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Fall 2000 Table of Contents
Versión Español de este artículo (Spanish Version)

The Patience of Justin

By Cheri Scott, Parent and Family Specialist, Alaska Dual Sensory Impairment Services

My husband Allan and I are parents of three kids: Heather Amy, who is 27 and has no apparent disabilities, Daniel, who is 22 with Attention Deficit Hyperactivity Disorder and Learning Disabilities, and Justin, who is 13 and has Fetal Alcohol Syndrome, Cerebral Palsy, Mental Retardation, Dual Sensory Impairment, and Seizure Disorder.

Justin came into our lives as a foster baby when he was 5 months old. He'd been born at 26 weeks gestation weighing 2 lbs., 2 oz. and with a blood alcohol level over twice the legal limit for driving while intoxicated. It took him four days to "dry out" cold turkey. He had many complications during his 3 months in the Neonatal Intensive Care Unit (NICU) at Providence including a detached right retina, damage to the left retina, a grade 3 bleed that left him with significant brain damage, respiratory and cardiac problems and, at times, uncontrollable seizures. When he came to live with us we were told that he would probably not be a long-term survivor. If by chance he did live, he would be almost completely blind, able to see only light and dark contrast. Justin would need full-body support since he'd never be able to sit or stand by himself, and he would require round-the-clock care.

There was no huge miracle that made him a perfectly developed typical boy. But for those of us lucky enough to be part of his life, we know that there have been countless small miracles built out of the hard work, faith, and perseverance of many loving, dedicated people over the last thirteen years. The greatest credit goes to Justin for his patience, sweet disposition and positive nature. He waits for the rest of us to understand what needs to be done. He accepts our fumbling and mistakes as we search for the best ways to help him reach his potential.

Currently, Justin is in 8th grade in an intensive needs classroom with aide-supported participation in regular education elective classes. He walks with forearm crutches, uses sign language, a small amount of speech, and an electronic voice output device to communicate. He reads at a 1st-to-2nd-grade level and loves books. He wears hearing aids, with the addition of a wireless FM system when at school, and glasses to see anything farther than four feet away. He takes medication to keep his seizures under control and to reduce the spasticity in his legs. He also wears plastic orthotic braces on his feet and lower legs to help him walk and stand comfortably.

Last year was busier than usual for Justin. He was selected as the Children's Miracle Network (CMN) Champion for Alaska. He represented Alaskan kids served by the Children's Hospital at Providence at fund-raisers around the Anchorage community throughout the spring. In June, Justin took my husband, Allan, our other son, Dan, and me to Washington D.C. and Disney World for the National CMN Telethon. Justin's favorite part of the whole trip was Disney World's Blizzard Beach, where we spent the steamy hot day floating on inner tubes around and around the perimeter of the park. Other highlights included meeting Mickey Mouse, riding in a little jet boat with his big brother, and the electric light parade in Fantasyland ( three times!).

Hadley School for the Blind selected one of Justin's original pictures for their Christmas card this year, the first time it has used a student's artwork. The card is being sold to help the school raise money to fund the correspondence programs it provides free of charge to individuals with vision impairment and their families. Willard Scott showed the card on the Today Show, and according to the folks at the school the demand for cards was very good.

We're very proud of our son and all the great things he's been able to do in his life - with a little help from his friends.

Our family's experience with Special Education Service Agency's (SESA) Alaska Dual Sensory Impairment Services began about two-and-one-half years ago when our son's hearing loss was confirmed at ten years of age. After years of incomplete hearing tests from audiologists untrained to work with children experiencing developmental and physical disabilities, I took to heart the words of the physician I work with, Dr. Brennan, and took Justin to experts. Three separate testing days confirmed our worst fears. After years of attributing his lack of speech to his other disabilities (Cerebral Palsy from a severe brain bleed at two weeks, following his premature birth at 26 weeks gestation, and Fetal Alcohol Syndrome, Mental Retardation and Epilepsy), we were devastated by the diagnosis.

I remember returning my son to his school and crying as I tried to share the audiologist's report. As we talked, Laura Metcalf, Justin's resource teacher, made the comment that his visual impairment may have been a blessing in disguise. To insure Justin could see our expressions we had always tried to stand close to him when speaking, using sign language as well, because he didn't seem to be picking up speech. Without the diagnosis of a hearing impairment we had no signing support from the school district. Each year, to the best of our own meager ability, we had to educate the new staff on communication techniques to use when working with him. We have been very lucky to have supportive team members willing to follow our lead throughout most of Justin's school career.

We were very late in receiving Justin's diagnosis of hearing impairment. No one can tell us how long he has had difficulty hearing. Recent studies noting the high percentage of hearing and vision problems in children with FAS, however, lead us to believe that he has probably been hearing impaired since birth. It is thought that this high percentage of hearing and vision loss is related to the anatomical differences caused when the cells of the developing fetus come into contact with alcohol during the 19th-21st days of gestation. This is the time when the structures that will become eyes, internal ear structures, upper palate and other mid-face features are forming.

Speech therapists, physical therapists and occupational therapists have been some of our most important team members. Many of the professionals working with our family have had some training in FAS and have a general understanding of how children can be affected by prenatal alcohol exposure. As Justin's main advocates, it is our job to make sure they remember that each child with this disorder is unique and to keep reminding them of the specific ways our son is affected.

Justin has a short attention span. Even when he is intensely interested in what is being presented, lights, movement and sounds from the surrounding area can easily distract him. Leg tremors related to his cerebral palsy can do the same thing.

Justin has sensory and tactile defensiveness. For him this means he is sensitive to loud noise and busy visual environments. His response to too much sensory stimulation ranges from hysterical laughter progressing to tears, staring at bright lights and shaking his hand in front of his good eye, humming snatches of song over and over, or retreating to a quiet dark space like a darkened bathroom, bedroom or laundry room.

Justin is an experiential learner. To understand new things, he has to see, feel, hear and taste them. Abstract concepts are far beyond his understanding. If you say "See you later," he expects you to come visit before bedtime. "Wait a minute," means that when the seconds on his digital watch get to :00 it will be his turn.

Justin has a processing delay. That means that after he reads, and especially after he hears new information, it takes time for his brain to understand the information and decide how to respond. This can take up to 20 seconds if a question is long or complex. It may seem to the person interacting with Justin that he is ignoring them or choosing not to respond to their question. This delay in responding may also be interpreted as a problem behavior.

To compound things, people will quite often repeat or reframe their question, thinking that he didn't hear or understand them the first time they spoke. When that happens, Justin's mind shifts to the new statement and starts from the beginning again, like punching a button on the CD player to go back to the beginning of the song.

For years, school staff members were frustrated when Justin seemed to shut down during conversation attempts. Yet he had no other way of dealing with the unending demands of conversations that he couldn't understand or respond to quickly. So he would resort to his favorite word, "NO," or flap his hand in front of his eye and gaze at the lights in the classroom. As Justin has matured and begun to gain a sense of control over his world, he has learned to use the pointy-finger-to-lips "SHHHHH" sign and sound when he's feeling like too much information is coming too fast.

Justin is a wonderful boy with a sweet, patient temperament. He's also at high risk for being victimized. To Justin the term "friend" means anyone that makes eye contact, smiles or talks to him. Because of his vision, hearing and motor difficulties, as well as his lack of understanding of dangerous situations, he needs constant supervision when out in public. Things like making sure he's aware of curbs and sidewalk edges that could catch his crutch tips, navigating icy sidewalks, high snow berms, and traffic and dealing with loose dogs or predatory people need to be taken into account.

As Justin matures, we (Justin and his family) will continue to be faced with challenges brought on by his disabilities. Still, we are definitely a part of our community, and Justin has many people who care about him. With his continued patience and the support of these community members, we feel optimistic that his life will be rich and full. We know that our lives are certainly richer and fuller for having him.

Editor's note: I met Cheri Scott this summer while I was in Minnesota attending the Hilton/Perkins-NTAC sponsored workshops on Family Issues. During lunch one day, Cheri asked how many students were on the Texas Deafblind Census with an etiology of Fetal Alcohol Syndrome (FAS) or Fetal Alcohol Effect (FAE). FAE is a lesser set of the same symptoms which make up FAS. Babies affected by alcohol can have any or all of these symptoms. FAS and FAE are widely under-diagnosed. Some experts believe that between one-third and two-thirds of all special education children have been irreversibly affected by alcohol in some way. At least 5,000 infants are born each year with FAS; another 50,000 children show symptoms of FAE.

As I talked more with Cheri about this etiology, I realized how important it is for us to be aware of children whose vision and hearing problems may be caused by this syndrome. These children are exceptionally hyper-sensitive or hypo-sensitive to sensory input. As a result, they may be likely to shut down in noisy or visually busy environments, or be very upset by sensory stimulation activities. When we are assessing these children's hearing and vision, especially functional assessments, we may not get responses quickly because of processing and response problems. It would be natural to assume they didn't see or hear the test item, when in fact they might have. Inconclusive or inaccurate testing of their senses may be a real possibility if these factors aren't taken into consideration. Hearing loss for these children can be sensorineural, conductive, a processing disorder, or combination of all three. They may also have vestibular problems that affect balance.

Luckily, these children do benefit from many of the same instructional strategies and modifications that work for the child with deafblindness or visual impairment and developmental disabilities. Using instructional routines, teaching choice-making skills, and structured social skills development can help. Making adaptations for vision and hearing issues such as avoiding glare and bright lights, using appropriate assistive listening devices such as FM systems, having appropriate glasses, using color to add visual recognition, and so forth, can also be important. However, we need to carefully monitor the child's responses, talk to his caregivers (the real experts on his responses/needs), and assess, plan, and work together as a team to make sure the individual child's needs are being appropriately addressed.

Many of these children will not grow up in their birth parents' homes. Often, they may be raised in foster homes or with extended family members. It is our responsibility to make sure these caregivers have the information and support they need as well.

Children with Fetal Alcohol Syndrome have some very unique needs. As you will see in the article "Understanding Issues with Fetal Alcohol Syndrome" by Blanche Stetler, there are some tried and true approaches that should be used with these kids. It is also important to note that some children with Fetal Alcohol Syndrome will not be diagnosed or identified as such. That makes our task as professionals serving these children and their caregivers all the more difficult.

By the way, in Texas we have not identified any children with Fetal Alcohol Syndrome on the 2000 Deafblind Census. Are we failing to identify these children as having FAS, or are we not identifying them as visually impaired or deafblind because of their other disabilities?

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