You Can Never Be too Prepared – by Chelsey Klenke, DSAGSL Summer Intern

Down Syndrome Association of Greater St. Louis hosted an emergency preparedness meeting for individuals with disabilities on April 15th.  We learned it is important to have a plan in place to know what needs to be done in the event of an emergency.  Going through practice drills and having conversations on what to do before an emergency takes place is key.

Here are some tips on how to prepare for emergencies:
-Have conversations with family members frequently about what should be done in emergency situations

-Create an emergency kit that includes items such as clothes, hygiene supplies, food, etc., for every member in your family including pets

-Have a plan on where to get information about further warnings

-Decide on a meeting place for your family members should you have to evacuate

-Look at Missouri Department of Health and Senior Services on 3 steps to prepare of an emergency

To find more tips on emergency preparedness, click here.

Step Up for Down Syndrome 2014 – this Sunday!

Letter from Jeremie Ballinger, Executive Director

Dear Friends:

This letter reaches you as we’re gearing up for the biggest day in the St. Louis Down syndrome community.  Step Up for Down Syndrome is just around the corner on June 8 at Forest Park!

If you haven’t been to SUDS…well, why not?  Our volunteers and staff have worked hard over the years to make our Step Up walk a wonderful experience for everyone involved.  We also have a couple new surprises planned this year that you’ve never seen at SUDS before!

Why Step Up this year, or any year, you ask?  It’s pretty simple. This walk is responsible for nearly half of the support DSAGSL counts on every year.  In other words:

-  Because of this walk, we welcome dozens of new families to our organization every year with information, baskets, events and a supporting community that cares.

-   Because of this walk, we’ve trained over 100 teachers this year and are planning to take our training to several new communities in 2014.  We’re also going to educate more doctors, nurses and other medical staff than we ever have.
-  Because of this walk, self-advocates will learn to ride a bike for the first time – and at a younger age than we’ve ever offered.  They’ll play sports. They’ll learn healthy habits and behaviors. They’ll lobby more than ever for laws that benefit them.
- And because of this walk, you’ll see info in this newsletter about new programming for toddlers, teens and adults at our office this summer and fall.  Our vision has always been to be the most comprehensive resource for individuals with Down syndrome. It’s finally happening thanks to you walking with us!

The other vitally important reason to attend SUDS is that this walk is the largest awareness event our city has for children and adults with Down syndrome.  It’s our best chance to show St. Louis that individuals with Down syndrome are loving, talented, kind-hearted people who change every person fortunate enough to cross their path.  This comes as no surprise to all of the advocates, parents, siblings and friends who read this newsletter.  But not everyone gets it.  SUDS is our chance to make that statement in a big way.

Hope to see you there!

Transition Programs and Employment Opportunities – by Liz Hickey, DSAGSL Summer Intern

Finding a job can be one of the most important foundations for a quality life and having a job can improve one’s happiness and well-being. There are many resources that exist to assist those with disabilities to receive a job that is a perfect fit. The St. Louis Arc has employment services that assist people with disabilities search for a job that is a good fit. These services provide initial and on-going coaching, maintenance coaching and works with the employees and their supervisors to ensure successful job placements. The employment counselors work one-on-one to discuss the person’s individual career goals. The counselor will also help the individual test out different jobs at the worksites to experience whether or not that position is a good fit for one’s skills, abilities and interests. After being hired, the employment counselor will continue to ensure that the job is a good fit. He or she will provide strategies that will ensure that the individual is learning while doing the job correctly. Once the individual can do the job independently, the job coach will gradually reduce their involvement. Usually for a full-time employee, job coaching is around 3-6 weeks. However, even after placement and training, the job coach will continue to make sure everything is running smoothly and address any concerns of the supervisors. This is in place to make sure everyone is receiving the support that they need.

To receive these services from the St. Louis Arc, the individual must qualify for vocational rehabilitation services from the Missouri Division of Vocational Rehabilitation and live within the Greater St. Louis Metropolitan area. If you are interested in these services, you can contact your Vocational Rehabilitation Counselor and notify them that you are interested in receiving employment services. You will then be notified by a St. Louis Arc employment counselor as soon as your referral is activated.

Another resource from the St. Louis Arc is the program Teens in Motion. This is a program that allows participants to explore interests in different job areas, volunteer at certain organizations, attend different presentations, and form relationships. This is a great program that allows an individual to form skills that will last a lifetime.

Lastly, the DSAGSL has the Toastmasters Word Masters Club. This is a group that helps improve public speaking skills, increase confidence, and improve professional skills.

All of these programs are great resources for those who are seeking employment and need assistance doing so; whether that is improving public speaking skills, building confidence, or forming relationships.

Our Problem Solver – by Darrell and Dianne Trower

Receiving the News…
Darrell and Diane each shared their first feelings:
Darrell: We found out Kaitlyn had Down syndrome the day she was born. At that time I was just excited to have a healthy baby girl and was more concerned about my wife and her emotions.  Besides, I felt it was important to take care of the baby first.  Down syndrome was something to worry about later.  When confirmation came a few days later, I/we got serious about learning about Trisomy 21 and taking the steps needed for Kaitlyn’s future.  My wife was Kaitlyn’s champion then and continues to be so.  While I was working, she was calling and getting a case worker, enrolling in First Steps (an early intervention program), buying books, and finding a great pediatrician.

Dianne:  Kaitlyn was my third child so the experience was not new to me.  She did not cry much at first, and I kept asking, “Is she ok?”  Darrell would say, “She is great, really great.”  I did not get to hold her very long, and her brothers did not get to come in to the delivery room as planned.  They whisked her away and seemed concerned.  Now I know they were checking her heart and everything else because they were pretty sure Kaitlyn had Down syndrome. When the diagnosis came, I cried a lot.  I was just not ready to receive the news especially since everyone at delivery had told me all was fine.  Kaitlyn was exactly what I prayed for; a healthy baby girl, a girl with blond hair and blue eyes like her dad.  After that first night, life just moved on much like the poem, ‘Welcome To Holland.’ (read it here)

How We Make a Difference…
We make a difference for Kaitlyn by making sure she is actively engaged in doing what she loves to do.  She loves to be involved in dance, acting, singing in Variety Clubs Chorus and Tae Kwon Do.  Dianne is still her champion in the school system by making sure she is in the right vocational program that meets Kaitlyn’s skill set, personality, and challenges her to grow.

Together, we are active in the community of people with disabilities.  We facilitate and run a group for adults with Down syndrome called High 5 People With Disabilities.  The group participates in the community volunteering and completing service projects around St Louis. We are also involved with the Catch 22 Miracle League and Variety The Children’s Charity of St. Louis.

About Our Kaitlyn…
Kaitlyn will generally try to do anything.  She has an incredible positive attitude and is generally a happy person.  She loves people and feeds off of their support for her.  Kaitlyn is special in that she does not seek to be in the spotlight, but she is she is not afraid of being in it. She is great at problem solving.

Dianne shares about dropping Kaitlyn off in kindergarten:
“When she was in Kindergarten I would drop her off at the curb of the school like everyone else.  I would wait to see her walk in.  She was so sure of herself.  The first day I dropped her was the third day of school, she wheeled her back pack to the door, opened the door but the heavy door closed before she could walk in.  I got nervous.  I thought I was going to park and run up and help her out,” writes Dianne. “Nope, she opened the door tossed her backpack in first and jumped in before it closed.  I was totally amazed.  The other moms were looking for me like ‘Where is her mom?’  But, I thought if she could figure out how to get into school with that heavy door as an obstacle, she would work out other obstacles.”

What We Want to Share…
We think the most important thing when raising any child with disabilities is that you treat them like you would any other child.  Hold the same expectations for them to be behaved, mannerly, work as hard as they are capable, and not allow the disability to be an excuse, but instead be their advocate to allow them to take part in opportunities.  Seek out opportunities in their typically developing peer groups.

Do not continue to baby them when they are no longer a baby.  Love, love, love them.  There is nothing WRONG with them.  They are just differently abled.  Help them find their gifts and talents, because everyone has them.  We are all different.  We are inspired by Kaitlyn every day.  She has taught us so much about being a parent.  Lastly, falling down and making mistakes makes you stronger.  It is ok to fall down.  It is ok to make mistakes.

Megan Layton Receives Christian Pueschel Memorial Citizen Award

Megan received the following message from the National Down Syndrome Congress:

“It’s our honor to inform you that the Board of Directors at the NDSC would like to award you our 2014 Christian Pueschel Memorial Citizen Award. In your many roles, as an employee, a volunteer, and advocate and an athlete, you have emodied the NDSC’s ‘We’re More Alike than Different’ message.”


Senate Holds Hearing Honoring Ethan Saylor

**A message from the NDSC

Senate Holds Hearing Honoring Ethan Saylor:
“Law Enforcement Responses to Disabled Americans: Promising Approaches to Protecting Public Safety”

Hearing Before the Senate Judiciary Subcommittee on the Constitution, Civil Rights, and Human Rights 

Patti Saylor, mother of Ethan Saylor, who was tragically killed by off-duty Frederick County, Maryland police officers when he refused to leave a movie theater, testified today at a Senate Judiciary Committee hearing convened by Senator Dick Durbin (D. Ill).  Also testifying was Sgt. A.D. Paul of the Plano Texas Police Department, who heads the Department’s comprehensive training program for police officers and other first responders using the Memphis CIT model. Sgt. Paul uses family members, advocacy organizations and people with disabilities in his training. Both Sgt. Paul and Mrs. Saylor presented at the 2013 NDSC National Convention in Denver.
Mrs. Saylor talked about how Ethan idolized police officers and considered them his friends. She felt that developing relationships between law enforcement and people with disabilities is crucially important.
NDSC thanks Senator Durbin and ranking minority member Senator Ted Cruz (R.TX) for bringing attention to this important issue.

We also want to recognize the community members who attended today’s hearing. Senator Durbin noted a larger room was required for the number of people in attendance, highlighting the significance of this subject and need for national attention to this matter.

You can view the entire hearing, and read testimony transcripts by clicking here.

The Extra Chromosome Gift – By Vavena Wildhaber

Receiving the News…
I will never forget walking into Kohl’s that day to buy a package of socks. My cell phone rang and a tearful and apologetic nurse told me they believed our unborn son would be born with Down syndrome. I stood there, alone, clinging to a rack and weeping like I had never wept before. After what seemed like an eternity, I walked outside to my husband who was waiting in the car.

I had only ever seen my husband cry on three occasions: when he dropped to his knee to propose, the day we were married, and each time we welcomed one of our four sons. The cry that came out of him when I shared the diagnosis was from a deeper place, a place never touched before. My first vocalized thought was, “How do we find the best schools and programs for him?” My husband said, “People in this world can be so cruel.” He was fearfully anticipating the name calling and bullying.

We were not one of those lucky people who had grown up with a sibling or friend born with Down syndrome. We only knew what outdated books at the library had told us. We didn’t yet know all the joys and immense love that came with an extra chromosome, but we soon would.

Loving Luke…
A few months later, when Luke was born we knew one thing for sure…we were going to love the crap out of this little mister, just as we had done four times before with his big brothers. I spent every day of our two month NICU stay with him. Snuggling, smooching, talking to him, singing to him, breast feeding him. When he would sleep, I would look at him, not really seeing his brothers.  I didn’t see Down syndrome either. I would look at my little love wondering what the rest of the world would see when they looked at him.

The only thing I would change about the last three years would be the fearful tears I cried after receiving Luke’s diagnosis because three joy filled years later, look at him  and I see the perfect combination of himself, his brothers, his parents and his Down syndrome. I wouldn’t change a thing. He is a sweet, smart, ornery little man that works hard at meeting his milestones. He is so full of pride when he does, has a wonderful sense of humor and loves to make his brothers laugh.  He also has this amazing way of making everyone he meets feel like a rock star!

What I Want to Share…
I’ve learned that as a parent of a child with Down syndrome, we all handle the diagnosis differently. In no particular order, there will be mixed feelings and that all of those feelings are okay. Sometimes we are sad, sometimes we are mad, but mostly…there are far more times we are GLAD! Luke has taught us all how to slow down and enjoy the little things, how to dream bigger, fight harder, and be better humans. I thank God daily, sometimes hourly, for blessing our family with an extra chromosome.

Mom to Nicole – By Michelle Bowen

Receiving the news…
The moment Nicole was placed on my stomach after her birth, I knew. I was fortunate enough to have known a few children with Down syndrome, and I just saw it on her face. When I look back and think about it, I wasn’t surprised or sad. My husband took a lot longer to come around. I think Nicole was three before he could talk about it. They confirmed the diagnosis three days later. Our doctors were so nice, and I was so lucky not to have a bad experience.

Why I Spread Down Syndrome Awareness…
I feel it is important to spread awareness because there are so many people that have never met someone with Down syndrome. They only know what they have heard and have not experienced it. I am a hairstylist, and I educate people on a daily basis. I love it. I could talk about Nicole all day long. I always say the only stupid question is the one you don’t ask while continuing to believe the wrong information.  Every day I hear people respond, “I didn’t know that” when it comes to Down syndrome.

About My Nicole…
My favorite part of Nicole is her laugh and her smile. She makes me smile and laugh every day. She can be so silly but also so loving. I love hearing “I love you, Mom” all day long. She is so stubborn and hard headed, and I know that is going to help her achieve whatever she puts her mind to.

Nicole is also an awesome dancer. She has been taking dance for eight years, and she loves it. At her recital a few years ago, I watched from the audience and beamed with pride. When she was on stage performing no one could tell she was different, because she was just as skilled as her friends.  I loved that, and it was a very proud moment.

If I Had One Thing to Share…
Some thing I want parents just finding out about their sweet baby to know is even though things seem like they will never be “normal”  and Down syndrome will always be a factor…that is not true.  They are just your daughter/son, and their Down syndrome doesn’t matter.  I cried once thinking of all the things that Nicole would not be able to do, but she has proved me wrong and does so much more.  Today, she is a typical hormonal teenager who has crushes on boys, loves to get dressed up, loves to shop and loves to dance and sing! She loves the things she CAN do, and so do I.

Brother – By Janet Warakomski

My little brother David.  Born the week before my first birthday.  Born with Down syndrome.  We grew up together, he and I.  Sharing our birthdays each year; our birthday cake with candles at both ends; taking turns opening our gifts.  Playing together in our little pool; running and giggling in the sun; hitting a whiffle ball; sitting and drinking sodas; in our tiny backyard.  Watching TV together in the evening; singing the theme songs of our favorite shows.  David taught me the important things.  To touch the water faucet to check the water temperature, instead of burning my fingers in too hot water.  That fishing is good, and it is fun to catch a fish, but it’s also just as much fun to sit eat a sandwich from home.  To go to bed and rest when you are sick, so you will get well sooner.  To sing joyfully and with all of your heart.  To pray when you are worried, and that everything would be all right.

Our Mom died on a nearly-spring day in March, and David plunged into a grief so heavy that there was no help for him.  He was in the hospital on his 49th birthday.  In May of that year, near Mother’s Day, David’s kidneys began to fail.  Dad and I rushed to his side, and stayed with him.  There was my sweet little brother, so ill.  But he was glad we were there, saying “My sister” and “My Pop” and smiling.  Then came a stream of people to say goodbye.  My sister who hurried back home from a trip, 3 precious aunts, a beloved cousin who had rushed from work, all of the morning nurses as they finished their shift, all of the evening nurses as they came on duty, even the cook from his group home.

His funeral service was beautiful.  The little church was filled with loved ones; all of his family, old and new friends, long-time neighbors, his childhood friend and roommate, his girlfriend from the Workshop.  So many people.  We sang his favorite songs, “Jesus Loves Me” and “Bringing in the Sheaves”.  A much-needed tree was planted in his honor at his Workshop, to shade the people working outside.  A gazebo was erected in his name at his Group Home, and was specially designed as a quiet place for the residents to relax.

The doctors and specialists had advised my parents to “put him away” (as it was called in the 50s).  They told my parents that would be a burden to them, to me and to any future children they may have.  How wrong they were.  David touched so many hearts, changed so many lives in many ways.  No.  He was not a burden.  He was a treasure.