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«PWCF 2013 General Education Meeting: October-December, 2013 Volume 24, Number 4 Breaking Through Barriers November started off on an exciting foot ...»

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PWCF 2013 General Education Meeting:

October-December, 2013

Volume 24, Number 4

Breaking Through Barriers

November started off on an exciting foot with PWCF’s General Education Meeting.

Each year we focus on the hot-button topics that affect parents and professionals. This

year’s conference attendees were treated to excellent speakers starting with the keynote

speaker, Nick Daley, who’s made a successful career as an actor and who happens to

PWCF Annual have PWS.

Conference………1, 10, 17 Mr. Daley has appeared in a number of television shows including Legit, Saving Grace, 7th Heaven, as well as movies including Greener Mountains, Schooled, and Life at the Resort.

2014 Support Group Performing Arts Studio West, located in Inglewood, California, represents Nick and other actors Calendar…………………2 with special needs. Nick’s agent, John Paizis, created a series of clips highlighting Nick’s work, re- vealing how Nick infuses his honesty, intensity, and fun humor into the shows in which he’s acting.

2013 Presidential Nick shared how happy he is with his life is and how fulfilled he feels. Read his presentation in its Awards …………………..3 entirety on page 17. Nick Daley truly is a shining example of someone with PWS breaking through barriers!

Eyesight & Toys ………...4 The next speaker was Lisa Thornton, Esq., an attorney who specializes in Wills and Trusts and is the parent of a beautiful young lady, Kate, who has Know Your Sources …….6 PWS. Ms. Thornton provided a great deal of information about the im- portance of creating a Special Needs Trust and Will, and she also highlight- Be a 2013 Shining Star …6 ed the importance of obtaining conservatorship, Power of Attorney, and creating Advanced Health Care Directives, and a Letter of Intent. Links to ASICS LA Marathon …...7 many of these templates may be obtained from the PWCF office.

In The Trenches The next topic was endocrine conditions typical in persons with PWS, Tales From the Toilet

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October-December 2013 Page 2 Parent to Parent I love attending our local PWS Support Group and am always surprised that more families don’t attend. What keeps parents and grandparents, and aunts and uncles from attending support group meetings?

I try to invite Zavier's grandparents to join or sit in on the support groups anytime, however they usually pass up the invitation. I wouldn't say they are in denial about his condition, because we as parents make it very aware; I think they try to separate themselves from the hardcore reality of it. Being aware of it and actually being involved and seeing it are two different things. I honestly believe it is easier for them to just enjoy the quality time with their grandson without all the “complicated” reality of his condition.

As analogy, I imagine it as seeing and enjoying good movie, but closing your eyes or leaving during the sad parts. You know sad parts are in the movie, but you choose not to look at them because you don't want it to interfere with your mood or how you view the movie. Kim Cain, mother of Zavier Morris, age 3 years Next “Parent to Parent” question is: “How do you manage the attention jealousy that occurs when your other children see you focus your time and energy on your child with PWS?” PWCF Congratulates the 2013 President’s Award Recipients At the General Education Meeting on November 3 Julie Casey, PWCF’s President,

presented the 2013 President’s Awards to the following dedicated and deserving individuals:

Melanie Cross, RN, PhN, MSN In recognition and appreciation of her passion and dedication to educating future nurses about Prader-Willi syndrome.

Roger Goatcher In recognition and appreciation of his work to improve the quality of academic life of students with Prader-Willi syndrome through his school advocacy support and creation of an IEP planning handbook.

June, Ernie & Heather Leitheim In recognition and appreciation of their Birthday Ball Fundraiser which raised over for $2,500 for Prader-Willi California Foundation.

Jacki & Jeff Lindstrom In recognition and appreciation for sharing their family’s story in the documentary Half Full to raise awareness of Prader-Willi syndrome Patti McRae In recognition and appreciation of her work to raise awareness of Prader-Willi syndrome through the organization of the Northern CA Walking for Prader-Willi Syndrome event.

Jessica Patay In recognition and appreciation of her CAbi fundraiser which generated $675 for PWCF’s support groups.

Julie Tauscher In recognition and appreciation of her service on the PWCF Board of Directors and for organizing a Tea fundraiser in memory of Yvette Tarica.

Paula Watney In recognition and appreciation of her service on the PWCF Board of Directors, her service as Residential Coordinator, and her work to organize the Central California Walking for Prader-Willi Syndrome event.

Selective Service Registration Q: My 18 year old son has PWS. Does he need to register for Selective Service?

A: Yes, he does. Deferment (due to his disability) would be done if he was hypothetically called for duty.

From Selective Service System’s website:

“Disabled men who live at home must register with Selective Service if they can reasonably leave their homes and move about independently. A friend or relative may help a disabled man fill out the registration form if he can't do it himself.

Men with disabilities that would disqualify them from military service still must register with Selective Service. Selective Service does not presently have authority to classify men, so even men with obvious handicaps must register now, and if needed, classifications would be determined later.” For more information visit the Selective Service System website http://www.sss.gov/

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Brothers-All-Natural has a selection of dried fruit products, including their “Fruit Clusters” product. Advertized as 100% real fruit, these freeze-dried fruit clusters come in a variety of flavors such as Fuji Apple, Fuji Apple & Blueberry, Strawberry Banana, and more. The fruit flavor is sweet and intense, and each cluster is about the size of a kernel of popped popcorn. Each single-serving package is 40 calories.

For more information or to learn where you can purchase these delicious products visit www.brothersallnatural.com/ or call 877-84-CRISP (27477) Gadget Tip Surround Toothbrush is a very cool toothbrush that surrounds the teeth to clean front, back and biting surfaces all at the same time. The soft, end-rounded bristles and smooth, heart-shaped, compact head made brushing safe and comfortable. The brush head and neck are designed to bend rather than break to make brushing safer, even for those who have a tendency to bite down on the toothbrush. Specialized Care Co., makers of the Surround Toothbrush, report that, “Dental clinics serving people with disabilities have indicated that using the Surround Toothbrush with their population produced a noticeable improvement in gum health.” Brushes come in Toddler and Adult sizes.

For more detailed information or to order visit www.specializedcare.com or call 800-722-7375

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New System for Disneyland Disability Access Area Board 10 recently announced that in October Disneyland replaced its Guest Assistance Card with a Disability Access Service (DAS) Card. The DAS Card allows people to “virtually” wait in line for attractions, meaning that you will still have to wait, but you don’t have to do so in the actual line. The person with the disability must have their picture taken for the card, and you must go to kiosks located in the park to have Disney employees place you on a waiting list for the ride of your choice. The wait time is based on the actual wait time for the ride, minus ten minutes. While you wait, you can go on other rides using the regular line or do other things in the park, but you can only have one ride on the DAS card at a time.

The Association of Regional Center Agencies (ARCA) is in ongoing discussions with Disney management concerning this change and has developed a brief survey to gather data from anyone who might be interested. To take the ARCA survey go to https://www.surveymonkey.com/s/DAS_Card_Survey Page 4 October-December 2013 Executive Director’s Column Lisa Graziano, M.A.

As is typical when we come to the end of a year, it’s a time for a bit of reflection.

For some of us this past year will have been on the whole positive, encouraging, hopeful. For others this has been a year of struggle, sadness, or loss.

Most of us fall somewhere in the middle in that 2013 has been a mixture of both good and bad; joy and heartache;

despair and renewed hope.

As for me, on the more positive side of things my son’s transition to high school – which, quite frankly, gave me nightmares for the 74 days, 6 hours and 39 minutes between the last day of middle school and the first day of 9 th grade – proceeded rather smoothly. Of course there were some hiccups along the way, but that’s life. He continues to do well in part because of all of the planning and training we provided to his teachers and administrators, and in part because of his “health aide.” Sent to him from the heavens above, I am grateful to Cameron’s guardian health aide angel who not only keeps him food safe while he’s at school, she paves the way for him to connect with peers, make friendships, and be a part of the social scene on campus. It is largely because of her that his high school experience continues to be positive. And as every parent knows, what is positive for my child makes life more positive for me!

I have also experienced loss and deep sadness this year. All losses of life are heartbreaking but when we personally know the individual it tends to feel that much more tragic. And this year in March we lost a woman with PWS whom I’ve known for a very long time. It was 1999 when I attended my first PWCF/PWSA conference. As I walked the conference halls in a literal daze, my fragile son cradled in my arms, a young woman with all the confidence and enthusiasm in the world asked me if she could hold my baby. Feeling somehow strangely secure with this woman, I handed her my son and watched her love him. It is a memory etched into my soul forever.

Three years later I came to PWCF to work with her mother, Renee Tarica, who to this day continues with the greatest dedication to serve PWCF as its Treasurer. Yvette Tarica died on March 10. She will be missed every single day by me and by all who had the privilege to know her.

The swiftness of this year’s passage, whether peppered with optimism or heartache, no doubt reflects the busyness in our lives. This is absolutely true of PWCF’s officers, board of directors, staff and volunteers who, for over three decades, have been working diligently to provide support and services to the families and professionals who depend on us.

PWCF believes that individuals with PWS should have the opportunity to pursue their hopes and dreams to the full extent of their talents and capabilities and that the success of people with PWS depends greatly upon the knowledge and support of the community around them. Our mission is to help people with PWS and their families be successful and to accomplish this we provide a state network of information, advocacy and support services. The work of PWCF can be summarized into four categories: Education, Support & Advocacy, Awareness, and Research.

Take a look at just some of the things PWCF has accomplished in 2013:

Education PWCF places great emphasis on educating our families and the professionals who serve them. This year we:

 Produced a statewide educational conference  Produced 2 IEP SOS Training Sessions  Produced 2 Behavior Management Training Sessions  Collaborated with PWS medical specialists to produce an important article on gastroparesis and slow emptying bowel.

 Provided residential trainings to group home staff, and inservice trainings to teachers  Produced 4 information-packed newsletters  Distributed New Member Information Packets, New Member Handbooks, brochures, articles, abstracts, and journal articles on myriad PWS issues  Mailed all over the world DVDs we’ve produced or helped produce: Food, Behavior & Beyond; Understanding the Student with Prader-Willi Syndrome; the Brain & Behavior in PWS; Walking for Prader-Willi Syndrome; and the PWS Residential Staff Training DVD.

So far in 2013 we’ve expended $45,183 on Educational Programs.

Support & Advocacy This year was another extremely busy year providing advocacy and support services to families and

professionals. We:

 Helped families secure Regional Center eligibility, appropriate educational support, growth hormone, SSI benefits, In Home Support Services, residential placement  Advocated for appropriate out-of-state residential placement  Maintained the only 24-hour PWS-related medical crisis line in the country  Maintained our 800 line so that California families can reach us at no cost to them  Continued to fund PWS Clinics in San Diego, Orange County, and Central California.

 Provided in-person Support Groups and provided online support  Held our third PWS Camp session where we served 65 campers  Mailed all members a life-saving Medical Alert booklet Continued on page 9...

Page 5 October-December 2013 Know Your Sources by Janalee Heinemann, MSW, PWSA (USA) Jennifer Miller, MD, University of Florida, Theresa Strong, PhD, FPWR The Internet has proven a valuable place to learn about PWS, share experiences, and find out what other parents are doing to manage their child’s health. However, applying information gathered over the Internet to your child’s medical care can end tragically if the

proper precautions aren’t taken. Here are some suggestions:

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