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.  

Down Syndrome Super Star #1- Ali Gold

In honor of Down Syndrome Awareness Month, the DSAGSL is recognizing individuals or groups who have gone above and beyond for an individual with Down syndrome and/or the Down syndrome community.
My 14 year old daughter, Abby Ryan, has a friend Ali Gold, who has been an awesome friend to Abby! We met Ali at the 2014 Missouri Miss Amazing Pageant. Ali was Abby’s buddy for the pageant. We have stayed in touch with Ali since we met her at the 2014 pageant. Ali has also been Abby’s buddy in the Butterfly Dreams Pageant, and again at the 2016 Missouri Miss Amazing Pageant. Abby has enjoyed getting to know Ali and her friendship means so much to her! They have made some amazing memories together. Abby treasures her friendship, and the time that Ali has spent with Abby really means a lot to Abby and us! Ali is an amazing young lady to get to know. We are so thankful for the time that Ali has spent with Abby! Ali also started a Sparkle Effect Cheer team at her high school, Ladue High. Sparkle Effect Cheer is a team of girls of all abilities. Ali is a true friend to Abby! It has been a blessing to know her. 

-Karen Ryan, parent to Abby

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!

Social Security Disability Benefits for Your Child With Down Syndrome

The content of this article was provided by Social Security Disability Help. For any additional information or resources, their staff can be reached at help@disability-benefits-help.org

If you are a parent of a child with Down syndrome, you know that medical bills, therapists’ appointments, and other expenses add up quickly. Fortunately, there could be help available for you. The Social Security Administration (SSA) offers financial resources to people with disabilities.  

Financially Qualifying with Down Syndrome 

If you are applying for Social Security disability benefits on behalf of your child with Down syndrome, your income and assets will be evaluated by the SSA. This means that if you or your spouse makes a living wage, your child disability benefits. The SSA has an online chart that shows exactly how much your family can earn per month while still qualifying. 

Income limits are unfortunately the most common reason children with Down syndrome are denied benefits, but there is good news: Once your child is 18, the SSA will not take your income into consideration anymore, even if your child still lives at home. Many families with a child who has Down syndrome find that their child qualifies after turning 18.  

An adult with Down syndrome cannot have more than $2,000 in assets, which include cash, stocks, or life insurance. You can help support your child after he or she turns 18, but be sure that your child doesn’t save more than $2,000 without first creating an ABLE account.

Medically Qualifying with Down Syndrome

When the SSA receives your child’s application, it will compare his or her medical records to its own medical guide called the “Blue Book.” The Blue Book has hundreds of illnesses or disabilities listed, as well as what test results or records are needed for someone to medically qualify for disability benefits. The Down syndrome Blue Book listing is very straightforward for both children under age 18 and adults. It states that anyone with either Trisomy 21 or Translocation Down syndrome will medically qualify with simply a diagnosis. To prove that your child has Down syndrome to the SSA, you will need to be able to show a laboratory report of a karyotype analysis signed by a physician, or an unsigned karyotype analysis with treating physicians’ records.

How does my child qualify with Mosaic Down syndrome?

Around 2% of people with Down syndrome have Mosaic Down syndrome. The SSA’s Blue Book listing only covers non-Mosaic Down syndrome. This is because many people with Mosaic Down syndrome may not experience the same physical or cognitive limitations as people with Trisomy 21 or Translocation Down syndrome. 

Qualifying with Mosaic Down syndrome is not as straightforward, but it is still possible. You will need to show that complications due to your child’s Mosaic Down syndrome keep your child from participating in typical childhood activities if under age 18, or keep your child from working if 18 or older. 

Some Down syndrome complications that are listed in the Blue Book include:

  • Heart defects
  • Sleep apnea
  • Cognitive disabilities
  • Seizures
  • Hearing or vision loss

Because every person with Down syndrome is completely different, you should work with your physician to look over the Blue Book and determine whether or not your child could qualify. 

Starting the Application Process

You can start an application on behalf of your child online, but you will need to stop by your local SSA office to finish the process. There are multiple offices in every state. Before your appointment, be sure to review the Childhood Disability Starter Kit, or the Adult Disability Starter Kit if your child is age 18 or older. These guides will outline everything you’ll need to apply, from your household pay stubs to your child’s personal documents, like a birth certificate. You can get the process started by scheduling an appointment with the SSA. To make an appointment at your nearest office, call the SSA toll-free at 1-800- 772-1213.

Volunteers do not necessarily have the time–They just have the heart

Volunteers are the lifeblood of our organization. Without the countless individuals that regularly give their time, our programs would not be successful. We couldn’t do what we do without you!

In honor of April being National Volunteer Month, we would like to share Cammise’s wonderful, selfless experience as a volunteer for DSAGSL!  

For details on how to support DSAGSL by becoming a volunteer, please CLICK HERE

Last year’s Trivia Night was a huge success! I enjoyed working with Abeyo and Josh. We danced, mingled with participants, and put our heads together to answer some of the trivia questions.

In working to pilot the Employment Academy, this experience demonstrated that our friends with Down Syndrome had only been limited by their opportunities. The ability to see capabilities, personalities, and interests was well worth the experience and I encourage everyone to not just employ, but to become partners with an amazing group of students, so they can walk away with a huge smile and a renewed charge just as I did.

Great work, DSA! Thanks for letting me be a part of the mission.

-Cammise

Thank you, Cammise, from the bottom of our hearts!

Through the Eyes of a Self-Advocate

DSAGSL recently asked Down syndrome self-advocates and their families:

“What would you like the world to know about Down syndrome?”

We have received a lot of amazing and heartwarming entries for you to look forward to in the coming weeks!  Paula Mass was kind enough to tell us her wonderful story, and we are excited to be able to share it with our readers!

                                                                                                                                                      

      What would I like the world to know about me as a person of interest?

I did have a hard time answer this question almost an hour ago. I enjoy the simple things inmy life. I work through my hardship with having different relations with other people besides my own family. I want other people to notice me as a person. I do have Down syndrome. Down syndrome is important to me. That is who I am. I want peace in the world for Israel.  I want Israel to be a safe place to live in.  Israel should be equal on all different religious. I believe to be equal with different people’s culture, so other people can live in Israel.

 

What makes me a happy person with Down syndrome?

I like writing poetry, and I am creative person at heart. I enjoy doing art work at home that does make me smile a lot. Going to the art museum. Water parks are fun, too. Smelling flowers that do have a nice scent is very pleasant to me.  Having Happy dreams are good for me.

 

What does Down syndrome mean to Me?

I can think for myself. I do have a hard time eating with my mouth closed. I learn slower than other people. I scratch my head when it does get itchy. This does indicate that I can think better for myself.

 

      What would you like to tell people about having Down syndrome?

 

Certain Facts about my appearance: I am a short person. I do have problems with typing sometimes on a keyboard. Sometimes, I do go to fast without realizing it. I am a short person. 4 feet and 9 inches.  I am 32 years of age. That is short for a teenager.

I have small feet. My feet are short and narrow. I have small hands. My fingers are stubby and pulpy. I have a learning disability. I gather information slower than other people, like learning about anything that interests me.  I do get dry mouth easily. I define myself with having Down syndrome, and why I am the way that I am. I do have physical issues with my own body. I do worry about my health problem that does matter to me a lot. There are certain places I have a hard time traveling to getting on 2 separate planes at the airport that would be hard for me.  I never learned how to drive a car. But, I can drive my mother crazy sometimes.  I read slower than other people. I do get my tongue tied while I do speak English. I do not have a second language. French is off the table. I do have a hard time spelling simple words.

-Paula Mass, Self-Advocate