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               Newsletter             of    the      N at i o N a l     DowN           syNDrome               CoNgress
 2011




              D O W N S Y N D ROM E
 vol. 34




RemembeRing bill
By Mary Hogan, Eliot, ME
                                                                                             In this issue
He was the youngest of the nine of us. Each would probably remember him                   POTPOURRI  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 21
a little differently. Most of us smile a soft warm smile when we think of him.
Since his death, many of us often greet one another with “his words,” the                 WhaT DO YOU WanT
special way he said “Hello,” and quickly let you know he missed you and that              TO ShaRe?  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 21
he couldn’t wait to see you again — soon, very soon. Our stories and memories
are different and in some ways they are the same. Maybe that is how it is when            aCCePTanCe  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 22

you look back on something special in your life.
                                                                                          neW membeR
My brother, Bill, died on February 25, 2010, in a hospital in Middletown, NY.             jOInS nDSC bOaRD  .  .  .  .  .  .  .  .  . 23
He was 49 years old. He had Down syndrome. That part of Bill’s life seemed to
be just incidental in many ways. He also had Alzheimer disease. That part of              “ WhY aRe We even
Bill’s life was his greatest challenge. Lots of people came that last day — to sing         DOIng ThIS?”  .  .  .  .  .  .  .  .  .  .  .  .  . 24
to him, tell him stories, rub his head and say thanks. And then he died. That
was not supposed to be the way it happened, but that was the way it did.                  jUST DanCe!  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 26
Somehow we knew that he would die soon. Sometimes we weren’t ready.
He was. Mother Nature blanketed the earth with 32 inches of snow that day.                an UnfORgeTTable

It brought our world to a standstill.                                                     exPeRIenCe WITh
                                                                                          The nDSC  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 27
                                                                continued on page 18

                                                                                          Treasures from The hearT
                                                                                          SIlenT aUCTIOn  .  .  .  .  .  .  .  .  .  .  . 28


                                                                                          ReSOURCeS:
                                                                                          bOOk RevIeWS  .  .  .  .  .  .  .  .  .  .  .  .  . 30


                                                                                          CReaTIng YOUR legaCY
                                                                                          aT The nDSC  .  .  .  .  .  .  .  .  .  .  .  .  .  .  . 31




                                     Bill aND his sisters iN 2008
DowN syNDrome News


ISSn0161-0716
                                                             remembering Bill
Publisher: National Down Syndrome Congress                   continued from page 17
executive Director: David Tolleson

editor: Julie S. Anderson

general Correspondence and memberships:
                                                             In early March, after Bill’s death,        attended kindergarten for two years,
National Down Syndrome Congress                              brain donation and cremation, he           long before mainstreaming was even
1370 Center Drive, Suite 102
Atlanta, Georgia 30338                                       went home to the small town where          considered. He was described as a
phone: 800.232.ndsc fax: 770.604.9898                        we grew up. It was a community             playful student who brought lessons
email: info@ndsccenter.org                                   that embraced him from the start. It       about acceptance. He headed off to
website: ndsccenter.org
                                                             was a community that was there for         a Board of Cooperative Educational
Statement of Policy and Disclaimer:
This newsletter reports items of interest relating           him at the end. And so, in the midst       Services (BOCES) program for the
to Down syndrome and will provide a forum for
others. The NDSC does not promote or
                                                             of our sorrow there was great joy,         remainder of his school career. He
recommend any therapy, treatment, etc. NDSC                  the joy that my brother gave to            loved school, but hated to get up
will not espouse any particular political or religious
view. Individuals or organizations referred to are           many during his life and the joy that      each day for that more than one
not necessarily endorsed by this publication or its          he received from those around him.         hour drive in the little yellow bus to
editor. We wish to bring together those interested
in Down syndrome and attempt to create an                    Many people, including his first           his school program. He acquired
optimistic outlook and attitude.
                                                             teacher, came to celebrate his life,       basic reading skills, learned to be a
The editor reserves the right to make corrections
as are appropriate and in accord with established            tell a story, talk of his smile, relive    good swimmer, loved music, dancing
editorial practice in material submitted for                                                            and cheating at backgammon. With
                                                             a moment in time and let us know
publication. Submitting an item to the editor to
use in DSN gives permission to do so.                        how Bill touched their lives. He was       each passing year or two, one more
Reprints from DsN:                                           a good man who had a good life.            of us would head out the door to
We invite editors of other newsletters to reprint
items from Down Syndrome News, provided proper
                                                                                                        college and begin our own lives,
                                                             Bill was born on April 30, 1960. He
credit is given to the source. Please delineate clearly                                                 leaving one less person to assume
the material you are reprinting and indicate that it         came home after my parents made a
comes from Down Syndrome News, newsletter of                                                            responsibilities around the house
the National Down Syndrome Congress,                         conscious choice to bring him home.
                                                                                                        and help with Bill. Eventually,
1370 Center Drive, Suite 102,                                He learned to do things he wasn’t
Atlanta, Georgia 30338, ndsccenter.org                                                                  over the course of many years, it
                                                             supposed to be able to learn to do.
Please note that for material which the DSN reprinted with                                              was Bill and Mom. They enjoyed
permission you must contact the original source.             He grew and changed and somehow
                                                                                                        life together, for the most part, as
board of Directors:                                          thrived in our big family that was
F. Brooks Robinson, Jr. – President
                                                                                                        they shared this big house in this
                                                             so often chaotic and disorganized.
Jim Faber – Vice President                                                                              little town.
Viviana Fernandez – Vice President                           There were expectations that Bill
Marilyn Tolbert – Vice President
Carole Janine Guess – Vice President                         would fit in, that he would behave         Bill learned to bowl, with our
Shawn W. Hardister – Treasurer                               and that we would take care of             mother as his demanding coach.
Richard Robison – Past President
                                                             him. All of those things happened.         She expected him to do and be his
Andrew Bean • Regina Britt
George T. Capone, M.D. • Chandra M. Evans                    Little kids sometimes took on big          best. On the other hand, she was
Tonia Ferguson, J.D. • Kathleen Forney
Jessica Green • Heather Hancock                              responsibilities. It did not seem to       often ferociously protective. Bill
Julie Harmon • Martine Hobson                                matter then, as Bill made us laugh         maintained a paper route in our
Nadine C. Maes • Troy McCarthy
Lori McKee • Carol Bishop Mills, Ph.D.                       and seemed to teach us lessons of          neighborhood but often preferred
Patricia Moody • Claire Odermann                                                                        an abbreviated work week. He
                                                             love, tolerance and patience. In
                                                             1968, our father died. Bill seemed         frequently insisted that he needed a
    mission                                                  to become the glue that held much          day off to “sleep in” until 10:30, so
    The mission of the NDSC is to provide
    information, advocacy and support                        of this big family together.               Mom and her long-time companion
    concerning all aspects of life for individuals                                                      traveled the neighborhood in her
    with Down syndrome.                                      At our mom’s insistence, Bill entered
                                                                                                        old Mercedes, stuffing those
    vision                                                   the local elementary school and
    The vision of the NDSC is a world with
    equal rights and opportunities for people
    with Down syndrome.                                      18 •   DowN syNDrome News       •   volume 34, #2
mailboxes on many a Sunday
morning. Nonetheless, Bill loved          As he grew older
payday! Mom cooked dinner; Bill
told her that the milk was good!
                                          and enjoyed more
It was their story.                       frequent haircuts,
Bill went to work at the local florist    Bill became
where he enjoyed a very special
relationship with his boss and            convinced that
co-workers. In March, his boss            he looked like
talked of the special people who
come into one’s life. He told of the      his hero,
goodness in Bill’s heart, his quick
wit and flirtatious nature. He told of
                                          Harrison Ford.
Bill’s trips through the village after
working, visiting with shopkeepers
who became his good friends and           in a sheltered shop, his paycheck        experienced severe hypoglycemic
guardians. His boss told of the day       and a sense of accomplishment. He        episodes. His diet needed to be
that he and Bill would meet in            loved “his staff ” at the group home,    carefully observed to ensure that he
heaven and drive around in an old         many of whom worked with Bill            maintained good health. Each new
red truck, whistle at the girls and fix   for several years. They became his       medical wrinkle required advocacy
the flowers at the Pearly Gates.          second family. As he grew older and      for Bill, to make sure that
                                          enjoyed more frequent haircuts, he       recommendations were followed,
Despite the richness of life, Bill        became convinced that he looked          that he would be safe and well cared
faced many medical challenges.            like his hero, Harrison Ford. On         for, that complications would be
He had chronic ear infections and         more than one occasion when flying       avoided. Unbeknownst to us, in the
gastric issues. He had a very high        independently to see family in           midst of all the known factors that
tolerance for pain, so often it was       Boston, he introduced himself to         he faced, he had developed
hard to know that he was                  the flight attendants as the well-       osteoporosis.
experiencing difficulties. He faced       known actor. With delight, they
his first surgeries as a young man                                                 In 1997, our mother died
                                          confirmed his resemblance!
for hernia repairs, ear infections                                                 unexpectedly. Because Bill had
and for gastric complications. Many       Bill eventually experienced severe       already made the move to a group
more unanticipated medical issues         bilateral hearing losses that required   home, the trauma of that loss was
lay ahead for Bill.                       hearing aids. Over time he also          more tolerable for him. He had
                                          developed a cholesteatoma, a             settled into his life in his group
When Bill was in his early thirties,      destructive inner ear growth that        home and had a built in support
he moved on to a group home in a          required more surgery and                system. He maintained close contact
small city near our hometown. This        eventually eliminated his ability to     with his extended family and visited
transition was easier for him than it     wear a hearing device in one ear.        regularly, something he loved
was for our mother. Nonetheless, it       He grieved the reduced contact that      greatly. Though many siblings
was an important move for him as          he had with the outside world,           helped with Bill’s visitations, one
he became more independent,               anxiously asking when he would           sibling became his primary
developed friends and had his own         hear “better.” His gastric issues
life. He continued to enjoy working       complicated his life as he                                 continued on page 20

                                                                      volume 34, #2   •   DowN syNDrome News       • 19
remembering Bill                          the team sometimes tired. We were
continued from page 19                    blessed to have reinforcements
                                          waiting in the wings ready to help.
                                          One loving husband and three
advocate, a role assumed until his        family friends emerged to
death. In 1998, while vacationing         periodically help maintain the
with family, Bill fell and fractured      “we” in the team.
his hip. Despite immediate and
on-going medical attention, the           The diagnosis of Alzheimer disease
fracture went undiagnosed for six         in 2006 seemed unreal, a brief
weeks. One cannot help but ask            notation in a medical record made
how this happened as he repeatedly        by a neurologist who did not really
was taken for medical care at our         know Bill. It did not seem to relate
                                                                                             Bill hogaN
insistence; but, it happened. The         to who he was in that moment in
keen observations of a physical           time. Gradually, over the next two
                                          years it became more apparent that      were tenacious warriors in his
therapist prompted a diagnosis and
                                          diagnosis was correct. Bill began to    defense. There was no choice.
eventual surgery requiring a partial
                                          have difficulty remembering the         Though hard to locate, outreach to
hip replacement. Bill experienced
                                          steps of his job and initiating self-   a family who had lost a son with DS
his first stay in rehab. The family
                                          help skills. The losses eventually      to the complications of Alzheimer
rallied and was a presence during
                                          became more pervasive and the           disease proved to be a godsend.
rehab to ensure that his needs did
                                          changes far more noticeable.            They could provide support that
not go unnoticed.
                                          Familiar tasks became impossible        only those who had endured the
During those next few years Bill          to complete as interest in once         experience could offer.
faced surgery for continued ear           favorite activities waned.              In July of 2009, Bill began to
difficulties and a bowel prolapse. He
                                          As Bill faced more debilitating         deteriorate more rapidly and exhibit
developed a serious bone infection
                                          changes due to Alzheimer disease,       more challenging behaviors. Safety
in his lower spine that made it very
                                          the need for advocacy greatly           issues became a concern. Eight
difficult for him to walk. He was
                                          increased. His life at the group        months before the end of his life, he
hospitalized, stabilized and returned
                                          home was threatened as he was the       left his old group home and second
to rehab for treatment of his
                                          first resident to face life-altering    family and moved to a new group
infection and physical therapy. He
                                          changes. We advocated for him to        home that could better meet his
faced all of this with relentless good
                                          “age-in-place” as long as possible.     physical needs. It was traumatic for
humor and few complaints as he
                                          We worked to make sure that he, his     Bill. It was traumatic for all of us.
worked hard to get back “in the
                                          housemates and the staff were all       Though it was a difficult start in his
game.” When he was back on his
                                          safe; we worked to help his mates       new setting, he was blessed with a
feet, he was thankful for his miracle.
                                          understand the changes, though we       caring, attentive staff who worked
Advocacy again was the operative
                                          could hardly understand them            hard to help him with all of his
word, with the one family member
                                          ourselves. We worked to make sure       daily challenges. They learned his
willingly assuming the bulk of the
                                          that he was not marginalized in the     story; they came to recognize that
responsibility. Over time it became
                                          medical community as he presented       we would support both them and
harder for the family team to rally.
                                          with problems that were not due to      him. They came to understand his
As siblings aged and family
                                          Alzheimer disease, but were often       losses and treated him in a very
demands and Bill’s needs increased,
                                          readily attributed to the disease. We   gentle, loving manner. He became a

20 •   DowN syNDrome News         •   volume 34, #2
part of their family and they
became part of ours. We faced the
end of his life together. It came
quickly on that snowy winter day.
                                             Potpourri
                                             Potpourri
Over time, April 30th seemed to
                                             Parents wanted for research study on language ability
become a national holiday for many
in our family. Bill typically began            Dr. Lizbeth Finestack, a professor in Speech-Language-Hearing
                                               Sciences at the University of Minnesota, Twin Cities, is working with
planning for his birthday shortly
                                               Valerie Schmidt, a Masters’ student in Speech-Language Pathology,
after we had celebrated Christmas.
                                               to conduct an online survey of parents of children with Down
We listened for months to his litany
                                               syndrome (DS). The survey results will help researchers better
of ideas and plans on how to                   understand parental views of their child’s language abilities and
celebrate the day. Sensing that                speech and language needs. Through this survey, further research
changes were in the wind, we                   can be promoted in the language areas that concern parents most.
celebrated his life in grand style in          Findings will also help educate other speech-language pathologists
2007, with the birthday of all                 as to how to better serve children with DS and their families.
birthdays. He was born knowing                 Parents of children with DS are invited to participate. This survey
how to celebrate. He had cause to              takes about 30 minutes to complete, and is completely anonymous.
celebrate. Life was generally good to          The information collected from this survey will be used for this
Bill, but mostly he was good at life!          research only.
In 2010, we buried Bill on what                To complete the survey, go to the study website at
would have been his 50th birthday. It          https://survey.cla.umn.edu/66546. To find out more about
was a beautiful spring day and a               the study, please email or call Liza Finestack, Ph.D., CCC-SLP:
simple celebration with an Irish               finestack@umn.edu; 612-624-6090.
prayer, a James Taylor tune and a
homily about a man and his
community.

Mark Twain was once quoted as
                                              What Do You Want to Share?
saying, “Let us live so that when we          D.S. Headline News is written by and for self-advocates
come to die, even the undertaker              (people with Down syndrome). You have important
will be sorry.” Bill’s was a life well-       things to share, so write an article that will be printed in
lived. We bid him adieu and can
                                              D.S. Headline News. People all over the country will read
almost hear him signing off with his
                                              it! Send your article by May 10 to:
favorite, “Too-da-doo.” Toodle loo
to you, too, Bill. See you on the                 D.S. Headline News
other side.                                       National Down Syndrome Congress
Editor’s note: This article first appeared        1370 Center Dr., #102
in the December 2010 issue of the                 Atlanta, GA 30338
American Association on Intellectual and          or Julie@ndsccenter.org
Developmental Disabilities (AAIDD)
Gerontology Division Newsletter with          Don’t forget to send your name, age, address, phone
permission given to reprint in DSN.           number and a photo of yourself to go with your article!


                                                                    volume 34, #2   •   DowN syNDrome News       • 21
Accetance
By Emily Simino, Age 15, Brentwood, CA

Many girls dream of being a cheerleader and inspiring
others by promoting school spirit. Wearing the illustrious
uniform clearly identifies one as belonging to something
bigger than oneself. It’s the ultimate desire so many
teenage girls strive for — “acceptance.” This character-
building experience can take on a different role.
Ironically, cheerleaders may be thought of as self-
absorbed, catty girls who measure value on looks and
popularity. Constantly judging others harshly, they are
reminded of their own mortality by researching each
other’s “Facebook status.” In reality, they all are
searching for their own acceptance.

High school is difficult. Students are judgmental,
teachers are overwhelmed, classes are overcrowded and
campuses are dangerous. Acceptance is something that
so many of us strive for and struggle with throughout
high school and beyond. One does not need to climb
Mt. Diablo or run a 10K to recognize the satisfaction of
achieving a goal. Recently, my friend Emily has taught
me a great deal about acceptance.

Emily McDaniel and I have been friends since fifth
grade, but never had a class together. We hang out with                        emily aND emily
the same group of friends, but we’re not best friends.
We love to swim, shop, bowl and dance together. We
                                                             each of us. Little did I know at the time, Emily’s
love cupcakes, pajamas and talking on the phone until
                                                             presence on this team would be life-changing for
all hours of the night.
                                                             everyone who took the time to get to know her.
Emily has always wanted to be a cheerleader. As a
                                                             You see, Emily has the ability to soften the hardest of
freshman at Heritage High School, she expected
                                                             hearts and recognize the very best in everyone. She
nothing less. Her concerned parents clearly understood
                                                             measures one’s value by the size of a smile and the
it’s difficult to be accepted in such a competitive arena,
                                                             sound of a laugh. Despite Emily’s own daily challenges
but they wanted to support Emily’s dream.
                                                             with “Up syndrome,” she exemplifies what a true
For me, finding out that we both made the JV Cheer           cheerleader should strive to be. Emily radiates an
team was a dream come true. Life works in mysterious         inspiring awareness of the world and I find myself
ways, and we should never forget that there is a plan for    looking at life through her eyes. She has taught me (and

22 •   DowN syNDrome News         •   volume 34, #2
hopefully our fellow teammates), to suspend judgment       Emily’s typical day is in a classroom of her “peers.” I
and love unconditionally.                                  often wonder why I don’t see her around campus. Is it
                                                           really the best thing for her? Does that mean that I am
Behind every successful person, there is a support team.
                                                           not her peer, even though we are friends? Why don’t I
Emily has many “real life” cheerleaders that support
                                                           see her at lunch? Why does Emily have to stay with her
her every day, including her mom, dad and older sister,
                                                           “peers” while our team hangs out together? Why does
Katie. In Emily’s eyes, being a cheerleader is just part
                                                           Emily miss out on campus activities — even though she
of going to high school — as it was for Katie. Emily
                                                           is part of the cheer team?
doesn’t realize the behind-the-scenes activity that took
place. Heritage High is part of a school district that     I then realized the magnitude of it all. When Emily
doesn’t seem to value this opportunity. Do they            wears her uniform, she is no longer considered special,
underestimate the positive impact? Do the “big shots”      slow or whatever label people give her. She is a
in their cozy offices even know what takes place on        cheerleader! That really is the only label I can think of
campus? To date, the district has never had a student      that truly describes my friend and it is her ticket out of
with special needs be part of a cheer team. Emily’s        the segregated environment where everybody makes
mom, Michelle, is a seasoned parent who was all-too-       decisions for her. It is Emily’s time to shine and show
familiar with what she was up against. Michelle made it    everyone that she is also a student at this school. As a
happen without involving the “big shots.” For that         cheerleader, Emily is accepted and respected as a
reason, Emily — and hopefully other students — will        significant member of our team.
have the opportunity to shine.
                                                           To me, the uniform has become a symbol of acceptance.
Our coach, Shannon, does not make a distinction            Each time I put mine on, I think of Emily. She reminds
between team members. When the coach makes us run          us all of the importance of teamwork, respect and
because we are not listening, we all run — including       school pride; and to always give 100% and take nothing
Emily. When a girl talks back to our coach, Emily is       for granted. Emily’s presence on this team has
quick to call her out — and we all run. When we            influenced all who opened their hearts to her message.
practice our cheers, Emily shakes her booty with the       So, it’s not hard to get fired up on game days knowing
rest of the team. Her spirit outshines any synchronized    that this is the time for Emily to shine. She shows the
routine any day. Understanding the commitment, Emily       whole school that she belongs, is accepted and that we
never misses practice, takes great pride in her uniform    are all in this together. It is a great life lesson, and that is
and looks forward to “game days,” when she proudly         why I need to share Emily’s lesson with everyone.
shows everyone she is a member of the Heritage High
School JV Cheer team.




   New memBer joiNs NDsC BoarD
   Claire odermann has been appointed to fill an open position on the
   NDSC Board of Directors. Claire lives in Monument, CO, where she owns
   a private music studio for piano and voice instruction. She has been an
   educator for over 18 years serving many students with Down syndrome
   (DS) and other special abilities. Claire’s very special connection to a young
   man with DS led her to join the Youth & Adult Conference Team in 2005.
   This is her first term.


                                                                  volume 34, #2      •   DowN syNDrome News          • 23
“Why are We even Doing This?”
 a Commentary on Including students with Disabilities
 in General education Contexts
 By Stan Weser, Florida Inclusion Network, Ft. Myers, FL


 At last summer’s NDSC convention,           classes. After analyzing and              (Quality Counts 2004). The survey
 I was part of a workshop panel on           comparing extensive parent and            also found that the longer these
 Facilitating Success for All in Inclusive   teacher questionnaires, this study        students received so-called special
 General Education Classes. During a         found that, “with proper support          instruction, the steeper their
 discussion about what parents can do        and adequate communication                academic decline, resulting in
 to push inclusion for their children        between parents, teachers, and            inordinately high dropout and low
 when meeting resistance from school         professionals, inclusion is a favorable   graduation rates.
 staff, a slightly exasperated parent in     educational placement for children
                                                                                       “If children with disabilities are to
 the audience asked, “Why are we             with DS.” The study also found that
                                                                                       acquire the skills and behaviors
 even doing this?”                           the learning characteristics of
                                                                                       they will need to function in the
                                             students with disabilities were more
 In my work at the Florida Inclusion                                                   ‘real world,’ they must be instructed
                                             similar to their peers without
 Network, I see benefits every day of                                                  in the various environments which
                                             disabilities than they were different.
 including students with disabilities                                                  are part of that reality, and they
 in general education classrooms. I’m        Moreover, teachers reported positive      must learn to interact with the
 also aware that despite decades of          experiences with students with DS.        many persons (handicapped and
 research documenting the benefits           They described their students as          nonhandicapped) who live, work,
 of inclusion — for those who have           “eager to learn, especially when          and recreate in those environments”
 disabilities and those who don’t —          encouraged, and reported personal         (Meyer, 1987).
 parents still have questions about          satisfaction in terms of their
 whether inclusion is worth the              professional achievements.”               Does iNClusioN affeCt
 effort. If you find yourself asking         (Wolpert, G. 1996).                       the learNiNg of stuDeNts
 whether or not inclusion is worth it,                                                 without DisaBilities?
                                             An analysis by Baker, Wang and
 I’d like to offer the following
                                             Walberg in 1994 concluded that            Research by Hollowood et al.,
 encouragement.
                                             “special-needs students educated          (1995) found that inclusion was not
                                             in regular classes do better              detrimental to students without
 what Does the researCh
                                             academically and socially than            disabilities. In fact, a national study
 say aBout iNClusioN?
                                             comparable students in non-               of inclusive education conducted in
 A number of studies over the years          inclusive settings.”                      1995 by the National Center on
 have reported the various benefits                                                    Educational Restructuring and
                                             Education Week conducted a survey
 of inclusive education. In 1996, the                                                  Inclusion (NCERI) reported
                                             that reported the performance
 National Down Syndrome Society                                                        academic, behavioral and social
                                             scores of students with disabilities
 published a research report on the                                                    benefits for students with and
                                             were typically 30-40% below those
 inclusion of children with Down                                                       without disabilities.
                                             of students without disabilities
 syndrome (DS) in general education


 24 •   DowN syNDrome News           •   volume 34, #2
how will my ChilD                        what Do PareNts say                      z 29% of responding parents
make frieNDs iN                          aBout iNClusioN?                           perceived that their child’s positive
iNClusive settiNgs?                                                                 feelings about herself or himself
                                         Peck, Staub, Galluci, and Schwartz
                                                                                    had increased since participating
“Interactions with others enrich         (2004) found that “inclusion is likely
                                                                                    in an inclusive classroom,
our lives and give us the chance to      to be of substantial benefit to
develop friendships and critical         children without disabilities.”          Asked to indicate the overall impact
personal relationships which we all      Survey results generally indicated       of their child’s participation in
enjoy across our lifespan. We            that parents felt that being in an       relationships with peers with severe
typically regard these interactions,     inclusive classroom was good for         disabilities:
relationships, and friendships as        their child, particularly in terms of    z 87% of these parents of children
central to our personal well being. It   their child’s increased appreciation       without disabilities indicated the
is time for children with disabilities   of the needs of other children and         impact had been positive.
to share these experiences, so that      increased acceptance of differences
                                                                                  z 12% of responding parents
these individuals will no longer be      in appearance and behavior among
                                                                                    evaluated the impact of these
isolated from what is perhaps the        other children. Half of the parents
                                                                                    relationships as “neutral.”
most essential component of what         responding to the survey also
we elusively refer to as ‘quality of     indicated that they believed the         z 1% characterized them as
life’ ” (Meyer, 1987).                   overall emotional climate of the           negative.
                                         classroom had improved when
“Students cannot learn social skills                                              what CaN i Do?
                                         children with severe disabilities
without opportunities to make
                                         were included.                           While I hope I’ve provided
friends, they cannot learn
communication skills without             Survey responses indicated that:         convincing evidence that the
interacting and working with                                                      benefits of inclusion are worth the
                                         z 78% of parents of children
classmates, and they cannot learn                                                 effort, I’m also aware that in
                                           without disabilities indicated
competencies related to behavior                                                  communicating with the school staff
                                           they believed their child’s progress
if they are not allowed to solve                                                  to make inclusion a reality for your
                                           had not been affected by their
problems and work through                                                         child may pose a challenge. If so,
                                           enrollment in a class with a child
difficulties with others in authentic                                             here are some suggestions from
                                           who had a severe disability.
environments” (Kluth, 2005). For                                                  The Florida Inclusion Network’s
students with disabilities, the most     z 15% of parents believed their          publication Communication Tips for
natural environment is the general         child’s progress had increased.        Families of Children with Disabilities:
education classroom and other            z 67% reported that their child’s        z Provide information to school
school or after-school settings where      appreciation of the needs of             staff about your child’s strengths,
peers without disabilities learn           other children had increased.            talents, interests and gifts.
and socialize.                                                                      Creating a Student Profile will
                                         z 65% reported that their child’s
                                           acceptance of “differences among         assist the school team to better
                                           people in terms of behavior and
                                           appearance” had increased.                                continued on page 26

                                                                     volume 34, #2   •   DowN syNDrome News         • 25
“why are we even                              more attentive to the importance              Florida Inclusion Network. Communication
                                                                                            Tips for Families of Children with Disabilities
 Doing this?”                                 of these decisions in your
                                                                                            [On-line] Available: http://www.
                                              child’s future.                               floridainclusionnetwork.com/Research_
continued from page 25
                                                                                            Centers/CRSRL/Florida_Inclusion_
                                            z Gather and share information                  Network/Products/Family_Fact_Folios.aspx
                                              about the Individuals with
  design an effective educational                                                           Hollowood, T. M., Salisbury, C. L.,
                                              Disabilities Education Act (IDEA)             Rainforth, B., and Palombaro, M. M.
  program for your child. This
                                              of 2004 and the No Child Left                 (1995). Use of instructional time in
  reinforces the “Individual” in IEP.                                                       classrooms serving students with and
                                              Behind Act (NCLB). Letting the
                                                                                            without severe disabilities. Exceptional
z Clearly express your family’s               school know that you are an                   Children, 61, 242-253.
  future dreams for your child.               informed parent willing to assist
                                                                                            Kluth, Paula. (2005). Is This Inclusion?
  When the team knows of your                 in bringing them current, relevant            Questioning Removal, Rejection and Exclusion.
  hopes and dreams, it helps them             information helps to clarify the              [On-line] Available: http://paulakluth.com/
  stay focused on your child as                                                             articles/exclusion.html
                                              lens through which they filter data
  they plan for how to best include           about your child.                             Meyer, Luanna H., (1987). Why Integration?
  him or her. It also helps them to                                                         [On-line]. Available: http://www.mnddc.
                                            More tips are available at                      org/parallels2/pdf/80s/83/83-WIN-SUN.
  maintain the presumption of                                                               pdf
  competence.                               www.floridainclusionnetwork.com.
                                                                                            National Down Syndrome Society,
z Voice your concern for all                Author’s note: Special thanks to Vicki          Elementary & Secondary Education –
                                                                                            What is Inclusion? Education, Development,
  children’s needs, not just those          Barnitt, Florida Inclusion Network Product
                                                                                            and Community Life [On-line] p.4.
  of your child. This helps inform          Development Office, for her invaluable input    Available: http://www.ndss.org/index.
  school staff of your understanding        to this article; to Vicki and Dr. Diane         php?option=com_content&view=article&id
                                                                                            =58&Itemid=83&limitstart=3
  of the difficulties they face in          Ryndak, University of Florida for their
  meeting the needs of all their            mentoring and to Cheryl Liles, Director of      National Study on Inclusion: Overview &
                                                                                            Summary Report. National Center on
  students and reinforces your              the Florida Inclusion Network for her
                                                                                            Educational Restructuring and Inclusion Bulletin,
  willingness to assist them in their       steadfast support for our work.                 v2 n2 Fall 1995 Record Details - ED389143
  critical work.                                                                            Peck, Staub, Galluci, and Schwartz (2004)

z Ask to be part of the decisions           references                                      Research & Practice for Persons with Severe
                                                                                            Disabilities, 29, (2), 135–143
  that school staff make about              Baker, E.T., Wang, M.C., and Walberg, H. J.
                                            (1994). The effects of inclusion on learning.   Wolpert, G. (1996). The Educational Challenges
  your child. When the school staff         Educational Leadership, 52 (4), 33-35.          Inclusion Study. New York, NY: National
  understands your desire and                                                               Down Syndrome Society.
                                            Education Week (January 8, 2004). Quality
  willingness to be a crucial part of       Counts 2004: Count Me In. Education Week,
  your child’s team, they become            XXIII, No. 17, 1-153.




                                                              The Broward Gold Coast DS Organization hosted a
                                                              Just Dance! event on February 19, 2011, with music,
                                                              costume characters and a visit from NDSC Board
                                                              Member and self-advocate Patricia Moody who sang
                                                              and signed in ASL. For information about bringing a
                                                              Just Dance! to your school or community, contact the
                                                              NDSC at 1-800-232-NDSC or info@ndsccenter.org.


26 •   DowN syNDrome News         •     volume 34, #2
an Unforgettable
experience with the nDSC
By Jamie Schwartz, Orlando, FL

We all have life experiences which hold special places in
our hearts. These life-changing moments often occur at
unexpected times, as was the case for me last summer
at the 2010 NDSC Convention. It was one of the best
weekends of my life.

As a graduate speech-language pathology (SLP) student
at the University of Central Florida, I enrolled in an
augmentative and alternative communication class.
Because I’m busy with both courses and clinical work,
I surveyed the course requirements and saw that my
classmates and I would provide communication supports
for self-advocates attending the NDSC convention at
Walt Disney World®. At the time, I anticipated it would
just be one of the many course requirements along with
exams, readings, labs, and writing assignments. After
working with my professor, Dr. Jennifer Kent-Walsh,
and staff from the DSA of Central Florida, the Florida
Alliance for Assistive Services and Technology (FAAST),
Atlantic Region Assistive Technology Demonstration
Center and the NDSC to prepare for this experience, I
felt ready to complete the class assignment. However,
                                                                 jamie sChwartz with two of her
within minutes of meeting my six self-advocate partners
                                                                      CoNveNtioN PartNers
for the weekend, I knew this service-learning “project”
would be a life-altering experience. It was clear to me
that I would be learning much more than how to              songs that incorporated sign language was very fun. I
support the communication needs of individuals with         realized that, as professionals, we need to think outside
Down syndrome (DS).                                         the box and ensure our clients are able to communicate
                                                            in fun and engaging activities that are meaningful to
On the first day of the convention in the huge ballroom     them — like singing and dancing to music with friends!
that was the center of the action, I found myself in the    The supportive and non-judgmental atmosphere at the
midst of several hundred enthusiastic self-advocates who    convention was obvious from this very first activity.
appeared to be greeting old friends and welcoming new       Although I am a terrible dancer, it was liberating to
friends with open arms as the Chris Burke Band got the      have people I just met ask me to dance and realize they
party going. Since I had studied various forms of           were not going to judge me for my questionable dancing
communication all semester, participating in interactive
                                                                                                   continued on page 28

                                                                  volume 34, #2    •   DowN syNDrome News        • 27
an unforgettable experience
continued from page 27
                                                                Treasures from the
                                                                heart Silent auction
skills. Instead, they complimented me on my efforts!            By Martine Hobson, Chair,
Similar compliments were shared among everyone                  Silent Auction Committee
throughout the weekend, which really lifted up
                                                                As you may have heard, the NDSC Silent Auction
everyone.
                                                                will return to the NDSC Convention this year in
My group attended a trio of spectacular workshops led           San Antonio. With a theme of Treasures from the
by self-advocates where I noticed a recurring pattern of        Heart from Deep in the Heart, it promises to be a
extremely positive attitudes and optimistic mindsets. We        fantastic addition to an exciting weekend. The silent
all tried new activities and strategies, such as making         auction will be Friday night, August 5, from 8 to
sushi and employing specific communication strategies,          10 p.m.
and the facilitators and self-advocates supported each
                                                                The Silent Auction Committee would like your help
other. Everyone was accepted, regardless of whom they
                                                                in making this event a success. Please consider
were, what they looked like or where they came from
                                                                donating an item from your parent group, business or
with a consistent message that you can do whatever you
                                                                family. You might make a gift basket around a specific
set your mind to do. Throughout the weekend, the
                                                                theme, such as reading, children, relaxation, cooking
sincerity behind the interactions made it impossible to
                                                                or showcasing your home state or community. You
leave a session without feeling like you could take on
                                                                could also donate a gift certificate, piece of artwork or
the world if you were willing to try.
                                                                craft, sports collectibles or toys. Items created by self-
My experience at the 2010 NDSC Convention had a                 advocates (original artwork, photography, jewelry) are
profound effect on my approach to clinical work and an          especially popular. The sky’s the limit! And the
even more meaningful effect on my outlook on life and           proceeds from this event target NDSC programs
my interactions with others. Although many people               that promote independence and self-advocacy skills
would say that I have always been an enthusiastic and           for people with Down syndrome.
energetic person, I can honestly say I have a new
                                                                Thank you in advance for your support for the 2011
“spark” and pep in my step! I know that experience
                                                                silent auction. We look forward to seeing you in
taught me far more than what I needed to know to
                                                                San Antonio!
meet my course objectives. Many individuals thanked
me for helping that weekend, but I am grateful for the
opportunity to play a small part in such a positive
experience. At the conclusion of this wonderful journey,          kendra scott jewelry
I made plans to attend the 2011 NDSC Convention
and many more. I hope you will consider joining me
                                                                  sales Benefit NDsC
and so many others this year in San Antonio, TX. I                Jewelry designer Kendra Scott has teamed
guarantee you will end up with many memories that                 up with Issie, a self-advocate who loves to
will forever have special places in your hearts!                  draw hearts, to create the Issie Heart
                                                                  Collection. A portion of proceeds from the
Editor’s note: To find out more or to volunteer for the           jewelry sales will benefit the NDSC. Take a
San Antonio convention, visit www.ndsccenter.org and click on     look and order at www.kendrascott.com.
the “Volunteer” link.



28 •   DowN syNDrome News            •   volume 34, #2
National Down Syndrome Congress Convention
FRIDAY THROUGH SUNDAY, AUGUST 5-7, 2011


SILENT AUCTION
Treasures from the Heart Silent Auction & Reception
Friday, August 5
8 to 10 p.m.
JW Marriott Hill Country Resort
Grand Oaks Ballroom Foyer

Looking for a fun and easy way to help support programs which promote independence and self-advocacy
skills for people with Down syndrome? If so, please consider donating an item for this year’s silent auction, to
be held during Friday night’s reception. In the past, individuals, families, affiliates, and businesses have all
contributed to support this worthy cause. Tax-deductible donations range from gift certificates, artwork, crafts,
sports collectibles, and toys, to gift baskets with themes such as reading, kids, relaxation, cooking or
showcasing your hometown or region.


Silent Auction Donation Form
Name:__________________________________________________________________________________
Organization Name (if applicable):___________________________________________________________
Address:________________________________________________________________________________
Phone:__________________________________ Email:_________________________________________
Brief Description of Donated Item: __________________________________________________________
________________________________________________________________________________________
________________________________________________________________________________________
________________________________________________________________________________________

Estimated Value: ___________________

Please Check One:                     I’ll bring the item(s) to the convention by noon on Friday

                                      I’ll ship in advance to: DSA of San Antonio
                                                               2800 NW Loop 410
                                                               San Antonio, TX 78230

Return no later than July 15, 2011, to:
NDSC, ATTN: Martine Hobson
1370 Center Drive, Suite 102
Atlanta, GA 30338
1-800-232-6372 Fax 1-770-604-9898
Direct: 1-901-262-0473
Email: mhobson584@aol.com



                                                                 volume 34, #2   •   DowN syNDrome News      • 29
Resources: Book Reviews

 BIENEStAr MENtAL EN LOS AduLtOS                             • Desarrollo emocional.
 CON SíNdrOME dE dOWN: uNA guíA
                                                             • Tendencias a la repetición
 pArA COMprENdEr y EvALuAr SuS
                                                               y la monotonía.
 CuALIdAdES y prOBLEMAS
 EMOCIONALES y CONduCtuALES                                  • Autoestima e imagen de
                                                               uno mismo.
 by Dennis McGuire, Ph.D. & Brian Chicoine, M.D.
                                                             • Temas relacionados con las
  (Woodbine House, 6150 Bells Mill Rd.,
                                                               diversas etapas de la vida.
 Bethesda, MD 20817, 1-800-843-7323,
 www.woodbinehouse.com), 2011, (441 pp.),                  La segunda parte aborda de
 paperback, $29.95                                         forma sistemática la patología
                                                           conductual y mental que en ocasiones aparece a lo
 Carentes de antecedentes inmediatos, y conscientes        largo de la vida, con capítulos dedicados a:
 de que su empresa era eminentemente creadora,
 el equipo liderado por un trabajador social clínico, el     • Depresión y otros trastornos del estado
 Dr. McGuire, y un médico internista, el Dr. Chicoine,         de ánimo.
 se dedicó a analizar exhaustivamente cada caso que          • Ansiedad.
 acudía a su centro de adultos para seguirlo de cerca
 y poder establecer cuánto había de problema físico,         • Psicosis.
 cuánto de problema conductual y qué estrecha                • Trastornos obsesivo-compulsivos.
 correlación podría establecerse entre ambos. De este
 modo, la experiencia acumulada en el análisis caso          • Tics y otros movimientos repetitivos.
 por caso, se fue destilando con exquisito rigor en la       • Trastornos por déficit de atención con
 elaboración de criterios y categorías fielmente               hiperactividad y otros temas relacionados
 compilados y reflejados en este libro.                        con el control de impulsos.
 En la primera parte se aborda la explicación de las         • Autismo.
 características propias de los adolescentes y adultos
 con síndrome de Down, a lo largo de capítulos que           • Enfermedad de Alzheimer.
 exponen temas tan apremiantes como:                       Para cada situación, los autores describen los signos




Resources
   • Apoyo de la comunidad y la familia.                   problemáticos, el proceso diagnóstico y un abanico de
                                                           opciones terapéuticas, como asesoramiento, terapia
   • Soliloquios y amigos imaginarios.                     conductual y medicación.
   • Problemas relacionados con la comunicación.           Editor’s note: A review of this book appeared in English in
   • Puntos fuertes y débiles de la memoria.               Down Syndrome News, Vol. 29, No. 6.




30 •   DowN syNDrome News        •   volume 34, #2
Development News                        By John Kupris, NdSC development director




CreatiNg your legaCy at the NDsC
In 1994, Ms. Dolly Riedel               financial and tax benefits that         memorialize a loved one who has
celebrated a signature event when       accrue to the legacy donor and          guided you, express your hope for
she became the first person to create   NDSC Heritage Society members,          the future, or any number of other
a major legacy for the NDSC. Her        the greatest benefit of all is the      personal objectives or reasons.
estate gift of $752,451.56              satisfaction of creating a gift to      Working with the NDSC, your
established an endowment for the        support the NDSC’s mission.             gift can be tailored to achieve
NDSC, which formed the NDSC                                                     your individual dreams and to
                                        Dolly Riedel truly created a legacy
Foundation on December 30, 1994.                                                complement your other financial
                                        for a greater purpose — and you
Dolly’s generous gift has ensured                                               and estate planning objectives.
                                        can, too. The NDSC invites you to
the NDSC is able to provide
                                        create a lasting and meaningful         An advantage to working with the
information, advocacy and support
                                        legacy to help fulfill our mission      NDSC staff is assurance that your
concerning all aspects of life for
                                        and to live it out fully today and      charitable designation is understood
individuals with Down syndrome
                                        into the future. A legacy gift          and your wishes can be achieved.
(DS). Dolly shared NDSC’s vision
                                        provides support for all people         It also allows the NDSC to express
of working to create a world with
                                        with Down syndrome.                     its gratitude for your legacy!
equal rights and opportunities for
                                                                                Benefactors who plan legacy gifts
people with DS.                         Leaving a legacy to the NDSC can
                                                                                with the NDSC will find the process
                                        be accomplished without involving
The NDSC Heritage Society honors                                                satisfying and a reason for donors,
                                        NDSC staff. However, the NDSC
Dolly Riedel and all other legacy                                               family, advisors, NDSC members
                                        offers to collaborate with you and
donors to the NDSC and NDSC                                                     and others to celebrate.
                                        your advisors (tax, legal and/or
Foundation who make planned gifts
                                        financial) as you create your values-   For more information on giving to
that will benefit and strengthen our
                                        based gift through your estate plan.    the NDSC, please contact me at
programs and membership into the
                                        Your charitable goal may reflect an     John@ndsccenter.org.
future. Although there are many
                                        important milestone in your life,




Create a lasting and meaningful legacy to help fulfill our mission
        and to live it out fully today and into the future.

                                                                    volume 34, #2   •   DowN syNDrome News     • 31
 Down Syndrome News is a benefit of your annual membership in
 the National down Syndrome Congress. to renew or join today,
 visit ndsccenter.org or call 1-800-232-NdSC (6372).




                                                                                                                             NoN-proFIt org.
                                                                                                                                 u.S. poStAge

                                                                                                                                      PAiD
                                                                                                                                  DAllAS, tX
 1370 CeNter Drive, suite 102
                                                                                                                              permIt No. 2409
 atlaNta, georgia 30338


 NDsCCeNter.org




   News
D O W N S Y N D ROM E


 A newsletter published throughout the year
 by the National Down Syndrome Congress.




 Now is the time to register for              La convención anual del NDSC
 this year’s NDSC Convention at               se lleva a cabo del 5 al 7 de
 the JW Marriott Hill Country                 agosto del 2011en el hotel JW
 Resort in San Antonio, TX,                   Marriott en San Antonio, Texas.
 August 5 – 7, 2011! Convention               ¡Ahorre dinero! Llene su
 brochures are in the mail and                inscripción electrónica antes
 online registration is in progress           del 15 de julio en el sitio de
 at www.ndsccenter.org. Register              internet www.ndsccenter.org. El                                      h
                                                                                                                    Join Us Fo
                                                                                                                              rT
                                                                                                       DSC Conventi e
                                                                                                  al N             on
 by Friday, June 24, and save                 folleto de la convención ya fue       3 9 th   A nnu

 money by taking advantage of                 enviado por correo a los
 the “early bird” general                     miembros del NDSC.
 convention registration discounts.                                                          Deep In The Hear
                                              Esperamos verlo en la reunión                  August 5 – 7, 2011
                                                                                                                                  t
                                                                                                                 San Antonio, Texa
                                                                                             JW Marriott Hill                     s
                                                                                                                Country Resort

 We hope you join us at this                  más grande de jóvenes y adultos
 year’s largest annual gathering              con síndrome de Down, sus
 of self-advocates, families and              familias y los profesionales que
                                                                                  39th Annual
 professionals as we come together            los apoyan. Todos juntos vienen a   NDSC Convention
 to learn, grow, celebrate, connect,          aprender, celebrar, intercambiar,   August 5 – 7, 2011
 share — and dance!                           compartir y bailar.                 San Antonio, Texas

				
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