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table of contents - home page - text-only home page A "Cover Girl" with Down Syndrome By Barbara Kolucki (bakoluck@aol.com) The Editor of BabyTalkMagazine, Susan Kane, tells the story of a mother, Martha Beck, who wrote about her son with Down Syndrome. As she sat in her doctor's office waiting for the results of her amniocentesis, she looked at several magazines for new parents. She found that "practically every article featured pictures of newborn babies, and every baby was absolutely perfect: tiny perfect hands, strong perfect limbs, bright perfect eyes. The magazines didn't show any babies like the baby I was going to have". The February 2001 issue of BabyTalkincludes a gorgeous cover of Judy Adams, an infant with Down Syndrome. I am not sure if it is the first - but it is certainly one of the few covers of a mainstream parenting magazine that has featured a child with a disability. Anyone looking at this cover would break into a smile at this engaging child. The issue also includes a feature about various aspects of disability. They begin by advertising that their website, http://www.BabyTalk.comwill include a live chat on February 15 from 8-9 p.m. with Dr. Donald Mattison, medical director of the March of Dimes. Their feature article "Special Babies" is written by Melanie Howard and highlights young infants and children with cerebral palsy, hearing loss, Down Syndrome and autism. With each, the importance of early detection and early intervention (EI) is stressed. Case Studies The first mother, Anita Lichinka, tells about how she knew when her son, Marcel, was born, that something was wrong - he was stiff, he cried a lot and was irritable. She continued to question her pediatrician until at his 9-month check-up, it was obvious that he was not reaching several physical developmental milestones. Anita was told that there would be a three-month waiting list for early intervention and she persisted until they accepted her son after two weeks. The parents finally opted for more expensive private services for their son. But it is clear that today, at 7 years, his accomplishments are to a great extent, due to the physical and speech therapy he received, and the special play and stimulation Anita and her husband integrated into their daily routine with Marcel from the time he was 9 months old. Lucas Battisti was 5 weeks old when he was registered at the Fairfax County, Virginia school. He was the youngest student. He had begun to wear a hearing aid already and began therapy in a special class for deaf infants. Today, at 5 years old, he is in a mainstream preschool for half of the day and spends the other half in a class for deaf children. This early diagnosis is possible today and required in 32 of the States in the USA. The screening test is noninvasive and sends clicks to the infant's ear and then measures responses from either the inner ear or the brain. The average cost of the screening is between U.S. $25 - 40. The importance of early screening cannot be stressed enough as recent studies indicate that when children have a hearing loss identified by 6 months of age, their language skills are developed to a higher level than those where the hearing loss was identified after this age. Ben Shue was diagnosed with Down Syndrome when he was born. His father immediately searched the internet to locate local support groups, recommended books and practical examples of what he and his wife could do on a daily basis with Ben. He was enrolled in an early intervention program but it was vitally important that the time Ben spent with his parents and family extended and complemented what he received in the EI program. His parents point out that "having Down Syndrome is just a small part of who Ben is". They are active in parent support groups on a local and national level. Alarming rise in diagnosis of autism There has been a reported 556 percent increase in the rise of autism in the U.S. from 1991 to 1997. Part of this increase is due to better diagnostic techniques. But there are still many who are questioning and researching the possible bases for such a rapid increase. The parents of Emma Budway say they were lucky. Their daughter was diagnosed at 20 months - when the average age of diagnosis is 6 years. Many say that it is an early diagnosis that often determines if a child with autism will be able to be mainstreamed into a regular school. Emma, for example, stopped her usual stream of age-appropriate babbling around her first birthday. She seemed to no longer recognize her parents and would spend hours in a corner examining a speck of dust. The Budways contacted an early intervention program after their pediatrician was not able to tell them what was wrong. She was diagnosed with pervasive developmental disorder (PDD), which, along with Asperger syndrome, is related to autism. These diagnoses are often difficult and challenging for physicians and it is suggested that parents continue dialog with their pediatrician and press the issue if they feel that something is wrong with their young child. Resources for Parents The article lists several resources for all of the disabilities listed above, together with general resources. Although the contacts are in the USA, the information and parenting suggestions are applicable for families anywhere in the world.
For early intervention and child development information: Early intervention critical to positive outcomes In the U.S., the Individuals with Disabilities Education Act (IDEAS) was revised in 1997 to provide for early identification and intervention for infants and young children. We know that the first three to five years of life are critical in the development not only of the physical brain but how this brain is wired for thinking, language, sight, emotional and social ability. Every time an infant interacts with her environment the connections in her brain become stronger and stronger. The importance of a correct diagnosis together with the onset of speech, physical, occupational therapy as well as other parent/child activities can often determine the child's growth and development. This networking also provides the resources parents need as they grow in acceptance of their child who is disabled and make decisions with regard to everything from education to possible surgery and/or aids. Disabled role models important for child and parents One thing the article does not mention is the importance of families getting to know and spend time with adults who have the same disability as their child. This is important for all disabilities but is particularly important in the case of deafness, as parents often struggle between how their child will learn to communicate. It is critical that parents and young children see healthy, happy and productive adults who are blind, deaf, with cerebral palsy, using a wheelchair, those who have cognitive disabilities, etc. And, they will learn, as we all do, that the more people with disability they meet, diversity within a given "group" will become more and more obvious. Role models can be found in every country I have worked outside the USA for many years. Resources for Early Intervention may not be available everywhere. But it is often very powerful for a family with a disabled child to meet, for the first time, an adult who has the same or similar disability. Once while in Tanzania, I visited a family who kept their blind child hidden in a back room. When we first arrived and asked if we could meet the child, the family denied the child's existence. This happened twice - they told us that their neighbors must have told a lie about them. We returned later and this time we were accompanied by a teacher who happened to be blind and worked in the city far away. He introduced himself to the family, told them about his work as a teacher, as a father and husband. He showed them his braille watch and how he could "read" using braille. The parents were astonished, as this was the first blind person they had ever encountered, except for a few negative images they had seen in the media. They immediately smiled, introduced their son to us - and this young boy also grew up to be a teacher. I applaud BabyTalkfor their landmark work. I found the cover photo and the other positive, active and loving images of the babies in the story to be equally as powerful as the case studies and resources. I would hope, however, that in subsequent issues, there isn't just a feature once in a while about "special kids". I would hope that other infants with disabilities will grace the cover even when there is no special feature on disability. I hope that in articles about general parenting - some examples include parenting of a child with a disability - and parents who are disabled themselves. I hope that the images of children playing with water or sand or mud include a couple of kids with disability along with variety in gender, skin color and culture. And I hope that in the advertisements for diapers, vitamins, books for children - that infants, kids and parents with disability are mainstreamed and included along with everyone else. I certainly "hear" what the mother in the first paragraph said and what she meant. But in my eyes - these kids in BabyTalkare also PERFECT exactly the way they are. table of contents - home page - text-only home page |