DSACK Spring 2023

FEATURE STORY

An up close look at regression in adolescents, young adults

BE INSPIRED

At home on the range: an archer who inspires Page 12

EMILY INVESTIGATES

What it means to be a good friend

On the Cover: Juno York

STAFF

ExecutiveDirector:TraciBrewer

EducationCoordinator:JeanBryant

Medical/CommunityOutreachCoordinator:CourtneyElbert

CommunicationsCoordinator:JuliaForrester

OfficeCoordinator/MagazineEditor:TerriMcLean

AdministrativeAssistant:EmilyWright

OFFICERS

Chairperson:CoreyHawes

Versailles,KY

Treasurer:LeeAnnMullis

Georgetown KY

Secretary:AnnaBullard

Lexington,KY

BOARDOFDIRECTORS

ChristopherAzbell

Lexington,KY

JayCastaneda

Lexington KY

KC Cumbermack

Lexington,KY

KristenDieruf

Lexington KY

KelleyNunnelley

Lexington,KY

AmyRoberts

Somerset KY

CONTACTINFORMATION

Contents

PAGE 3

FROM THE EXECUTIVE DIRECTOR

PAGE 4

PARENT'S PERSPECTIVE: CARYN SORGE

PAGE 6

EVENT SPOTLIGHT: DSACK ROAD TRIP

PAGE 8

FEATURE STORY: REGRESSION IN ADOLESCENTS AND YOUNG ADULTS

PAGE 12

BE INSPIRED: JOHN HENSON

PAGE 14

FROM THE DSACK BOOKSHELF

PAGE 15

EMILY INVESTIGATES: FRIENDSHIP

ElizabethRussell

Paris,KY

MargotSchenning

Lexington,KY

MattShorr

Lexington,KY

CarynSorge

Lexington,KY

JonathanWright

Lexington,KY

LauraYost

Lexington,KY

DownSyndromeAssociationofCentralKentucky

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FROM THE EXECUTIVE DIRECTOR

Welcome to the first updated version of our DSACK magazine! Isn't it lovely? Terri and Julia spent hours planning the new layout and expanded version Thank you, ladies!

Speaking of planning, our amazing board of directors and staff came together in January for a two-day strategic planning session to map out the next five years for DSACK. Normally, two-day planning sessions are not something that most boards are jumping for joy to complete But our staff and board were brimming with energy, new ideas, and ready to problem-solve challenges. So, are you ready to hear some of the great things we plan to roll out in the next five years?

Here are just a few of the highlights

DSACK recognizes the need for improvement in our society to meet the mental health needs of people with Down syndrome. This was discussed at great length, because we see the impact on so many of our families and there just aren't enough professionals who are comfortable and experienced enough to counsel people with Down syndrome To help with this crisis, DSACK is going to add a full-time social worker to our staff. I've already been talking with the UK College of Social Work and other social workers in private practice to develop this job description

Our focus group last fall with families who have elementary-age children uncovered that they believe social opportunities are equal in importance to education opportunities. So, be on the lookout for our new Simple Socials. They are just what the name implies; fun, easy-toplan, social gatherings Some may be for all ages, some

may be for a specific age group, some will be for the whole family, others may be just for the student with Down syndrome Who knows what fun will come from this!

DSACK is going to expand our reach into more regions by establishing points of contact and exploring relationships with local professionals. We are already working to establish more of a presence in Somerset Our conference was such a huge success that we want to offer smaller workshops throughout the year These will be half-day workshops focused on topics of interest. To accomplish all of this and more, we want to increase our annual revenues to $500,000. That's a little less than double our current income DSACK is committed to continue our tradition of offering all our programs and services free to families, so the only way to realize our goals is to raise more money.

This is a five-year plan, and I've only mentioned a few of our goals We even have housing, free-standing office space, transportation, and educational options in our plan These are huge issues and not easy to solve, but we were intentional about putting them in there so we can begin to explore opportunities.

Truth be told, the future of DSACK is not in my hands, the board's hands, or the staff's hands The future of DSACK is in all of our hands I ask you to participate in events, give us your feedback, share your ideas, and support the future of DSACK. We've come so far in creating this phenomenal community of support and resources, but we can never stand still or stop growing

EMBRACING THREE SIMPLE WORDS: ‘TAKE A BOW’

By Caryn Sorge

Emma Kate came home from China in 2019 at the age of 4 years old. She spent her entire life until that point in orphanage. I remember discussing “her file” with an international adoption doctor prior to officially saying yes. I had, of course, reviewed it myself and, despite my own education and training, it was still so hard to hear this person tell me every negative and take away any hope of my child talking and meeting milestones given the lack of early intervention the first 4 years of her life.

The doctor went as far to tell me that it was likely unwise to adopt this child since I was a single mother and a physician. My heart sunk. Someone else doubted my ability and deep down inside she voiced my biggest concern, am I doing right by this child? Should I adopt a child with specials need when I am

single and have a demanding work life?

Despite this, I fortunately said yes, my very best yes This past weekend we celebrated 4 years together as a family, and I found myself sitting in the room, watching as she re-enacted every scene of “Frozen” and sang into her microphone every word to “Let It Go.” I joined in at the end and, despite my terrible contribution to the duet, she looked at me and told me to “take a bow.”

“Take a bow.” Over the past two to three months, it has become a favorite new phrase for her I will often hear her remind herself to “take a bow” when she is proud of herself for doing something. The first time I heard her say it was after her grand performance in the "Nutcracker." Her ballet class danced as water sprites and at the end of their scene each child ran off stage. Emma Kate was the last in line, and before exiting the stage she stopped and took the biggest bow you have ever seen such a tiny girl take. The crowd erupted in applause despite the proper etiquette of not clapping until the end of the show. And backstage she told me, “mama I take a bow, they clapped for me.” And since then, I have continued to hear her say “take a bow,” often to herself.

Whether it is writing her name, jumping into the pool, counting to 10, or reading one of her short phrase books, she reminds herself to take a bow. Sometimes it is just the phrase, like a mantra of sorts, and sometimes it is followed by a graceful bow.

And as she told me to take a bow, despite my terrible rendition, all the emotions came flooding back of the past four years of what this brave, sassy girl has overcome and the incredible human she has become despite the odds stacked against her. Three simple words, take a bow.

What a perfect example of how we should live our lives Live life like no one is watching and even if they are watching then take a bow and give yourself credit for the awesome things that you do, no

matter how small they may seem. I am envious of my beautiful daughter who is able to live life with no reservations and truly celebrate herself for all that she accomplishes on a given day and I hope that she never loses that spirit of self-love. I am thankful for this daily reminder and I hope to follow her lead and remind others to “take a bow.”

in their very first picture together, is a physician and single mom. She and Emma Kate, now 8, live in Lexington.

"

...give yourself credit for the awesome things that you do, no matter how small they may seem."

Caryn Sorge, with Emma Kate

DSACK Road Trip

Potty training. Medicaid waivers. Alzheimer’s disease.

Challenging behaviors

These were just a few of the topics covered during DSACK’s first-ever educational conference, held in February at the Griffin Gate Marriott Hotel in Lexington The conference drew nearly 100 family members, teachers, speakers and exhibitors to learn and share insights about the joys and challenges of Down syndrome

The keynote speaker was Rachel Schwartz, a consultant and trainer who has worked internationally to create and supervise programs for individuals with disabilities across the lifespan She presented “Moving from Behavioral Management to Behavioral Change,” focusing on approaching behavioral difficulties through a compassionate lens – and embedding joy and respect in the process. Other speakers included:

Lina Patel, associate professor of Child and Adolescent Psychiatry at the University of Colorado School of Medicine, who spoke on potty training. She’s the author of the popular book, “Potty Time for Kids with Down Syndrome: Lose the Diapers, Not Your Patience ”

"“I loved the conference! I gained new understanding and insights from the presenters, especially in the area of behavior. One class even helped me understand the brain better, which leads to a better understanding of behavior and how to help the child. I loved connecting with old friends and making new ones. And I loved all the information provided at the booths for services in our area. I absolutely loved hearing the 5minute presentations made by some of the older friends who took a communications class! I hope my son will have the opportunity to do that one day. Can you see...I loved it all! It enlightened, encouraged and lifted me up! Can't wait for the next one!”

-Jennie Jenkins

Christy Bryce, director of the Kentucky Academic and Behavioral Response to Intervention at the University of Louisville’s Center for Instructional and Behavioral Research. She talked about coregulation strategies for students who demonstrate challenging behaviors

Rachael Jones, who works in the field of intellectual and developmental disabilities for New Vista in Lexington, explained all things Medicaid Waivers

Carolyn Wheeler, of the University of Kentucky’s Human Development Institute, spoke about guardianship.

Ashley Meier Barlow, director of education for the National Down Syndrome Congress. She talked

about behavior intervention plans in IEPs.

Caitlin Fiorillo, pediatric otolaryngologist at the University of Kentucky, discussed ENT issues in children with Down syndrome.

Traci Brewer, DSACK executive director, and Jean Bryant, DSACK education coordinator, presented “Best Practices for Educating Students with Down Syndrome.”

Frederick Schmitt, professor of Neurology at the University of Kentucky who holds an appointment with the Sanders-Brown Center on Aging. He talked about Alzheimer’s disease and Down syndrome research

REGRESSION

Disorder affecting small but growing number of adolescents, young adults

By Terri McLean

For most of her young life, Rebecca, who has Down syndrome, had a bubbly personality that endeared her to everyone. She made friends easily and spent time with them as often as she could. She was also very independent and exhibited proficiency in many daily living skills

But once she finished high school, Rebecca suddenly became withdrawn and preferred being alone. She also no longer picked out her own clothes or took pride in her appearance She even developed repetitive, ritualistic behaviors.

Rebecca – not a real person – is an example of someone experiencing regression, sometimes called Down syndrome regression disorder or Down syndrome disintegrative disorder. Regression is the unusual loss of previously acquired developmental skills. It can occur quickly or over weeks to months

Though relatively rare, regression is receiving increased attention in the Down syndrome community. Recently, the National Institute of Health announced funding for a study that will investigate the disorder affecting a small but growing percentage of adolescents and young adults with Down syndrome, according to a Global Down Syndrome Foundation press release The study will investigate potential causes and look at promising therapeutic approaches. (Continued on page 10)

Ac g y est Group-USA* (DSMIG-USA), a group of health professionals that promote the health care and wellness of individuals with Down syndrome across the lifespan, it is common for people with Down syndrome to experience some of the behaviors listed below. But if you have concerns or notice these behaviors for an extended period, contact your medical professional.

Social withdrawal from friends, family

Loss of language or diminished language - decreased speaking, loss of certain words, sentence structure changes, “baby talk,” speaking in a whisper)

Loss of previously acquired developmental milestones or abilities

Loss of independence in activities or need for significant assistance - can no longer toilet independently, feed self, dress self, or bathe self

Development of autism-like features that were not previously present (onset over weeks, not chronic) –decreased eye contact, repeating what other people say or repeating lines from movies/television, decreased showing of empathy or emotions toward others, anger or frustration, repetitive hand or body movements, lack of interest in others

Changes in motor activity – stiffness, slow movements, freezing, tics and/or extra movement that are not purposeful

Changes in eating patterns (e.g., not wanting to eat or extreme slowness with eating)

Insomnia and difficulty sleeping

Compulsive and/or obsessive behaviors not previously present

Facial grimacing

Bizarre thought content or experiences (e.g., hallucinations or altered awareness)

Inappropriate mood (e g , crying for no reason)

Aggressiveness toward self or others

Increased self-talk

Center for Intellectual and Developmental Disabilities in Cincinnati.

It’s also important to note that people with regression often express these symptoms in less than three months’ time, instead of gradually. If you’re loved one is experiencing any of these symptoms, evaluation by an expert is recommended, DSMIG says.

“Individuals and families are encouraged to create a baseline and update this yearly or as best fits the needs. A baseline is created to be able to capture one's current physical, mental and emotional health By creating a baseline one can better distinguish the amount of time and areas in which changes occur. This can lead to a well-informed conversation with your healthcare practitioner,” said Christy Gregg, program manager at the Timothy Freeman, MD, Center for Intellectual and Developmental Disabilities.

Causes of regression

There are several things that might cause regression: a medical condition, such as obstructive sleep apnea and hypothyroidism; a psychiatric/psychological condition, such as depression, anxiety and autism spectrum disorder; and a neurological condition, such as seizures, stroke and mitochondrial disease.

Within the psychiatric/psychological realm lies stress, which might be brought on by a variety of “triggers.” According to the Massachusetts General Down Syndrome Program, these may include death of a loved one or pet, siblings moving out of the family home, moving to a new home, puberty, and changes in school or work. Importantly, no two cases of regression are alike

the Timothy Freeman,

Finding the likely cause of regression in a person with Down syndrome is extremely important because the therapies that can be offered vary widely.

Are there tests available?

Because there are many potential causes of regression in people with Down syndrome, the DSMIGUSA recommends a broad work-up of tests based on an individual’s symptoms. Testing may (but not always) include blood work, an MRI or CT scan, an EEG, a sleep study, a spinal tap, and sometimes genetic or metabolic testing. Again, testing should be based on an individual’s symptoms and determining the most likely cause or regression.

What about treatments?

There is no singular treatment for people with regression. However, once a cause is identified, doctors can work together to come up with the best treatment options available.

*Regression in Persons with Down Syndrome: Current Consensus Update for Families; primary member author: Jonathan Santoro, M D

Could it be Alzheimer’s disease?

Often, families are told that their loved one with Down syndrome and regression has “early onset Alzheimer’s Disease.” For a person younger than 40 years old, this is very rare. Other causes should be ruled out prior to an Alzheimer’s disease diagnosis.

DSMIG-USA

"Regression can present in a variety of ways so one presentation is not representative of all patient experiences, although there are common patterns we see. Parents and caregivers should look for a loss of skills, social withdrawal, changes in speech including volume, and slow movements,” said Lauren Wang, MD, medical director of

MD,

NEW CHECKLIST HELPS CAREGIVERS REVIEW MENTAL, PHYSICAL, EMOTIONAL HEALTH FACTORS

A new behavioral checklist associated with the Global Down Syndrome Foundation’s Medical Care Guidelines for Adults with Down Syndrome is now available. Here are some highlights.

According to the Global Medical Care Guidelines for Adults with Down Syndrome, adults should undergo a psychosocial assessment each year Here is a chart outlining the three basic areas of psychosocial assessment and the changes associated with those areas of functioning that may prompt a caregiver to make a special appointment with a medical or behavioral professional, such as a doctor of psychologist familiar with adults with Down syndrome. The three basic areas of psychosocial assessment and examples of things to notice are:

Behavioral factors

Take notice of changes in:

Self-talk

“Groove” behaviors (tendency toward sameness or repetition)

Personality

Ability to focus or pay attention

Activity Level

Social motivation or engagement

Mood and/or temperament

Functional-Adaptive Factors

Take notice of changes in:

Social skills

Communication skills

Activities of daily living, including bathing, dressing, eating, toileting

Sleep patterns/sleep hygiene

Strengths and weaknesses

Psychosocial Factors

Take notice of changes in

Family/friends/support staff

Key relationships

Housing arrangement

School/occupation/vocation

Community involvement

Common medical conditions that may look like psychiatric and behavioral symptoms in adults with Down syndrome and should be checked are:

Sleep apnea

Gastrointestinal

Thyroid disease

Hearing impairment

Vision impairment

Urinary tract infection

Menstrual pain

Sinus and respiratory infections

Constipation

Dental pain

Seizures

Difficulty swallowing

Atlantoaxial instability or spinal cord injury

Other pain – headaches, joint stiffness, skin condition

At Home on the Range: An Archer Who Inspires, Encourages

By Terri McLean

At first, when John Henson asked his parents, Mary and Stuart, if he could join his middle school archery team, they were not inclined to say yes. But when John, who has Down syndrome, planted a kiss on his mother’s cheek and said, “I really want to do this,” they decided to at least check it out.

“That was very persuasive,” Mary said, with a smile. “I called the coach and we talked about it. We talked about the fact that he hadn’t really done archery before, that it is a competitive team … and then with some of the challenges with having Down syndrome in terms of low muscle tone and issues like that. But she was very interested in having him be part of the team ”

That was four years ago. Today. John, 15, and a freshman at Richmond Model Laboratory School, is not only part of his school’s highly successful archery team, he is a respected and valued member. “I had the privilege of teaching John how to shoot a bow on his very first day of practice,” said former teammate Leah Smith. “It has been beyond inspiring to watch John fall in love with archery and defy all odds stacked against him.”

“His joy of shooting is super uplifting and contagious,”

said Coach Michelle Smith. “It is very difficult for an archer to be upset with their score of 47 when they see John ecstatic with a score of 14 points. His spirit reminds me that the main goal as a coach is to ensure that the archers are having fun.”

John first became interested in archery after trying it at a summer 4-H camp He joined the middle school team as a sixth-grader and, with approval from schoolbased archery’s governing body, participated with the assistance of a coach. As a seventh-grader, he was able to compete in five tournaments, again with the assistance of a coach.

JohnHenson,15,hasbeenparticipatingonhisschools'archeryteamssincesixthgrade

He also began taking private lessons during his seventhgrade year to receive more individual attention When he returned to the team in eighth grade, he was able to shoot all his arrows without assistance in the two-minute timespan allowed at tournaments

“The coaches were shocked by his improvement,” read a Courage Award nomination letter sent to the National Archery in the Schools Program. “John has overcome the disabilities due to Down syndrome, which include low muscle tone, lack of hand coordination, poor eyesight, lack of focus, and obsessiveness in arranging arrows that are contrary to the characteristics needed to be successful in archery,” the nomination letter continued

Mom Mary said it has been especially amazing to watch his progress in a sport that is so physically challenging. “A lot of effort goes into the upper body, shooting 40 arrows in a tournament.”

“We love so many things about archery, to tell you the truth,” she added. “I do think it’s helped with focus and discipline But one of the things I’ve loved most about it is the ability to be part of a school team. … The positive energy of people with good character who see individuals for who they are and celebrate what anybody can do is fantastic.”

“Even the coaches on the other teams respond to John,” Dad Stuart said. “Last year, the other coaches gave him an award because they saw how much he was enjoying the sport.”

The Hensons give a lot of credit for John’s success to his coaches. “We have so much admiration for those coaches as individuals because we know how hard they’re working to support every student on the team. So that spirit of inclusiveness is not just for John ”

John, himself, loves everything about being on his school’s archery team, but especially “I love being with my friends and the coaches,” he said.

According to the National Archery in the Schools Program, archery teaches students more than how to hit a target. Students learn “focus, self-control, discipline, patience, and the life lessons required to be successful in the classroom and in life.”

Supporting Positive Behavior

The DSACK Lending Library is full of wonderful resources for parents/caregivers, grandparents, teachers, and self-advocates. This issue, we’re featuring “Supporting Positive Behavior in Children and Teens with Down Syndrome – The Respond but Don’t React Method” by Dr. David S. Stein, a pediatric psychologist.

Behavior challenges are common in people with Down syndrome. Some 30 percent of children with Down syndrome have issues that are significant enough to be diagnosed by a psychologist or other health care professional. Even more have challenges that might not require a professional’s help but still can cause problems at home and school

What’s more, when left untreated, behavior issues in children with Down syndrome often become behavior issues in adults with Down syndrome

The good news, according to Dr. David S. Stein in his important book, is that with the right interventions things usually do get better. “In other words, it may take some time and effort, but I very rarely find that problem behaviors are ‘unfixable,’” he writes.

In a highly readable and engaging style, Stein starts by helping readers understand how the brain works for people with DS While every individual is different, there are some common brain differences that are important to note. For example, they tend to be

stronger visual learners than verbal learners. He also looks at learning and memory, language, executive function, social functioning, and motivation

Dr. Stein then looks at how the world around us is a “mismatch” for their particular brain profile and how that mismatch can lead to behavior problems. He says that there are many behavior issues that are common in individuals with Down syndrome; however, because each individual is unique there are less common behaviors as well.

Importantly, Dr Stein points out that while we often view negative behavior from any child as willful or intentional, all behavior has a purpose: It is a form of communication Behavior is a “ means of expression when we have no other tools left in our skill set.”

Lastly, he writes about how to help people with Down syndrome do their best behaviorally, using the “respond but don’t react method” referenced in the title. In summary, he maintains that “reactive strategies” should not be the first option. Whenever possible, he writes, it’s best to try to prevent the behavior “That’s how we know we really understand what the individual with Down syndrome is trying to communicate with that behavior. These discipline and ‘reactive’ strategies are really only short-term tools They may work great when a new behavior pops up, but we should always be trying to figure out what is causing that behavior and trying to prevent it from happening in the first place.”

EMILY INVESTIGATES friendship

In this issue, we again turn the tables on our Administrative Assistant Emily Wright, talking about a topic near and dear to her: friendship. Specifically, we asked her what she thought makes a good friend. Here is a summary of what she had to say.

A good friend is:

Someone who is always there to encourage, motivate and inspire you. “We need to help our friends and family to look toward their greatness.”

Someone who is loyal. “A good friend is willing to be

trustworthy and is always there for them no matter what Especially when someone is alone that is going through tough times, that we have the point of view that we need to help them through those tough times.”

Someone who is kind and respectful. “We should never hurt their feelings on purpose. We should never put our friends down ”

Someone who is fun to be around. “Friends laugh and have a good time together.”

Someone who is a good role

model. “It’s important to demonstrate what a good friend is and be involved in their life.”

Someone who is there to listen and make you feel better when you cry. “You should be a comforting arm to lean on.” Someone you can always be yourself around. “Be accepting of who you really are ”

Emily also emphasized that being a good friend is important whether you have Down syndrome or not. “It’s the same for everyone,” she said. “If you have good friends, you are going to be a lot happier in life ”