From Down Syndrome World^TM 2019 Issue 4 of 4

Multi-Talented Performer Meg Ohsada Has Learned That, When It Comes To Communication, Words Aren’t Always Necessary.

This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

MEG OHSADA, a Canada native who happens to have Down syndrome, has become an international superstar known for her competitive figure skating and dancing with four Special Olympic medals and counting. She is also known for her extraordinary, widely-collected artwork. At just 25-years-old, Meg also has her artwork displayed and purchased at prestigious galleries around the world. And believe it or not, that’s not all she does! She recently took up rhythmic gymnastics and modeling, too.

Born to Japanese parents who immigrated to Canada, Meg is one of three girls. Although Meg is nonverbal, she communicates her powerful and inspirational messages through her passion for sports, fashion, advocacy, and art.

Her accomplishments serve as an inspiration to the Down syndrome community and she recently began modeling to continue her advocacy work for people who are differently-abled.

“Meg is the family’s backbone,” says her mother, Noriko Ohsada. “Her gentle presence has given us love, strength, inspiration, and hope for the future.

A DEDICATED FAMILY

Noriko, who immigrated to Toronto, Canada, from Japan with her husband, Kaoru Ohsada, did not know what Down syndrome was until Meg was born in 1993. In fact, Noriko recalls, she had to learn the word “chromosome” in English when a doctor told her that additional testing was necessary.

Noriko remembers being very scared when she researched the condition. She read that Meg would not live long and would need to be institutionalized. Thankfully, the medically inaccurate information did not deter her and Kaoru’s belief in Meg’s abilities.

From the time Meg was born, her parents noticed she was a happy baby and an energetic, passionate child. Shortly after Meg was born, Noriko and Kaoru had two more daughters: Sari, now 23, and Juli, now 22.

Meg always had difficulties with verbal communication and continued to struggle to talk after undergoing speech therapy.

In 1997, searching for a fresh start and better access to medical care, the family moved from Toronto to Canmore, a small town in Alberta, Canada at the edge of the Canadian Rockies. That’s where Meg’s remarkable artistic abilities began to take shape.

“As my children are close in their age, I always introduced the same activities to all of them,” Noriko says. “Figure skating was the perfect activity for the girls to be athletic and beautiful at the same time. I truly enjoyed watching them.”

“We noticed Meg could remember movements with music very quickly,” Noriko says. “That’s when we realized that performing arts was a way of self-expression.”

LOUDER THAN WORDS

Meg took to figure skating like a natural, impressing her family and her instructors by skating through intricate choreography, remembering every step. At age 8, she joined a local figure skating club and eventually began attending a weekly Special Olympics figure skating program in Calgary, about an hour from Canmore. Meg gets on the ice four to six days a week, for an hour or so a day. Plus, she does yoga, gymnastics, and other physical activities to stay in shape.

She has excelled as a figure skating competitor, earning two gold medals at the 2019 Special Olympics Alberta Winter Games and two silver medals at the 2013 Special Olympics World Games in Pyeongchang, South Korea. In 2015, she competed in the Canada Games, which features athletes of all abilities. She continues to inspire other skaters with and without Down syndrome at her home rink in Canmore.

Meg began her dance career at age 14 and attends four dance classes per week. She is also a rhythmic gymnast, a sport she took up at age 18.

She competed in dance in both the 2015 and 2017 Special Olympics World Games, placing fourth at the 2017 Winter Games in Austria. In 2017, she also performed a ballet solo with Ignite Dance at Banff Centre in Banff, Canada, near her hometown of Canmore.

A MULT-TALENTED ARTIST

Movement isn’t Meg’s only form of expression. At age 21, Meg began a career as an artist, taking classes at the Indefinite Arts Centre in Calgary.

Her artwork has appeared in galleries in Hong Kong, Seoul, and South Korea, and she was the featured artist at a local gallery, artsPlace, in Canmore.

Meg’s favorite piece is an abstract self-portrait of herself dancing.

“She expresses herself through art, and she loves public exhibition opportunities where she can get that recognition from other people,” Noriko says.

Last year, Meg took up modeling as a way to showcase the beauty and talent of people who are differently-abled. “I believe Sari and Juli learned many wonderful lessons from Meg, including her enthusiasm, optimism, and compassion toward others,” Noriko states.

Meg encourages everyone to work hard and find their own voice. Through her multi-faceted art forms, she shares an important message: “Do what you love, and great things can happen.”

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From Down Syndrome World^TM 2019 Issue 4 of 4

When 16-Year-Old Courtney Gaines Has Her Eyes on the Prize, There’s No Stopping Her. Her Latest Endeavor? Rocking the Runway at Global’s Fashion Show with Model & Actress Mikaela Hoover

This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

An actress, singer, dancer, and model, 16-year-old Courtney Gaines is no stranger to the spotlight. She is an active member of her community, an Ambassador for a women’s non-profit, and most recently, an entrepreneur. She is determined to show the world that she can do whatever she sets her mind to. What better next stop than to model at the largest fundraiser for Down syndrome in the world?

“The more people see her, the more people love her,” says Courtney’s mother, DeAnna Gaines. Courtney is engaged with many local groups Oklahoma including the Greater Love Missionary Baptist Church, Shining Starz Special Needs Cheer Squad, Down Syndrome Association of Central Oklahoma, and the Air Force JROTC. “Seeing how Courtney’s energy radiates onto everyone around her, we looked for other opportunities for her to shine.”

When DeAnna and Courtney found the Global Down Syndrome Foundation (Global) online they were impressed by the organization’s government work and intrigued by Global’s fashion show. Courtney’s passion for performance and advocacy for inclusion seemed to make her the perfect fit.

“I love to help others and listen to them,” Courtney says. “I want to do good things for others in everything I do.” She is an Ambassador for GirlTrek, the largest national public health non-profit supporting African-American women and girls in the U.S., with a special strategy to connect with women with special needs. Truly a jack of all trades, Courtney also recently started plans for her own business, an online clothing store called CloZet 21c which would raise funds for non-profits.

Courtney’s vibrant personality, loving nature, and happy smile were evident in her audition and she became the first person in Oklahoma to be selected to model in Global’s marquee annual fundraiser, the Be Beautiful Be Yourself Fashion Show. Courtney rocked the runway with Mikaela Hoover, a model, actress, and Instagram influencer who is beautiful inside and out.

Mikaela learned about Global when working on a film in Colombia with her colleague, John C. McGinley, who is a Global board member and international spokesperson. Growing up, Mikaela was very close with her cousin Bobby, who had Down syndrome, and was eager to get more involved in philanthropic work. McGinley told her about Global’s work and Mikaela reached out right away to get involved.

SHINING STARS

Courtney was thrilled to work with a fellow model and actress. “It was so much fun modeling with her! We took selfies and photos backstage too,” Courtney recalls. “She is a great model, she’s so pretty, cool, and very nice.”

As natural performers, Mikaela and Courtney have a lot in common. Mikaela began dancing at the age of 2, and by the time she started school, she was starring in her school’s plays. Mikaela started her acting career in 2006 and is best known for her roles in superhero films including the 2014 box office hit Guardians of the Galaxy and the 2010 superhero dark comedy Super starring Rainn Wilson, Ellen Page, Liv Tyler, Kevin Bacon, and Nathan Fillion. Courtney loves to bring her talents of singing, dancing, and acting to the stage. She was recently in the stage production of Mary Poppins Jr. with Kaleidoscope.

“Courtney was so excited to be on that runway. She knew exactly what she wanted to do and the poses she wanted to strike, and no one was going to stop her,” says Mikaela, who was Courtney’s celebrity escort. “Courtney has so much ambition and carries herself with such grace and independence.”

Both first-timers at Global’s Be Beautiful Be Yourself Fashion Show, Courtney and Mikaela were soaking in every moment. “All of the models had such beautiful energy around them, each one was beaming and shining so bright. It was such an honor to be back there with them,” Mikaela says.

Courtney’s favorite part of the night was blowing her mom a kiss when she was at the top of the stage. “Nothing beats seeing my Courtney up there on stage, dressed to the nines, in the company of Mikaela
and of course our heroes like Jamie Foxx and Quincy Jones,” says DeAnna.

Global’s Be Beautiful Be Yourself Fashion Show raises critical awareness and funds for Down syndrome. This year’s event raised an incredible $2.5 million for Down syndrome research and medical care.

“Global is changing that the narrative surrounding Down syndrome through advocacy and education,” says Mikaela. “Their beauty simply shines from within, and that is definitely something that we need to see more of, not just in the media, but in our world today.”

“All of the models had such beautiful energy around them,” said Mikaela Hoover. “That is definitely something we need to see more of.”

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Overview & Speakers:

This webinar will explain the frequency of diagnoses and importance of adherence to help your child and/or adult wear their medical equipment. Key takeaways include:

• Common types of challenging behaviors that children and adults with Down syndrome may have when working to wear medical equipment

• A step-by-step plan for increasing use of medical equipment

• Motivators for avoiding wearing medical equipment and how to manage these behaviors

Lina Patel, PsyD joined the Sie Center for Down Syndrome at Children’s Hospital Colorado as Director of Psychology in November of 2012. She has extensive experience in treatment planning, parent support, diagnostic evaluation, and intervention. As she believes that behavioral challenges arise for many different reasons, she prides herself in coordination of care with community providers, educational supports, medical team members, and caregivers. Additionally, she conducts clinical research to better understand how neurodevelopment impacts behaviors.

From Down Syndrome World^TM 2019 Issue 3 of 4

Ensuring 2019 Global Ambassador Charlotte Fonfara-LaRose has a ball at the red carpet premiere of Dumbo

This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

IN MARCH 2019,Charlotte Fonfara-LaRose attended the movie premiere of Tim Burton’s live-action remake of the Disney classic Dumbo as Colin Farrell’s guest. Farrell, who plays circus stalwart Holt Farrier in the film, says, “I was so happy to see Charlotte again at the premiere, and I hope to see her again soon!”

Charlotte assures us the feeling was mutual.

“I felt like a celebrity on the red carpet — he totally remembered who I was and gave me a hug!”

Other cast members in attendance included Michael Keaton, Danny DeVito, Eva Green, and Alan Arkin. As for hanging out with other celebrities on the red carpet like Helen Mirren, Charlotte exclaims, “It was so exciting!”

This amazing opportunity stemmed from Farrell’s generous live auction donation at the Global Down Syndrome Foundation’s 10th Anniversary Be Beautiful Be Yourself Fashion Show in 2018, where Charlotte was a model and Farrell was an awardee. This year, Charlotte has been chosen as the 2019 Global Ambassador where she and her family will be honored at Global’s marquee annual fundraiser.

MEET CHARLOTTE FONFARA-LAROSE

The 16-year-old firecracker was named after her maternal grandmother, Charlotte. Charlotte is a natural activist who loves to help people.

“I help anyone feeling sad feel better by giving them a hug,” she says.

Cathy Fonfara and Scott LaRose had Charlotte in 2003. The young new parents did not learn Charlotte would have Down syndrome until she was born, causing quite a shock. However, both Cathy and Scott come from large dedicated families, who rallied in support of their beautiful new addition to the family.

“Her birth made us want to be better people, and we wanted better for her,” says Cathy. “She is really the reason that we have such a great relationship and that we are a loving family together.”

Scott recalls that his father, who was an engineer and probably knew the least about Down syndrome in the whole group, came to them two days after Charlotte’s diagnosis with a binder of information.

“It was a very touching way to approach things, and I think it certainly helped us dig in a little bit,” Scott tells.

Sixteen years later, the family remains close. The Fonfara and LaRose families have a unique arrangement that works well for them and gives Charlotte lots of quality time with her large extended family.

“Scott and I are no longer a couple, but we are a family and we will always be a family,” says Cathy. “We vacation together, we go out to dinner as a family, and we spend every holiday together as a family.”

Charlotte lives full time with her mom and 8- year-old sister, Noelle, in Annapolis, Maryland. Scott is a ver y attentive father who is involved in every aspect of Charlotte’s life. Charlotte also has special relationships with both her grandmothers: Cathy’s mom, whom she calls “Oma,” and Scott’s mom, whom she calls “ Gigi.”

Charlotte is an inspiration to her family and a role model to her little sister, classmates, and peers. She doesn’t let Down syndrome get in the way of pursuing her dreams, and she lives her life as any typical 16-year-old. She loves horseback riding, swimming, paddleboarding, and traveling. In fact, she’s traveled to over 30 states and 10 countries with her family! She has a boyfriend named Zach, whom she has known since childhood, and they love going on sushi dates. Charlotte has dreams of owning a bagel shop one day, marrying Zach, and living in a blue and red home together.

Charlotte has inspired her mom into action.

“Over the years Charlotte has shown me that all she needs is what all children need: love, support, and encouragement,” says Cathy. “She also has helped me to educate doctors, teachers, and school administrators about the ability and potential of people with Down syndrome.”

GLOBAL’S 2019 AMBASSADOR

This year, Charlotte and her family are thrilled to be named an Ambassador family at the 2019 Be Beautiful Be Yourself Fashion Show. The event is the largest fundraiser for Down syndrome in the world. Over 1,400 self-advocates, families, Hollywood and sports celebrities, community philanthropists, and government leaders attend each year.

Charlotte and her family are no strangers the star-studded evening, though. Cathy and Charlotte were introduced to Global when Zach was in Global’s Washington, D.C. Gala in 2013. Charlotte and Zach danced on the runway together during a performance by Sheryl Crow!

“When we attended our first fashion show, we were astounded by the effort, quality, and attention that Global put into providing such a beautiful and festive event to showcase the beauty of individuals with Down syndrome,” says Cathy.

While she is always impressed by the famous and influential people who come out to support the show every year, Cathy is clear.

“The best part is when the models walk the runway, unintentionally stealing the spotlight from those celebrities escorting them,” she says. “The pride and joy on the models’ faces is indescribable and inspiration is palpable.”

Charlotte and her family have now attended seven Global fashion shows.

COLIN FARRELL’S SPONTANEOUS AND IMPROMPTU GENEROSITY

In 2018, at Global’s 10th Anniversary Be Beautiful Be Yourself Fashion Show, guests went wild for the 25 models with Down syndrome, including Charlotte. They were also brought to their feet by two inspiring recipients of Global’s Quincy Jones Exceptional Advocacy Award — Zack Gottsagen and Colin Farrell.

Farrell is an award-winning Irish actor and activist. He received his first Golden Globe for In Bruges and was nominated for multiple awards for his performance in The Lobster, starring opposite Rachel Weisz. More recently he has star red in the Harry Potter spin-off prequel, Fantastic Beasts and Where to Find Them, The Killing of a Sacred Deer with Nicole Kidman, Roman J. Israel Esq. with Denzel Washington, and the Disney live-action film Dumbo directed by Tim Burton.

Farrell uses his public platform to support organizations he is passionate about. He serves a celebrity partner for the United Nations’ World Food Programme, was an official spokesperson for the Special Olympics World Games in Shanghai, and supports nonprofits focused on the differently-abled community in tribute to his son, James.

As a father to a son with Angelman syndrome, Farrell has supported the Foundation for Angelman Syndrome Therapeutics for over a decade. He credits his son with making his life more meaningful and fulfilling.

“James’ very existence has changed so much about my life and how I preserve my own life selfishly being a caretaker and having the gift of being a protector and a provider for James, and as someone who loves him endlessly, someone who has watched his growth from infant to child to teenager now and approaching his young manhood,” he says. “James’ strength and bravery, his individuality and yet his commonality are things I’m constantly struck by.

“And, of course, as a result of his existence, it has afforded me the great gift of being involved in the lives of other families who care for a child who is differently-abled,” Farrell continues. “I’ve been touched by and allowed to be close to families who share the struggles of just being a par ent first and foremost but also the extra struggles that can arise from being a parent of a child who is differently-abled. James’ enrichment of my life is beyond measure.”

Indeed, James and his work benefiting the differently-abled brought Farrell to Denver last year to receive Global’s highest honor. During the fashion show’s live auction, Farrell jumped up on stage alongside Jamie Foxx, Jeremy Renner, Von Miller, and John C. McGinley and spontaneously offered a trip to Hollywood and tickets to the premiere of Dumbo. Impressed and moved by Farrell’s generosity, Charlotte and her mom decided to bid on the tickets, and they won!

At the fashion show, Farrell took photos with Charlotte and all the models with Down syndrome, and spoke to reporters on the red carpet.

“Seeing all of the members of the community walking down the runway and seeing how much they were empowered, and how the models and every single person in the audience was enraptured, seeing this as an indelible moment and celebration of their lives, and their brilliance as human beings and spirits both individually and as a community, was extraordinarily enriching and also emboldening to observe,” Farrell says.

“What a class act to not only support Global with his presence at the gala but to also offer an ex citing item to raise more money,” says Cathy. “And then be so down to earth and caring to make my sweet Charlotte feel so special.”

FIGHTING DISCRIMINATION AND OVERCOMING CHALLENGES — A REWARDING LIFE

Thousands of guests travel from all over the world to see Global’s iconic fashion show, where models with Down syndrome rock the runway with their celebrity escorts. The evening gives attendees an opportunity to learn, network, and support Global’s work. Through ticket and table purchases, model sponsorships, silent and live auction bids, and general donations, the proceeds from Global’s Be Beautiful Be Yourself Fashion Show benefit their affiliates’ important work in research and medical care.

“The underlying theme of the fashion show is actually human and civil rights, and our event gets to flip an old, negative paradigm on its head,” says Michelle Sie Whitten, President and CEO of Global. “From very active members of the Global community to people who are completely new to Down syndrome, everyone leaves feeling they are a part of something bigger than themselves.”

Charlotte’s family agrees.

“We’ve faced some heartbreaking discrimination in the education system, with teachers creating restrictive learning environments and blatantly excluding kids with special needs,” says Cathy. “One of the many great things that Global does is helping every individual with Down syndrome with education from academia to life skills. They work with parents and their children on their IEPs (individualized education programs), and they are now developing an education center at their new headquarters to focus on vocational training.”

Global aims to show the world that people of all abilities , like Charlotte and James, should have the opportunity to reach their full potential and live happy, rewarding lives.

“Educating our medical professionals and our community is important,” says Farrell. “Imagine you are told your child may never walk and then you see your child take his or her first steps a couple of weeks short of their fourth birthday like James did. The profundity and the emotional magnitude are overwhelming and must be shared with others to educate how y our child’s future is communicated. So there will be great challenges with your child like any child, but the rewards can be unimaginable and even more magnified.”

WORKING HARD TO CREATE HEALTHY LIVES

Global’s Ambassadors and models help raise awareness and advocate for people with Down syndrome to have equal access to transformative research, lifesaving medical care and other opportunities. And who’s at the top of Global ’s contact list for this? The U.S. government. Down syndrome has been one of the least-funded genetic conditions by the National Institutes of Health (NIH) for nearly 20 years, despite being the leading cause of developmental delay in the U.S. and the world.

Angelman syndrome is also a genetic condition. Farrell says that although he was saddened to learn about this disparity in funding, he wasn’t surprised.

“I think maybe the reason for this is a bittersweet one,” Farrell says. “Because people with Down syndrome are often presented as loving and happy, members outside of the community may think there’s no help needed. And it’s our job to teach others that people with Down syndrome need specialized medical care and research and, frankly, help throughout their lives and raise awareness.”

Farrell is optimistic about the progress in research for various genetic conditions “It’s an exciting time in science, and the future is looking brighter for our children than ever before.”

Over a decade of Global lobbying Congress and collaborating with the NIH has resulted in a tripling of the NIH’s Down syndrome research budget, from $27 million in 2016 to $77 million in 2019.

“Through Global, we have come to understand that people with Down syndrome have a different disease profile and that they need specialized medical care throughout their lives,” says Scott. “I was shocked to learn that there are no updated, evidence-based medical care guidelines for adults with Down syndrome. We are hugely grateful to Global and the experts who are working to create those for Charlotte and our community.”

“Global’s amazing work in advocacy, medical care, research, and government legislation will help my daughter and others with Down syndrome be able to live the lives they want and the lives all parents wish for their children,” says Cathy.

“Global’s work is so important because they help find the best treatments for people with Down syndrome who are sick,” Charlotte adds.

The connections between Down syndrome and cancer research are particularly important to the family. In 2016, Charlotte’s friend Mary Miller was diagnosed with leukemia. Charlotte and Mary, both born with Down syndrome, have been friends since appearing as models in Global’s 2014 Be Beautiful Be Yourself Fashion Show. Motivated by Mary’s fight against leukemia and their desire to fund critical Down syndrome research, Cathy and Scott funded a Basic Science Grant to Joaquín Espinosa, Ph.D., and his team at the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus. Additionally, Charlotte’s grandmother Gigi has cancer, and as always, the family is supporting her every step of the way.

“Charlotte has a heart of gold and is already a champion for others who are sick or who she feels are disadvantaged in some way,” says Cathy. “She was just born that way, and we can’t wait to see what challenging projects and work she will take on going forward.”

“As a parent, Charlotte is my number one priority,” says Scott. “I want to make sure she receives everything she needs to reach her potential. By supporting Global, we have the luxury of not only helping Charlotte, but helping all people with Down syndrome and that’s an amazing feeling.”

Charlotte will be featured at Global’s Be Beautiful Be Yourself Fashion Show on Saturday, Nov. 2. Farrell encourages everyone to support her.

“I would recommend anyone who gets a chance to support Global and the Be Beautiful Be Yourself Fashion Show in Denver try and make the trip. Charlotte and everyone with Down syndrome deserve your attention. The event itself is love, community, harmony, unity, and unbridled hope for our future.”

“Whether she is being poked and prodded for medical tests, being underestimated by teachers at school, or having people staring at her as she walks down the street, Charlotte has always been brave, resolute, and true to herself. She is truly a great role model and Ambassador.”

Charlotte is excited to apply her strength and passion to her new role with Global.

“As Global’s Ambassador, I hope to help other people with Down syndrome be healthier through medical research, to bring attention to Global’s mission, and to bring respect to people with Down syndrome.”

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An important study in the journal of mental health research in intellectual disabilities shows that children with Down syndrome demonstrate increased behavioral issues compared with their typical peers. Early intervention and a development strategy can help.

This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

A STUDY CONDUCTED by doctors at the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado, an affiliate of the Global Down S yndrome Foundation, found that 94% of children with Down syndrome experienced one or more behavioral challenges on a w eekly or even daily basis. These behaviors include wandering off, refusal to follow instructions, aggression, impulsivity, and difficulty transitioning from activity to activity. Behavioral challenges can not only impact a child’ s quality of life but also cause major str esses for parents, teachers, and other caregivers.

In the study, Lina Patel, Psy.D., and her three co-authors, Kristine Wolter-Warmerdam, Noel Leifer, and Francis Hickey, M.D., analyzed current tools for measuring behavior in children with Down syndrome to determine which methods were effective and which could be improved upon. They also surveyed parents to learn about which behaviors were the most common and if any challenges shared a common denominator. The doctors published their results in late 2018.

Children with Down syndrome have many positive behavioral traits, and typical children certainly have negative behavioral issues. However, because of lack of research, behavior issues in children with Down syndrome are less understood. Behavioral challenges can hamper a child’s ability to function independently, perform well in school or other social settings, and even handle everyday tasks, such as bathing and dressing, at home. By understanding what can trigger certain behavioral issues, parents and teachers can better develop strategies to intervene before issues progress.

COMMUNICATION TOOLS: A COMMON DENOMINATOR

A variety of factors may fuel undesirable behaviors, according to Dr. Patel, lead author and D irector of Psychology at the Sie Center.

“I feel like motivation is a key factor,” Dr. Patel says. “It doesn’t mean that children with Down syndrome are unmotivated. It might just mean they are motivated by their own interests versus the task at hand, which then may result in behavioral challenges.”

Dr. Patel and her co-authors wanted to know which behaviors parents of children with Down syndrome found most concerning. They asked parents of 274 children seen at the Sie Center from 2010 to 2015 to fill out a specially designed questionnaire. On the questionnaire, parents were asked to state the frequency with which 16 behavior challenges occurred and their level of concern about each. Parents could also name additional behavioral challenges not listed on the form. The study is one of the largest of its kind and the results were not completely anticipated.

Noncompliance, wandering, sitting down and refusing to move, and aggression were the most common difficult behaviors parents reported. The amount and frequency of challenging behaviors was much higher than previously reported in scientific literature, with nearly 100% of parents noting the existence of challenging behaviors at least weekly.

“The most striking result we found was the frequency of behavioral challenges,” Dr. Patel says. “I think we did capture a wider array of behaviors, resulting in a higher percentage of children experiencing those behaviors. The good news is that many of the behavioral challenges that we assessed can be addressed using behavioral strategies that are informed by neurodevelopment.”

Neurodevelopment is the brain’s development of neurological pathways that influence areas including memory, intellectual functioning, attention, and focus.

The researchers also wanted to determine if any of these behavioral challenges shared a common denominator. They found that the inability of a child to effectively communicate his or her wants and needs was associated with many behavioral challenges.

“Behavior is a form of communication people use when they do not have access to other methods of communication, like verbal communication,” Dr. Patel explains. “Therefore, it’s not surprising that individuals with Down syndrome would have more behavioral challenges if they do not have more functional communication strategies.”

TAKE ACTION EARLY

The longer parents allow unwanted behaviors to persist, the more ingrained these behaviors may become.

“Behavioral interventions can make a difference and really change behavior,” says Elise Sannar, M.D., Assistant Professor of Child and Adolescent Psychiatry at Children’s Hospital Colorado. “If [parents] just live with [a behavior], it’s definitely not going to get better. If kids with Down syndrome learn that if they have a tantrum or refuse to move, they’ll get what they want, that will be reinforced, and they’ll continue to engage in that behavior.”

When concerning behaviors arise, parents should notify their child’s pediatrician or primary care physician as soon as possible so medical causes can be ruled out. Many behavior issues can be triggered by medical ailments to which children with Down syndrome are more predisposed. One such medical ailment is obstructive sleep apnea, which is found in up to 70% of children with Down syndrome.

In addition, parents should pay attention to the context of behavioral challenges — when, where, and with whom they occur, and what happens before and after them, says Anna Esbensen, Ph.D., Associate Professor, Research Director at the Jane and Richard Thomas Center for Down Syndrome in the Division of Developmental and Behavioral Pediatrics at Cincinnati Children’s Hospital Medical Center.

These clues can provide important information about why behaviors occur. Parents who are concerned about a behavior that happened when they weren’t around can ask their child’s friends, teacher, or employer for information about what took place.

“Teaching the child a replacement behavior or a different way of achieving or communicating their needs are helpful ways of teaching an adaptive … method of achieving their desired function,” Dr. Esbensen explains.

She continues, “Once we understand the function of the child’s behaviors, there are evidence-based strategies that can be used to modify that behavioral challenge.”

According to Dr. Sannar, one such strategy is applied behavior analysis (ABA), which uses a variety of techniques, such as positive reinforcement, to increase helpful behaviors and decrease damaging ones. ABA can be effective in children with Down syndrome, autism, and other conditions associated with behavioral challenges.

For example, Dr. Patel says, ABA can be used to stop a child with Down syndrome from running or wandering away from caregivers, also called elopement. A behavioral analyst can collect data to better understand why the child is eloping — is he or she bored, trying to avoid a difficult task that is hard, or eager for attention? Once the analyst has an answer, he or she can create a plan to address it. For example, if the child is avoiding work that feels too hard, the analyst can slowly increase a task’s difficulty or teach the child to ask for a break.

Helping people with Down syndrome manage behaviors is important, not only for their success in school and social situations but also as they enter adulthood, says Dr. Patel.

“Many individuals with Down syndrome who have the skill to seek employment may not be able to if they have behaviors that interfere with their job,” she advises. “It may be more difficult to gain independence with things like staying home alone or even living with others if these behaviors are not addressed.”

While it is more difficult to change longingrained behaviors, therapies and strategies exist that help adults, and studies are starting to address this older population.

The researchers plan to develop a more comprehensive tool to capture the full range of behavioral health challenges that children
with Down syndrome experience. They hope such a tool would help pediatricians and other community providers determine when to refer children to a behavioral health specialist. Most importantly, by understanding and analyzing. these behaviors, they hope to empower both individuals with Down syndrome and their parents to take necessary actions to improve and maintain appropriate behaviors.

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Findig out your child with Down syndrome has co-occuring Austism Spectrum Disorder (DS-ASD) can be daunting, but a better understanding of DS-ASD opens doors to resources and support that benefit children and families alike.

This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

ACCORDING TO THE American Psychiatric Association, ASD is a complex developmental disorder that can cause problems with thinking, feeling, language, and the ability to relate to others. Symptoms occur on a spectrum ranging from mild to severe, and are characterized by challenges in social interaction, verbal and nonverbal communication, and repetitive behaviors.

Current research suggests between 8 and 18 percent of individuals with Down syndrome may also have autism. According to Sarah Hartway, R.N., M.S., President of the Board of Directors of The Down Syndrome-Autism Connection™, an additional 25 percent of people with Down syndrome may exhibit some autism symptoms but not with enough prevalence or severity to be diagnosed with DS-ASD.

“We know autism occurs more frequently in people who have other genetic or chromosomal anomalies,” Hartway said. “So it’s not surprising that people who have Down syndrome are more likely to have autism than the general population.”

SPOTTING THE SIGNS OF AUSTISM

“All children, at any given time, can exhibit behaviors that are consistent with autism, but a child with DS -ASD may engage in them more frequently or find them to be more problematic,” said Robin Zaborek, who also sits on The Down Syndrome-Autism Connection Board of Directors. “Number, frequency, and intensity of behaviors may be distinguishing factors in evaluating for DS-ASD.”

According to Zaborek, children with DS-ASD may engage in the following behaviors:

• Unusual vocalizations
• Repetitive motions, such as rocking or clapping
• Persistent, pronounced need for structure and routine
• Disinterest in playing with others
• Inappropriate laughing or crying
• Repetitive playing with an object, such as a wooden spoon

In some cases, children with DS-ASD may engage in dangerous behavior, such as running away, self-injury, or aggression. They may struggle to reach developmental milestones and have problems with eating, sleeping, and toilet training. They’re also more likely to have certain medical and behavioral conditions, including gastrointestinal issues, seizures, anxiety, and attention-deficit/hyperactivity disorder.

Fortunately, there are resources and ongoing research for people with ASD that will also benefit people with the dual diagnosis. But diagnosing DS-ASD can be a challenge. “Not all medical professionals are aware Down syndrome and autism can co-occur,”

“Not all medical professionals are aware Down syndrome and autism can co-occur,” said Margaret Froehlke, R.N., B.S.N., Secretary of the Board of Directors at The Down Syndrome-Autism Connection. “If families have a Down syndrome clinic in their community, the clinicians there would be better able to make a dual diagnosis because they have the appropriate background.”

Examples of such clinics include the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado and the Thomas Center for Down Syndrome Services at the Cincinnati Children’s Hospital Medical Center.

Beyond such specialty Down syndrome clinics, Froehlke recommends parents visit a facility that belongs to the network of University Centers for Excellence in Developmental Disabilities, listed at aucd.org.

THE BENEFIT OF KNOWING

Parents of children with undiagnosed DS-ASD can feel very isolated, Froehlke said. They may look at how their child interacts with his or her peers with Down syndrome, and when their child isn’t developing in the same ways or at the same pace, they may pull away from their friends in the Down syndrome community.

“For me and many other parents, getting a dual diagnosis actually leads to relief and validation, because now you understand why your child is different,” she said. “You can begin to seek out the treatments, support, and interventions available to you.”

“There is a compassionate community of professionals and families out there who truly understand the DS-ASD journey is different,” Hartway added. “No one has to walk this path alone.”

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Left to right: Dr. Joaquín Espinosa, Dr. Laurie Ryan, Dr. Dennis McGuire, Dr. Mike Rafii, Dr. Peter Bulova, and Dr. Huntington Potter

Engaging Roundtable Discussion

During Global’s Roundtable, speakers talked about the importance, the issues and the milestones in research and medical care for people with Down syndrome. No seats left in the house!
Speakers included: Quincy Jones Award Recipient Megan Bomgaars, and Global scientists & clinicians Dr. Mike Rafii, Dr. Laurie Ryan, Dr. Huntington Potter, Dr. Joaquín Espinosa, Dr. Peter Bulova, and Dr. Dennis McGuire.

Global’s 2019 NDSC Research & Medical Care Roundtable Recap

Global Receives Prestigious President’s Award

The Global Down Syndrome Foundation was honored to accept the prestigious President’s Award at the 2019 NDSC Annual Convention. Presented at the Annual Convention Opening Session, Global was awarded for their dedication to Down syndrome research, their unprecedented advocacy work, and their tremendous positive impact on the Down syndrome community. Global’s longstanding relationship with the National Down Syndrome Congress will continue to flourish and together, they will work to improve the lives of individuals with Down syndrome.

Patricia Winders Honored

The Sie Center for Down Syndrome’s Director of Therapies & Senior Physical Therapist, Pat Winders, won an award for her poster on motor development for children with Down syndrome at the Down Syndrome Medical Interest Group Conference held in in Pittsburgh.

Left to right: Dr. Mike Rafii, Dr. Jaoquin Espinosa, Dr. Huntington Potter, and Dr. Laurie Ryan

Captivating Workshops

Global scientists, clinicians, Down syndrome experts, and self-advocates presented thoughtful workshops on everything from aging in adults with Down syndrome and Alzheimer’s to teaching motor skills to advocacy training and more.

An Unprecedented and Exciting Down Syndrome Research Discovery Engine – The Crnic Institute Human Trisome Project
Dr. Joaquín Espinosa, PhD

How to Teach Your Child Gross Motor Skills – Birth to Walking
Patricia Winders

Promoting Strengths and Adaptive Resources in Persons with Down Syndrome
Dr. Dennis McGuire, LCSW, PhD

How to Teach Your Child Gross Motor Skills – Post-Walking Skills
Patricia Winders

Alzheimer’s Disease and Down Syndrome
Dr. Huntington Potter, PhD

CPAP, Hearing Aids, & Glasses, Oh my! How to Help my Child Wear Their Medical Equipment
Dr. Lina Patel, PsyD

Making the Most of a Behavioral Health Consultation for Adults with Down Syndrome
Dr. Dennis McGuire, LCSW, PhD and Bryn Gelaro, LSW

Educational Grants Announcement 

Research & Medical Care Roundtable

For more information on any of our workshops or speakers, contact events@globaldownsyndrome.org

Pay it Forward – Educational Grants to 12 Down Syndrome Organizations

In 2019, Global awarded $75,000 to twelve of its member organizations, bringing the total given through its Educational Grants program to over $625K. Since 2012, Global has awarded grants to 72 innovative educational programs developed by local, national and international Down syndrome organizations.

Global’s 2019 Educational Grants Recipients