WHAT IS MADSS?
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!
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.
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!
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!
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!”
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!
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!
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.
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.
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
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!
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.
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.
Children with disabilities get helping hand at UW-La Crosse
DSAW- LA CROSSE SPONSORING BIKE CAMP
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!
The DSAW News
Sam and Lilly share what's been going on at DSAW during May.
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.
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!
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
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.
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!
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!
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!
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.
Thank you to the Green Bay Packers Foundation for sponsoring this program!
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.
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.
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!
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!
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.
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!
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.
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.
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!
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:
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.
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!
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.
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.
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!
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.
Local community celebrates Down Syndrome Day
Lifetime Achievement Award - Dr. David Smith
It is our honor to share with you all one final award before World Down Syndrome Day! Today, we celebrate Dr. David Smith with a Lifetime Achievement Award. Dr. Smith has done so much to help families who have a loved one with Down syndrome throughout his life. In addition to his role in starting the Down Syndrome Clinic at Children's Wisconsin, he played a crucial role in the founding of the Down Syndrome Association of Wisconsin, and he continues to be involved today as he helps DSAW to educate and train families and medical professionals. He is also father to Charlie, a 35 year old man who happens to have Down syndrome and who is Dr. Smith's biggest inspiration. Thank you Dr. Smith for taking care of people with Down syndrome and their families!!
This week, we will highlight each of the awardees that we intended to recognize at our 30th Anniversary Extrava-Gala, which was cancelled due to COVID-19.
Distinguished Service Award - Debbie Merkel & Michelle Zoromski
We are thrilled to introduce you to two amazing DSAW leaders, the recipients of DSAW's Distinguished Service Award! Debbie Merkel and Michelle Zoromski of DSAW-Fox Cities were nominated from a statewide pool of candidates for their exceptional and distinguished service in support of DSAW's mission. We can't thank you enough for all you do for DSAW. Watch this video to learn more about Debbie and Michelle!
This award is sponsored by Ansay & Associates.
This week, we will highlight each of the awardees that we intended to recognize at our 30th Anniversary Extrava-Gala, which was cancelled due to COVID-19.
Trailblazer Award - Maxwell Tegen
We're excited to announce the winner of DSAW's Trailblazer Award!! Max Tegen is a young man who knows no limits, who embodies the future generation of young adults with Down syndrome. He is an Eagle Scout, interns for a senator, graduated from Edgewood College, and rocks his extra chromosome! Hear more about the trails Max is blazing in the video below! Congratulations Max!!!
This award is sponsored by Wipfli.
This week, we will highlight each of the awardees that we intended to recognize at our 30th Anniversary Extrava-Gala, which was cancelled due to COVID-19.
Corporate Citizenship Award - Cardinal Capital Management & Professional Construction Inc.
We want to recognize two of the fantastic companies that we have the privilege of calling family. Cardinal Capital Management and Professional Construction Inc. have not only shown us the transformative power of corporate giving, but they also dedicate their time and their talents to ensuring our friends with Down syndrome can achieve their greatest life possible. We are honored to present them both with DSAW's Corporate Citizenship Award. THANK YOU for the impact that you make every day. Check out the video to learn more about these wonderful partners.
This week, we will highlight each of the awardees that we intended to recognize at our 30th Anniversary Extrava-Gala, which was cancelled due to COVID-19.
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
Pillar of the Community Award - Bader Philanthropies, Inc.
Bader Philanthropies staff
We are proud to recognize Bader Philanthropies, Inc. as a Pillar of the Community! They have been such a huge part of the growth of our organization, and we can never thank them enough. They have provided the faith, funding, and friendship that launched the Chapter model in Wisconsin, DSAW-Family Services, our Alzheimer's and Aging Services, our housing initiative, and so much more! Take a look at the short video below that highlights our friends at Bader Philanthropies.
This week, we will highlight each of the awardees that we intended to recognize at our 30th Anniversary Extrava-Gala, which was cancelled due to COVID-19.
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!
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!
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!
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.
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.
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.
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!
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.
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!
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.
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:
Sleep apnea is very common in infants, children, and teens with Down syndrome.
Sleep apnea affects the heart, lungs, and brain of people which affects IQ, mood, and attention.
Many factors affect sleep apnea so there are many treatment options.
Talk to your child's doctor about your concerns and how to get tested/treated.
Access full webinar recording here.
Looking Back on January 2021
DSAW continues to rise above in 2021 by planning programming that fulfills the CDC’s COVID-19 safety guidelines and our clients’ needs! Our statewide virtual programming had tons of exciting new content during January. Participants attended the first round of Pop-Up programs. Virtual family fun nights continued with MADSS Bingo and a DSAW Karaoke night. DSAW- Southeastern WI even fit in a socially-distant sledding day!
Winter Fun
DSAW- Southeastern WI Family Sledding Day
DSAW- Southeastern WI planned a family sledding day at Sunburst Winter Sports Park for local families! This was a great opportunity for families who have children or loved ones with disabilities to meet up outside in a safe, socially-distant way. Families enjoyed tubing down the hill at Sunburst and socializing with each other.
DSAW- Southeastern WI looks forward to planning more in-person events as COVID-19 restrictions are lifted and community organizations safely re-open.
Virtual Family Night
DSAW families and self advocates across the state are loving virtual family nights. On the third Thursday of the month, DSAW hosts an evening of family fun! This month participants enjoyed a Karaoke Night! All kinds of music was featured and every participant got their chance to shine by singing and dancing along to their favorite tunes.
Join us next month for our Virtual Valentine’s Party!
NEW DSAW Pop- Up Classes
Pop-Up Classes are one of DSAW’s newest program offerings! The first Pop-Up class of the spring 2021 semester was lucky to hear from Ryan Raisbeck, a firefighter from Madison, WI!
Raisbeck talked about what a day in the life of a firefighter is like and day to day safety skills like “stop, drop, roll.” The class discussed exit drills and how to safely leave a home if there is a fire! We are so thankful to Ryan for taking the time to talk about these important topics with our class!
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.
DSAW Virtual Leaders Retreat
DSAW Board members from all 7 chapters met up via Zoom to discuss the past, present, and future of all the DSAW chapters! While this virtual retreat looked very different from our usual in-person weekend, we were happy to have an opportunity to come together and reflect on the past year. There was also an opportunity to meet new board members who joined in 2020 and share ideas to help make 2021 a safe and productive year of events, education, and programming for DSAW families all over Wisconsin! Thanks to all who attended!
DSAW Connects During January
DSAW Connects Statewide Programming began the spring semester on January 4th. Read on to see what our virtual classes have been up to!
Criss Cross Training with Pizazz
A new fitness program for the spring semester! Participants are working on different breathing techniques, strength training, and basic step routines. One of the awesome participants, Rachel, has been co-leading the end of class and teaching a dance routine to "Born this Way."
Exploring Music & Movies
An exciting guest speaker visited participants in DSAW Connects: Exploring Music & Movies! We spoke to American Actor Ric Reitz and his experience with films and script writing!!
Crafts & Conversation
Participants are having a "crabtastic" time in DSAW Connects: Creative Corner! Participants followed along at home while they learned how to make a crab out of craft sticks.
DSAW Free Spring Programs
Stream Team
Stream Team is loving their new combined class as it gives them the opportunity to meet new friends! Group leaders Abigail and Rachel have focused on asking the group what activities they’d like to see during this semester. Participants requested more Kahoots, “Would You Rather,” and other fun, social games.
DSAW Zoom Zumba
Zoom Zumba or ZOOMba is a fun and free fitness program hosted by DSAW and MADSS. This class features fun upbeat music, adaptive moves, and is guided by a certified Zumba instructor. Participants have enjoyed requesting songs and getting their parents and siblings to join in the fun. You can still sign-up-this class is always accepting new participants.
