Valentine’s Day Feature: Dollar Dance for DSA!

In honor of Valentine’s Day, we are featuring a story from an awesome couple! For many couples, their wedding day is one of the most important events of their lives. Family and friends from everywhere gather together to celebrate the occasion, and shower the newlyweds with gifts.

Kimberly and Neil Sanders did things differently and gave a gift to others on their wedding day in November 2017. The couple held a “dollar dance,” where guests donated a dollar to dance with the Bride or Groom. They raised $400, and the money was donated to the Down Syndrome Association!

The dollar dance was an effort to support participants of DSA’s Ready 2 Work program, including Kimberly’s cousin Aaron,who has Down syndrome. Kimberly posted on her Facebook page about the fundraising: 

“FOUR HUNDRED DOLLARS is how much our amazing friends and family donated to the Ready 2 Work program with the Down Syndrome Association of Greater St. Louis at our wedding! Thank you to all who donated to help my best bud and his friends find meaningful jobs in the St. Louis Area. It means so much to us! If anyone would like more information on how to hire these awesome self-advocates please let me know!”

We would like to thank this amazing couple for their contribution to DSA, and wish them a happy first Valentine’s Day as newlyweds!

 

 

 

 

 

Here’s How You Can Support House Bill 1658!

HOUSE BILL 1658- February 6th, 2018

On Tuesday, DSAGSL Executive Directer Erin Suelmann, traveled to Jefferson City with Advocacy Committee member and parent, Pat Alster, to testify in support of House Bill No. 1658, introduced by Rep. Chuck Basye.

If passed, this bill will expand insurance coverage for vital therapies to any child with a physical or developmental disability in Missouri. Health insurance providers would not be able to deny coverage for therapies designated necessary by a health provider. These therapies will include, but are not limited to, therapeutic care, habilitative or rehabilitative care, and applied behavior analysis. You can read the entire bill and track its progress on the Missouri House Website.

Erin stated, “This would be a huge win for the Down syndrome community. All of our children benefit from early intervention and therapies throughout their early years, but many can not access the number of hours that is necessary due to lack of insurance coverage and high costs. The expansion of coverage for speech and behavioral therapies would be a game changer for our community.”

Other issues we are currently tracking involve changes to guardianship, inclusive employment, and of course, the Missouri state budget.

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The DSAGSL is expanding our legislative advocacy efforts, and would love to have you involved.  To join our monthly Advocacy Committee call, contact Erin@dsagsl.org 

If you are a Self-Advocate that would like to learn more about current legislation and advocacy, there will be an Steps to Independence Advocacy Class on Tuesday, March 6th from 9am-1pm at the DSAGSL office. Lunch is provided! 

You are also welcome to join us in Jefferson City on March 13th for Disability Rights Legislative Day!

Please e-mail Andi@dsagsl.org if you’d like to RSVP for the class, and/or if you’d like to go attend Disability Rights Legislative Day in Jefferson City, MO.

 

 

 

 

WELCOME SPRING 2018 INTERNS!

We are excited to welcome our new interns this semester! Here’s a little more information about the ladies:

 

Lexie

My name is Lexie Smith and I am a senior at UMSL. I’m graduating this December with a Bachelor’s degree in Communication. I joined the DSAGSL family because it aligns with a lot of my core values. Being able to undertake work that you know gives back to the community is something to be proud of everyday. I plan on taking the skills I learn here to hopefully keep working in non-profit organizations after I graduate.

Fun fact: When I’m not in school, my internship, or working at my aunt’s bridal boutique, I enjoy reading, going to the gym, and watching Netflix!

 

Quinisha

Hi, my name is Quinisha Jackson-Wright, and I am a senior at UMSL with a major in Communication. I graduate in May 2018 (so excited!). I chose to join DSAGSL because I enjoy doing work that has a purpose, and I love meeting people from all backgrounds. After graduating, I would like to continue working in social media and communications in the non-profit sector.

 

Mallory

My name is Mallory Mason, I am a student enrolled at St. Louis Community College Meramec, and my major is Social Work. I decided to intern with DSAGSL because I currently nanny an 8 year old who has autism, and I want to work with individuals with disabilities as well as their families. Interning with DSAGSL will give me more knowledge and experience to support families, and individuals with Down syndrome.

 

Zoë

My name is Zoë Wallis and I attend the University of Missouri-St. Louis. I am a senior, majoring in Communication with a minor in Gender Studies. I chose DSAGSL because I am passionate about social justice and equality. Every single person in this world has something to offer and I am here to help ensure everyone’s voices are heard!

 

Celebrate Down Syndrome Awareness Month with the DSAGSL

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The Down Syndrome Association of Greater St. Louis wants you to join our celebration!

Individuals with Down syndrome and the many wonderful gifts they bring into the world are a big cause for celebration. During Down Syndrome Awareness Month we get to dedicate the whole month of October to fully shining a light on those individuals. We will celebrate the abilities of those with Down syndrome through spreading awareness, and promoting advocacy and inclusion throughout the community.

For those of us who know and love an individual with Down syndrome, we get the chance to celebrate them and be an advocate for them every day. But, throughout October we have the opportunity to extend the celebration and advocacy of Down syndrome to others by promoting awareness and helping them to see the amazing abilities those with Down syndrome possess. By celebrating abilities, rather than disabilities, we can foster inclusion, understanding, and opportunities for individuals with Down syndrome.

We strive to be a constant advocate and promote advocacy and awareness of those with Down syndrome and in October we step up our efforts to increase this awareness. Throughout October, we ask that you join us in this opportunity to really make others aware of the wonderful abilities those with Down syndrome have and the amazing accomplishments they achieve. Visit our Down Syndrome Awareness Month webpage or www.Facebook.com/dsagsl to find out how you can celebrate abilities this October.

Down Syndrome Awareness Month – an October Celebration

The Down Syndrome Association of Greater St. Louis wants you to join our celebration!

Individuals with Down syndrome and the many wonderful gifts they bring into the world are a big cause for celebration. During Down Syndrome Awareness Month we get to dedicate the whole month of October to fully shining a light on those individuals. We will celebrate the abilities of those with Down syndrome through spreading awareness, and promoting advocacy and inclusion throughout the community.

For those of us who know and love an individual with Down syndrome, we get the chance to celebrate them and be an advocate for them every day. But, throughout October we have the opportunity to extend the celebration and advocacy of Down syndrome to others by promoting awareness and helping them to see the amazing abilities those with Down syndrome possess. By celebrating abilities, rather than disabilities, we can foster inclusion, understanding, and opportunities for individuals with Down syndrome.

We strive to be a constant advocate and promote advocacy and awareness of those with Down syndrome and in October we step up our efforts to increase this awareness. Throughout October, we ask that you join us in this opportunity to really make others aware of the wonderful abilities those with Down syndrome have and the amazing accomplishments they achieve. Visit our Down Syndrome Awareness Month webpage or www.Facebook.com/dsagsl to find out how you can celebrate abilities this October.

Scott Williams & Mozingo Music: A Perfect Match

Scott Williams began what he would describe as his dream job this week. Scott has always loved music and is a wonderful song writer and guitar player.  He has always wanted to work in place where music is a focus, so when Mozingo Music invited him to become part of their team, Scott was thrilled.

Mozingo Music is a family-owned and managed, full-service music store that has been serving the St Louis area since 1972. Scott will be working in the store by helping keep the instruments dust free, greeting customers, and helping with mailings.   Mozingo Music is so excited to have Scott on board and very much value him as a member of their staff. When asked how his first day on the job went, Scott replied, “Great!”

If you would like to learn more about our Employment Initiative or would like to hire an individual with Down syndrome, please contact us! (314) 961-2504 or andi@dsagsl.org

Crossing the Finish Line- by Dan Leonard

My name is Dan Leonard and I am 18 years old.  I wanted to tell you how excited I am about recently becoming a runner!  Earlier this year I told my mom and dad I wanted to run a marathon…and my mom said “let’s start with 1 mile and go from there”…which is what I did.  I started out running a little in my neighborhood, and then my job training teacher at Parc Provence, who is a runner, stayed after work with me 2 days a week for almost 3 months and trained me for a 5K race!  I started out with slow, baby steps, and gradually got up to the 3.1 miles, which I ran on Thanksgiving morning at the Chesterfield Turkey Trot.  I was so excited the night before the race I couldn’t sleep, and the morning of I was up and dressed before anyone else was even out of bed!  My sister Lara, job coach Joan, and cousins Jeff and Barb, who supported and motivated me during my training, all ran the race with me.  When I saw the Finish sign, I sprinted until I reached the line, holding my hands up high.  I have loved running and plan to continue to run races.  Maybe I will see you at the Run for 21 in March!!

The Relay and Run for 21 is only a few weeks away!  Join us on March 19th for a 21K, 7K, or 2.1K walk.  There’s fun to be had for everyone at the event, held in honor of World Down Syndrome Day.  Visit http://www.runfor21k.com for details.  

Charlotte’s Story

By Matt and Stacey Cooper

Adoption has always been one of our table discussions, and that is all it has been for the last 8 years– Talk. Our church has a One Less Orphan group, made of couples who have adopted before and are here to help support and encourage others who are in the process. The adopted verse for the group is James 1:27 which says: Pure and genuine religion in the sight of God the Father means caring for orphans and widows in their distress and refusing to let the world corrupt you. So our talk was becoming more of an observation.

We have 5 biological children, Blake is 18 and will be a freshman at the University of Iowa in the fall. Caleb is 16, and born at 29 weeks has a very mild form of cerebral palsy but is in a mainstream classroom and participates in band and track. Next came a two for one deal with twins Jonah and Emma who are 6 and going into first grade. The baby is Sophie and she is 3. So as you can see it really didn’t ever feel like the right season for us to adopt. Even with an already large family (by most standards today) I would look and feel someone was missing from the dinner table. And maybe I was supposed to tuck in someone else at night.

We began looking at waiting children. Just inching along. We knew from having Caleb we were called and equipped to care for a special child. I would say that I always had a heart and a love for people who have that extra chromosome. It was natural for us to be looking at children with either Down syndrome or cerebral palsy. However there are a lot of cute, sweet kids who need a family and we couldn’t agree on who, if anyone was to come to our home.

One day in our Sunday school class at church, the teacher was talking about “getting off the fence”. The fence being the safe place where we just ride the middle and not really commit to one side or the other. At the end he challenged us to get off our fence. My husband Matt and I knew what that meant in our life and we went home, reached in the  cabinet that the adoption application had been sitting in for 6 months and we jumped way off the fence. We went back to looking at the waiting children and we saw a little 4 year old girl, her advocacy name was “Charlotte” and it discussed her Down syndrome in her brief description. Matt said I think she is a Cooper. We were finally on the same page!

She is located in China and there are several guidelines that must be met in order to adopt from their country. We didn’t even know if we would qualify. Holt International (our agency) called back within days to say we met those guidelines and could adopt from China. They wanted to know if we were interested in a particular child or if we preferred to be matched with someone at the end of the process. We told them about Charlotte and said they would be happy to fax her medical chart to us. We had 48 hours to have them reviewed by doctors/pediatrician and to let them know if we would like to continue towards her. I am a nurse practitioner so the words were familiar and after all Caleb has been through I didn’t think there could be anything that would make me say no. Her 12 page file said she was abandoned and found near an industrial part of the city. Attempts were made to find her parents, but unable and she was placed in an orphanage. The report said she is nonverbal, and I read obstinate a few times. That’s laughable because apparently they have not met my three year old! It said she could walk independently and navigate stairs. She can ride a tricycle. She is fed porridge in the morning and rice for lunch and dinner occasionally with fruits or meat. And if the nannies don’t watch her carefully during meals she will swipe from others’ bowls. I would too on that diet. It said she will try to console other children if they are crying but often makes them cry more from patting their back too hard. So she is kind and hungry. Perfect for us. They had done labs on her and her CBC and TSH were within normal limits. It also said no heart defect. It’s hard to believe there isn’t a heart issue, but perhaps if it is something they missed it must be minor or she is compensating for it and getting along OK. The best part was the photo copy of her chromosomes and that third copy was just the cutest thing ever.

We said within 12 hours yes we wanted to continue and notified Holt. There were having a match meeting in a few days for another family and child and they would add us and Charlotte to the agenda. They advised me that no one else had inquired or was looking at Charlotte so while I felt strong we would be matched, there is always the possibility that would prefer her with much older children, or no children, we didn’t know.  But being part of God’s plan it all came together and we were matched. Hooray, we found the child who has been missing from our family.

She turned five while in the orphanage and we are certain it will be her last without her family. Even her birthday is an estimate because they assigned her a birth date based on physical findings when she was found. The orphanage is great and has sent us several videos of her playing and the nannies seem very attentive and loving to her. I think she will be missed. Which makes me sad in one way, we are removing her from everything she has ever known. her crib mates, her nannies, her walls of the orphanage, her language, but I also know that we are going to change her little world for the better. We are giving her a new generational legacy that would not have otherwise been available to her there. We look forward to becoming part of the DSAGSL community and advocating for Down syndrome and for orphans. I used to struggle after Caleb’s diagnosis with cerebral palsy and it took me quite a while to figure out that I was the perfect mom for him, and that he was chosen and picked just for me and even through the difficulties, God would prepare and equip me. I have had the privilege to offer those words to a few new moms who maybe recently found out their perinatal testing was abnormal. Or they are still working through the process of grief for their little one. I see Down Syndrome and any specialness in a child a blessing, but I know not everyone has arrived to that point. So I hope to be a source for moms who might need a listening ear or someone to offer an encouraging word. It’s part of being in the community!!

We just completed our home study visits and are awaiting our final report on that to send off for grant applications. While we have a child on the other side of world waiting for immigration papers and a dossier to arrive we still have the financial hurdles to jump over. The fee for the orphanage alone is $15000, plus travel and a handful of other things here and there. We would just ask our community to lift our family up in prayer that God will meet those needs just when it is the perfect time. And our faith allows us to rest and now that it will happen, because many of God’s promises say so.

Thank you for allowing us to share our story with DSAGSL and we can’t wait to have her here. I know she is going to do so many great things and impact so many people along the way. I think people with Down Syndrome just come by that naturally.  And there will be One Less Orphan!