Looking Back on October 2021

We had a fantastic fall! Families across Wisconsin continued to utilize DSAW Connects and free virtual programs. DSAW- Fox Cities hosted their annual Awareness Walk AND gave their office a makeover. DSAW- Green Bay is sponsoring an adaptive fitness program for self advocates. DSAW- Southeastern WI hosted fall programs in the community, and in-person programs continued at the office.

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DSAW- Fox Cities Down Syndrome Awareness Walk

We kicked off the month with the DSAW- Fox Cities 12th Annual Down Syndrome Awareness Walk! Walk Day was a blast and the chapter exceeded its fundraising goal! With the help of the community, DSAW- Fox Cities raised $130,000 this Walk season! Thank you to all of our community members who participated or supported this event! Big thank you to the volunteers as well. We couldn’t have done it without you!

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Fall Fun!

DSAW Saturday Fun Days

Our Super Saturday Group went to Lindner Pumpkin Farm for an afternoon of fall fun! The group picked pumpkins, walked the corn maze, and had a great time together!

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Creative Corner

Creative Corner made a spooky craft for the season. They used cotton balls to make cute ghosts!

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Virtual Family Night: Halloween Party

DSAW hosted a virtual Halloween Party! Attendees got to wear their Halloween costumes and enjoy spooky fun online! The costumes were amazing! Participants drew a haunted house, played Halloween Hangman, and decorated cookies.

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Family Fun Day at Lindner Pumpkin Farm

DSAW families were treated to a day at the farm! Over 100 people joined us for a fun, fall day at Lindner Pumpkin Farm. Families enjoyed the petting zoo, corn maze, Big Back Yard playground and pumpkin bowling.

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DSAW- Fox Cities Tween Club Halloween Party

DSAW- Fox Cities hosted a Tween Club Halloween Party! Staff and participants went all out with costumes and decorations! They had a fun and spooky time!

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Program Updates

DSAW- Green Bay Buddy Up Tennis

DSAW- Green Bay is helping to reduce the cost of an adaptive sports program for local families! The program is called Buddy Up Tennis. Buddy Up Tennis is a clinic consisting of professional tennis instruction and fitness conditioning. Local children and self advocates love the opportunity to pair up with a typically developing community member to learn new skills and have fun!

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Skills Training Academy

Skills Training Academy meets at DSAW’s headquarters in West Allis. It includes scheduled class instruction and hands-on application of skills. Some of the recent focus areas have been learning how to tell time, setting an alarm on a smartphone and a clock, and finding ways to stay active and have fun!

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New merch coming soon!

DSAW Work Hub

DSAW is lucky to have a stellar group of interns working at Headquarters this fall. This group splits time between instruction and doing jobs around the office. Some of the recent topics they discussed are workplace behavior, conversation skills, body language, and more! During work time, interns take inventory of various products, help with cleaning projects, and this month, they even got to model new DSAW merchandise!

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DSAW- Fox Cities Office Makeover!

Our friends in the Fox Cities spent a Sunday painting their new office! The group tackled the largest, main room and got it all done. The coat of paint makes a huge difference and the results are beautiful. Next staff looks forward to getting new flooring!

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Small Groups

DSAW Small Groups had a painting party! This fun-loving group loved the opportunity to get creative in the community.

Learn More: DSAW Small Groups

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Social Skills Group

Social Skills Group in Southeastern WI uses hands-on activities to teach participants about concepts related to relationships, behavior, and daily living skills. This group of kiddos is starting to learn about emotions and how their feelings can play into the relationships they develop!

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Thank you, DSAW Grandparents Group

Our Parent’s First Call program partners thank members of the DSAW Grandparent’s Group for their generous in-kind donations this month! Grandparents in the group dropped off baby socks, small toys, and books at the DSAW Office to be used in our new parent welcome baskets and expectant parent packs. Thank you for thinking of PFC!

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DSAW Webinar: Aging with Down Syndrome & Tips for Promoting Cognitive Brain Health at Every Age

Dr. Donna Marie Fick presented on common issues encountered during aging with Down syndrome. The webinar was a great opportunity for parents and health care professionals to get their questions about again answered. Thank you to Dr. Fick for presenting and the Marjorie Christiansen Foundation for sponsoring.

Advocacy in Action

Advocacy in Action!

Dawn and Abby at the Capitol!

DSAW advocated for the rights of people with disabilities at the Capitol earlier this month! DSAW’s Executive Director, Dawn Nuoffer, and her daughter Abby spoke directly to the members of the Assembly Committee on Health regarding Assembly Bill 539. They expressed support of the bill from DSAW and other disability organizations in the state like Wisconsin Board for People with Development Disabilities, Survival Coalition, Save IRIS, National Down Syndrome Society, Madison Area Down Syndrome Society, and more.

What is Assembly Bill 539?

Assembly Bill 539 relates to prohibiting discrimination in organ transplantation on the basis of disability. This bill clarifies that doctors, hospitals, transplant centers, and other health care providers are prohibited from denying access to necessary organ transplants solely on the basis of a qualified individual’s disability. Additionally, this bill requires that, when evaluating the likelihood of a transplant’s success, health providers consider the full range of supports available to help a person with a disability manage their post-operative care. The bill also includes a fast-track procedure for challenging discrimination to ensure that people in urgent need of an organ transplant obtain timely resolutions to their claims.

Update: Bill 539 passed both the assembly and senate unanimously! The bill now needs approval from the governor to pass.

Does this type of discrimination happen?

Although federal and state laws prohibit organ transplant discrimination, people with disabilities are often denied equal access to organ transplants because of discriminatory assumptions that their lives are of poorer quality than those of people without disabilities, in addition to misconceptions about the ability of people with disabilities to comply with post-operative care. A study by Stanford University showed that 85 percent of pediatric transplant centers consider intellectual or developmental disabilities when determining eligibility for transplants. Additionally, 71 percent of heart programs also consider disabilities as a factor.

Abby speaking to Assembly Members

Self-Advocate Spotlight: Abby

During the committee meeting, Abby Nuoffer gave a moving appeal. She spoke to her experience as a self-advocate and made sure the assembly members knew that if she needed life-saving surgery, she should have the same access to organ donation as her typically-developing peers. We are so proud of Abby’s great representation of people with Down syndrome and her willingness to use her voice to advocate for herself and others!

Looking Back on September 2021

September was WALK MONTH! All of our chapters were very busy prepping and hosting their Annual Down syndrome Awareness Walks all over the state of Wisconsin! In Southeastern WI, Fox Cities, and Madison in-person programming continues and virtual programming went on as usual across the state. Read on for more details!

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DSAW hosted 6 Awareness Walks in the month of September! These Walks raise necessary funds to help keep DSAW chapters running in every region of Wisconsin. All of our chapters thank their sponsors and volunteers as well as anyone who helped fundraise, joined a team, or showed up on Walk Day! DSAW strives to be the best-supported state in the country for people with Down syndrome and their families and we could not achieve that without the help of all of you!!

DSAW- Southeastern WI 25th Anniversary Down Syndrome Awareness Walk

DSAW- Southeastern hosted its 25th Anniversary Down Syndrome Awareness Walk and family festival at the Milwaukee County Zoo on September 26th! We had an awesome turnout and exceeded our fundraising goal of $170,000!! SNAP Poms and Bella Via Dance Troupe gave energizing performances throughout the day. There were carnival games, a rock climbing wall, raffles, and more! Tom Pipines emceed our pre-walk program and 21 Showcase. The highlight of the day was when participants with Down syndrome walked down a red carpet and were celebrated by our huge crowd of attendees. We had a record number of 21 Showcase participants- 70+! We were blown away by the support and generosity of our community! BIG thank yous to everyone who fundraised from home, virtual participants, all of our amazing corporate sponsors, and the 190 volunteers who showed up to make this day happen!

Miss our Walk? You can still donate to DSAW- Southeastern WI here!

Madison Area Down Syndrome Society 20th Anniversary Awareness Walk

MADSS kicked off Walk Season with their Awareness Walk on September 19th. They started their event with a car parade that ended at Olin Park. The Walk and family festival included music, games, raffles, and more! There was a beautiful program that announced MADSS’s accomplishments, thanked sponsors, and celebrated the top fundraising teams. Because of amazing sponsorships and community support, MADSS crushed their fundraising goal and will be able to keep making dreams come true for individuals with Down syndrome and their families in the Madison area.

Missed this Walk? You can still donate to MADSS here!

DSAW- Central Wisconsin 4th Annual Down Syndrome Awareness Walk

DSAW- Central WI held their 4th Annual Down Syndrome Awareness Walk at Marathon Park on September 25th! They had an excellent turnout and wonderful weather. The event had a huge raffle with almost 40 baskets full of goods from local businesses. The Board would like to shout-out University of Wisconsin- Stevens Point for massive student participation in this event. The UWSP Dance Team preformed and cheered on walkers as well. Participants with Down Syndrome were celebrated during the 21 Showcase and the Top 3 Fundraising Teams were awarded cash prizes. It was an incredible event!

Missed our Walk? Donate here!

DSAW- Chippewa Valley 15th Annual Down Syndrome Awareness Walk

DSAW- Chippewa Valley held their 15th Annual Down Syndrome Awareness Walk on September 26th at Irvine Park. This chapter had a hugely successful fundraising year thanks to wonderful corporate sponsorships. The family festival included live music, a catered lunch, and raffles for all. The Top Fundraising Teams were recognized during the pre-walk rally. The chapter is excited to use their extra fundraising dollars to benefit families in their community!

Missed this Walk? You can donate here!

DSAW- Green Bay 13th Annual Down Syndrome Awareness Walk

DSAW- Green Bay had their 13th Annual Awareness Walk in a new location this year- Capital Credit Union Stadium! The Walk was very well-attended and the chapter exceeded its fundraising goal! The family festival included raffles, games, and a 21 Showcase to celebrate participants with Down syndrome. Everyone had a wonderful day raising awareness and acceptance!

You can still donate here if you missed the Walk!

DSAW- La Crosse 19th Annual Down Syndrome Awareness Walk

DSAW- La Crosse celebrated Down syndrome awareness and unity at their 19th Annual Down Syndrome Awareness Walk! They created a visual display of their walk theme (unity) by having everyone in attendance wear their 2021 Walk t-shirts. The Walk was held at Myrick Park and had a great turnout. Winners were recognized during a pre-walk rally and then all participants walked along the route.

Missed this Walk? Donate here!

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DSAW- Fox Cities Update

DSAW- Fox Cities promoted their upcoming Awareness Walk on the local news! Dan, a member of DSAW- Fox Cities and a self advocate, spoke with Sam, a DSAW Staff Member, and his sister, DSAW- Fox Cities Client Services Manager Jen, about important fundraising deadlines and what to look forward to at the Walk! We are so proud of them for representing DSAW and getting the word out!

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Self-advocate Spotlight: Miranda!

With support from JQ, Miranda was able to achieve her dream of becoming a certified yoga instructor!

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DSAW Program Updates

DSAW Skills Training Academy

Skills Training Academy includes scheduled class instruction paired with hands-on application of skills. This class includes time for physical workout, along with some fun and creative activities for our participants. Some of these activities include: fall door decorations, technology trivia, hula hoop exercise, tic-tac-toe basketball, bingo, karaoke, technology memory & practice in creating events using an app. 

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Tween Club Is Back!

Tween Club is back in Southeastern WI and Fox Cities!!

This is a FREE program for children with Down syndrome and other disabilities who are under 18! Both locations host it once a month!

More Information & Sign Up

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Virtual Family Night: BINGO Party

DSAW loves hosting virtual fun for families once a month! This month’s family night was Virtual BINGO! Families had a great time getting competitive and having fun online. We are looking forward to the next one already!

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DSAW Small Groups

DSAW Small Groups are a huge success! Participants under and over 18 love the opportunity to develop friendships, meet new people, and explore their communities. This group went out to a delicious dinner together!

More Information

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Social Skills Group

Participants create their own SMART goals in DSAW Social Skills Group! This group and groups like it are perfect for individuals who are interested in goal setting, improving their communication skills, and working on social interactions!

Looking Back on August 2021

Summer is flying by at DSAW! State hosted the Annual DSAW Golf Outing. DSAW- Green Bay held a bike-along along the Fox River. DSAW- La Crosse invited local families to a huge outdoor picnic. DSAW-Sheboygan hosted their Mini Golf & Awareness Walk Fundraiser. Families from all over the state attended a virtual hula lesson and we wrapped up our summer in-person programs in Southeastern WI, Madison, and the Fox Cities. Read on for more!

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25th Annual Pip & Homer Golf Outing

On August 11th, DSAW hosted our 25th Annual Golf Outing! Unfortunately due to storms, golfers were unable to use carts on the course during the event, but all attendees received a voucher to come play another day, and many chose to walk the golf course instead. Despite the weather, we still enjoyed the usual activities: putting contests, raffles, a paddle auction, and of course great food.

DSAW is so grateful to all event staff, volunteers, and attendees for coming out and making the best of this day with us. We appreciate the generosity and flexibility of everyone! Thank you to Western Lakes for hosting us, to Pip and Homer for emceeing our event, and to our key sponsors: Erie Insurance, Alpine Plywood Corp, PCI, Cardinal Capital Management, and Sid Grinker.

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DSAW- Sheboygan Mini Golf & Walk Fundraiser

Thank you to everyone who helped make The DSAW- Sheboygan Mini Golf & Walk Fundraiser a huge success on August 28th! We were able to crush our fundraising goals and celebrate incredible individuals and families in our community. Thank you to volunteers, vendors, key sponsors, and everyone who participated!

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Green Bay Bike Along

DSAW- Green Bay hosted a bike along event along the Fox River! Local tweens and teens with Down syndrome rode bikes with their families all the way to Voyageur Park. Then the group had their family play group for the little kids! Thanks for everyone who showed up!

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DSAW- Central WI DJ Dance Party

Our Central WI chapter kicked off August with a dance party for teens and tweens. One of our awesome board members hosted the dance. What made the party really special was DJ Andrew Patterson! He is a local DJ who has Down syndrome and the events he plays for us are always the most fun:) Thanks to all who attended!

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Statewide Campground Day

DSAW- Fox Cities hosted a day of free admission to Evergreen Campground for people with disabilities and their families. The chapter extended the offer to all DSAW chapters and the event was well-attended by families from all over Wisconsin.

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Summer Skills Training Academy

Summer Skills Training Academy came to a close at the end of August. We had the best summer ever and learned so much! This program will pick back up in fall.

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DSAW Summer Work Hub

It was sad to see the DSAW Work Hub come to an end for summer. During their time together interns played games to review the major soft skills they worked on- team work, problem solving, flexibility, zones of regulation, strategies, taking initiative, positive self talk, and whole body listening! Everyone was fully aware of their goals that they made at the beginning of hub and everyone showed improvement!

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321 Fun Camp

DSAW- Fox Cities completed a 4 week long program called 321 Fun Summer Camp! Participants loved being in the new Appleton WI headquarters this summer. Camp was spent doing many fun things such as bowling, swimming and splash pads, board games, crafts, Wii sports, Just Dance, karaoke, as well as musical sessions with Expressive Therapies and yoga sessions with Be Center for Holistic Mental Health and Healing.

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Behind the scenes!

Virtual Hula Lesson

DSAW hosted a virtual hula class with Na Hale Studios! Participants had a blast learning about Polynesian culture and how each hula move represents something. The class learned a dance about going to a party - or hukilau - after a day of fishing. Tina the instructor performed the dance that was in Lilo and Stitch. Participants got to ask her questions too!

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DSAW Webinar Series Presents: Inclusive Education: Establishing a Shared Understanding of Why, What and How.

DSAW hosted a webinar called Inclusive Education: Establishing a Shared Understanding of Why, What and How. The content was geared towards educators and professionals in the education field. The presenter was Michelle Lockwood. She is the Director of Positive Behavior Support Services for the New Jersey Coalition for Inclusive Education. She covered what inclusive education looks like in practice and what it takes to make inclusive education happen. Participants had time to ask questions at the end.

Missed this webinar? We have recordings of our webinars for you to access anytime. Please click the link to explore our Webinar Library or to access the recording of Inclusive Education: Establishing a Shared Understanding of Why, What and How.

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DSAW Small Groups

DSAW Small Groups helped these two reconnect after going separate ways following high school! The group had beach days, practiced ordering different food and drinks in the community, went shopping and had a great summer!

Looking Back on July 2021

DSAW is having such a fun summer! DSAW- Southeastern WI continues to run Skills Training Academy from our office. Headquarters opened up to host our first in-person event in over a year- the DSAW Family BBQ! State also partnered with HEAR to host a virtual ASL lesson. Read on for more!

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Green Bay Playgroup

DSAW- Green Bay is back to hosting monthly play groups for families with little ones who have Down syndrome. This month families met up at Titletown District Playground for some fun in the sun.

Our next playgroup is August 14

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Summer Skills Training Academy

Skills Training Academy is up and running at DSAW Headquarters in West Allis, WI!

Highlight: Participants entertained each other with an epic karaoke party! This group is full of stars who have a talent for singing, dancing, and putting on a great show!

Watch video here!

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DSAW Family BBQ

DSAW headquarters opened up to host the first in-person program in over a year for the DSAW Family BBQ! Hot Off The Grill preformed awesome live music. We had yummy BBQ food, crafts, contests, and yard games. Thank you to the Self Advocate Committee for hosting the craft table and thank you to our volunteers who helped make the fun happen! Already looking forward to next year!

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Virtual ASL Lesson from HEAR

Thank you so much to Ruth from HEAR for hosting a virtual ASL lesson with DSAW! Our participants loved learning the alphabet and requesting to learn the signs for their favorite words. We even learned how to sign “Milwaukee Bucks!”

Check out our Virtual Hula Class on August 18

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DSAW Connects Highlight: Young Leaders

Participants in the Virtual Young Leaders class talked about friendship! They discussed what it takes to be a good friend and what to look for in friendships.
The group also participated in a multi-day discussion about different types of people you might meet while at your job: managers and different types of co-workers and customers. The group is working on learning how to manage those different types of relationships.

Looking Back on June 2021

In-person programming is back on around the state! During June, chapters across the state resumed hosting family meet-ups and playdates. Classes began in Southeastern WI, Fox Cities, and MADSS. All DSAW Awareness Walks are launched and open for registration. Read on for more info!

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Awareness Walk Virtual Fun

The WINNER of our first virtual walk contest, winning a $100 gift card to a business of her choice, was Elizabeth Weber!! Elizabeth signed up for our Statewide Awareness Walk at the Zoo and was randomly chosen out of the several hundred people that have signed up for our Walks!

Stay tuned for next month's virtual challenge!

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Rhett’s Believers

DSAW partnered with Versiti to host a blood drive at DSAW HQ in honor of a child in our community who is undergoing chemo treatments. Thanks to everyone who donated! Becuase of you, up to 84 local patients’ lives can be prolonged and/or saved!

If you’d like to donate blood in honor of Rhett, make an appointment at any Versiti donor center and enter the code: “Rhett” into the NOTES section when they make the appointment.

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Green Bay Therapy Playgroup

DSAW- Green Bay is back to hosting monthly play groups for families with little ones who have Down syndrome. June was extra special because they were joined by occupational therapists from Bellin Health. Therapists were able to provide instruction and advice to participating parents free of charge.

Our next playgroup is July 10th!

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Summer Skills Training Academy

Skills Training Academy is up and running at DSAW Headquarters in West Allis, WI!

Participants are enjoying making new friends, learning about life skills and wellness, and spending plenty of time outside making the most of the summer weather!

Highlight: Workout Scavenger Hunt! Participants were able to make their workout extra fun buy searching for clues around DSAW! The clues told them what exercise to do next. Check out our Instagram Story Highlight “DSAW” for videos of this program @dsawisconsin

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DSAW Small Groups

Our small group outings have been a huge success! We are so happy to make connections and friendships among the younger participants in our community. These groups focus on getting out in the local area, expanding interests, practicing life skills, and having fun!

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Family Farm Day at Cozy Nook Farm

Farmer Tom and Brittany guided DSAW families around Cozy Nook Farm! Participants learned about dairy cows, how a farm operates, and what the cows eat. Also, participants got to feed the cows and goats and go on a hayride to see the alfalfa field where the food for the cows is grown.

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Corny Jokes & Popcorn Night

Knock, knock! Who’s there?

Families and self advocates had a great time at DSAW’s Virtual Family Night this month. Participants came prepared with joke books and we took turns cracking each other up. We watched a few funny videos too. Participants also discussed popcorn recipes and enjoyed their snack from home.

Looking Back on May 2021

DSAW had a very exciting May! Our summer programming registration launched statewide and includes in-person options in select locations. We hosted a virtual Name That Tune Party for friends all over the state and our Self Advocate Committee hosted a pop-up program. WSG Futsal Club hosted a charity soccer game on our behalf and we got to go cheer on the team. We are excited to plan even more safe programming for you as restrictions are lifted! Read on for all the details!

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The DSAW News

Sam and Lilly share what's been going on at DSAW during May.

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Thank you WSG Futsal Club & PCI!

DSAW- Southeastern WI thanks WSG Futsal Club and PCI for hosting a very successful and fun charity soccer game on May 7! We loved watching the team play and cheering you on! Also, a big thank you to everyone who attended the game and participated in the raffles. We are so lucky to have such a dedicated community around us.

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Introducing the DSAW Self-Advocate Program Committee

DSAW has a new group of self-advocates who meet up and share their ideas and experiences so DSAW can become even better! The group hosted a virtual Pop-Up class on May 10th. They introduced the DSAW Self Advocate Committee and defined what they will do. Each self-advocate presented on a topic important to them and shared it with the rest of the group. Here is what they shared:
Tilly: "The Power of Poetry”
Hannah: “How Others Express Their Feelings”
Kathryn: “Social Media Platforms”
Katya: “Your Voice is Your Superpower”
Sam: “Friendships & How to Be a Good Friend”

We can’t wait to see what this awesome group does next!

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DSAW Webinar: Transition Workshop

DSAW hosted a webinar for parents across Wisconsin that covered the transition that occurs when an individual with Down syndrome turns 18. It was well attended and thank you to everyone who logged on for the amazing questions. Your participation generated great conversation.

You can access the webinar recording here.

Upcoming Webinar: Advocating for Inclusive Education: Supporting Parents & Families

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Check out our next Virtual Family Night: DSAW Corny Joke & Popcorn Night

DSAW Virtual Family Night: Name That Tune Party

Our Zoom Name That Tune Party was a hit! Families from around the state had a great time guessing song titles, lyrics, and albums and competing for bragging rights:) Our playlist featured songs old and new from a variety of genres.

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Milwaukee Milkmen Game Day

DSAW was the featured non-profit at the May 29th Milwaukee Milkmen baseball game! Thank you to the Milkmen and everyone who bought tickets! Jen and Dan K from DSAW- Fox Cities threw out the first pitch!

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Free Program Fun

Stream Team

Stream Team was excited about meeting on Cinco de Mayo so they had a party to celebrate the holiday! The party included a few rounds of Kahoot trivia about Cinco de Mayo.

Mom’s Book Club

DSAW Mom’s Book Club is for moms and female caregivers who want to get together once a month to meet, talk about a positive/inspiring books, and share support. In May, DSAW Mom’s Book Club read “The Midnight Library” by Matt Haig.

Looking Back on April 2021

Happy spring! A few of our chapters enjoyed the nice weather with outdoor hiking programs. DSAW hosted several virtual events including a virtual open mic night and a webinar series. Read on to see what DSAW got up to around the state this month!

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Volunteer Appreciation

April 18-24 was National Volunteer Week! DSAW is lucky to work with an incredible group of volunteers who truly put their hearts and souls into helping individuals with disabilities and their families.

Thank you, DSAW Volunteers, for the effort, energy, and time you give to our organization. We absolutely could not do it without you!

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DSAW- Green Bay Summer Therapy Scholarships Launch

This summer, DSAW- Green Bay is launching a new scholarship program to support families in paying for out-of-pocket summer therapy programs for their loved one with Down syndrome.

Please read the requirements and fill out the form to apply. You will be contacted by DSAW to confirm your scholarship.

More Information & Apply

Thank you to the Green Bay Packers Foundation for sponsoring this program!

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DSAW Webinar Series: Respond Don’t React

DSAW hosted a webinar series during the month of April. The series was called “Respond Don’t React” and was led by DSAW’s Education & Projects Specialist, Chris Gagne. Chris walked participants through Dr. David Stein's book “Supporting Positive Behavior in Children and Teens with Down Syndrome.” Participants were able to get their specific child care questions answered and the group discussed real-life scenarios.

DSAW keeps recordings of previous webinars for you to access anytime. Check out this webinar recording here.

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Virtual Open Mic Night

DSAW hosts monthly virtual family nights and April’s was an Open Mic Night! This program attracted many young self-advocates from all over the state and even a few friends from other states. Participants sang karaoke songs, danced, and cheered each other on.

Check out the next virtual family night here!

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DSAW Family Nature Hike at Retzer Nature Center

DSAW families in Southeastern WI got together on a rainy Saturday afternoon for a guided hike at Retzer Nature Center! A naturalist from the nature center talked to participants about the changes that happen in the environment during springtime. We went on a hike in the woods and participants were able to fill out nature “Bingo” cards to keep track of all the cool things they found. Highlights were seeing a bird’s nest, a turkey vulture, and finding a lot of creepy crawly bugs!

Check out our next family event here!

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DSAW- Central WI Active Moms

This group, from our Central WI chapter, hosts occasional outings (outside and socially distanced) for moms who have children with disabilities in our community.

On April 9th, the group hiked the Ice Age Trail: Emmons Creek Segment. They braved the cold and rain and had a blast getting outside and spending time together.

More outings coming soon!

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Mom’s Virtual Coffee Chat

DSAW- Central WI hosted a virtual coffee date for moms and caregivers in the Central WI area. Moms logged on to Zoom and chatted about the pandemic, working from home while raising kids, and their plans once things start opening up. It was such a nice way to connect with friends we haven’t seen in a while.

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Self Advocate Spotlight: Tim

Congratulations to Tim for starting his new job at MOD Pizza! Tim worked with DSAW Family Services to achieve his employment goals. Go, Tim! Your DSAW family is so happy for you!

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What’s Going on in DSAW Connects?

Creative Corner

This virtual class uses everyday objects around the house to create art projects. This month participants recycled cardboard to make cute frogs.

Travel The Globe

Throughout April in Travel the Globe we finished up our tour of the US and headed out of the country. After learning about a ton of states, we have now traveled to Canada, France, and are currently in Italy.

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Free Program Fun

Stream Team

Stream Team explored some new games this month. The group played a storytelling game, found a new “would you rather” question generator online, and discovered Zoom “Guess Who.”

Mom’s Book Club

DSAW Mom’s Book Club is for moms and female caregivers who want to get together once a month to meet, talk about a positive/inspiring books, and share support. In April, DSAW Mom’s Book Club read “The Great Alone” by Kristin Hannah.

Looking Back on March 2021

We celebrate our friends with Down syndrome all year long, but March is especially important to our community because of World Down Syndrome Day on 3/21! The DSAW Chapters spent the month prepping for various World Down Syndrome Day celebrations, both online and in-person, while our regular DSAW Connects programming continued. DSAW also recognized our important supporters virtually throughout the month.

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Celebrating World Down Syndrome Day… Virtually

Like all holidays, celebrations, and events, WDSD looked different this year. DSAW adapted our programming to virtual formats to make celebrating World Down Syndrome Day possible for everyone in our community. All you needed was an internet connection to get in on the 3/21 fun!

Celebrating on Social Media

DSAW invited our friends and followers online to post pictures on social media of their loved ones with Down syndrome. We encouraged people to use the hashtag #EXTRAordinary321 to highlight how their loved one exceeds expectations. DSAW also created its own Facebook frame so people could raise awareness about WDSD online.

DSAW’s Digital WDSD Party

Ahead of World Down Syndrome Day, DSAW and MADSS families logged on to Zoom for a Virtual WDSD Party! Participants played a Kahoot and answered some DS trivia. The event ended with a virtual dance party!

Check out our next Virtual Family Night on April 15th!

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World Down Syndrome Day Celebrations Across the State

DSAW- Central WI

DSAW- Central WI had an amazing time celebrating World Down Syndrome Day with GiGi's Playhouse Wausau on 3/21! DJ Andrew Patterson was taking song requests and he brought a bubble machine. Participants danced, enjoyed the nice weather, and ate delicious snacks and treats.

Thank you to all who attended and to the volunteers who made sure this event ran smoothly and safely! Thank you to ACE Kids Club for providing crafts and activities, Rachel Roelse and her family for sharing cupcakes and a WDSD cake, Texas Roadhouse Wausau, and Andrew Patterson/ DJ Buffet for his DJ services!

DSAW- Fox Cities

DSAW- Fox Cities had a GORGEOUS day for their WDSD Drive-Thru Event. The chapter leaders had a wonderful time seeing familiar faces and absolutely loved meeting some new families and welcoming them to the DSAW- FC family!

DSAW- Green Bay

DSAW- Green Bay enjoyed a very sunny World Down Syndrome Day on 3/21! The chapter had perfect weather to distribute goodie bags full of local treats outside. Thank you to the following businesses for contributing items for the goodie bags:

Poppin' Z's Gourmet Popcorn

Batter up bake shop

Village Roasters LLC

De Pere Cinema

Happy Joe's Pizza & Ice Cream - Green Bay

And thank you Faith Lutheran Church Green Bay for letting us use your parking lot!

DSAW- La Crosse

La Crosse families had a blast at the DSAW- La Crosse WDSD Outdoor Party. Participants gathered outside for a picnic lunch and to pick up their one-of-a-kind World Down Syndrome Day posters. The whole community enjoyed seeing friends after these long months indoors. Already looking forward to WDSD 2022!

DSAW- Southeastern WI

DSAW- Southeastern WI had an EXTRAordinary time at their World Down Syndrome Day Drive-Thru & Celebration on 3/21! Chapter leaders and participants were so happy to gather in a socially distant way and celebrate their friends and loved ones with Down syndrome.

Thank you to all the families that stopped by and to our wonderful volunteers who helped the event run smoothly and safely.

DSAW- Sheboygan

Thank you to everyone who signed up to receive a World Down Syndrome Day goodie bag from DSAW- Sheboygan! We hope you had an EXTRAordinary day celebrating your loved ones with Down syndrome. We had a blast packaging up these swag bags and giving them to our community.

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30th Anniversary Extrava-Gala Awards

As part of our World Down Syndrome Day celebration, DSAW recognized the awardees that we intended to celebrate at our 30th Anniversary Extrava-Gala! Throughout the month, we sent out emails with information about our wonderful partners who helped to shape DSAW into what we are today. You can watch the awardee videos and learn more about them below!

30th Anniversary Extrava-Gala Awardees

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DSAW Webinar:

On March 24th, DSAW hosted a webinar that featured Dr. David Stein called “Supporting Positive Behavior in Children and Teens with Down Syndrome: The respond but don’t react method.” Dr. David Stein is the founder of New England Neurodevelopment, LLC, a pediatric psychology practice in the greater Boston area of Massachusetts (www.NENeurodevelopment.com). He is also the author of the book Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond, but Don't React Method (Woodbine House, 2016).

This webinar covered the basic neuroscience of Down syndrome and how it informs effective behavior management. It presented practical strategies for use in the home and school settings from childhood through transition to adulthood. Watch the recording of the webinar here.

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Health & Wellness Pop Up Class

Towards the end of March, DSAW hosted a health & wellness pop-up class that featured two guest speakers: a licensed dietician & a personal trainer. The first half of the class focused on being active! Participants swapped tips for exercising and being healthy right at home.

The second half of class was about eating healthy. The class learned about eating foods that are a variety of colors, learned about healthy cooking, and got a few recipes. The class also visually saw how much sugar is in one bottle of Coke. Everyone was shocked!

If you’d like to sign up for Pop Up classes, 30 additional units will be added to your plan. These are fun classes and events that will “pop up” during January- June. You can pick and choose which ones you’d like to attend! DSAW Instructors will turn to YOU for class ideas and actives! Questions about Pop Up Classes? Contact Mary, Adult Services Manager.

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DSAW Connects During March

Read on to see what our virtual classes have been up to!

Sports Talk

In our Sports Talk class, instructors work with self-advocates to help them co- lead the class and lesson plan! A participant, Sam, gave a powerpoint presentation about his favorite athletes and talked about his job experience working with the Shorewood High School Athletic Department girls/boys basketball teams!

Exploring Music & Movies

The class celebrated International Women's Day by exploring women in music & film. They looked at the history of women in the industry and explored some examples. The class ended with a video of the "Top 10 Girl Power Songs!”

Exploring Food

This class’s March theme was “Healthy Snacks.” Participants chatted about all their favorite healthy snacks! We learned what makes a snack healthy vs. unhealthy. Then we made a favorite healthy, no-bake snack: Energy Balls! Together we measured, rolled the balls, and washed dishes. Such a blast!

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Stream Team

Stream Team continues to enjoy chatting and playing activities over Zoom. This month we celebrated St. Patrick’s Day with a festive round of trivia.

DSAW Zoom Zumba

Zoom Zumba is a fun and FREE hour of fitness hosted by DSAW and MADSS. The class is guided by a certified Zumba instructor. Participants have enjoyed requesting songs and rockin’ out to the upbeat music.

Estate Planning For Families With Individuals Who Have Special Needs

Brandon Prinsen and Katelyn Doyle, attorneys at Johns, Flaherty, and Collins, SC presented on estate planning for families who have individuals with special needs on February 4th during a DSAW webinar co-hosted by DSAW- La Crosse and Thrivent Financial. We are summarizing the presentation here. Please access the recording of the webinar for further information.

Why is estate planning so important for families who have individuals with special needs?

• A gift or inheritance can unintentionally affect an individual's need-based benefits.

  • Need-based Benefits include: Social Security, Disability, Supplemental Security Income (SSI), and Medicaid

    • These benefits cover shelter, food, clothes, services, and health care expenses (Medicaid).

  • 2021 Limits for Need-based Benefits

    • An individual receiving benefits can have a maximum of $794 per month in income and $2,000 total in available resources.

    • An individual receiving benefits must meet the legal definition of disability.

What makes up my "estate"?

• Bank Accounts

• Business Interests

• Car

• House

• Investment Accounts

• Life Insurance Proceeds

• Personal Property

• Real Estate and Land

• Stocks & Bonds

Estate Planning Documents: Will VS. Trusts

• Will

  • A will is a document prepared by an attorney.

  • The will designates an executor or personal representative.

    • In the event of your death, this person manages your estate and makes sure all assets passed through the will are dispersed to the beneficiaries you designated.

  • Expenses of administration

    • Your will states that the executor should use any assets or funds that pass through the will to cover any expenses that occur from administering your estate.

    • Things like funeral costs, debt, legal fees, etc.

  • Beneficiaries

    • You name your beneficiaries in your will.

    • Beneficiaries are the people who receive your assets.

      • children, relatives, charities, etc.

  • Guardianship

    • Your will designates a guardian for minors or individuals with disabilities.

      • The guardian takes care of the individual after you are deceased and is responsible for them.

    • A court rules on the guardianship decision later on, but the designation in the will informs that ruling.

    • It is recommended to designate a primary and alternate guardian within the will.

  • Testamentary Trust

    • A bank account that is outlined in your will (optional)

    • Declares that all assets in your will go into this trust and a trustee takes over to distribute assets to minors and individuals with disabilities according to the terms you set in the will and trust agreement

    • Requires declaring a guardian for children or individuals with disabilities

    • Any asset that passes through a will is subject to probate.

      • Probate is a process where the court gets involved to administer an estate.

      • There are fees and costs associated with probating an estate that you may want to avoid by setting up a different type of trust.

Revocable Living Trust

• A bank account that is set up with an attorney who drafts a trust agreement

• Alternative to setting up a Testamentary Trust

• Settlers are the people who set up the trust agreement.

  • Settlers have full control over the trust. They can change the terms at any time.

• Trustees are the people that manage the trust during their lifetime.

  • Upon their death or disability, there is a successor trustee that takes on responsibilities of managing the trust and making distributions to the beneficiaries named in the trust agreement.

  • Can be a family member, friend, trust company, or advisor

Supplemental Needs or Special Needs Trusts

• Why would you set up a Special/ Supplementary Needs Trust?

  • If all of your assets go to your child who has special needs, they could become disqualified from receiving SSI.

  • They would then have to use their inheritance to pay for things otherwise covered by SSI (food, shelter, clothing).

• How would I set up a Special/Supplementary Needs Trust?

  • You can establish a Supplemental/Special Needs Trust through a Testamentary Trust set up in your will or a Revocable Living Trust.

  • Recommended: Revocable Trust with Supplemental Needs provisions

The Different Kinds of Special/ Supplementary Needs Trusts

• First-Party Special Needs Trust

  • A trust established by an individual with a disability with the help of a guardian in the event the parents pass away without setting one up for the individual.

  • The individual can use funds in the trust to supplement what they receive from public benefits.

    • Community support, recreation, housekeeping services, education, health expenses not covered by Medicaid, etc.

  • Provisions in the trust restrict the funds from being used for things SSI covers.

    • food, shelter, and clothing

    • Payback provision

      • Whatever balance remains in the account upon the individual's death has to be used to pay back the state or federal government for Medicaid and SSI the individual received during their lifetime.

Third-Party Special Needs/ Supplemental Needs Trust

• Attorneys work with parents of an individual with special needs to establish a Special Needs/ Supplemental Needs Trust that will be funded by parents' assets.

• The child can then use the funds to cover what SSI doesn't cover.

• No payback provision

  • If the individual passes away, the assets go to other beneficiaries named by parents in their will.

• Pooled Special Needs Trusts

  • Type of Special Needs Trust through WisPACT, Inc.

  • Pooled investment and management trust

  • Typically used by people who don't have any trustees to manage assets and are looking for an organization or trust company to make distributions to their individual with special needs.

  • WisPACT, Inc. is responsible for making the distributions to the individual.

Funding Sources For a Supplemental/ Special Needs Trust

• Bank Accounts

• Investment Accounts

• Life Insurance Policies

  • Most common

  • Designate the trust as the beneficiary of your life insurance policy

• House

  • Real Estate passes into the trust, the trustee manages the house

  • The trust owns the house, not the individual with disabilities, so benefits would not be impacted.

• Lawsuit Settlement

ABLE Accounts

• A planning tool used in conjunction with Special/Supplemental Needs Trusts

• Tax advantage savings account created for individuals with disabilities

• The beneficiary is the account owner.

• Any income earned in this account is not taxed.

• Can hold up to $100,000 without affecting SSI benefits

  • Anything above that will cause SSI to terminate

  • The individual can reapply when funds are spent down

• Can be used to supplement SSI and Medicaid benefits and to pay for qualified disability expenses.

  • More flexible than what special needs trusts can be used for

  • Defined as "any expense related to the designated beneficiary as a result of living a life with disabilities"

    • Education, employment training, support, healthcare expenses, financial management services, and other services to improve their quality of life

Looking Back on February 2021

During February, DSAW hosted virtual events, webinars, and the usual DSAW Connects classes. We also prepped for next month’s World Down Syndrome Day events!

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Notable Woman in Human Resources

Our Director of Operations & HR Abbey Nicholas was named a Notable Woman in Human Resources by BizTimes Media! She has worked for DSAW for 6 years, and in that time, she has helped transform our organization.
Read more about the incredible work she has done with DSAW in the article below!

Read More

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World Down Syndrome Day T-Shirt Fundraiser

T-Shirt Design (front)

The 2021 World Down Syndrome Day T-Shirt Fundraiser was one of the many ways DSAW plans to celebrate WDSD this year. Adorable t-shirts featuring our “putting the EXTRA in EXTRAordinary” design went up for sale on the DSAW website in preparation for 3/21. Anyone could purchase the t-shirts and a portion of the proceeds from their order benefitted the DSAW Chapter of their choice! At the end of the fundraiser, DSAW sold well over 400 t-shirts!

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DSAW Pop-Up Classes

DSAW Pop-Ups are fun classes and events that “pop up” during January- June. You can pick and choose which ones you’d like to attend!

Questions about Pop Up Classes? Contact Mary, Adult Services Manager.

Boundaries: Internet & Social Safety

This pop-up class discussed the definition of social boundaries, including when and how we use boundaries in our everyday lives. The session covered healthy relationships and keeping ourselves safe and unsafe in public and private places including the internet.

Game Night

Participants played fun ice-breaker games, answered jeopardy questions, and ended the night with a guessing game. A great opportunity to strengthen friendships among group participants!

Karaoke and Dance Party

This pop-up was a fun-filled hour with song and dance! The class sang along to karaoke-style songs including, Jonas Brothers, Disney favorites, and Justin Timberlake. There were dance breaks in between the songs that featured the classes’ favorite artists, Pharell Williams, Lady Gaga, and Luke Bryan.

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DSAW Webinar: Estate Planning For Families With Individuals Who Have Special Needs

DSAW- La Crosse and Thrivent Financial hosted a statewide webinar on February 4th. Brian Prinsen and Katelyn Doyle, attorneys at Johns, Flaherty and Collins, SC, presented an overview of need-based benefits and covered the use of Special Needs Trusts and ABLE Accounts. The webinar concluded with a Q&A session during which attendees had their individual questions addressed by the presenters. The webinar was very well-attended by parents and caregivers around the state.

Access Recording 

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A Virtual Valentine’s Day!!

On February 12th, the statewide DSAW community celebrated Valentine’s Day with a virtual party! During the evening program, the group got in the holiday spirit by playing Valentine’s Trivia via Kahoot. Participants then followed along and created a “love bird” craft that they could give to loved ones as a valentine.

Check out the next DSAW Virtual Family Night

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DSAW- Central WI Active Moms

DSAW- Central WI is committed to producing new programming for caregivers this year! The newest addition is DSAW Active Moms! This is a free program for moms and caregivers that focuses on fitness and fun. The first outing took place at Underdown Recreation Area. The group made the best of the winter weather and went snowshoeing.

The next outing on March 12 will also involve snowshoeing. The group has equipment for you to borrow if needed. Sign up here!

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DSAW Webinar: Introduction To Disability Benefits

On February 25th, DSAW hosted a webinar for participants to learn about the resources, services, and programs available to families through Aging and Disability Resource Centers.

Staff from the Disability Services Division of Milwaukee County shared information about benefits and the services they provide for children and adults.

Access Recording Here

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Virtual Support Parent Training

On February 25th, DSAW hosted another session of Support Parent Training with Parent to Parent Wisconsin. The training was conducted virtually and included both Parent’s First Call Training and Prenatal Training. We are so grateful to all who attended! They will go on to make an important difference in expectant and new parents’ lives!

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DSAW Connects During February

Read on to see what our virtual classes have been up to in February!

Creative Corner

DSAW Creative Corner has been making the coolest creations this month! Participants made some peacocks out of upcycled materials like household cardboard! Other projects this month included origami dogs, a Valentine’s Day craft, and baby Yodas!

LifeSkills & Laughter

This class discussed Valentine's Day and answered questions like “what doe love mean,” “what do we love,” and “how do we show love.” The class also made cards for the special people in their lives.

Travel the Globe

This class spent February traveling through part of the US! So far the class has virtually visited Wisconsin, Michigan, New York, Maine, Washington DC, Boston, Orlando, and now Texas! After a handful more US states the class will leave the country for some exploration abroad!

Exploring Food

This class is learning how to be prepared when going grocery shopping! The class brainstormed all the different ways to make a grocery list before creating one that included everyone's favorite things to eat. They figured out where the items would be in the store and discussed important things to think about before going grocery shopping.

Here is what they came up with: 1. Check your fridge and pantry to see what you have first. 2. Use what you have to make meals before buying more. 3. Only buy what's on your list. 4. Try to stick with healthy foods. 5. Find the cheaper option as much as you can.

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DSAW Free Programs

Tiny Tots

DSAW Tiny Tots meets once a week on Tuesday mornings for songs and signs! This semester, each class focuses on a different color and utilizes videos, songs, and stories. At the end of the class, participants learn a new sign related to their lesson.

Stream Team

This group has been really interested in playing Kahoots this month! The class has used the online trivia game to play “World You Rather,” answer poll questions, and play classic trivia. The group enjoys learning more about each other and strengthening their friendships.

Sleep Apnea & Down Syndrome

Camilla Matthews, MD presented on Sleep Apnea and Down syndrome on January 18th during a webinar hosted by the Madison Area Down Syndrome Society. We are summarizing her presentation here. Please access the recording of her webinar for further information.

What affects optimal sleep?

• Macro sleep environment: temperature in the bedroom, the noise and light level, and the level of safety

• Micro sleep environment: the texture of bedsheets and the position the child sleeps in

• Sleep practices: schedules around feeding time and napping

• Socio-cultural context: parenting practices and values

• Socio-emotional context: attachment factors in the family and child's temperament, maternal mental health/stress

• Developmental context: what stage of development the child is in and the child's age

• Health issues: medication and nutrition

Why might my child experience daytime sleepiness?

• Low sleep quantity

• Fragmented sleep quality

  • Covers conditions like sleep apnea and restless legs

• Primary Sleep Disorders of Excessive Sleepiness

  • Narcolepsy

  • These conditions can co-occur with sleep apnea

• Circadian Rhythm Disorders

  • We all have a preference for getting up earlier or going to bed later

What is sleep apnea?

Sleep apnea is defined as "stopping breathing when sleeping." For adults with sleep apnea, the stopped breathing lasts for more than 10 seconds. For children, the disruption lasts for more than two respiratory cycles. Both adults and children will stop and resume breathing throughout the night.

Are there different kinds of sleep apnea?

Yes. Obstructive Sleep Apnea, "Central" Sleep Apnea, and Hypopnea.

• Obstructive Sleep Apnea is breathing blocked by an "obstruction" of the upper airway while chest and abdominal muscles keep attempting to breathe.

  • shallow breathing, snoring with big gasps

• "Central" Sleep Apnea

  • breathing takes a pause, the brain "skips a beat"

• Hypopnea

  • reduction in breathing of about 50%, shallow breath, due to a partially obstructed airway

  • small change in oxygen level

  • shallow breath

Why are children with DS at higher risk for Obstructive Sleep Apnea?

• Smaller mid-face: typically people with Down syndrome have a smaller upper jaw, and/or nose. A smaller jaw makes the tongue seem larger and this can cause an obstruction.

• Decreased pharyngeal muscle tone: pharyngeal muscles are the muscles that support breathing and those muscles can be weaker in people with DS.

Why is sleep apnea a concern?

Children with sleep apnea have been known to have decreased IQ scores and school performance, hyperactivity, and cognitive defects. Sleep apnea can lead to hypertension although it is not common in children.

Specific effects of sleep apnea in children with DS:

• verbal IQ scores

• impaired executive function

  • cognitive flexibility

• depression

  • in adolescents

  • could be associated with other behavioral issues

How common is sleep apnea in children with Down syndrome?

Very common. 60-100% of children with DS have sleep apnea.

Symptoms of sleep apnea:

• Snoring/heavy breathing

  • 54% of children with DS with no reported symptoms demonstrated sleep apnea on a sleep study (Schott, 2006)

• Sleep disruption

  • restless sleep

  • daytime sleepiness

  • lots of napping during the day

• Irritability

• Poor attention

• Poor concentration

• Sleep positions

  • Sleeping sitting up and folded forward

  • Sleeping with the neck hyperextended/ off the bed

How do you evaluate for sleep apnea?

Evaluations are usually done before the age of 4 but can be done anytime. Meeting with a specialist before testing will help determine if your child can tolerate a sleep study. During a sleep study, you stay overnight at a sleep center. Dr. Matthews recommends looking for one that routinely deals with children. As a parent or caregiver, you will stay overnight as well.

• monitor oxygen level, carbon dioxide level

• videotaping, EEG (brain waves), position, breathing effort

• measure airflow

Potential for "At-Home" testing

• Watch Pat

More info available at: www.uwhealth.org/wisconsinsleep

How do you treat sleep apnea?

• Surgery

  • Adenotonsillectomy: removal of tonsils and adenoids

  • Lingual tonsillectomy: removal of lingual tonsils

  • Other: evaluation by ENT, craniofacial surgeon, or pulmonologists

• Medications

  • GERD/ Heart Burn/ Trouble Swallowing

  • Allergic Rhinitis

  • Asthma

• Weight Loss

• CPAP: Continuous Positive Airway Pressure

Main Takeaways:

1. Sleep apnea is very common in infants, children, and teens with Down syndrome.

2. Sleep apnea affects the heart, lungs, and brain of people which affects IQ, mood, and attention.

3. Many factors affect sleep apnea so there are many treatment options.

4. Talk to your child's doctor about your concerns and how to get tested/treated.

Access full webinar recording here.

Meet a DSAW Leader: Abigail

I was hired by DSAW in November of 2019 as the Marketing & Events Coordinator. It is exactly the type of position I wanted to have after I graduated from Saint Norbert College in May. While studying English and communication & media in school, I gained an understanding of how the various forms of language can impact change. I wanted to use my education in this area to positively impact my community. 

I grew up going to DSAW events with my parents, sister, and older brother who has Down syndrome. Shortly after I got my new job, my dad reminded me that he and my mom were some of the first parents in the area to start DSAW back in the 90s. I feel very lucky to be able to work for an organization that has been such a big part of my family's life. 

At work, I enjoy sipping coffee and chatting with coworkers, creating social media posts for all the chapter websites, meeting board members on our monthly calls, and planning all of the super fun events. 

Outside of work, I like to travel when I can, read Stephen King books, paint, maintain my cinnamon roll blog, and spend time with my boyfriend Hawkin (who also loves volunteering at DSAW events).  

Any questions about events, programs, or just to connect, please email me at abigail@dsaw.org or give me a call at 414.327.3729 ext 105. 

Raising Awareness For World Down Syndrome Day

Dear DSAW Family,

Happy March!! March is one of my favorite months of the year because March 21st is World Down Syndrome Day. While we celebrate the beautiful gift of Down syndrome every day, March 21st is set aside every year as an international holiday – the day the rest of the world celebrates with us. This year, we are making this celebration BIG, and we are celebrating all month long.

This month is all about awareness – raising awareness and acceptance of our amazing friends with Down syndrome. We know how incredible they are, now let’s shout it to the world!

We have some fun ideas and easy ways that you can raise awareness this month:

1. Raise awareness everywhere, every day!
    
   1. Change your cover photo to educate your friends and family about World Down Syndrome Day and how we are #morealikethandifferent. Click here to download the photo!
       
   2. Print out these Down Syndrome awareness cards to hand out at school, work, or local businesses. This is an easy way to spread awareness wherever you go! Click here to download the printable cards. 
       
   3. Share our special World Down Syndrome Day photo that we’ll post on 3-21. Stay tuned!
       
2. Join us in rockin’ your crazy socks on March 21st! Crazy socks have become a symbol of World Down Syndrome Day – everyone is unique and beautiful. Use the hashtag #DSAWCrazySocks in your posts for a chance to be featured on our page!
    
3. Raise money for DSAW's Statewide Parent's First Call Program with a Dimes for Down Syndrome campaign! Click here to download our printable label and tape it to a coffee can/other container. Place the containers at local businesses, your child’s classroom, or your office. The group that raises the most money will receive a pizza or donut party delivered by our Self-Advocates with Down syndrome. Send in your change, or start a fundraiser online (click here to visit the Dimes for Down Syndrome website).
    
4. Find a DSAW World Down Syndrome Celebration near you!

Not only are we celebrating World Down Syndrome Day this month, but we are also launching the DSAW Statewide Parent’s First Call Program by sending materials to more than 400 medical professionals in Wisconsin, launching billboard campaigns, and unveiling our new DSAW Parent’s First Call Magazine.

When you raise awareness for Down syndrome in your local community, you are not only raising awareness for your child, neighbor, or sibling… but you are raising awareness for individuals with Down syndrome who aren’t yet born.

The termination rate for fetuses with Down syndrome is still well over 80%. Through DSAW’s awareness campaigns and the Parent’s First Call program, YOU can be an integral part of reaching expectant parents who may one day face a terrible decision.... expectant parents who may look back on your work, your joy, your hope… and decide that this life is actually very beautiful. YOU can make that difference for families and individuals with Down syndrome in Wisconsin.

So join us. Raise your voices for Down syndrome! Change your cover photo, rock your crazy socks, and participate in Dimes for Down Syndrome. Because at the end of the day, we are #morealikethandifferent.

Warmly,
Dawn  

Meet a DSAW Leader: Joy

Hi, my name is Joy Bosch, and I am the Advisory Board President for DSAW-Sheboygan and Surrounding Counties. I was born and raised in the rural Mayville area. I am married to John, and together we have 6 children, 7 grandchildren, and grandchildren #8 and #9 arriving in 2017.

When my nephew was born with Down syndrome, I searched the internet to find more information about it and came across DSAW's website. We learned all about how we could organize a walk to help raise awareness and monies for the community. A few family and friends got together and did just that -- we were delighted to raise over $3,000 our first year! Through the years, many of the walk's founding members are still involved, and we have continued to involve new community members that have helped a lot! I am proud to be part of DSAW-Sheboygan & Surrounding Counties, and hope you will consider getting involved too.

Looking Back on February 2017

Statewide Webinars

In February, we hosted two webinars for families around the state. We hosted the fourth and final part of our Speech Therapy Webinar Series, and also hosted a webinar on Financial Resources. Both webinars received accolades from parents and professionals who listened in. Didn't get a chance to listen? You're in luck - all of our webinars are recorded! Click here to access the recordings.
 

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Chippewa Valley

Chippewa Valley hosted a Parent's Night Out and Meet and Greet with DSAW ED Dawn Nuoffer on Saturday, February 18th. Parents from across the area came out to the Green Mill for appetizers, drinks, and conversation! 

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Fox Cities

The Fox Cities Chapter hosted an AWESOME Adult Night Out at the Escape Room in Appleton. And we made it through! The chapter also hosted its 2nd Annual Valentine's Dance for families. Thanks to Melanie Baeten for taking beautiful photographs!

This Spring, the Fox Cities Chapter continues to sponsor Spread The Word to End the Word campaigns around the Fox Cities area. Below is a picture from just one of these campaigns at the Taste of Oshkosh!

Finally, several of the Fox Cities Advisory Board Members attended the Down Syndrome Affiliates in Action Conference at the end of February. They listened to incredible speakers and came away with new ideas for programs, services, and events in the Fox Cities area. Stay tuned!

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Green Bay

Our Green Bay Chapter hosted an Open Gym at Fusion Athletics on Friday, February 3rd, the monthly Kidz Town Playdate on February 4th, and held its first Bike Camp/Walk Meeting of the year on February 14th. Plans are coming along quickly for the rest of the year!

DSAW-Green Bay also hosted a Mom's Night Out on Sunday, February 26th. We had a great night of fun and laughter. Join us on the 4th Sunday of every month!

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La Crosse

La Crosse's monthly Music Group was held on February 14th. This free class is open to children with Down syndrome ages 0 - 6 and is a great chance to be introduced to many music therapy techniques. Click here to learn more.

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Wausau

DSAW-Wausau hosted its first event on Saturday, February 4th. The playdate was a huge success, and families are already excited for our next events! Join us for a Mom's Coffee Date on Thursday, March 9th to get to know other moms and help plan for future events.

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Greater Milwaukee Chapter & DSAW State Headquarters

DSAW-Greater Milwaukee hosted its annual Valentine's Dance on February 11th. Participants had an amazing time dancing, play games, making crafts, and enjoying a delicious pasta meal! 

Young Leaders Bootcamp
Self-Advocates joined us for a fun month of Young Leaders Bootcamp taught by our friends at the Milwaukee Center for Independence. Our topic was Communication Management - Self-advocates learned all about how to communicate in personal and professional settings. Consider signing up for our March Bootcamp! 

Cooking with the Kiddos
We had a great time at Cooking with the Kiddos, so much so that we've started holding class twice per month!. This class is a great time of family bonding, plus a free meal... what could be better? Join us next month.

Young Leaders Academy
Self-Advocates joined us for Young Leaders Academy twice in February. Every class involves a respite activity such as kickball or yoga, and then ends with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. Consider joining us in March!

Tween Club
Tweens had a great time at February's Tween Club. We played games, made delicious treats like puppy chow, and had lots of fun playing the Wii! Many of our parents got to attend Parent's Night Out while their children had a night of fun. Join us in March! 

Parent's Night Out
Parents hung out at Club Paragon during February's Parent's Night Out. We had a blast! Join us in March!

Family Zumba
We had an AMAZING time at Zumba in February. Almost 15 children and adults joined us for the Saturday morning class. We have a volunteer Zumba instructor who makes the class fun for individuals of all ages and ability levels. Join us in March!

Family Movie Night
We had a blast watching Shrek together at our Family Movie Night. We brought sleeping bags and snuggled in for this family-favorite. Join us in March!

Self-Advocate Corner: Michelle's Poetry

Enjoy a collection of poems from one of our amazing Self-Advocates, Michelle. Michelle is currently completely an internship at DSAW, where we are working on learning office work and management, as well as working on her poetry. 

smile
god made you smile
around you take the heart
to pray god everyday you are born
god make you smile

trust
trust in yourself each child
be proud yourself
you are born god made you this way
just a way you are love yourself trust
in your heart

proud
be proud yourself when you feel proud
make you smile feel hug yourself
be proud be your best friend yourself D
proud you are

love
love special way just a way you are
love yourself inside in your heart feel
special you are born special

Happy New Year from DSAW!

Dear Friend,

Happy New Year! As we celebrate the beginnings of 2017, I also celebrate the amazing year that is ending. You helped DSAW climb to new heights during the past year, and I’m thrilled to share our success.

In 2016, we served 4,500 individuals with Down syndrome and their families throughout Wisconsin, and countless others through our resources, webinars, and other virtual support. We continued our core programming of training medical professions on delivering a fair and compassionate Down syndrome diagnosis, helping individuals overcome obstacles through “Roadmap Sessions,” training children on what it means to be a good friend to someone with Down syndrome, and more.

But more than just continuing our core programs and services, 2016 was a year of growth and exciting changes for DSAW. We officially launched the Parent’s First Call Program, which connects new and expectant parents to resources and support 24 hours a day, 7 days a week. Our 7 Down Syndrome Awareness Walks throughout the State increased their fundraising by 23% in 2016… WOW! I’m so excited for you to see the impact this additional funding will have in your community. 

We also focused efforts on reaching families throughout the state, no matter where they live. We launched a new series of statewide webinars on important topics for families and medical professionals. We also launched a new, organized, and easy-to-use website (click around after you finish reading this post!). Finally, we moved the DSAW state headquarters to a new location in West Allis, WI. This office serves the entire state while piloting replicable programs and services in the Greater Milwaukee Area.

2016 could not have been so successful without our incredible community partners. In the Greater Milwaukee Area, we’re thankful for Bader Philanthropies, Cardinal Capital Management, the Home Depot, Dries Painting, the Racine Community Foundation, the Stackner Family Foundation, Nonprofit Management Fund, Professional Construction Inc, Trawicki Electric, Sid Grinker Restoration, Ben’s Cycles, and many other foundations and businesses. Thank you for supporting our programs and services. A special thank you to Potawatomi Bingo & Casino’s Heart of Canal Street Program for giving DSAW more than $35,000 in December! 

Thank you to the Otto Bremer Trust in La Crosse; the Community Foundation of North Central Wisconsin in Wausau; the Gordon Flesch Company, Green Bay Packers Foundation, LaForce Employee Giving, and Cornerstone Foundation in Green Bay; and the Lyssa and Andrew Schmidt Charitable Fund in the Fox Cities. We LOVE you all, and are so grateful for your support. Click here for a full list of our partners and sponsors around the state.

I’d also like to thank the individuals and families around the state who make our work possible. Thank you to the DSAW State Board, the Chapter Advisory Boards, all of our top fundraising teams at the walks, and our 800+ statewide volunteers. As a member and volunteer-driven organization, you are the backbone that supports everything we do. Thank you!!

2016 was an amazing year for DSAW, and I’m confident that 2017 will build upon this past success. At the end of 2016, we finalized DSAW’s new 5-Year Strategic Plan, which will guide DSAW through its planned growth and change over the next 5 years. We have reorganized the way we talk about our programs and services, and the way we approach our fraternal support. More than anything, we want to be known as an organization that supports the entire state of Wisconsin. No matter where you live, DSAW is here to help you and your family. No programs or services nearby? Get in touch with us to start a Parent/Grandparent Support Group, Coffee Club, Monthly Playdate, Mom’s Night Out, or other activity near you. Read more about our 5 Year Strategic Plan here.

Looking ahead, I am filled with hope. Individuals with Down syndrome and their families are more prepared than ever before in history to lead rich and rewarding, meaningful lives… but an agency like DSAW must be at the forefront of cutting-edge programming, individually designed to help them excel at school, at home, in the community, and to prepare them for an independent life with housing, supports, and income. Because of your support, Wisconsin is on its way to becoming the best-supported state for individuals with Down syndrome. We have big things ahead of us in 2017. With your support, I know that anything is possible.

Thank you for investing your time, talent, and treasure in DSAW’s future!

Warmly,

Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin

A Look Back on December 2016

The month of December was full of holiday cheer and new programs and events throughout the state. Check out what we've been up to!

Fox Cities

Fox Cities Holiday Party
On December 3, Santa welcomed forty-eight (48) families of children with special needs from the Fox Cities for the Santa Celebration hosted by WisconSibs, Inc and DSAW Fox Cities. A record attendance of more than 120 children with disabilities and their siblings, 78 adults, and 60 volunteers played games, decorated cookies, made new friends, and got some lap-time with Santa. 

This was the 13th year that WisconSibs has offered the event.  Spirited volunteers from high schools, businesses and the Humane Society, financial support from the Appleton Rotary and DSAW Fox Cities, and in-kind gifts from Fleet Farm, make it possible to host the event and provide a gift from Santa for each child attending. 

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Chippewa Valley

Chippewa Valley Holiday Party
We had a wonderful time at the annual holiday party, including visits & presents with Santa, horse-drawn carriage rides in the snow, food, music, and lots of fun. Thanks for everyone who helped make this another memorable event!

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La Crosse

La Crosse Holiday Party
Families attended the La Crosse Holiday Party (despite the bad weather!) to enjoy food, crafts, and holiday music. Santa also visited and passed out presents (& hugs) to the children. Thanks to everyone who attended and helped spread holiday cheer!

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Greater Milwaukee Chapter & DSAW State Headquarters

Milwaukee Holiday Party
More than 250 people attended the annual Greater Milwaukee Holiday Party on Saturday, December 3rd. We held the party in the Nathan Hale High School Cafeteria, which was a perfect location! Santa made an appearance to hand out presents to each child, and we enjoyed a taco/nacho bar, hot chocolate, cookies, and plenty of crafts and games. We also spent plenty of time dancing with our favorite DJ. Check out photos from the event here.

Milwaukee Self-Advocate Shopping Event
Self-Advocates with special needs and volunteers from Caroll University and New Berlin West High School joined us for an afternoon of Holiday Present Shopping. Everyone had a great time buying presents for loved ones. And of course, we also grabbed coffee and gelato! Thanks for everyone who made this a fun event.

Motor Skill Playgroup
Enroll today for our twice-monthly motor skills playgroup, taught by a certified Occupational Therapist! This program is for kids 6 and under. While your kiddo is having fun, you can join us for coffee club!

Grandparents Support Group
A note from our group facilitators: "Hello. We’re Jim and Robbie Fackelman and we will be facilitating the Grandparent’s Support Group.  We are the proud grandparents of four year old, James. James lives in Conifer, Colorado with his mom and dad and eighteen month old brother, Robert. James has been a gift to our whole family.  He has taught all of us what pure love, kindness, and acceptance means.  James has made our lives better because of his ability to make us stop and enjoy every single moment, every kiss, every hug, and every accomplishment.

We are very anxious to hear your stories and to share your photos. The Grandparent’s support group is a place where we can share resources, tips, books, articles, new advances, and ways to be involved in DSAW and the Down Syndrome community.  We will be meeting on the first Tuesday of each month from 4:00 to 5:00 at the DSAW office, but because of the holiday in January, our meeting will be on January 10.  Every grandparent is welcome.  We want to get to know you and your grandchildren, make new friendships, and support each other in our journeys." Join us in January!!

Young Leaders Bootcamp
Self-Advocates joined us for Young Leaders Bootcamp this month on Communication Management. Consider signing up for our January Bootcamp!

Cooking with the Kiddos
We had a great time at our first month of Cooking with the Kiddos. We made a full meal together and then got to enjoy the hard work! This class is a great time of family bonding, plus a free meal... what could be better? Join us next month.

Young Leaders Academy
Self-Advocates joined us for Young Leaders Academy twice in December. We are still working our way through the Job Skills Training curriculum, but we will start a new lesson soon. This is the perfect time to jump into our course -- consider joining us in January!

Tween Club
Tweens had a great time at December's Tween Club. We played foursquare, gym games, and had lots of fun playing the Wii! We also had an awesome nacho bar. Many of our parents got to attend Parent's Night Out while their children had a night of fun. Join us in January! 

Parent's Night Out
Parents hung out at the Brass Tap during December's Parent's Night Out. We had a blast! Join us in January at Club Paragon in Greenfield.

Family Zumba
We are excited to dive into Zumba in the coming months! We have a volunteer Zumba instructor who is ready to instruct our families in this fun and family-friendly activity. Join us in January!

Spanish-Speaking Support Group
Multiple families joined us for this month's Spanish-Speaking Support Group! We had a great time. Join us in January!

Family Movie Night
We got snowed out for our family movie night this month, but we're excited for January's movie - Frozen! 

Milwaukee Wave Game
About 40 people joined us for the Milwaukee Wave Game on Saturday, December 17th. Thanks to our AMAZING partners Profession Construction Inc, tickets were free, and families received food and beverages too! In addition, some of our families participated in special activities before the game. Thanks so much, PCI!