Newsletter of the N at i o N a l DowN syNDrome CoNgress
D O W N S Y N D ROM E
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.
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
bOOk RevIeWS . . . . . . . . . . . . . 30
CReaTIng YOUR legaCY
aT The nDSC . . . . . . . . . . . . . . . 31
Bill aND his sisters iN 2008
DowN syNDrome News
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: firstname.lastname@example.org that embraced him from the start. It about acceptance. He headed off to
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
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
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.
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 email@example.com; 612-624-6090.
prayer, a James Taylor tune and a
homily about a man and his
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
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.,
“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
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
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
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 firstname.lastname@example.org.
26 • DowN syNDrome News • volume 34, #2
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
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
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
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
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
Organization Name (if applicable):___________________________________________________________
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
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
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
• 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).
1370 CeNter Drive, suite 102
permIt No. 2409
atlaNta, georgia 30338
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
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
San Antonio, Texa
JW Marriott Hill s
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
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