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Jumping In With Both Feet

Written by Katie VanOeveren
February 2023

 

For the second time, I jumped in the Special Olympics Polar Plunge.  I’m a Special Olympic athlete and I support my friends and my teams when I jump in the polar plunge.  I like to be involved in a lot of activities and this in one way I can make other people aware that I do Special Olympic sports and that they can help out too.

I work with my mom and dad to make entertaining videos for Facebook, trying to get everyone excited to donate on my behalf. I have a lot of fun coming up with ideas and making the videos.  I like the comments that I get. I also handed out a flyer at work, church, and other places to get people aware of the polar plunge and possibly get them to donate.

Last year, my goal was to raise $500 and I was really surprised when I raised just over $2000. This year I set my goal at $2000 and was even more surprised when everyone donated $3600 for me to jump in the cold water. That’s a really big amount.

Last year, the weather was terrible but this year the sun was shining but the water was still very cold. People ask me if I was scared to jump.  I’m not scared but I don’t like the cold water.  The energy of the crowd helps me get through jumping.

Thank you for supporting me and Special Olympics. I’m already making plans to jump again and hope you will be there to support me next year.

Making The First Call

Written by Victoria Hart
February 2023

Learning that your baby has Down syndrome is an overwhelming and emotional experience for most parents. That’s why the “first call” is so important.

In January, DSAWM launched the First Call Network. This important program connects new and expectant families who have just received a Down syndrome diagnosis to trained Parent Mentors who offer compassionate support, information, and guidance. For most families, that “first call” is their introduction to the Down syndrome community. Speaking with another parent who has walked in their shoes and can answer questions about the challenges and joys that lie ahead has a huge impact on the child and family.

“Those first couple of months after a diagnosis are incredibly important – not to mention finding a strong local support system,” says Parent Mentor Ben Hughes.

Ben is one of nine DSAWM members who completed training with the MDSC National Parents First Call Center last month to become a Parent Mentor. Now, when DSAWM receives a referral either from a hospital or directly from a new family, an immediate connection can be made with parents like Ben. Parent Mentors are carefully matched with families based on several factors including geographic area, ethnicity and primary language, shared health issues, and diagnosis stories. During that family’s first year, their Parent Mentor will periodically check-in to offer support, answer questions, and send personal invitations to DSAWM programs and events.

“When we got our prenatal diagnosis, I was given a brochure by my OB, but other than that I did not have any local connections. I found an amazing community through social media, but I feel like we can do better.”

Parent Mentor Kathy Winn is right. We can do better. DSAWM’s First Call Network will help us reach more families at the time when they are most in need of support. It will also ensure that those new families are welcomed into the DSAWM community and know that we are here to support them for the journey ahead.

Our first Parent Mentor connections are already being made and we are starting to see how this program will positively impact families across West Michigan. To take that outreach one step further, we are excited to share that our First Call Network is partnering with nationally recognized nonprofit Jack’s Baskets. Through this partnership, we will be able to provide gift baskets to every new family who joins our community, as well as equip local medical providers with tools to discuss the diagnosis in an unbiased way in hopes that having a baby with Down syndrome is celebrated like any other.

Our community continues to grow year after year. DSAWM is committed to ensuring that each new family is welcomed with a congratulatory and supportive first call.

For more information about the First Call Network, visit www.dsawm.org/firstcall.

Jenna Lee: Youth Ambassador

Written by Ruth Lee
February 2023

Jenna Lee, member of the DSAWM Self-Advocacy Board, has spent the past year training as a Youth Ambassador through the Center on Youth Voice, Youth Choice. CYVYC is a nationwide resource center for youth with intellectual and/or developmental disabilities (IDD). It promotes alternatives to guardianship for youths with IDD who are entering that transitional age.

As part of her training on CYVYC’s Michigan Team, Jenna had to choose and implement a project to teach others about supported decision making, whereby those with disabilities may retain their independence through such means as trusts, Power of Attorneys, and the help of a Circle of Support.

At age 17, Jenna is beginning her transition into adulthood. She has chosen as her CYVYC project to make a year-long series of short one-minute videos, one per month, chronicling this transition and advocating for supported decision making. These videos can be found on her Facebook (Jenna Lee), on Instagram @ JennaLee792, or on YouTube by searching Jenna Lee Youth Ambassador. Check her out!

Celebrating “Designer Genes”

Written by Taya Geglio
February 2023

My name is Taya. I am currently a junior at Jenison High School. I am on both the sideline and competitive cheer team at school. I love to hang out with my family and friends in my free time. Besides Aiden, I have two other siblings.

My favorite activities to do with my brother Aiden are going swimming in our pool, playing video games, going out to the movies, or going to get food. Aiden always has the biggest smile on his face. He’s the sweetest ever. He is a senior this year at Hudsonville High School. His favorite thing is watching WWE wrestling every Friday night. 

Aiden also loves designer brands. One of his favorites is Gucci. This inspired my design a lot and is why I chose the “designer genes” phrase. Anything designer is very special to him and having a shirt made for him while incorporating things he loves was very important to me.  The design on the back is three arrows representing the three 21st chromosomes, and it represents rising up and moving forward.

To show your support for members like Aiden, order one of Taya’s t-shirts today! All shirts can be picked up at the World Down Syndrome Day Dance on Saturday, March 18 or in the DSAWM office the following week. Celebrate your “Designer Genes” by ordering a shirt HERE.

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