for technical assistance and including a mobile resources. Projects vary from state to stander and a gait state, but they usually include a director trainer—devices that and specialists in Birth-to-5 education, would support his family involvement, transition, and K- being upright and 12 planning. • the Deaf-Blind Project run by every eventually perhaps learning to walk. During the first two years of Orion’s state with its outreach and technical This equipment allowed Orion a new life, we connected with Maryland’s Deaf- support specialists, and experience with gravity and how to use Blind Project called Connections his legs. This was necessary because Beyond Sight and Sound. We were • interveners who are trained to work without vision or hearing, Orion had no delighted that the personnel from this one-to-one with deafblind access to information about what legs, program involved themselves directly in individuals and enable them to hands, feet, and arms are for or how they our lives, coming to our home, meeting explore the world. are used. Being held upright gave him with Orion’s teachers, and offering the practice of standing and consultations and coaching. They also Early Intervention opportunities for keeping his head up. provided workshops that enlightened Orion began receiving early intervention At 4 months old, Orion had the and empowered all of us—family services when he was only 3 months old unique opportunity to experience two members, professionals, and therapists. in Prince George’s County, Maryland, early intervention programs at the same When Orion was 2 years old, we where we lived. Knowing that early time when he started attending the moved to Texas and the services intervention is key for children with Parent-Infant Program (PIP) at Kendall continued. The names and faces were disabilities, I had wanted to begin the Demonstration Elementary School different, but the hearts were equally intake process even before he was born. (KDES) in Washington, D.C. He already warm … and the expertise, support, and Our oldest child, Skyler, had received had an Individualized Family Service resource connections for our family were county services related to deafness, but Plan (IFSP) through our county of the same. Training and conferences on deafblindness was a new sensory residence as entitled by law, and now he topics such as family leadership, disability for us. We felt we needed had a second IFSP through the school. communication, and interveners fill our help—information and resources—so In both programs, we found incredible calendar—and their services will that we could appropriately support individuals who were joyful and skillful continue through Orion’s transition to Orion at home. We were right. We in working with our son. Although it the workplace! would soon learn that while the physical was not required, representatives from and medical aspects of deafness and 40 ODYSSEY 2017 Interveners • access to social and emotional disabilities. We enjoyed seeing him as Anne Sullivan, the famous partner of development. he responded positively to his fellow Helen Keller, might be regarded as the classmates’ little hands. Interveners are becoming more first successful intervener for a deafblind TSD provided a full range of common throughout the United States child. Interveners are individuals who services—an interdisciplinary team of … however, not quickly enough or in have taken intensive training on people with specialties in speech- large enough numbers to meet the needs deafblindness and work to actively assist language, occupational therapy, physical of the nation’s 9,574 school-aged the deafblind children in their daily therapy, vision, orientation and mobility, deafblind students (National Center on lives and learning.