CARD October 2014 Newsletter

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3901 Greenspring Avenue, Baltimore, Maryland 21211

card.kennedykrieger.org

October/November 2014 • VOL. 7, ISSUE 5

Our Medical and Developmental Services By Melanie Pinkett-Davis, LCSW-C Caregivers of children with an autism spectrum disorder (ASD) often seek a professional to provide a comprehensive look at their child’s development, as well as clear feedback with treatment recommendations. Children with ASD are at greater risk for seizures, allergies, GI difficulties, and genetic/metabolic abnormalities. Therefore, it is advisable for them to receive medical and developmental monitoring with a physician who is trained in working with children with ASD. Within the Center for Autism and Related Disorders (CARD), developmental pediatricians are uniquely suited to serve in this capacity. Developmental pediatricians who are certified by the American Board of Pediatrics have a child- and family-oriented perspective and are trained on the assessment and management of developmental disorders such as ASD. CARD is privileged to have a variety of developmental pediatricians on staff. Drs. Anna Maria Wilms-Floet and Karina Yelin are developmental-behavioral pediatricians whose extensive training includes an emphasis on psychosocial issues. Drs. Deepa Menon and Brenda Harris were trained in neurodevelopmental disabilities pediatrics (NDD), which focuses on neuroscience and the management of neurodevelopmental disorders. The center is also home to highly regarded child neurologists Stewart Mostofsky, James Rubenstein, and Constance Smith-Hicks. We are pleased to announce that openings are currently available for families seeking the services of a developmental pediatrician or neurologist within CARD. Please contact your current Kennedy Krieger Institute provider to request a referral for medical services in our center. Families may also contact Stacey Duvall at 443-923-7680 for more information.

Children and Screen Time: What Research Shows By Jessica Elwell, MS, CCC-SLP In today’s society, media is increasingly integrated into our everyday lives. From television to smart phones, video games, and tablets, children and adults alike can’t seem to get enough! But how does this increased exposure to media devices affect a young child’s Inside this issue development? For the past several decades, certified medical professionals and researchers from the American Academy of Pediatrics (AAP) have expressed concerns regarding a possible negative correlation between children and Director’s Welcome 2 prolonged media exposure. Their studies demonstrate that while media literacy and pro-social uses of media may enhance an individual’s knowledge and social Employee Spotlight 4 connectedness, the overwhelming saturation of media in the lives of children can negatively impact their development. Upcoming STAR Trainings

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Research Findings The AAP has conducted extensive research on media use in children and has found the following results: 

Many media programs for infants and toddlers marketed as “educational” have no evidence to support the claim. Continued on page 2 1


Child & Screen Time (continued) 

Television viewing around bedtime can disrupt healthy sleeping habits and adversely affect mood, behavior, and learning.

Young children with heavy media use are at higher risk for delays in language development, problems with attention, and behavior difficulties.

Unstructured playtime is more valuable for the developing brain than electronic media and also teaches children how to entertain themselves.

The programs parents watch in the presence of children become “background media,” which decreases parent-child interaction time and may interfere with a young child’s learning from play and activities.

Young children learn best from, and need, interaction with humans, not screens.

AAP Recommendations As a result of their research, the AAP published a position statement in 2013 on children and screen time. The chart shown depicts their recommendations regarding the amount of hours per day children should engage in any type of media activities.

AAP Media Use Guidelines Age

Hours/Day

0-2 years

0

3-5 years

1

6-18 years

2

Additionally, the AAP guidelines gain increased significance when linked with a previous study they conducted, which determined that youths spent an average of 7-plus hours per day using a variety of different media devices. This amount of media usage can displace time spent doing homework, engaging in real-life social and play interactions, and sleeping. To counter this, the AAP recommends that families establish a joint mealtime and bedtime “curfew” for all media devices. They also suggest that all electronic devices be placed outside of the child’s bedroom and that parents co-view media with children when it is being used in order to encourage more social engagement and interaction. This then becomes an opportunity to discuss important family values. By following these recommendations, the AAP believes that children may still gain the benefits of media usage, while reducing its likelihood of harming their development. For more information about children and media usage, visit the American Academy of Pediatrics (AAP) website at aap.org

14th Annual CARD Conference - Autism: Advances in Research and Services October 16 and 17, 2014 North Baltimore Plaza Hotel in Timonium, MD

Register now at autismconference.kennedykrieger.org At CARD, we hope to alleviate some of these concerns by working with you to answer your questions and provide you With Thanksgiving fast approaching, many of with the support that you need. We are thrilled that our us make a list of the things for which we are medical physicians have a shorter waitlist and can address thankful. For those of us who have a child with these issues quicker. We also hope that you’ll join us at our an autism spectrum disorder (ASD), this list conference this October to learn more about topics that may may be focused on celebrating our child’s relate to your child’s immediate needs (e.g. how to facilitate successes. In addition to being thankful for our child, we communication) and future needs (e.g. the transition process may constantly worry about their future. We may worry for adults with autism). We are honored to host several about whether or not our child will continue to make strides, distinguished scholars and learn from their expertise. I hope what types of programs and events are appropriate for our that you’ll learn and get inspired at our conference! child, and how our child will be viewed in our culture (see our interview with a Ghanian parent of a child with ASD). Have a wonderful fall and a joyous Thanksgiving full of friends, family, and laughter! In an American culture driven by technology, we may wrestle with questions about the appropriate amount of Warmly, Sign up to be added screen time we should allow our child to access. As our to CARD’s mailing list! children advance through school, we may wonder how they will adjust to the curriculum and how they will transition to Rebecca Landa Email us at adulthood. CARDnewsletter@kennedykrieger.org Dear friends,

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Autism Through Our Eyes As told to Natasha Lawson, research assistant Matthew* is an eight-year-old boy who lives with his parents and two brothers. His parents first became concerned about Matthew’s development when he was between two and three years old. At that time, they felt that Matthew’s language was not progressing as expected. When he was three-and-a-half years old, Matthew was diagnosed with an autism spectrum disorder (ASD). According to his parents, Matthew “loves food, playing silly pranks, and playing with his brothers.” He is also proficient at playing the piano and enjoys playing it in their house and at church. Matthew’s family is from Ghana, and the interview below exemplifies how the core symptoms of autism are the same across cultures. Matthew’s father met with one of CARD’s research assistants, Natasha Lawson, to discuss the impact of raising a child with autism. How has Matthew’s autism impacted your family and individual day-to-day lives? As Matthew’s parents, we don’t want him to feel left out. In Matthew’s earlier years, there were times where his tantrums and outbursts were more frequent to the point where it was hard to get him involved in activities. That said, we would often deny the other siblings of opportunities so that Matthew wouldn’t feel left out. What cultural practices, values, or traditions do you teach your children? Is there a difference in the way you teach your child with autism? My wife and I teach all of our sons the same set of values: work ethic, respect, and honesty. We do not make exceptions for Matthew just because he has autism. What do you find most challenging about raising a child with autism? I would say having to carve out extra time to help him is most challenging. Both my wife and I work full-time positions. By the time we get home and try to work with him on academic work, it is quite late, and Matthew is exhausted from his long day of learning and playing. How is autism viewed within the Ghanaian culture? Well, I do not want to speak for all of Ghana, but I would say there is definitely a general lack of understanding of autism and other developmental disorders. In fact, conditions such as autism, ADHD, and Asperger’s are commonly bunched together as mental disorders, [along] with schizophrenia and psychotic disorders, which carry heavy stereotypes of being “crazy”, “not alright in the head”, and “not normal”. [Ghanaian people] notice the difference in interaction, and since it is not the same as the average Ghanaian, it is perceived as odd and somewhat bizarre. Their reaction stems from a lack of understanding of autism. All in all, the general public still lacks common knowledge of the individual characteristics and behaviors associated with autism spectrum disorders. In Ghanaian culture, greeting and dining etiquette are highly valued and taught at a very young age. What is your experience with trying to teach Matthew such practices? Matthew learns a lot through visual cues. Since Matthew and his brothers are always interacting, he does what he sees his brothers doing. For example, when we have guests over and children are greeting elders, he follows how his other brothers interact with them. He knows to greet and eat with his right hand and to respond to his name being called with “yes mom,” “yes dad,” etc. If he does make a mistake with such etiquette, we do correct him, because we want him to know these same values…no excuses. Continued on page 4 *Name has been changed to protect the family’s privacy

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Autism Through Our Eyes (continued) Your family recently took a trip to Ghana. What aspects of the Ghanaian culture did you want Matthew to experience? What activities did Matthew enjoy most about the trip? We wanted Matthew to understand there is a world beyond America. He probably knows there are other spaces, but we wanted him to actually see it and experience the “spatial” and “textural” diversity in the world. In Ghana, accommodations are less restrictive. Matthew and his brothers were able to step outside the house and play freely in a vast open compound. As parents raising a child with autism, what do you want most for your child? We want Matthew to overcome his condition and become independent. We want him to communicate independently, so he may express his many abilities to his full potential. Although our child is on the spectrum, he is still full of promise, and we want to continue to raise him to fully express his God-given talents.

Employee Spotlight Fatima Salem, MS, CCC-SLP Fatima Salem, MS, CCC-SLP, joined the CARD team this fall as a speech-language pathologist with the Achievements Program. Fatima began her career as a Leadership Education in Neurodevelopmental and Related Disabilities (LEND) trainee during her second year in graduate school at the University of Wisconsin-Madison, Waisman Center. Through that opportunity, she was able to grow her skills as a bilingual speech pathologist and her interest in working with international families. At the Waisman Center, she conducted bilingual speech and language assessments, intakes, parent trainings, and speech and language therapy with many Spanish-speaking families in the area. She also formed a support group for international families of children with disabilities, organizing meetings with professionals and community workers in the families' native languages, and providing parents with information and training. After graduate school, Fatima continued her work with LEND networks by completing her clinical fellowship at Kennedy Krieger’s Neurobehavioral Unit (NBU). She then went on to work at Lois T. Murray, a Baltimore City partnership school, where she took part in an autism classroom modeled after the Achievements Program that provided evidence-based, intensive language intervention for preschool students. Fatima is excited to join the CARD team and bring together her experiences of working with international ____________families and students with ASD.

Walters Art Museum Sensory Mornings By Rebecca German, research assistant On July 13, the Walters Art Museum in Baltimore opened its doors early, welcoming more than 30 families to its Sensory Morning program. Specially designed to help children make connections with art, this free program offers self-guided gallery tours and a variety of hands-on activities like crafts, yoga, dress-up, and sorting and matching games. To support children with special needs, the Walters also provides social stories, sensory fun packs, and a sensory break area. “Museum staff are understanding and welcoming of children making a lot of noises and bringing sensory items with them,” explains Ashley Hosler, senior education coordinator at the Walters. She also remarks that professionals from Kennedy Krieger Institute who volunteer at Sensory Morning are “incredibly instrumental in helping these programs run.” The next Sensory Morning will be held on Sunday, October 26, from 9:00 to 11:00 a.m. It will focus on the theme of emotions and will feature Renaissance and Baroque portraiture. To register, e-mail ahosler@thewalters.org, or call 410-547-9000 (extension 325).

Free Upcoming STAR Trainings for October and November Filling Your Toolbox with Visual Strategies– Wednesday, October 15, 2014, 11:30 a.m. to 12:30 p.m., presented by Shelley Green, MS Using iPads in the Classroom– Wednesday, November 19, 11:30 a.m. to 12:30 p.m., presented by Deidre Rabuck, MS For more information or to register, visit kennedykriegercard.eventbrite.com.

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