CARD Newsletter - February 2014

3901 Greenspring Avenue, Baltimore, Maryland 21211

card.kennedykrieger.org

February 2014 • VOL. 7, ISSUE 1

Are You Ready to ROAR Again?

We would like to thank everyone who participated in our ninth ROAR for Autism event last April.

We were truly overwhelmed by your generosity and support. With this year’s ROAR just over two months away, we’d like to invite you to join us again for this incredible event.

What is ROAR?

 ROAR for Autism is an annual event that enables participants to break the silence surrounding autism during Autism Awareness Month by raising funds for autism research and treatment programs at Kennedy Krieger Institute. This year, ROAR will be held on Sunday, April 27 at Oregon Ridge Park in Cockeysville, Maryland.  It consists of a 25-mile bike ride, a 5k run/road race, a low-mileage family walk, and a fun festival for the whole family.  If you can’t quite drag yourself out of bed early on a Sunday but you still want to support autism research at Kennedy Krieger, you can register to “Snore for ROAR,” and you’ll receive a commemorative T-shirt.

Why support ROAR?  The proceeds from ROAR enable us to make major advances in understanding the causes of autism, as well as in developing methods for earlier detection of ASD, developing more effective treatments for ASD, and determining methods for helping teachers and health care providers to more effectively improve the lives of individuals with ASD.  ROAR funds enable us to mentor a new generation of brilliant young scientists who will then bring their unique knowledge and talent to CARD, and who will help us make discoveries more quickly.  ROAR funds enable us to transfer the latest scientific discoveries into models of clinical care that can benefit individuals with ASD and their families now.

Inside this issue Director’s Welcome

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Employee Spotlight

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Upcoming STAR

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Trainings

 ROAR also provides a way for all of us to come together to remind the community about autism, and the importance of embracing individuals with ASD. Through ROAR, many people have the opportunity to interact and learn from individuals with ASD and their families in a setting where we can all have fun together.

How can you help?  Run, walk, bike, or snore for ROAR and enjoy the family fun activities.  Donate to this worthy cause and ask others to donate.  Volunteer at ROAR Visit the ROAR website at roar.kennedykrieger.org to register or donate.

Want to help out? See the attached form for suggestions, or call 443-923-7300.

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CARD Playroom Dedicated in Honor of Maria Santa Zannino On January 15, we held a ceremony dedicating the playroom at CARD in honor of Maria Santa Zannino, a local woman who passed away last year at age 80. A lifelong resident of Baltimore, Mrs. Zannino raised eight children while managing her husband’s funeral home business. In lieu of flowers, her family has asked for donations to be given to Kennedy Krieger Institute. To date, they have raised $5,000 for CARD, and are continuing to fundraise. We thank the Zannino family for their enormous generosity, and know that the families we support will benefit greatly from their gift.

Plaque honoring Mrs. Zannino, which is located in the playroom at CARD Dear Friends, With the holidays a mere memory, we now focus our attention on our annual event to raise community awareness about autism, to bring all of us together for a great day of togetherness for family and friends, and to raise funds for cutting-edge autism research at CARD.

The Zannino family with Dr. Landa at the dedication ceremony Credit: Stuart Dahne Photography

important event. See what great ideas you can come up with for ROAR this year- and I hope to see you at the big event.

I want to thank the parents who have worked so closely with us this past year, and who will be working with us this coming year, to help us make CARD exactly what children with ASD and their families are looking for. We are in the process of developing a new set of services for families, so please stay tuned. If you are interested in volunteering to be a part of a parent advisory panel or learning how you can be an agent of change to help other families, please let us know by emailing Maraya Bitner at bitner@kennedykrieger.org.

This event is more important that I can ever express. The funds raised at this event are efficiently and carefully used to bring high-impact, innovative research into fruition. Scientists from many fields put their heads together to find new ways to understand how people with autism learn, how their brains develop, how to recognize I am looking forward to seeing you in April at one the earliest signs of risk for autism, to develop more of our free lectures and at the ROAR event! effective interventions, and much more. So much benefit Sincerely, has come from our ROAR research in the past, and our findings have enabled us to apply for (and receive) funding from federal agencies so that we may take the work to deeper levels. We welcome boy scout and girl scout teams, sports teams, neighborhoods, sororities and Questions or Comments? Please email: fraternities, aunts and uncles, and everyone else to join CARDnewsletter@kennedykrieger.org together and form challenges to raise funds for this

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Our Clinical Trials Unit

By Charles Heisey, CTU Recruitment Coordinator

With each passing year, the percentage of children diagnosed with genetic, developmental, and psychiatric disorders increases. Now more than ever, we are in need of new treatment options for these children and their families.

The Clinical Trials Unit (CTU) at Kennedy Krieger Institute has been developed to work with patients and families, research clinicians, and private industry to unlock the potential of new interventions to prevent and treat these disorders in children, adolescents, and adults.

There are many reasons to participate in clinical research: taking advantage of an opportunity to play an active role in your own and your family’s health care; gaining access to new research treatments before they are widely available; gaining access to medical attention from an expert team of doctors, nurses, and other medical staff; as well as creating an opportunity to help those in the future by contributing to medical research now.

With patient safety always a priority, our expert team of doctors, nurses, and coordinators are dedicated to giving you the best possible experience during your participation in the study. Participants are fully informed about the study up front, and given the opportunity to have all their questions answered to ensure that they can make an educated decision about participating.

If you would like to hear more about the CTU at Kennedy Krieger Institute, or are interested in finding out about the research opportunities we have available, call 443-923-3850, or email Researchtrials@kennedykrieger.org.

The Clinical Trials Unit is currently recruiting the following groups for studies:  Males and females, age 6-14, who have recently started taking Zoloft or started psychotherapy  Males and females, age 7-11, with anxiety or depression  Males and females, age 12-17, with major depressive disorder  Males and females, age 12-17, with a mental illness that can be treated with antipsychotic medication  Males, ages 18-45, with autism

Employee Spotlight—Laurie Chaikind, MSW, LGSW Laurie Chaikind, MSW, LGSW, is a licensed social worker who serves in a clinical capacity within CARD. After earning her BA in psychology and education from the University of California, Berkeley, Laurie served as an ABA instructor at the Ivymount School, Inc., with a wonderfully diverse group of students, ages 5-21. Subsequently, she pursued a graduate degree in social work at the University of Maryland to incorporate family systems into her work with children with special needs. Throughout her graduate career, Laurie continued to focus her specialization in youth with developmental disabilities as she completed internships at the St. Elizabeth School in Baltimore City, the Child and Family Support Program within the Kennedy Krieger Institute, and PACT’s Therapeutic Nursery and Growing Together programs. Exposure to infant development in these settings piqued Laurie’s passion for the unique role of caregiver-child attachment in the development of positive psychological health in children with special needs. Laurie continues to develop her research and clinical expertise in the field of developmental disabilities through partnerships with Dr. Melissa Bellin at the University of Maryland and social work colleagues at the Kennedy Krieger Institute. Together, they have several active research and curriculum projects.

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Tips for Organizing Your Child’s Play Space

By Jennifer Sharpless, MS, CCC-SLP

Does your house look like a toy store exploded? The holiday season can do that to you. If you are feeling overwhelmed, your child is definitely right there with you. February and March can be dreary, and you may be longing to get outside. But there are things you can do at home to make indoor play more appealing.  Sort. In your play space, separate your child’s toys into piles: Keep, Toy Rotation, and Give Away. The Keep pile means that you’ll keep those toys out and available for your child to play with. Toy Rotation will be for toys that your child has stopped playing with. You will put these away for a while and get them out later. Your child may forget about the toy, and when you get it out again, it will be new and fresh. The Give Away pile is leaving your house, going either to a charity or a friend. These toys are ones that aren’t conducive to productive play, clutter up your house, or your child has outgrown.  Organize. If your play space is organized, it will be more visually appealing and easier for your child to make good choices. If the play space is disorganized, they may choose to play with the same thing over and over, because it’s too difficult to sift through the rest of the toys. Bins and zipper bags may be better than a large toy box. Group toys that go together to reduce the burden on your child to find what they need. For example, keep the cars with the garage. Keep the animals with the barn. Keep the crayons with the coloring books.  Create a Routine. Make it your nightly ritual to clean up the toys. For younger children or kids who have difficulties sorting and organizing, have your child help put all the toys in a laundry basket. After they go to bed, you can quickly put the toys where they go. For older kids or kids who enjoy sorting and organizing, your child can help with the task of putting the toys away. Some kids have difficulty transitioning. If that is the case for your child, you can make the task easier by making this a consistent part of the nightly routine, adding a clean-up song, and having something fun to do immediately after (e.g., bath or reading books).  Facilitate. When your child has free time for independent play, set out a few toys that you know he or she likes to play with. If your child received some toys during the holidays that he or she doesn’t play with, sit down and play with those, too. Follow your child’s lead and copy what they are doing. Then try to do something different with the toy.

You may find that your child learns a new way of playing by watching you. Add language by talking about what you are doing. Think of yourself as your child’s play partner, and have fun!

Free Upcoming STAR Trainings for February and March Self-Care for Caregivers and Professional Helpers - Wednesday, February 12, 11:30 a.m. to 12:30 p.m., presented

by Emily Driscoll-Roe, LCSW-C Getting an Autism Spectrum Disorder Diagnosis: Where Do I Go from Here? - Monday, March 17, 9:30 a.m. to 11:00 a.m., presented by Cathy Groschan, LCSW-C What is Transition Planning for a Teen with an ASD Diagnosis? - Monday, March 17, 1:00 p.m. to 2:30 p.m., presented by Cathy Groschan, LCSW-C For more information or to register, visit kennedykriegercard.eventbrite.com

In honor of ROAR and Autism Awareness Month, we will be presenting weekly STAR trainings in April. Topics include ADHD and autism, sleep issues, and others. Trainings will be held on Wednesdays, from 11:30 a.m. to 12:30 p.m. in the large conference room at CARD. Stay tuned or check the website for more details!

Did you know that all of our previous STAR trainings can be viewed online? To access the archive, visit the Outreach & Training section

of the CARD website and click on “STAR Parent Trainings.”

14th Annual Autism Conference Presented by the Center for Autism and Related Disorders at Kennedy Krieger Institute

SAVE THE DATE

Autism: Transforming the Future October 16 & 17, 2014 North Baltimore Plaza Hotel (Formerly the Crown Plaza Hotel) 2004 Greenspring Drive, Timonium, MD 21093

This annual conference, now in its 14th year, is the premier educational autism event in the area for educators, clinicians, families, researchers, and healthcare professionals hoping to increase their understanding of autism spectrum disorders (ASD). The two-day conference addresses a wide range of topics, including: • Applying universal design to increase access to the general education curriculum • Promoting self-determination in students with ASD • Challenges of, and strategies for, developing literacy • Translating evaluation results into relevant school recommendations • Understanding sensory challenges and practical solutions • Understanding life on the autism spectrum • Strategies and tools for managing your child’s complicated systems of care • Anxiety in youth and transition-age adults with ASD • Communication strategies for improving behavior • Possibilities and challenges faced in pursuing postsecondary education • Functional behavioral assessments for individuals in community employment settings • Utilizing apps and devices for behavioral adaptation and facilitating communication New this year! Meet the Speakers networking reception.

For more information about the workshops, schedule, presenters, and registration information, visit autismconference.kennedykrieger.org.

We are all born with great potential.

Shouldn’t we all have the chance to achieve it?