18412CX:ODYSSEY SPRING 2004** 4/21/08 1:08 PM Page 26 FIRST PERSON brady, our firstborn son, has autism Mei Yeh-Kennedy, PhD, holds a doctoral degree in educational By Mei Yeh-Kennedy technology from Capella University. She is a corporate liaison at Viable (www.viable.net), a video Brady and His Family Enjoy Smooth Sailing at First relay service provider. She I first held Brady on February 20, 2003. The first week was a bit rough—he had to be lives in Austin, Texas, treated at the hospital for jaundice—but after that, it was smooth sailing. Brady was an with her husband, Parker, easygoing baby, always happy and attentive. My husband and I did notice that he met and their two boys, Brady physical milestones at least a few months behind his peers, though. For example, he sat up and Riley. at 8 months, crawled at 10 months, and walked at 15 months. But our doctor assured us that this was fine because our son was still within the normal age range for achieving these milestones. (Readers can get more information on developmental milestones and developmental delays from First Signs, a nonprofit organization, at www.firstsigns.org.) Brady had awesome eye contact, and he loved it when we read books aloud to him. By the time he was about 20 months old he could recite the alphabet; count to 20; label many items, including farm animals and body parts; and sign words such as movie, sit, and finish. Inattentiveness and Language Loss Signal That Something May Not Be Right As Brady approached the age of 2, we noticed that he hadn’t started making two-word combinations, and that it was increasingly difficult to get his attention. We thought he might have a hearing loss, since it runs in both of our families. Even though he’d had a hearing screening at birth, we took him for more hearing tests, three in 6 months, which prompted the audiologist to tell me, “You have to accept that Brady is hearing!” Actually, I wasn’t worried about him being hearing at all, but my mother’s intuition told me that something didn’t seem right. We struggled to understand what it was. Was Brady’s language being affected because we, his parents, were deaf? Was he getting insufficient exposure to an auditory environment? Above: Brady We didn’t dwell on these questions for long, however, because Brady gradually started to celebrates his 4th lose language. He wasn’t labeling as much as before. We also noticed that we had to put a birthday. lot of effort into getting eye contact from him. He started walking back and forth by the Far right:Brady and TV, repeatedly taking one or two steps forward and then one or two steps backward, his family. sometimes while clapping his hands. He declined to a point where we knew we needed to get help. We sought evaluations, but the people we spoke to didn’t seem to understand what was happening either. A psychologist told us, “Brady does not have autism because he interacts with people well.” Photos courtesy of the Yeh-Kennedy family 26 ODYSSEY SPR/SUM 2008 18412CX:ODYSSEY SPRING 2004** 4/21/08 1:08 PM Page 27 On top of all of this, I was due any day trained, or kept up to date, on how to known cause, either, though the medical with my second child. detect autism at the earliest possible age. field claims that several factors, And in many cases, once parents learn including genetics and environment, Growth in Autism Awareness that their child has autism, the medical may be responsible. It is also a Outstrips Medical System’s system has little to offer beyond that controversial question whether vaccines Coping Ability diagnosis. play a part in causing autism symptoms. Autism awareness is spreading like Even though there are many good Brady received all the usual vaccinations wildfire. Diagnoses have increased at an books and websites that describe autism until age 3, at which point we decided to astounding rate. The statistic most often and how to detect it early, parents still stop. Our younger son did not receive quoted is that 1 child in 150 has autism. face the tremendous challenge of any vaccinations after the age of 6 By comparison, the rate for childhood obtaining early intervention and other months. leukemia is 1 in 25,000, childhood forms of support. This is probably why muscular dystrophy 1 in 20,000, and celebrities such as actress Jenny Brady Gets a Diagnosis juvenile diabetes 1 in 500. Yet autism McCarthy, whose son, Evan, has autism, Acting on a recommendation from an receives less than 5 percent of the have become outspoken advocates of acquaintance, we contacted a state research funding of many less prevalent better services. agency, the Interagency Council on Early childhood diseases (Talk About Curing There is no known cure for autism, but Childhood Intervention, ECI. (We were Autism, 2008). As if the high rate of there are stories of children who have living in Maryland at the time.) We autism diagnoses were not worrisome recovered through early intervention and learned that Brady was eligible for enough, many doctors are not properly biomedical approaches. There is no service because of his expressive language SPR/SUM2008 ODYSSEY 27 18412CX:ODYSSEY SPRING 2004** 4/21/08 1:08 PM Page 28 ORGANIZERS OF 2006 DEAF AUTREAT OVERWHELMED BY ENTHUSIASTIC delay. This was a whole new ball game, RESPONSE, RESTRUCTURING and, unfortunately, the experience was GROUND-BREAKING CONFERENCE TO not positive: We were battling with ACCOMMODATE ATTENDEES’ DEMANDS professionals who we felt did not FOR ASSISTANCE AND INFORMATION understand our culture, our language, or our child. Though we constantly tried to Dear Friends: educate them about our needs as Deaf parents, as well as the traits of our son that seemed atypical of autistic children, I am a deaf mother of a deaf son with autism. In the spring of 2006, I they consistently failed to acknowledge established the very first Autreat for Deaf and Hearing families with deaf or what we were telling them. hearing autistic children along with my co-chairperson, Stefanie Ellis-Gonzales, Nevertheless, the experience made me a fellow deaf mother of a deaf child with autism. This groundbreaking retreat stronger. I was learning the hard way was held at Camp Lakodia in South Dakota on April 7–9, 2006. what felt right for my son and what The autreat was such a tremendous success that it was truly a rewarding didn’t. It was the hardest thing I’ve had experience for all. A total of 22 parents, 16 children, and 8 speakers were part of to experience as a mother—to be very this first-ever event. Information, ideas, and encouragement were shared during intuitive and be a fighter. Further, my those few days that could not have been possible elsewhere. husband and I spent so much time Plans for the Second Deaf Autreat in the spring of 2008 have been put on talking and trying to decide what was hold due to the tremendous demands put on the original committee that created best for Brady that we didn’t spend the initial Deaf Autreat. enough time grieving or coping with the diagnosis. Brady doted on his new baby The response by attendees of the Deaf Autreat resulted in a demand for brother, however, and started attending assistance and information to meet the needs of: pre-early childhood education class twice (cid:129) Deaf autistic children of deaf parents a week. (cid:129) Deaf autistic children of hearing parents After several evaluations, a (cid:129) Hearing autistic children of deaf parents psychologist formally diagnosed Brady with pervasive developmental disorder The Deaf Autreat Committee needs to restructure the original goals and when he was 38 months old. We dove priorities to meet the above needs mandated by the attendees of the first into researching online—our only source conference. The committee also is in the process of working with the American of information. Believe me, this is a vast, Society of Autism (ASA) to obtain collaborative support as groups with mutual confusing sea in which to swim. I’ve interests. Therefore, the second Deaf Autreat conference plans will be compiled a list of some of the many signs announced at a later date. of autism published on the Internet, The logo as seen above was designed by a deaf parent of a deaf autistic child boldfacing the ones I noticed in Brady who participated in the Autreat. The sign in this picture is the new official sign for autism. The hand that is going inside symbolizes the autistic person’s inclination to be Join a new study on engaged within the own self, and the cupped hand Autism Spectrum Disorders and Deafness represents his world, or a protective layer, where the autistic person retreats. The sign also Has your Deaf Child been diagnosed with Autism? represents “inclusion and involvement” in which the autistic individual serves as a reminder of how Videotapes of your child’s First and Second Birthday vital it is to give and receive love and attention, are being collected to investigate early signs which are essential to humanity. of Autism in Deaf Children For more information about Deaf Autreat, please feel to contact me at [email protected] You will receive a $25 Gift Certificate for participation and a copy of your child’s birthday on DVD . With warm regards, Parents please email Christen [email protected] more information Rosangela George *All videotapes will be returned* Deaf Autreat Chair This project has been approved by the Gallaudet Institutional Review Board 28 ODYSSEY SPR/SUM 2008 18412CX:ODYSSEY SPRING 2004** 4/21/08 1:08 PM Page 29 Left: Brady loves to play outdoors. between the ages of 24 and 30 months: Some with children with Battles autism. In a 1999 Social Skills Are Lost, report, the U.S. (cid:129)fails to respond to his or her name (not But More Surgeon General all the time, but enough for us to Are Won: wrote, “Thirty years notice) Insurance, of research (cid:129) has poor eye contact (began after age Treatment, demonstrated the 30 months) and the Right efficacy of applied (cid:129) appears not to hear at times School Setting behavioral methods in (cid:129)resists cuddling and holding At first it was a constant reducing inappropriate behavior (cid:129)appears unaware of others’ feelings battle with the insurance companies and in increasing communication, (cid:129)seems to prefer playing alone—retreats to get the services Brady needed. Our learning, and appropriate social into his or her “own world” health insurer kicked us off our health behavior” (U.S. Department of Health plan as soon as it found out about Brady’s and Human Services, 1999, p. 164). Language formal diagnosis of autism. Brady now Several other therapeutic approaches have (cid:129)starts talking later than other children has his own health insurance through the gotten favorable reports, such as (cid:129)loses previously acquired ability to say Texas Health Insurance Risk Pool, for relationship development intervention, words or sentences (began after age 24 which applicants are eligible if no other play therapy, and sensory integrated months) insurance plan will accept them. The therapy. Children with autism also (cid:129)does not make eye contact when annual cost of Brady’s therapy is now benefit from speech and occupational making requests (not all the time, but nearly $45,000, but it is not covered by therapy, which typically is offered enough for us to notice) the Risk Pool insurance. As The New through school. (cid:129)speaks with an abnormal tone or York Timeshas reported, “Most insurance However, attending school and rhythm—may use a singsong voice or companies do not pay for therapy for receiving ABA therapy was not the only robotic speech developmental disorders like autism, treatment we wanted to pursue for (cid:129)can’t start a conversation or keep one though a few companies offer Brady. We wanted to try other going reimbursement as part of their health approaches as well while our son was (cid:129)may repeat words or phrases verbatim, benefits” (Tarkan, 2002, para. 23). young. It was overwhelming to try to but doesn’t understand how to use them We didn’t agree with the school figure out which to try. That was half the district in Maryland about the setting battle; the other half was getting Brady Behavior where Brady would be placed when he to willingly participate in the treatment. (cid:129)performs repetitive movements, such as turned 3. We felt strongly that he would We took him to a doctor associated with rocking, spinning, or hand flapping (the benefit tremendously from a peer Defeat Autism Now!, a project of the routine of walking back and forth by learning environment where there was a Autism Research Institute that educates the TV began at age 30 months) good mix of levels, but the district parents and medical professionals about (cid:129)develops specific routines or rituals wanted to place him in a less biomedical approaches to treating (cid:129)becomes disturbed at the slightest heterogeneous setting. We were already autism. He had a battery of blood tests change in routines or rituals burned out from fighting ECI and the done. The one thing I remember this (cid:129)moves constantly health insurer, so we didn’t waste a lot of doctor saying to us was, “Do you know (cid:129)may be fascinated by parts of an object, time before we started looking for who will be Brady’s best teacher?” We such as the spinning wheels of a toy car another school district. answered, “Us, his parents,” and he said (cid:129)may be unusually sensitive to light, Within a few months we decided to “no,” and pointed to Brady’s youngest sound, and touch move to Austin, Texas, where our son brother, who was 8 months old at the now attends a mainstream preschool time. And he was right. The point I am trying to make here is program within the Eanes Independent that parents shouldn’t wait for more than School District. His class has a good mix With Clinic and School one red flag or accept a doctor’s of normally functioning children and Settings in Place, Things assurances. As soon as parents notice even children with special needs. At the same Start Going Brady’s Way one of the signs, they must push for time we were looking for a new district, After living in Austin for five months, evaluations and assistance. It can take a we were eyeing a private clinic that Brady finally started attending the long time to obtain a diagnosis, but you provided applied behavior analysis private clinic 10 hours a week. He’d been want your child to get all the (ABA) therapy. Much research has been on a waiting list since we’d moved. interventions as early as possible. published on the success of ABA therapy Perhaps it could have been worse. As The SPR/SUM2008 ODYSSEY 29 18412CX:ODYSSEY SPRING 2004** 4/21/08 1:08 PM Page 30 Left: Brady learns the most from his best teacher, his younger brother, Riley. New York Timeshas reported part, we did so by e-mail and video “Even parents who decide relay. to pay for treatment have In the last couple of years we trouble finding private have begun to participate in Deaf specialists. Autism schools Autism, a web-based community and private behavioral for families with members who are therapists typically have deaf or hard of hearing that have a waiting lists of more than a child with autism (see year” (Tarkan, 2002, para. http://www.deafautism.com). We and 26). to sit with us. Other days he’ll try to run the other parents involved with Brady currently attends his all over the place. Brady exhibits interest Deaf Autism are working together to mainstream preschool program in the in a variety of things, though he also meet a common challenge: incorporating Eanes Independent School District 28 shows interest in specific things and has ASL into all aspects of our children’s hours a week while continuing to go to his favorite items. Overall, he has shown learning environments to help them the private clinic 10 hours a week. He a good ability to rotate interest. He loves become fluent in both ASL and English. keeps making progress. Two weeks after the computer and is capable of These parents are a crucial support group he started school, his teacher wrote, “The navigating through programs for our family. past few days he has gotten really sad and independently. He also loves being We were thrilled when the first even cried during [a particular] song. I outside—running or being on the swing. Autreat was held in 2006. Autreat is a pulled him to the back of the circle today When he is home, he frequently engages retreat for families with deaf or hard of when the song started and he walked in self-stimulating behavior, or hearing children with autism that is led around the circle and then got right in stimming—which continues to consist of by Rosangela George in association with the middle and clapped his hands and walking back and forth by the TV. His Deaf Autism. Unfortunately, I was smiled the whole time. He dropped to therapist has said that most families see unable to go, but parents who did attend the floor and then got back up every that because the child is releasing stress spoke highly of the face-to-face time the song called for it. Very from “behaving as the society expects” opportunity to learn from and interact appropriate and engaged! We heard lots during the day. This is what makes it with other families in our native of language today too!” difficult for us to get Brady involved in language and to share common In May 2007 Brady’s teacher wrote, family activities at home. His expressive experiences within our culture. (For more “He’s been saying, ‘I want _____’ with language is still limited to asking for information on Autreat, see less prompts and following the arrival what he needs. He is still not able to http://www.deafautism.com/autreat.html.) routine with less prompts. He’s doing initiate conversation or talk about his Like all families with an autistic child, better with ‘look at me’ but still needs to day at school. we hope we are on the right path to our work on it and also walk with me. His child’s recovery and that we will be able correct production of words is difficult We Learn We’re Not Alone: to provide him access to every possible for him, but he tries.” Building Community With opportunity for growth. This is from December 2007: “Today Other Families Like Ours [a classmate] discovered feathers in the As time passed, I talked more with the References art center & she was tickling us with it. doctor and read more, and the Talk About Curing Autism. (2008). Brady loved it! We were able to get him information I’d been hearing finally Latest autism statistics. Retrieved from to chose if he wanted to be tickled on his began to make sense to me. The Internet www.talkaboutcuringautism.org arm or leg & he was saying ‘more tickles was still our family’s main source of please’ to [a classmate]. Very sweet information about resources and services Tarkan, L. (2002, October 22). Autism interaction!” for children with autism. But as therapy is called effective, but rare. The But as the doctor had predicted, informative as the Internet was, we New York Times. Retrieved from Brady’s younger brother, who is now 2 craved to learn more about how other http://www.wrightslaw.com/news/2002/jayne years old, is his best teacher. He prompts families, especially deaf families, were s.tarkan.nytimes.htm Brady to participate and is very patient doing with their autistic child. We when Brady doesn’t do what is asked of desired opportunities to meet with other U.S. Department of Health and Human him the first time. When we go out in families to learn about what they did or Services. (1999). Mental health: A report of public, we can never predict how Brady tried or heard about from others. But it the Surgeon General. Rockville, MD: will behave. Some days he’ll seem normal was a challenge to communicate face to National Institute of Mental Health. to public eyes; for instance, he’ll be able face with hearing parents. For the most 30 ODYSSEY SPR/SUM 2008