Owen Paris and his dad Mike NewsletterNADS for the National Association for Down SyndromeNews March, 2016 The PAC Self-Advocacy Workshop Sarah Weinstein wo weeks ago I attended the accomplishments, our jobs, hobbies up were: opportunities to share our NADS PAC (Partnership Advocacy and enthusiasm for learning new hardships and struggles with healthy Council)T Self-Advocacy Workshop things. (I think our parents had fun choices and peer pressure, telling at Elmhurst College with 21 other talking with each other too. They were other people how to help us when our aspiring self-advocates. We practiced invited either to stay and listen to the feelings are hurt or we see someone skills and techniques to help us be workshop or to hang out and network mistreated or bullied and finding confident in telling other people about programs and services around ways to let others know we want more about our preferences, our skills, the Chicago suburban area.) opportunities to help out and work by interests and our goals and dreams. It Janice Weinstein, Executive Director sharing our talents and gifts. There was so much fun to get to know other of Total Link2 Community, helped us were so many talented people in the adults with Down syndrome. Everyone get comfortable with one another room and we took the time to hear was excited to share their proud using improv and drama games. You each person’s voice. We also had a lot could feel the energy level go up to say about what we’re good at and when Janice asked us to stand in a how we want other people to view us circle facing one another. After a few — as capable and confident adults. minutes, we were all tuned in and At the end of the workshop, we focused as we took turns speaking brainstormed ideas for things we’d and trying out new dialogs. Every one like to do together. We put together participated and felt supported by our a “bucket list” of activities we want group. We practiced asking someone to accomplish including: having a fun to help us with a goal or a specific party, helping out by volunteering, request for help. We talked about the going out in the community important role our families, friends and working and having social and role models play in helping us opportunities like Special Olympics, to identify and reach our goals. We theatre and pubic speaking, staying realize we need help with certain connected to close friends both old things at different times even though and new. we see ourselves as adults. Some of the common themes that came Continued on page 11 NADS News — March, 2016 1 Contents World Down Syndrome Day 3 arch 21 is World Down Syndrome Day. It is also Down Syndrome Enters an opportunity to raise awareness about Down A New Era syndromeM within your community. Perhaps you will Book Review choose to bring Down Syndrome International’s “Lots 4 of Socks” campaign to your local school or business. On the Topic Of: Summer Or you could distribute some of NADS’ colorful Camps bookmarks, featuring paintings by an artist with Down syndrome. Or you might be inspired to come 5 Camp Chi up with your own campaign. You can find lots of ideas on the World Down Syndrome Day website (https://worlddownsyndromeday.org/), as well as information about the 6 WDSD conference, held at the United Nations in New York City. The theme for this year’s Upcoming Events conference is: “My Friends, My Community”— The benefits of inclusive environments for Summer Camps in the Midwest today’s children and tomorrow’s adults. 7 Multiplying Your Blessings Illinois Includes Conference Someone Special Books re you a parent who would like to see your child have a more inclusive educational 8 experience? Are you a teacher, administrator, social worker or therapist who would NADS Public Speaker Training likeA to learn strategies for successful inclusion? The Illinois Includes conference brings Transition Planning Tips people together to “share ideas for growing inclusive opportunities in Illinois schools and Corporate Sponsorships for communities.” This year’s conference will be held May 5-6 in Oakbrook. Topics covered NADS Conference will include the inclusive IEP, early childhood for all, cooperative learning, supporting friendships, and building classroom community. For more information or to register, go to 9 David Jonaitis www.illinoisincludes.org. 10 Family Album New Report Shows Increase in Inclusion he U.S. Department of Education’s 37th Annual Report to Congress on the 11 Fundraising Implementation of the Individuals with Disabilities Education Act, released late last year,T shows that since 2013, more than 60% of school-aged children served under IDEA spent 80% or more of their school day in a regular education classroom. Those figures represent an increase from earlier reports. To see the full report, go to www2.ed.gov/ about/reports/annual/osep/2015/parts-b-c/37th-arc-for-idea.pdf. Wyatt Deborah Nelson “Opportunity is missed by most NADS News is a publication of because it is dressed in overalls the National Association for Down and looks like work.” Syndrome (NADS). — Thomas Edison For more information call or write: y son Wyatt’s new teacher sent me an National Association email this morning, and this quote is for Down Syndrome partM of his signature line. Stopping to think 1460 Renaissance Drive, Suite 405, about why a special education teacher would Park Ridge, IL 60068 use a line from a great inventor for his calling card, a light bulb went off over my head. Mr. 630 325-9112 Cosby gets what we parents of kids with Down or visit www.nads.org syndrome know! While it takes a lot of extra work for our students to learn and it’s often Exec. Director Diane Urhausen more messy than glamorous, the opportunity President Steve Connors and the reward are that much greater. So go Editor Ann Garcia ahead and wear your overalls with a tiara or top hat -- Wyatt style! 2 NADS News — March, 2016 Down Syndrome BOOK REVIEW COUNT IT ALL JOY: LIFE’S LESSONS FROM A Enters A New Era CHILD WITH SPECIAL NEEDS Dr. Peter Smith, Associate Professor of Pediatrics, University of Chicago Kathleen Murray, PhD. Westbow Press, 2015; $11.95 Current Processes hormone, targeting infants Are Not Working and primarily measuring “Joy” is the operative word in this new memoir from cognitive performance local mom and speech therapist, Kathleen Murray. Individuals with Down during and after therapy. She had to forge her own path towards joy, starting, syndrome are living longer Their preliminary work has as so many new parents do, from a place of grieving and healthier lives than ever. shown significant promise and struggle, but she There is consensus that and preliminary results comes to delight in her complete information needs might be released later son, Christian, and his to be offered to all parents this year. Because of their place in their family. She of children with Down early successes, there are writes candidly about syndrome (both pre- and ongoing efforts to mount the difficulties they postnatal) regarding the a similar study here in the faced together, from her current experiences, health United States. The NIH son’s heart surgery in his outcomes, lifespans, and has recognized this new first year to the Autism quality of life for individuals era and has launched an diagnosis he received a with Down syndrome. Down international registry (see few years later, but she syndrome represents a https://dsconnect.nih.gov). also realizes the many dramatic “success story” However, this “breaking valuable lessons she and the lives of individuals news” has not been widely with Down syndrome are learned through raising disseminated. Many worry her son. The book is improving in every way that recruitment to these measurable. Unfortunately, a summary of those studies could be diminished lessons. The chapters, this good news is too often due to the lack of awareness not being shared with new with headings such by primary care providers as “Doors,” “Hugs,” and expectant families. and the general public, Doctors are not prepared and “Bedtime,” use which would slow the beautifully rendered for this task and parents progress of the studies. report frustration with the vignettes of their life to reveal insights gleaned from process. A Growing Number caring for her son. Each lesson is also paired with a of States Have quote from scripture, and spiritual lessons are part of On the Cusp of her journey, but her main motive in writing the book is Addressed the Issue: Potentially “Game to show other parents raising a child with special needs Including Illinois Changing” Therapies how they, too, can find their own joy. For parents who Because of the lack of In addition to the dramatic are not yet able to see that possibility, she provides the general knowledge of both changes that have already image of the snowdrop—the cover art she selected the dramatic improvements occurred, Down syndrome for her book. The snowdrop emerging from the frozen in the lives of individuals as a clinical and research ground reminds us: “New growth is possible in every with Down syndrome and arena is on the cusp of heart.” the emerging clinical trials developing even newer in Down syndrome, a therapies that have the Signed, personalized copies are available from Dr. Murray by coalition led (of course) by potential to improve email ([email protected]) or online at WestBow family support organizations cognitive outcomes. Press, Amazon, or Barnes & Noble has emerged. They have Multiple research teams initiated a new “information have protocols already rights” movement that coalition helped to pass publicacts/fulltext.