DSACK 2022 Spring by DSACK.org

Spring 2022

Ashton Davis

MISSION To celebrate and support people with Down syndrome and their families

1 STATEMENT and to educate ourselves and others throughout Central and Eastern Kentucky.

Keeping up with DSACK

From the Executive Director

2022

By Traci Brewer STAFF Executive Director: Traci Brewer Education Coordinator: Jean Bryant Medical and Community Outreach Coordinator: Courtney Elbert Communications Coordinator – Julia Muller Office Coordinator – Terri McLean Administrative Assistant – Emily Wright OFFICERS Chairperson: Kelley Nunnelley Lexington, KY Treasurer: Lee Ann Mullis Georgetown, KY Secretary: Anna Bullard Lexington, KY BOARD OF DIRECTORS Christopher Azbell Lexington, KY Jay Castaneda Lexington, KY K.C. Cumbermack Lexington, KY

Corey Hawes Versailles, KY

Jonathan Rouse

In This Issue From the Executive Director

Sibling’s Perspective: Hanna Ba ehner

Program Spotlight Feature: Taking the Fear Out of IEPs

Elizabeth Russell Paris, KY Margot Schenning

5 6-7

Be Inspired: The Games They Pla y

Emily Investigates

Let’s Celebrate

Versailles, KY

Matt Shorr Lexington, KY

Caryn Sorge

Lexington, KY

Jonathan Wright

Lexington, KY

Laura Yost Lexington, KY

DSACK Bylaws and financials are open for review, and the Board of Director Meetings are open to our community. Agenda items are determined well in advance.

DSACK does not endorse the opinions or views expressed by third parties or the products or services they offer. Reference to any specific commercial products, brand names, processes or services, or the use of any trade, firm, or corporation name is for the information and convenience of the public and does not constitute an endorsement. The DSACK newsletter is published quarterly by the Down Syndrome Association of Central Kentucky, 2265 Harrodsburg Road, Suite 370, Lexington, KY 40502

Stay Connected You can now RSVP for events right from our website calendar at www.dsack.org To receive our weekly email blitz, email be Terri at: dsack.org@gmail.com

Jean Bryant is our education coordinator and comes to us with 27 years of experience in the education field. Jean is leading our Learning Program, book clubs, Summer Adventure Camps, bike camp and more. Jean has a genuine love for teaching and is truly a ray of sunshine!

podcasts, without an inch of hesitation, she responded, “Let’s do it.” (By the way, did you know we’ve started a podcast?) These ladies are a wonderful addition to our already amazing team! Speaking of great things happening, are you making plans for summer yet? Make sure you read on to find out about the amazing summer opportunities DSACK is providing. We will once again host our Summer Adventure Camp for elementaryage students, AND we are adding a middle school camp this year, too! Both of these camps will be in person at our new DSACK office. The goal of both camps is to help students avoid regression in the areas of math and reading, however, students are going to have so much fun, they will never know they are

We also have a new summer college program for adults 17 and older. For three weeks in June, students will be attending classes on the BCTC Newtown campus as part of our Next Steps: Learning for Life program. Students will be able to choose what classes they want to attend in the morning, eat lunch together, and have some creative fun in the afternoon. I’m just betting there will be a dance party or two along the way! If you are new to the IEP, or Individualized Education Plan, mandated by IDEA for students with disabilities who attend public school, you definitely want to read on. Even if you are not new to this process, you are sure to pick up muchneeded information in this article researched and written by our magazine editor, Terri McLean. Many of you know that I am passionate about educating parents and caregivers about this process, as I truly believe that change will only come when advocates have the necessary knowledge to make it happen. IEPs can be intimidating until you have the knowledge. Terri does a great job giving a broad overview in this article, and if

DSACK 2022

SAVE the DATES

To join our private facebook group where you can communicate with other DSACK families, go to https://www.facebook.com/groups/82674673490/ and request to be added to the group. To “like” our official facebook page and receive updates from our association, go to https://www.facebook. com/TheDownSyndromeAssociationofCentralKentucky. dsack.org@gmail.com Follow DSACK @DSAofCentralKY on Twitter.

We have a small but mighty staff at DSACK, and we are thrilled to introduce you to two new staff members in this issue. If you haven’t already met these terrific women, you will soon. Our administrative assistant, Emily Wright, profiles them in her Emily Investigates column.

Julia Muller is our new communication coordinator. All of those amazing graphics you see in our emails and on social media are due to her creative genius. She is always ready to jump in and start the next adventure to help us connect with more and more people in our communities. When I said I wanted DSACK to start doing

Lexington, KY

CONTACT INFORMATION Down Syndrome Association of Central Kentucky 2265 Harrodsburg Road, Suite 370, Lexington, KY 40504 859-494-7809 website: www.dsack.org email: dsack.org@gmail.com

learning. What could be better!

I have so many things to tell you! There are so many fabulous things happening at DSACK! You are going to want to read every inch of this magazine to make sure you are up on all the news.

Visit our calendar on www.dsack.org to see current events, activities and educational opportunities!

MAY 21, 2022

Marriott Griffin Gate Resort

you want to take it a step farther, be sure to watch for our Parent Advocacy Lab, which is a 10week educational course on IEPs that takes place each January. You know what is super amazing? DSACK offers all the programs l’ve listed, plus a whole lot more, free to families, thanks to our amazing community partners and the fundraising efforts of our DSACK families and friends. I am so thankful to be a part of this amazing community! My heart is so full when I think that no family in Central or Eastern Kentucky ever has to walk this journey alone. Just recently a mom posted in a social media group not associated with DSACK looking for resources for her newborn baby diagnosed with Down syndrome. My phone blew up! My email blew up! My messages on social media blew up! Courtney Elbert, our outreach coordinator, had the same thing happen. It gives me chills to know that this mama was immediately connected with us. My how things have changed since my daughter was born 24 years ago! DSACK is a lifeline for so many, me included! I can’t wait to see how we keep growing!

Family Fun Day and Walk

SEPT. 10, 2022

Masterson Station Park 33

Program Spotlight

Sibling’s Perspective

Next Steps: Learning for Life Summer Adventure Camps

The Baehner triplets, from left: Hanna, Lauren and Jacob.

Counting blessings every day for sister like Lauren By Hanna Baehner People always ask me what it’s like being a triplet, and I tell them I usually forget I am one until it comes time for our birthday; three separate cakes always make for lots of leftovers! However, I never forget what it’s like to have a sister, Lauren, with Down syndrome. Through her, I have learned to view life through a different lens. I’m privileged because I get to experience unconditional love from her every day.

sports so much that they watch every game together, and she’ll start screaming at the TV, too. He’ll surprise her with her favorite drink and lay with her on the couch when she’s falling asleep. They call each other buddy, and I cannot get over how adorable it is to watch them bond.

My family has always been heavily involved in her life. My parents have always been Special Olympics coaches, my brother and I volunteer. Nothing compares to seeing her have an absolute blast with all her friends. When I moved away to University of Kentucky for college, the Lauren is a reminder hardest part was leaving her behind and giving up that life is not about my roles within the Special Olympics. However, I what you have, but was blessed to have stumbled upon DSACK and who you have. Count become a college volunteer. They give me pure joy, and I don’t think there’s ever a time where I’m not your blessings and smiling when we have College Hangout on Zoom. live life like Lauren! We all have lessons to learn from people with Down syndrome.

Growing up, we never fixed each other’s hair and never gave each other boy advice. But I never knew any different, so it didn’t bother me that we didn’t do “typical” sister things. We found other ways to spend time together. She’s my biggest supporter and desires to be like me, so much so that she started dressing like me and redoing her room exactly like mine. She comes running up to me with the biggest smile on her face every time she sees me, even if we’re in different rooms at home, and tells me I’m beautiful every single day. I’ll take her shopping with me, and she’ll go up to every stranger and introduce me as her best friend. It just melts my heart. Her smile is so contagious, it’s hard to ever be sad or mad. My brother, Jacob, won’t admit it, but he’s a big teddy bear. It’s so cool to see how different his relationship is with her. He got her into

Lauren is a reminder that life is not about what you have, but who you have. Count your blessings and live life like Lauren! Hanna Baehner, a DSACK volunteer, is a recent graduate of the University of Kentucky. The Northern Kentucky native is working on her applications for physician assistant school. She hopes to end up back at UK.

A new program and a different take on an established one are in the offing for the DSACK community this summer. And we couldn’t be more excited! First up is the Next Steps: Learning for Life program, a life skills and career readiness program for individuals with Down syndrome ages 17 and up that takes place over three weeks on the Newtown campus of Bluegrass Community and Technical College in Lexington. This innovative program, generously funded by grants from Toyota Motor Manufacturing Kentucky and US Bank Foundation, offers a variety of classes in a college setting. “We have put so much thought into this program and can’t wait to present it this summer,” said DSACK Executive Director Traci Brewer. The program takes place on Tuesdays, Wednesdays and Thursdays May 31 through June 16, 10 a.m.-3 p.m. Students will rotate classes, choosing from such topics as employment skills, personal development, etiquette,

Both the Next Steps and Summer Adventure Camps are free to students. Register on the calendar at www.dsack.org. cooking and drama/music classes. Lunch will be provided. Students will present what they have learned to parents on Saturday, June 18, at BCTC. Then, beginning July 11, DSACK is bringing back Summer Adventure Camp – only this time we’ll have one for elementary school students and one for middle school students. Both will be in-person and at the DSACK Learning Center for an “adventurous” four weeks. What is Summer Adventure Camp all about? For one thing, it’s about having fun. But, as important, it’s about helping students avoid regression during the summer when school is not in session. Studies show that summer regression is a persistent problem for students with Down syndrome, which means that the

first few months of a new school year might be spent relearning previously introduced concepts. DSACK created its Summer Adventure Camps to help combat this problem. Students in both camps will meet two times a week for four weeks with an emphasis on literacy and math skills. Instructors, led by DSACK’s Education Coordinator Jean Bryant, will teach using a holistic approach, incorporating cooking classes, physical activity, music, gardening and art. DSACK staff will review each student’s IEP and tailor curriculum to work on predetermined reading and math goals. “These camps are specifically designed to reinforce literacy and math skills in a fun and adventurous way,” Bryant said. “They’ll have so much fun that they won’t even realize they’re learning along the way.” The elementary camp, for ages 8-10, will be from 10 a.m.-noon on Mondays and Thursdays July 11-Aug. 4. The middle school camp, for ages 11-14, will be from 3-5 p.m. also on Mondays and Thursdays July 11-Aug. 4. Both camps limit class size to 10 students. As with all DSACK programs, both the Next Steps and Summer Adventure Camps are free to students. You can register for Next Steps and the Summer Adventure Camps from the calendar at

Feature Story

About IEPs: Just hearing the term IEP can strike fear in even the most seasoned parents. And it’s no

need to be prepared. “The word ‘parent’ is in the IDEA over 400

wonder. An IEP is actually a legally-binding

times. This tells us that Congress really wanted

document, and it determines the special

parents to be involved in the drafting and

education instruction, support and services a

implementation of IEP documents. So, while

child with disabilities needs to thrive in public

the various processes can be intimidating and

school.

overwhelming, it is essential that the parents

Experts will tell you, however, that there’s no

weigh in. Being knowledgeable and prepared

need to be afraid. When it comes time to help

is the first step,” said Ashley Barlow, special

develop and implement your child’s IEP, you just

education attorney in Fort Thomas, Kentucky.

First, a little background

stakeholders that not only includes teachers but also parents/caregivers. All students who receive special education services must receive an IEP.

A federal law – the Individuals with Disabilities Education Act (IDEA) – states that individuals with intellectual and developmental disabilities enrolled in public school may be eligible to receive free and customized learning plans for their education. Further, IDEA’s purpose, according to WrightsLaw, is:

Being prepared As a parent of a child with a disability, you are the child’s most important advocate. This is especially true when it comes to providing an appropriate education. After all, you are your child’s first teacher.

…to ensure that all children with disabilities have available to them a free appropriate public education Fortunately, the same law that guarantees that your that emphasizes special education and related child receives an IEP also gives you a powerful role services designed to meet their unique needs and in the process. Do prepare them for not be afraid to use further education, Parents are equal partners in the IEP process. that power, said Traci employment and They bring a unique and important perspective Brewer, executive independent living … that should be top of mind when going director of the Down [and] to ensure that the through the process and must be Syndrome Association rights of children with afforded meaningful participation. of Central Kentucky. disabilities and parents Traci Brewer | Executive Director of DSACK of such children are “Parents are equal protected … partners in the IEP process,” Brewer said. The centerpiece of “They bring a unique and important perspective the IDEA is the customized learning plan, or IEP. that should be top of mind when going through The law says IEPs are to be developed by a team of 6

The Team the process and must be afforded meaningful participation.” “It is imperative that parents advise the entire IEP team about generalization of skills from school to home and the community, progress in outside therapies and tutoring, strategies and curricula that work outside of school, medical updates, successes and struggles,” added Barlow.

The IDEA law that mandates the development of IEPs, also outlines who should have a hand in that development. According to “All About IEPs,” this includes:

r The child’s parents/caregivers. r At least one of your child’s regular education teachers.

r At least one of your child’s special education teachers or service providers.

Before an IEP meeting, it’s important to:

r A school district representative who

r Know your child’s strengths and challenges. One of the most important ways of doing this is to talk to your child. Find out how school is going. Ask what he or she likes and doesn’t like about school. The more you can find out by talking to your child, the better prepared you will be.

r Understand how Down syndrome affects your child’s ability to learn. Students with Down syndrome have a unique learning profile – they are very visual learners, for example.

r Write down any questions you might have so you don’t lose track during the meeting.

r Request copies of your child’s records, including a draft IEP for the upcoming meeting, along with any evaluation reports and/or progress monitoring data. You may need to submit the request in writing. Request the records be provided at least five days in advance of the meeting to allow enough time for you to review.

r Review the previous year’s records, making note of what worked and what did not.

r Set goals – know what you want your child to learn and be able to do by the end of the school year. Make sure your goals are specific, measurable, action-oriented and realistic.

r If necessary, plan to have someone accompany you to the IEP meeting.

is qualified to provide or supervise the special education instruction, is knowledgeable about the general education curriculum and is knowledgeable about district resources.

r An individual who can interpret the instructional implications of evaluation results.

r Others who have knowledge or expertise about your child. Is your child a member of the IEP team? Absolutely … when you decide this is appropriate. Just ask yourself whether the child will benefit from the meeting and whether the child’s input will help the team create an appropriate IEP. “Attending meetings is a great way for students to learn self-advocacy skills,” said Traci Brewer, DSACK executive director. At the age of 16, when the IEP team must be preparing for transition to life after school, the child must be invited to attend transition IEP meetings. Ask for a transition assessment to be completed and ask the school to invite transition experts to the IEP meeting. These may include representatives from the Office of Vocational Rehabilitation and/ or a community rehabilitation provider. It’s important to plan for this transition starting at least by age 16, but the team should be preparing much earlier. “The sooner, the better,” Brewer added.

CONTINUES ON PAGE 8 7

Be Inspired

Feature Story CONTINUED FROM PAGE 7

During an IEP meeting, you should expect to discuss:

r Y our child’s present levels of academic achievement and functional performance. (If this is your first IEP meeting, an evaluation will have been prepared beforehand.)

r T he measurable goals designed to meet the unique needs of a child with Down syndrome.

r A ll the special education services that are available, as well as supplementary services the school may provide.

r H ow your child’s progress will be measured and how that progress will be communicated to you.

r Y our child’s placement – where he or she will receive services. Placement in a regular classroom should be the first consideration, and don’t be afraid to insist that it is on the table. (Regular class placement, called least restrictive environment, is defined as 80 percent or more in a regular classroom.)

One of the best ways to allay the fears about IEPs is to attend DSACK’s annual Parent Advocacy Lab, a 9-week workshop that explores tools to advocate and how to use them, special education law, communications tips and organization tricks to prepare for the meeting. The next Parent Advocacy Lab will begin in January 2023.

Sources: IEP and Inclusion Tips for Parents and Teachers, All About IEPs.

Checklist for preparing for an IEP meeting By Ashley Barlow | Special Education Attorney

All too often I get a new client that brings me minutes from their IEP meeting that read like this: “School offered parent rights. Parent declined. School read draft IEP. Parent shared concerns about toileting and said child enjoyed playing with a cousin on Sunday. The IEP was accepted. No further discussion ensued.”

consuming the week of the meeting, will ensure that you marry your subjective gut feelings with objective information; collaborate with the IEP team; and keep the child at the center of the IEP discussions. Isn’t that the goal?

Here’s the problem with that: The IEP team is supposed to collaborate to develop an effective, meaningful plan with annual goals, specially designed instruction, and uniquely designed special education and related services. How could that be accomplished in the meeting described above?

 While you wait, proactively review school’s data,

In my opinion, it can’t. Each person at the IEP table should meaningfully contribute to the IEP meeting. The key to such participation lies in preparation. Didn’t your grandpa have a quote like “Preparation is the key to success”? Completing this checklist, while a bit time-

 Ask the school for a draft of the IEP, any data or information upon which they’ll rely, and a list of people to be in attendance. as well as data from home and outside sources so that you’re informed and READY.

 Review school’s draft.  Gather student work, logs, journals, videos, and all the data that you reviewed in Step 2 above.

 Share your thoughts with the rest of the IEP team to start communication off on the right foot and to save time in the meeting itself.

 Organize information you want to share in a meaningful, sequential manner.

The Games They Play: More than winning or losing

hether they’re bowling, competing on horseback, swimming, practicing taekwondo, playing baseball or playing soccer, DSACK has some pretty amazing athletes in its community. They participate in their chosen sports and recreational activities to improve physical fitness, gain greater self-confidence, make friends and, of course, to experience the excitement of competition. Take Julia Steinman, 30, an avid bowler who bowls competitively on a team and as an individual. She recently won a state Special Olympics bowling competition for her age group. Although bowling is her favorite, she also plays basketball, softball, and runs track and field through Special Olympics. “Julia’s participation in sports has been so beneficial,” said Meg Steinman, Julia’s mother. “For Julia, it is not so much about the win, but it is about doing the best you can. She continues to try to do her best, regardless of if the team (or she) is winning or losing.” A prime example of that determination is when Julia plays softball. “I have seen her strike out in softball repeatedly, but when it is her turn to bat, she will step into the batter box and try her best to get a hit,” Meg said. Seventeen-year-old Joshua Carter is another example of determination when it comes to his athletic pursuits. He participates in Dr. Kim’s Taekwondo, where he has earned a black belt. “Taekwondo demands a lot of focus and memory recall, so it is very hard. But Joshua is so proud of himself when he accomplishes a form,” said his mother, Tammy Carter. “When Joshua started taekwondo, he was too anxious to walk into a classroom. But over time his confidence has increased, and he now enters the classroom, finds his place and follows directions.” Like Julia, Joshua participates in a variety of sports. He swims and plays basketball through Special Olympics and has played

soccer through TOPSoccer. It’s difficult for him to pick a favorite, Tammy said, because he loves them all. For 14-year-old Kennedy Gibson, playing “about every sport you can think of” is her strategy, said her mother, Heather Bradley. She participates on an equestrian team, swim team (her favorite) and gymnastics team – all through Special Olympics. She has also done dance and martial arts, among other things, and has benefitted from programs offered through her local parks and recreation department, her school, the YMCA, and independent schools of dance and martial arts. Kennedy’s newest sport – competing on an equestrian team – might offer the biggest challenge, Heather said. “She isn’t comfortable riding yet. So she competed in showmanship, which is commanding the horse from the ground. The horse she used, River, is so in tune with her. It’s amazing to watch.” While their on-the-field activities provide loads of fun, it’s the off-thefield benefits that are most valuable to Julia, Joshua and Kennedy. “I cannot say enough about how sports has impacted Julia,” Meg said. “She has made friends throughout the state from the competitions they participate in. It is fun to see her greet these friends with a smile or a hug. It has been beneficial for me, as well. I have friendships that I treasure as a result of her involvement.” Joshua calls the friends he’s made his “people.” “Joshua is a very shy young man, but through sports he has become much more social and gained a sense of belonging,” Tammy said. “Kennedy is learning to trust others’ confidence in her abilities and use that encouragement to be brave and try new things,” Heather added. “She’s learned to be supportive of teammates from a genuine place of camaraderie. Most importantly, she has made authentic friendships and spends quite a bit of time practicing on her own time with her friends.”

Kennedy

Juli a

Joshua

Let’s Celebrate

In each issue of DSACK’s magazine, Administrative Assistant Emily Wright “investigates” our connection to families, friends and the community. In this issue, she talked to two new DSACK employees – Jean Bryant, our education coordinator, and Julia Forrester, our communications coordinator.

Jean Bryant Bryant and her husband, Mark, live in Harrodsburg. She has two children, Clay, 25, and Kate, 21. She is responsible for implementing all of DSACK’s educational programs, including the Learning Program, Book Club, Summer Adventure Camps and Strider Bike Camp. Jean can be reached at jeanb.dsack@gmail.com.

Q: WHAT MADE YOU INTERESTED IN WORKING FOR DSACK? A: I became interested in working at DSACK when I retired from teaching elementary school in 2019. I knew I wanted to continue working with students because that is what I enjoy doing. I receive so much joy in helping students learn. Q: WHAT ARE SOME OF THE THINGS YOU WOULD LIKE TO ACCOMPLISH AS EDUCATION COORDINATOR? A: As education coordinator, I would like accomplish programs that students are eager to participate in during the school year and in the summer. In the future I would like to be able to offer tutoring to students at DSACK. Q: YOU CAME TO DSACK AFTER 27 YEARS AS A FIRST-GRADE TEACHER. WHAT MADE YOU DECIDE TO MAKE A CAREER OUT OF HELPING CHILDREN? A: I made a career out of teaching because I have always had a love for students. I enjoy watching them learn a new skill and use the skill that they learned in their everyday life.

Joshua Carter turns 18 on April 20. Happy birthday!

Dan Jase Stivers turned 6 on February 9. Happy birthday!

Happy 11th birthday Lizzie! We love you sweet pea! Love, Mom & Dad

Happy 18th birthday Sam!

The whole world smiles with you Olivia! Happy 9th birthday!

Happy birthday Lydia, who turns 3 in June!

Julia Muller Muller is married to Jacob Muller. She has two children, Nova, 4, and Rowan, 8 months. As communications coordinator, she is responsible for all DSACK’s communications efforts, including keeping DSACK active on all social media platforms. She can be reached at julia.dsack@gmail.com

Q: WHAT MADE YOU INTERESTED IN WORKING FOR DSACK?

Happy 18th birthday to Sanjay Blevins. You are the most amazing young man. Thank you for bringing your joy and light to every obstacle you encounter. You are a special blessing, and we love you!

A: When I saw the job description for communications coordinator, I felt that DSACK could be a great fit for me and my skill set. Once I met everyone at DSACK, I knew I was definitely in the right place. I feel so lucky that I get to be creative, colorful and hopefully brighten people’s days by creating something that brings them joy or entices them to participate in some of our life-changing programming. I love that I get to do a bit of everything, whether it’s graphics for social media, videos, brochures, writing or producing podcasts. Q: WHAT ROLES DO MARKETING AND COMMUNICATION PLAY IN DSACK’S MISSION? A: DSACK offers so many great programs, and my goal is to make sure that as many people know what we have to offer, clearly show how they can become a part of DSACK and demonstrate how we can positively impact lives. The way we communicate digitally is changing constantly, so it’s important to me to ensure that DSACK evolves with how our families and future families communicate. Q: WHAT EXPERIENCE AND TALENTS DO YOU BRING TO DSACK? A: I’ve been working in communications for 10 years, and prior to that, my work was in nonprofit fundraising and advocacy. I love learning new skills, and I bring the attitude that if there’s something I don’t know how to do, I can learn.

www.dsack.org/club-21

Clay celebrated his 8th birthday in January, and he lost his first tooth in February!

Happy 14th birthday Kylie Ann McPhetridge! You are simply amazing. We are so proud of you. We love you, Dad, Mom, & Jaden.

2265 Harrodsburg Road Suite 370 Lexington, KY 40504 Return Service Requested

MISSION

To celebrate and support people with Down syndrome and their families

STATEMENT and to educate ourselves and others throughout Central and Eastern Kentucky.