Looking Back on February 2022

We’re looking back on February! It may be the shortest month, but we packed it full of fun, learning, and friends. DSAW celebrated Valentine’s Day, we were represented at a national conference, and more! Read on for all the details!

Happy Valentine’s Day

In February, we celebrated Valentine’s Day! We had our Virtual Valentine’s Day Party, where attendees created V-Day wreaths and played bingo. Small groups and one-on-one’s celebrated with heart-shaped cinnamon rolls, heart-shaped pizzas, love monsters, and other festivities!

DSAW at DSAIA’s Leadership Conference

Mary West, DSAW's Senior Program Manager, SE WI, attended Down Syndrome Affiliates in Action’s 2022 Annual Leadership Conference in Las Vegas! Mary connected with other Down syndrome organizations across the country and presented on DSAW's aging services in a session titled "Supporting Aging Adults with Down Syndrome and their Families in Your Community." She says, "It was incredible to learn what all the other states are doing & to bring ideas back to Wisconsin :)" Congratulations Mary and thank you for representing DSAW!

Never Stop Learning!

We learned a lot this month! Our Social Skills Group learned about physical wellness with friends, and we had some American Sign Language lessons at the DSAW office! Brittany celebrated President’s Day with her client by learning about presidential history.

DSAW Futures Planning

Our My Full Life™ pilot program continues as a part of DSAW’s new Futures Planning program! As part of the My Full Life™ curriculum this month, self-advocates learned about and built their own first aid kits. Read more about DSAW’s Futures Planning work here!

Awesome Outings

Across the state, February was a month for bowling, sledding, and more fun! Our small groups visited the bowling alley and Monkey Joe’s play center (and celebrated with donuts afterward). DSAW-South Central got in on the bowling fun with a family outing in Janesville. In La Crosse and Central WI, we hosted family sledding parties! Southeastern WI rented out a theatre to watch the 2018 animated movie Smallfoot for this month’s Super Saturday.

Hairspray the Musical!

Our newest chapter is DSAW-South Central WI! Formerly the Madison Area Down Syndrome Society, this new chapter covers Sauk, Columbia, Iowa, Dane, Jefferson, Lafayette, Green, and Rock Counties! In Feburary, DSAW-SC offered free tickets to self-advocates to see the musical Hairspray at the Overture Center for the Arts!

DSAW-Central WI’s Sledding Party

DSAW-Central WI had a great time at our sledding party at Iverson Park! We enjoyed the beautiful winter day and celebrated Emma's 9th birthday! A special thank you to the UWSP students who volunteered!

Mental & Behavioral Health in Children with Developmental Differences

Dr. Angela Marx, of Peace of Mind, LLC, presented on April 23rd 2020 during a DSAW webinar. We are summarizing the presentation here. Please access the recording of the webinar for further information.

Neurodiversity & Developmental Differences

  • Developmental Differences can cause disability, but Dr. Marx prefers not to call them “disorders”

  • High level definition of neurodivergence is all brains and minds work differently

  • People with developmental differences are neurodivergent

  • People without developmental differences are typically developing or neurotypical

  • Focus on accommodations and how to set up an environment for developmental differences

Mental Health

  • Focuses on social-emotional functioning and development

  • Everyone’s responsibility

Behavioral Health

  • Outward presentation of our mental health

  • Things we can observe and see

  • Focuses on symptoms

Neurodevelopmental Differences

Your child’s neurodevelopmental needs can impact their learning, behavioral, and emotional needs. Left side of the graphic lists difference in brain styles and the right side lists mental and behavioral health. Differences on the left side can impact behaviors on the right side.

On Diagnosis

  • Getting a diagnosis can be tricky

  • Important but not the be all end all

  • All children's develop at different rates

  • All children have “uneven” developmental profiles

    • strengths and weaknesses

    • Especially true for neurodivergent children

  • Early identification vs intervention

    • Acknowledging the diagnosis early on is important, but there isn’t always something to be done right away

    • intervention isn’t always necessary! Might just need support and accommodations

Co-occurring Differences

  • 2 neurodevelopmental differences can occur at once (happens 83% of the time)

    • dual diagnosis

    • EX: motor developmental difference and speech and language difference

  • Medical and Physical health influences developmental and mental health

  • Focus on how the mind works not what the mind can’t do

Experts & Approaches

  • Lots of outdated information around this topic

  • Intervention and Treatment vs Promoting Healthy Development

    • one isn’t better than the other

    • Intervention and Treatment isn’t always needed

    • Dr. Marx prefers Promoting Healthy Development

  • Intervention/ Treatment

    • instances where this is necessary

      • professionals as experts

        • not every professional your child sees will be up to date

      • Focus on “treat” developmental difference, diagnoses, or disorders

      • Focus on “training” the child to act a certain way, match what we perceive as typical

  • Promoting Healthy Development

    • Parents are the experts

    • Not a right or wrong way to develop

    • Support child’s unique development

    • Supports emotional well being and relationships over skill acquisition

Promoting Healthy Development

  • All brains are wired towards growth and optimal development

    • even if you did nothing

  • Focus on social-emotional needs and accommodations for developmental differences

  • Strive to understand unique brain and needs

  • All children need

    • Freedom to play and learn

      • children lean through playing

      • children communicate through playing

      • children do not need to be taught how to play- natural party of their world

      • does not need to involve words or direct teaching

      • meet your child where they are at

      • you can engage with the child just by enjoying them and being yourself as their parent

    • Sense of self and belonging

      • important for parents to understand masking

        • when a child changes natural personality to conform to social pressures

        • child notices they are doing something differently and feels the need to change

        • happens when people try to “train” them

        • causes confusion, communicates that their natural way of being is wrong

        • can also cause mental and behavioral health problems down the line

      • help your child understand their strengths and differences

      • Presume competence

        • the individual knows what is best for them

        • provide support

      • Accept who they are- fully whole human with a bright future

      • Help them build confidence

    • Relationships and connections

      • learn sensory needs and interest to genuinely connect

      • collaborate to establish routines, rules, preferences

      • accommodate for unique communication needs

        • more than speaking words

      • Peers

        • not necessarily same-aged but same interest and social preferences

        • Connect to local resources

Examples of Accommodation/ Support

  • Different than providing a treatment

  • Not focused on changing anything

    • Examples

      • if an individual does not prefer to use words or spoken language, you can learn how the child chooses to communicate (Augmentative and alternative communication)

      • Tap into their natural interests and accommodate their natural learning style - not forcing them to learn like everyone else, honoring processing speed

      • Setting up an environment to support the sensory needs of the child

Challenging & Difficult Behaviors

  • Who defines a difficult behavior?

    • if not disrupting or hurting others don’t take them away

    • if the behavior is hurting and disrupting others, it is most likely an outward expression of internal distress

      • not giving you a hard time but having a hard time

    • No need to change all atypical behaviors

    • Atypical behaviors serve a purpose for the child

  • Meltdowns/ Shutdowns

    • Way to deal with overwhelm

    • Discover stressors and remove them

Developmental Expectations

  • Expectation Gap

    • when we assume that our child should be able to do something that their brain is not ready to do yet

      • Impulse Control/ Sharing & Turning Taking

        • Typically developed around age 5

      • Emotional & Behavioral Control

        • developing into adulthood

    • Expect inconsistency and unpredictable behavior

    • Respect child’s right to say “no”

      • not running the house but respecting their right to express what feels right for their brain and body

Other Influences On Behavior and Emotions

  • Rapid brain growth

  • Abilities are still emerging

  • Sleep requirements not being met

  • Hunger

  • Sense of safety

  • Body states and pain

  • Ups and downs of social and emotional growth

  • Growing power needs

Regulation

  • Expect to see behavioral dysregulation/difficulties

    • all children can lost control in times of stress

  • Co-regulation

    • sharing own calmness to help child calm down

When More Support May Be Needed

  • Sudden/ persistent changes from what is typical

  • Difficulties function or doing things the child has consistently been able to do

  • Increase and consistency in challenging behavior

    • can’t be calmed or soothed in usual ways

  • Child saying that something is wrong or hurts

  • Physical symptoms

    • stomach aches, sleep difficulties, appetite changes, fatigue

Supports

  • Medical Concerns

    • Primary Care Provider

    • Developmental Pediatrician

    • Neurology

    • Gastroenterologist

    • Feeding/Swallowing

    • Ear Nose and Throat

    • Audiology

  • Therapies

    • Occupational

    • Physical

    • Speech and Language

    • Behavioral Treatments

    • Massage, art, Equine

  • Mental Health

    • Licensed Professional Counselor

    • Psychologist

    • Psychiatrist

  • Community-Based

    • case manger

    • Schools (psychoeducational/learning)

    • Local resources

Psychological/ Neuropsychological Testing

  • Identifies unique neurodevelopmental profile

  • Provides diagnoses if needed

  • Provides recommendations

  • Can offer treatment and intervention

  • Offers access to supports and services

Resources

Therapist Neurodiversity Collective

Mona Delahooke, PhD

Dr. Dan Seigel

Ross Greene- Lives in Balance

Parenting Resources

Looking Back on January 2022

We’re looking back on the first month of 2022! We got off to a great start with new classes and continuing programs for individuals with Down syndrome and related disabilities and their loved ones. Pink Umbrella Theater Co. helped us learn about makeup, our newest chapter DSAW-South Central hosted a Family Sledding Party, and more! Read on for all the details!

Makeup Class with Pink Umbrella Theater Co.

In collaboration with Pink Umbrella Theater Co., we hosted a virtual makeup tutorial this month! Tommy Novak from Pink Umbrella taught self-advocates about makeup application and instructed everyone on how to do an everyday/daytime look. Thank you again to Tommy and Pink Umbrella! Founded in September 2018, Pink Umbrella Theater Co. is the first of its kind in Milwaukee, welcoming actors and artists age four through adult. They set out to be the first professional theater company in Milwaukee to hire Disabled Actors and Artists.

Social Skills Group

This month, our Social Skills group learned more about staying fit and healthy! They talked about the four components that make up a good physical workout — flexibility, balance, aerobic exercise, and strength. They also worked on some fun arts and crafts, including marshmallow painting!

Wellness 360

This month, we started a new class in Southeastern WI! Wellness 360 is a unique mind and body group fitness class that offers participants the opportunity to participate in workouts and learn all about whole person wellness and how to incorporate it into their lives. The class covers a wide range of topics from yoga to hygiene to personal safety and is held at the Jewish Community Center in Whitefish Bay. You can read more about their first month of classes here.

DSAW Futures Planning

Our My Full Life™ pilot program continues as a part of DSAW’s new Futures Planning program! A pilot group of self-advocates is helping us perfect this exciting new curriculum, which includes a detailed person-centered plan, a robust skills inventory, and independent living skills training. Read more about DSAW’s Futures Planning work here!

DSAW-Green Bay Buddy Up Tennis

DSAW-Green Bay’s successful partnership with Buddy Up Tennis started their January/February session this month! Buddy Up Tennis is an ongoing high-energy adaptive tennis and fitness program for children and adults with Down syndrome, ages 5+. The January/February session consists of 8 90-minute classes, and no prior tennis experience is needed!

This partnership has been a great addition for DSAW-Green Bay and has even attracted athletes outside of the county!

DSAW-South Central Sledding Day

Our newest chapter is DSAW-South Central WI! Formerly the Madison Area Down Syndrome Society, this new chapter covers Sauk, Columbia, Iowa, Dane, Jefferson, Lafayette, Green, and Rock Counties! Welcome to our friends at DSAW-South Central! In January, they hosted a Family Sledding Party at Hiestand Park! Families bundled up for an afternoon of winter fun with tubing and sledding.

Small Group Outings

DSAW’s small groups across the state had a number of outings! In Southeastern WI, they had fun making their own blankets, eating out, and visiting Lifetime Fitness. In Fox Cities, small groups played Wii at their office, visited The Fire art studio to paint pottery, and saw the new Spiderman movie!

Other Fun January Activities!

DSAW had a lot of fun during January with Stream Team, Tween Clubs, Monday Night Social Group, and Saturday Fun Day! Check out some pictures below from Fox Cities and Southeastern Wisconsin. They went bowling, sang karaoke, and more!

How to Put Inclusion First in 2022

It’s 2022 and New Year’s resolutions are at the front of everyone’s mind! Maybe you set a goal to make healthier choices, spend more time with your loved ones, or set aside time for self care. The DSAW community offers another resolution to add to your list: level up your allyship by finding ways to make inclusion a priority in your every day life. We promise it will be easier than hitting the gym;)

What is inclusion?

The concept of inclusion is defined as “the practice or policy of providing equal access to opportunities and resources for people who might otherwise be excluded or marginalized.”

Inclusion is defined differently at different levels. For an example, see the quote below from the National Down Syndrome Society about an inclusive educational environment:

Inclusion is a philosophy of education based on the belief in every person's inherent right to fully participate in society. Inclusion implies acceptance of differences. It makes room for the person who would otherwise be excluded from the educational experiences that are fundamental to every student's development .” (National Down Syndrome Society)

While many definitions exist to answer the questions of “what makes an inclusive work environment” or “what makes inclusive legislature,” this article will focus on how the average citizen can increase their awareness of inclusion through every day actions.

How can I actually be more inclusive?

For the average person, being inclusive essentially means being considerate of others and following basic social rules like not parking in the accessible spaces if you don’t need them. You can definitely take it to the next level though! See our list below for easy ways you can put inclusion first and be an ally!

  1. Knowledge is Power: It is important to understand the history of inclusion and those with disabilities as well as the areas the community is currently focusing on. You can stay up to date on the topic of inclusion so easily with modern technology! See our inclusion resource links below for a starting point.

  2. Start the Conversation: An easy way to grow your understanding of those with disabilities is by having conversations with loved ones or community members (as appropriate) who have varying abilities. It is always best to get your info from the disability community directly when possible because it is empowering to those in the community and you’ll get the most accurate answers.

  3. Challenge Stereotypes: Identifying misinformation about those with disabilities in a conversation is a great way to share your knowledge and help change social perception. (EX: share your loved one’s success stories, call out the use of slurs, correct people who use outdated terminology or promote the belief that people with disabilities are unhealthy or less capable of contributing to society.) This might look like changing your own language as well.

  4. Take It Literally: If you know someone with varying abilities in your life, an easy way to be inclusive is simply including them in activities that are already on your social calendar! Extend an invitation to a social gathering you’re attending, introduce them to different social groups you are a part of, and ask questions and actively listen to them during group conversation. Also, attend the events they invite you to and meet their friends!

  5. Help Ease Social Barriers: Including someone with disabilities socially could also look like helping to ease potential social barriers. For example, if lack of transportation is preventing them from attending a social event, you could offer a ride.

  6. Talk To Your Kids About Difference & Inclusion: Children are the future- they are also naturally curious! Answering your children’s questions about disability and inclusion honestly and openly will help them have a better understanding of the diverse world around them and how to approach people who are might appear different from them.

  7. Inclusion Includes the Parents: Isolation can be a struggle not just for individuals with disabilities but their family members as well. Making an effort to include families who have loved ones with disabilities in your social gatherings will be so appreciated and you’ll probably meet your new best friends:)

Watch our “INCLUSION” playlist on YouTube to hear from DSAW community members about what inclusion looks and feels like.

Does it really make a difference?

Yes! Hearing the testimonies of our friends above shows how doing the smallest things (like passing to someone during basketball) can help all members of our community feel included and happy. Here are some other benefits:

  • Increased opportunities for friendships

  • Reduced isolation and increased safety

  • Increased empathy

  • Shared learning opportunities

  • Positive self-image

Inclusion of those with disabilities also has a quantifiable positive impact on our society. Articles highlighting this are linked in the resource section below.

DSAW also provides educational opportunities for workplaces, classrooms, and healthcare professionals to increase their understanding of disability inclusion. Click here for more info!

Inclusion Resources

4 Benefits of Inclusion in Classrooms

6 Tips To Talk To Your Kids About Disability

CDC Recommendations: Disability and Health Inclusion Strategies

Disability Inclusion: CDC

Disability Inclusion: The Best Actionable Guide and Statistics

“Diversity vs Inclusion:” U.S. Department of Housing & Urban Development

Do Your D&I Efforts Include People with Disabilities?

Equity vs Equality

How To Include Those With Disabilities

Impact of disability inclusion- GSDRC Applied Knowledge Services

“Implementing Inclusion:” National Down Syndrome Society

“The Benefits of Inclusion”- Easterseals

Why Inclusion Is Important- Special Olympics

Looking Back on December 2021

DSAW reflects on the last month of 2021! Our chapters hosted holiday fun for individuals with Down syndrome and related disabilities and their loved ones. Central WI got their families moving with a physical activity scavenger hunt, Fox Cities celebrated their office remodel, La Crosse enjoyed a sensory-friendly light show, and there’s so much more! Read on for all the details!

Happy Holidays!

Holiday Fun Across The State

Kris Kringles with Kitty

DSAW- La Crosse hosted a virtual cookie baking party for DSAW families across the state! A La Crosse area chef, Kitty, hosted the class and taught everyone how to follow a cookie recipe. Everyone had a blast! Thank you DSAW- La Crosse for hosting this fun and free event!

Physical Activity Scavenger Hunt

DSAW- Central WI had a wonderful time teaming up with UW-Stevens Point to host a physical activity scavenger hunt! Children and adults with Down syndrome paired up with UWSP physical education students who guided them through the scavenger hunt. Participants were given a list of challenges like dancing, throwing a ball, completing an obstacle course, etc. and took a selfie when it was completed. Thank you to UWSP for hosting this event and partnering with us!

DSAW- Southeastern Holiday Party at Noel Christmas Expo

DSAW- Southeastern hosted a holiday party for families at Noel Christmas Expo! Families got to see their friends and enjoy the enormous indoor light displays. There were holiday treats and of course gift bags! While we missed our usual holiday party at the office, this experience was very cool and magical!

Neville Public Museum Christmas Exhibit

DSAW- Green Bay hosted families at the Neville Public Museum. There were many cool things to see, but the main attraction was the “Holiday Memories of Downtown Green Bay” exhibit. Families also had a chance to check out the Christmas Market too!

Fox Cities Holiday Open House

DSAW- Fox Cities had an “office warming” for their newly renovated headquarters! Families were invited to an open house that included holiday-themed games, cookie decorating, and a visit from Santa!

Sheboygan Holiday Bowling Party

DSAW-Sheboygan families celebrated the holidays at Odyssey Fun Center! Families enjoyed bowling and catching up with each other.

All Abilities Night at the Rotary Lights

DSAW- La Crosse partnered with La Crosse Area Autism Foundation to host a night of sensory-friendly fun at the Rotary Lights for their families. It was all the magic and fun of the usual light display, but the music was a little softer and there were not any flashing lights. The night also included s’mores and a visit from Santa!

Program Updates

Skills Training Academy

DSAW Skills Training Academy participants had the opportunity to learn about giving back to others in our community. They made blankets with a purpose for a non-profit called Project Linus. Project Linus helps provide security through handmade blankets for children in need. The Project Linus mission is to provide love, a sense of security, warmth and comfort to children who are seriously ill, traumatized, or otherwise in need through the gifts of new handmade blankets and afghans, lovingly created by volunteer “blanketeers.”

The participants made 6 tie blankets that will be donated to the Project Linus organization! We are so proud of them!!

Social Skills Group

This month, DSAW’s Social Skills Group continued building their Calming Tool Boxes. They spent time learning different strategies (or tools) to help keep their bodies and minds calm when they are stressed!

Virtual Christmas Karaoke

DSAW and MADSS friends logged onto Zoom to celebrate the holiday season! They swapped cookie recipes, played Christmas games, and then shared their talents with some festive karaoke. Thank you to all who attended!

Super Saturdays

Our Super Saturday group got together for a holiday party at the DSAW Office. The group enjoyed snacks and treats, crafts, and festive fun!

Webinar: Exploring Assistive Technology

Kellie Bews, a Southeastern Wisconsin Solutions Consultant for Tobii Dynavox, presented on new Augmentative & Alternative Communication (AAC). She explained how ACC works, who might benefit from ACC, and then introduced the process of getting diagnosed and incorporating ACC into your loved one’s life.

Watch the recording here!

Read our blog summary!

"Communication for Now Communication for Life – Using Your Resources to Elevate AAC Success"

Kellie Bews , A Solutions Consultant for Tobii Dynavox presented on assistive technology and communication on December 13th during a DSAW webinar. We are summarizing the presentation here. Please access the recording of the webinar for further information.

The Need For Communication Devices

  • 8 out of 1,000 people worldwide cannot use speech to communicate.

  • 2-3 million people in the U.S. could benefit from speech generating devices.

  • Only 5% of these people have a speech device

What is Augmentative & Alternative Communication (AAC)?

  • AAC is any device, system or method that improves a person’s ability to communicate effectively and participate in the world around them.

  • Can be implemented any time, but usually earlier in the care process is better

A Communication System Should:

  • Increase participation in all environments

  • Support timely interaction

  • Provide meaningful language to the recipient

  • Support language and literacy development

  • Encourage successful day-to-day, face-to- face, real-time interaction

  • Be age and level appropriate

AAC Myths

  • Choosing to use an AAC system is giving up - “the easy way out”

  • AAC will hinder speech and language development

  • AAC is an individual’s sole communication modality

  • The focus of AAC use is the assessment of devices and focus on technology

How do I know if someone could benefit from AAC?

Full Communication Success Screen Here

  • Does the individual have a diagnosis that puts him/her at risk for speech or language challenges? (ASD, CP, aphasia, ALS, etc.)

  • Does the individual have less than 20 words/signs/ signals that can be understood by unfamiliar listeners?

  • Does the individual have difficulty communicating his/her ideas (e.g., asking for a desired item, telling a story, expressing an idea)?

Goals of AAC

  • Communicating successfully NOW

  • System that will be used for long-term communication (this may change as individual progresses

  • Development of language and speech production through AAC use

The Process

  • An individual has been identified as a possible AAC candidate by the team

  • Referral for AAC evaluation

  • Outpatient speech language pathologist

  • Speech Language Pathologists in your school district

  • District Contact Person (larger districts)

  • CESAs

  • AAC Referral Forms - beneficial for outside evaluators, i.e., private therapy clinics, outpatient SLPs

What is SGD Evaluation?

  • Answers the questions:

    • Why does this individual need a SGD?

    • How they are communicating in their natural environment?

    • Which features of an SGD are required to match their abilities and compensate for their areas of need?

Choosing a Communication System

  • One size does not fit all

  • Assessing Strengths/Weaknesses

    • cognition

    • language

    • motor

    • sensory

What Does Success Look Like?

  • Increased attention to interactions

  • Initiation of communication

  • Use of more vocabulary

  • Longer interactions

  • Use of more tools or pages

  • Enjoyment of interaction, and/or

  • More independence in communication

Online Resources

  • Trial Guides

  • Lesson Plans

  • Core Books

Resources, Resources and MORE Resources @ mytobiidynavox.com

WI Medicaid Recommendations

  • 4-week trial across ALL communication environments – school, home and community

  • Must demonstrate intent to communicate with device

  • Focus on functional communication and conversation – “beyond requesting”

  • Establish recommended equipment to be “least costly alternative”

  • Demonstrated family advocacy

WI Medicaid FUNDING PACKET CHECKLIST

  • Evaluation Report

  • WI PA-DMEA

  • Copy of current IEP

  • Client Information Form

  • Release of Benefits and Assignment

  • Insurance card copies

  • Supporting letters of advocacy

  • Physician Rx

  • Face-to-face physician visit notes (must state need for SGD and performed within 6 months of prescription)

Time and Effort for Success!

DSAW's Adult Services

Every year, you provide a lifetime of support to 5,500 people with Down syndrome, other diverse abilities, and their families across Wisconsin through the provision of DSAW's programs and services. Some of those people are Norman, Michelle, and DJ.

Norman has been working with his Daily Living Skills Specialist Mary since March of 2021. He works one-on-one to secure and increase his overall safety and independence when out in the community while maintaining proper boundaries. Mary works with Norman as he volunteers at St. Matthew's Church as a pew tender. He stocks all cards, note pads, and envelopes in the pews. He is very precise and assembly projects are a strength of his.

Mary says, "Norman is a joy to be around! He is very friendly and says hi to everyone he sees. Norman loves to celebrate holidays and his birthday. In 2022 he will turn 60 so we will be celebrating all month long!!

DSAW's staff also works with Michelle and DJ by facilitating dates! Their Client Services Coach Becki helps to facilitate dates as they go to restaurants, make meals together, play games, watch movies, shop for the holidays, and more! On their dates, Michelle and DJ discuss future goals, plan meals, and talk about how to support each other.

In addition, Michelle works independently with Becki on daily living skills like healthy eating, exercise, chores, using money, and cooking. DJ is part of a small group to improve social skills and independence.

Norman, Michelle, and DJ all receive different types of support from DSAW. Our Adult Services department provides customized 1:1 services, small groups, and virtual & in-person group-based instruction and tutoring.

When you make a year-end gift to DSAW, you fund a wide range of life-changing services that support thousands of people across Wisconsin. Will you donate today?

Tim's Full Life

When you donate to the Down Syndrome Association of Wisconsin, you fund life-changing programs and services for people with Down syndrome and related disabilities of all ages across Wisconsin. You provide a lifetime of support. You've heard about our Parent's First Call program, our Children's Services, and our new Tween Club in the Chippewa Valley, all available for people under age 18. DSAW also has the great joy of serving adults with disabilities. Tim is one of the adults who is exceeding expectations because of your support.

Tim is 28 years old. He has been working in the Horticulture Department at the Milwaukee County Zoo for nearly 5 years. He also works at MOD Pizza. Tim lives in his own apartment and recently invited his friends over for a Halloween party (pictured). He loves animals, gardening, playing basketball, and decorating his apartment for the holidays.

Tim is also a participant in DSAW's Person Centered Planning process. This approach helps individuals with disabilities to create a support team, identify their hopes and dreams, and make those dreams a reality. Certified coaches lead the participant and their chosen support team through a futures planning process, developed by the Center for Independent Futures, in which they investigate their dreams, obstacles, and goals, and then create an action plan. Now that Tim's team has created a plan, DSAW's Program Manager Lilly works with Tim weekly to accomplish his goals. They utilize the My Full Life online curriculum to track skill progress.

Some of Tim's goals include owning a dog, traveling to Graceland in Memphis, attending live music concerts, and moving into a bigger apartment. Lilly and Tim work on specific skills like time management, communication, and independent living to help him live a full life. Tim's mom Jackie said that the Person Centered Planning process "was a very helpful experience," that his relationships have grown stronger, and that DSAW "reinforced the importance of working together to help Tim realize his dreams." She adds, "We are very fortunate to have [Lilly] and DSAW working with Tim and with us to plan his future." If you or your loved one are interested in DSAW's Person Centered Planning, please contact Lilly.

Please consider DSAW in your year-end giving. You have the power to help people like Tim live the life of their dreams.

Looking Back on November 2021

What has DSAW been up to the past month? Families in Southeastern WI enjoyed a night with friends at the Country Christmas light show. Skills Training Academy continues to work on living skills at the DSAW Office. Green Bay Buddy Up Tennis is preparing for the end of the fall session. Social Skills Group began an exciting new project, and our interns kept the office running.

Giving Tuesday 2021

November 30th was Giving Tuesday! Thank you to all of our life-changing patrons who participated in this worldwide day of giving and chose to support DSAW. Your donations provide a lifetime of care, instruction, and support for individuals with Down syndrome and related disabilities.

Still want to provide a lifetime of support? Donate here to our Annual Campaign.

DSAW- Fox Cities Small Groups

One of the DSAW- Fox Cities Small Groups spent November making Christmas cards for a local hospital, as well as Turkeys for Thanksgiving!

Country Christmas Lights

DSAW- Southeastern families met up at the Country Christmas light show mid month. Everyone was excited about the new walking path and enjoyed time with friends and family. DSAW was thrilled to host a night of holiday magic for our families!

Program Updates

DSAW- Green Bay Buddy Up Tennis

DSAW- Green Bay loves partnering with Buddy Up Tennis to bring accessible athletics to their area. The chapter covers the cost of participation for families. Here are some highlights from the fall sessions:

Preston and his buddy Charlie were declared Athletes of the Week! Parker, Ollie, and Grayson became “Future Stars.” We are so proud of all players and their buddies!

Skills Training Academy

Skills Training Academy includes scheduled class instruction and hands-on application of skills. Some of the recent focus areas have been time management, making time priorities, addressing envelopes & correspondence.

DSAW- Chippewa Valley Tween Club

Our first Tween Club was a hit! Local tweens enjoyed pizza and friendship at Sammy’s Pizza in Eau Claire. Participants also created cute winter crafts. Our chapter is thrilled at the success of the program and is looking forward to hosting Tween Club on a monthly basis.

Webinar: Healthy Brain Aging for People with Down syndrome

Dr. Elizabeth Head presented on brain aging in people with Down syndrome and some of the ongoing research studies that people with Down syndrome may be interested in participating in. The webinar was very well-attended and we thank Dr. Head for presenting and all who attended.

Watch the recording here!

Small Groups

DSAW Small Groups are still a hit! These organized friend group enjoyed various holiday-themed events this month.

Learn More: DSAW Small Groups

Meet-up at Petzke Park!

Our DSAW friends in Kenosha, Racine, and Walworth counties finally got together again after many months of programming being on hold. The group met up at a beautiful accessible playground called Petzke Park. Two local moms hosted the group and hope to make these outings happen more frequently. Thank you to our KRW friends for coming out!

Social Skills Group

This month, DSAW’s Social Skills Group began an exciting new project! The group is building Calming Tool Boxes. They have spent time learning different strategies (or tools) to help keep their bodies and minds calm when they are stressed!

“Rainbow Breathing” Exercise

Virtual Watch Party: “A Charlie Brown Christmas”

DSAW and MADSS friends logged onto Zoom to celebrate Thanksgiving together! The group watched “A Charlie Brown Thanksgiving” and enjoyed snacks. The group also had some nice discussion about the holidays.

Super Saturdays

DSAW friends visited the Milwaukee Zoo for this month’s Super Saturday! They had an awesome time seeing the animals and spending time out and about in the community.

DSAW Holiday Gift Guide 2021

DSAW put together a holiday gift guide that includes very special businesses. Our list features companies that were started by people with Down syndrome or other disabilities. It also includes businesses in our community and beyond that put inclusive employment first. The products these companies make are high-quality and make amazing gifts, but what makes them extra special is the mission and story behind the company.

Remember that where you shop matters this holiday season and beyond! By purchasing products from businesses like the ones below, you are supporting inclusive employment and the dreams of entrepreneurs and artisans with Down syndrome and related disabilities.

Local Businesses (Wisconsin)

Friendship Bakery Of Wisconsin

  • Fox Point, Wisconsin

  • Friendship Bakery employs and trains adults with special needs as cashiers, bakers, and baristas!

  • Cakes and sweet treats! Can do custom orders!

Gracie's Doggie Delights

  • Watertown, Wisconsin

  • Business started by: Grace Jagler

  • Gourmet doggie treats approved by local veterinarians. Also sells various brand merch.

Poppin’ Z’s Popcorn

  • Green Bay, Wisconsin

  • Family business that employs people with disabilities.

  • All kinds of popcorn in unique flavors! Gift baskets and more!

Sweet Abilities

  • Waukesha, Wisconsin

  • Provides those with different abilities equal working opportunities through a unique and accommodating mobile ice cream business.

  • Hot chocolate bombs and ice cream treats!

Food & Treats

Bitty and Beau's Coffee

  • Big employer of people with disabilities! Employees work as cashiers and baristas in their various café locations.

  • Candles, coffee, apparel, and more!

Collettey’s Cookies

  • Business Owner & Baker: Collette DiVitto

  • Cookies, gift baskets, children’s books, and merchandise!

FURNACE HILLS COFFEE®

  • Employs people with disabilities as coffee roasters.

  • Various blends of gourmet coffee beans and grounds!

Gabi’s Grounds

  • Business Founder: Gabi

  • A gift shop with coffee, treats, merchandise, and more!

Matthew's Bonfire BBQ

  • Creator and Chef: Matthew Hessburg

  • Gourmet BBQ sauces and grilling accessories!

Poppin Joe's™ Gourmet Kettle Korn

  • Owner: Joe Steffy

  • Gourmet popcorn available in 5 unique flavors!

Sweet heat Jam Co.

  • Culinary Artist & Entrepreneur: Nolan Stilwell

  • Unique recipe jelly- many which are spicy!

Fashion

Candidly Kind

  • Designer: Grace Key

  • Grace puts her original artwork on t-shirts, hats, and totes!

Down to Xjabelle

  • Designer & Model: Isabella Springmühl Tejada

  • High fashion and inclusive clothing and accessory brand.

Group Hug Apparel

  • Entrepreneur: Andrew Banar

  • Cool apparel!

John’s Crazy Socks

  • Owner: John Cronin

  • Specialty socks with fun and colorful designs!

SEANESE

  • Owner: Sean McElwee

  • Cute t-shirts with Sean’s sayings on them.

Art & Handmade

Geoffrey's River Bend Gallery & Gifts

  • Photographer: Geoffrey Mikol

  • Geoffrey owns and operates an art gallery in Illinois. You can buy his photography prints or cutting boards, coasters, puzzles, and more!

Just Charlie French

  • Artist: Charlie French

  • Charlie has his very own art studio and sells his original artwork.

Special Sparkle

  • Jewelry Maker: Kelly

  • Various beaded bracelets, keychains, necklaces, and more!

Bath & Body

DaBombs by Morgan Tibbens

  • Owner: Morgan Tibbens

  • Soaps, bath bombs, bath salts, and more!

Mea's Family

Today is Giving Tuesday! After a long weekend of spending, today is a day set aside to give back. By giving to DSAW today, you can provide a lifetime of support to a person with Down syndrome in Wisconsin. To show you the power of your gift, we'd like to tell you about Mea's family from our Chippewa Valley chapter.

Mea comes from a large family - she is the youngest of 7 children! She is 13 years old and happens to have Down syndrome, Type 1 diabetes, celiac disease, as well as Hashimoto's and Graves' disease. Mea's mom Amy says that Mea "is the piece of my heart and soul that I never knew was missing until the day she was born."

Mea was homeschooled in her younger years and now attends a virtual academy. She is very social and with 6 siblings, she is exposed to many people. But Amy noticed that something was just missing. Mea wants a real friend group. And that is why Amy reached out to DSAW about starting a Tween Club. She is "stepping out of her comfort zone because she would do anything to help Mea be successful and fulfilled in life."

All Amy had to do was get on the DSAW website and reach out about starting a Tween Club in the Chippewa Valley. She says, "Before I knew it, we were getting ready to chaperone the first tween get-together!" You provided Amy with the administrative support and funds needed to launch this new group.

Amy told us: "I am so excited about this opportunity. I'm hoping it will grow and we can meet regularly and build friendships...I want Mea to have the same opportunities and experiences as our other typical children."

You gave Mea the chance to meet friends in her community, and you have the ability to do this for other individuals around Wisconsin. When you donate to DSAW, you provide people with disabilities a lifetime of support. Consider giving monthly to DSAW to sustain monthly programs like Tween Club! It is incredibly easy and convenient.

Today's the day. Will you donate to DSAW in honor of Giving Tuesday?

Hunter & Connor

I know you are getting a ton of Cyber Monday emails today and you're super busy shopping for the best online deals, but will you take a few minutes to read about the friendship between Hunter and Connor?

In the summer of 2021, DSAW's Children's Services launched a new small group program to help bring participants together in the community. Hunter and Connor, who had never met previously, were both unsure about these outings. In the first few meetings, both boys worked to find common ground to build a friendship. Their mutual love of Star Wars, lightsabers, and missions to rescue Baby Yoda at the park were all these two needed to forge a bond! Hunter even said that his "favorite part of the summer was playing Star Wars at the park with Connor!"

Throughout the summer, Hunter and Connor learned the importance of supporting your friends in different social settings. They built each other up while the other was struggling, encouraged one another to try new things, and most importantly, they learned that life is always more fun with a friend around.

Connor's mom Brenda shared that "The small group service that DSAW offers was a big help in finding someone with whom Connor could connect during the summer. He and Hunter have a lot of the same interests so it was very easy for them to get along and interact with each other!"

DSAW's Children's Services department offers one-on-one services, programs, and classes for children ages 0-17 with Down syndrome and other diverse abilities. We have virtual programs for children across the state, daily living skills training, and small groups to help our young friends with disabilities exceed expectations and achieve their dreams.

You can provide young children with Down syndrome the opportunity to meet their best friend by making a donation to DSAW on Giving Tuesday (tomorrow!!). Why not!?

Meet Sweet Owen

Happy (almost) Thanksgiving! We at DSAW are so grateful for each and every one of you. You make it possible for people with Down syndrome and other diverse abilities to access a lifetime of support through DSAW. Thank you.

You make it possible for families like Owen's to receive comfort, resources, and support in the moments following a Down syndrome diagnosis. Owen's parents Abby and Colin received their son's prenatal diagnosis in the middle of the pandemic. Abby recounts that a masked doctor, "standing as far away as possible started talking quickly through 'soft markers' and 'heightened concerns.' Big, multi-syllable words came after that [she] later found out meant a cyst in the brain, an enlarged right side of the heart, and possible chromosomal issues."

Because of the pandemic, Abby was alone when she received this diagnosis. She went home to Colin and remembers that "it was a really scary time and we were thrown off...we grieved the baby we had originally pictured then started reaching out for help and resources to understand our new life."

Abby and Colin reached out to DSAW's Parent's First Call program shortly after their diagnosis. They requested to be connected with a trained support parent to help them navigate their uncertainty, and Abby remembers the call distinctly. She asked a million questions, and because of that conversation, "the uncertainty left and [she] felt a lot lighter."

Now, Owen is thriving! "He is the happiest, most joyful, and content little human and his smile brightens an entire room." Abby says that her life is BETTER with him in it! You can follow along with their beautiful family journey on Instagram and Facebook: @abbyrosegreen

When you make a gift to DSAW on Giving Tuesday (11/30), you offer support to families in the moments following their diagnosis. You start their lifetime of support with hope and love. Will you give that gift of hope to a family this holiday season? You can even designate your donation to a specific DSAW chapter!

PS - Getting good deals on Black Friday and Cyber Monday? Consider donating your savings on Giving Tuesday!

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.

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!

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!

Creative Corner

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

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.

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.

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!

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!

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!

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!

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!

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

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!

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!

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 Alert: Important Disability Legislation

Important disability bills are advancing through the legislature but need a final push from disability advocates like you before they can be sent to the Governor and signed into law! Read about these two important bills and how you can help below!

Equal treatment of reports of abuse and neglect (SB395/AB 400)

  • The state Senate passed its version of the bill Monday October 25th!

  • Now the state Assembly must schedule a floor vote and pass SB 395/AB400.

What does this bill do?

  • This bill makes a technical change to make sure reports of abuse are equally investigated regardless of a person’s age.

  • Current law required Adult Protective Services (APS) to investigate reports of abuse for adults 60 and over.

  • Current law allows counties discretion on whether to investigate reports of abuse for people ages 18-59 living with disabilities, known as Adults at Risk

  • Bill has no fiscal impact

How to help:

  • Call Rep. Jim Steineke, Assembly Majority Leader and Chair of Assembly Rules Committee, at (608) 266-2418 (Rep.Steineke@legis.wisconsin.gov)

  • Call Rep Robin Vos, Assembly Speaker Assembly Majority Leader and Vice-Chair of Assembly Rules Committee, at (608) 266-9171 (Rep.Vos@legis.wisconsin.gov)

  • ASK THEM TO SCHEDULE AN ASSEMBLY FLOOR VOTE FOR SB 395/AB 400 THIS FALL SESSION

  • Thank your state Senator for passing SB 395

Improve access to ABLE savings accounts (SB 158/AB 167)

  • The state Senate passed its version of the bill June 9th!

  • Now the state Assembly must schedule a floor vote and pass SB 158/AB 167.

What does this bill do?

  • Direct the state to study establishing a Achieving a Better Life Experience (ABLE) program so people with disabilities and families can earn and save more either directly or by entering into an agreement with another state or alliance of states

  • This bill will take concrete steps to make ABLE accounts more accessible for Wisconsin families.

  • ABLE accounts allow people who have a disability that developed before age 26 to have a tax-exempt savings account set up to cover allowable expenses (like transportation, assistive technology, personal support services, education, etc.).

  • ABLE accounts do not affect eligibility for Supplemental Security Income (SSI) or Medicaid.
    Bill has no fiscal impact

How to Help:

  • Call Rep. Jim Steineke, Assembly Majority Leader, at (608) 266-2418 (Rep.Steineke@legis.wisconsin.gov)

  • Call Rep Robin Vos, Assembly Speaker, at (608) 266-9171 (Rep.Vos@legis.wisconsin.gov)

  • ASK THEM TO SCHEDULE AN ASSEMBLY FLOOR VOTE FOR SB 158/AB 167 THIS FALL SESSION

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Advocacy in Action

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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

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!

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Down Syndrome Association of Wisconsin
Telephone: 414-327-3729
Fax: 414-327-1329
Email: info@dsaw.org

 

Headquarters Mailing Address
1214 Kavanaugh Place
Wauwatosa, WI 53213

Headquarters Office Hours:
The DSAW office is open most days for programs and classes. DSAW staff is currently working in a mixture of in-person and remote work, so please call or email to set up an appointment before stopping by!

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