Our La crosse 20th Annual Awareness Walk received great news coverage from WKBT News 8000. To watch the whole story, follow the link:
La Crosse Awareness Walk featured on News WXOW
Our La Crosse 20th Annual Awareness Walk received great news coverage from WXOW news 19. To watch the whole story, follow the link:
South Central Awareness Walk receives local news coverage
Down syndrome Association of Wisconsin- South Central Awareness Walk
Thank you: Our Awareness Walk received some news coverage from WMTV NBC 15. To see the whole story, follow the link:
Syble Hopp student featured in Times Square for Down Syndrome Awareness Month
Our friend Preston Taylor was featured on screens in Times Square on Sept 17, 2022, thanks to National Down Syndrome Society! The video presentation, featuring 500 self-advocates from across the country, and was live-streamed on their Facebook page at 8:30AM that same day. Our friend Norman from the Milwaukee area will be featured as well! To watch the whole story, follow the link:
Local teenager with Down Syndrome wins body building pro card!
Our friend Fiona Daniels took home second place in two categories at her first national bodybuilding competition! Fiona is also the first teenager with Down syndrome in the country to earn a pro card in bodybuilding. Congratulations Fiona!! For the full story follow the link below:
Local teenager with Down Syndrome takes 2nd in national bodybuilding competition (news8000.com)
Looking Back on September 2022
Happy Down Syndrome Awareness Month! For now, we are looking back at a busy September! We hosted four of our eight Down Syndrome Awareness Walks last month and had a great time celebrating our Down syndrome community. Our fall programs began, and participants were busy with Skills Training Academy, Rad Rec Events, and more! Read on to learn all about it!
Down Syndrome Awareness Walks
This September, we had four of our Down Syndrome Awareness Walks in Central Wisconsin, Green Bay, Chippewa Valley, and the Statewide Down Syndrome Awareness Walk at the Milwaukee County Zoo! Each year, DSAW hosts eight Down Syndrome Awareness Walks across the state of Wisconsin, drawing more than 8,000 walkers, volunteers, donors, sponsors, and partners across the State under one collective mission – to raise awareness and promote inclusion, diversity, and acceptance of people with Down syndrome in our communities and in our lives. We are immensely proud of the success of our Walks this year — check out photos from the four September Walks below!
Wisconsin Economic Development Corporation Summit
Our President and CEO Dawn Nuoffer appeared at the Wisconsin Economic Development Corporation's Wisconsin Economic Summit to speak about Building a Robust Workforce. Dawn emphasized that many statistics demonstrate how incorporating more people with disabilities into the workforce benefits everyone!
Skills Training Academy
Our fall programs began at the start of September, and Skills Training Academy in Southeastern WI is happy to be back! Skills Training Academy participants are using the My Full Life curriculum platform to track and log their progress on skill-building in the following areas: Connections, Fun & Talents, Wellness, Getting Around, My Place, Community Engagement, Earning My Way, and Lifelong Learning.
Wellness 360
Wellness 360 also returned in Southeastern Wisconsin this September! This course works on Daily Living Skills while bringing a wide range of recreational activities to people of all abilities ages 18+. So far, Wellness 360 has visited a honey farm, play pickleball, made fresh apple pies, gone hiking, and more!
Small Groups
Our Respite Small Groups are having a great time this fall! In September, we went mini golfing and played billiards! One of our Friday groups also joined the Rad Rec Events group for a dance party!
Rad Rec Events
Participants in our Rad Rec Events series have been very busy — going bowling, watching DC League of Super-Pets at the theater, painting Kindness Rocks, attending Glow Night and competing in a rowing contest to raise money for adults with disabilities, apple picking at Apple Holler and dancing at Lifetime Fitness followed by lunch at the Olive Garden. Everyone is making friends and having fun in the community!
Looking Back on July 2022
We’re looking back at July! It’s been a busy month! We’ve hosted meet-up events, social events, and fundraising events across the state! Our EXTRAordinary Camps have been taking full advantage of the summer and celebrating Carnival Week and Shark Week, among other themes. We now have 10 small groups running every week in Southeastern WI! Read on for all the details!
Fox Cities Park Meet-Up
DSAW-Fox Cities had our 2nd summer park meet-up at the Sherwood Splash Pad this month! It was a bit cool for the kids at the splash pad, but everyone still had a great time. Our next meet-up is on August 20th at Erb Park!
South Central Small Group!
DSAW-South Central has started our first-ever in-person small group, and they are quite the musical talents! We are excited to continue the growth of our services in the greater Madison area. Email katieg@dsawfamilyservices.org if you are interested in more information on what’s coming to South Central WI!
South Central Golf Outing
DSAW-South Central also held an extremely successful Golf Outing this July at The Oaks Golf Course. Golfers had the chance to beat WKOW's senior chief meteorologist Bob Lindmeier on a hole to be entered into a prize drawing. You can read more about it at WKOW 27! It was a wonderful day of golfing in support of DSAW -- special thanks to all of our staff and volunteers that made it possible and to our attendees and sponsors for their support!
Southeastern WI Down Home BBQ
This July, we hosted our annual Down Home BBQ at DSAW HQ in West Allis. It was a great summer day filled with food, music, games, water fun, crafts, and more! We are so grateful to our volunteers that made the day run smoothly!
Southeastern WI Milwaukee Milkmen Game
This month, DSAW had a perfect day to be featured as the Milwaukee Milkmen non-profit of the game! We gathered at Franklin Field to watch the Milkmen take on the Sioux City Explorers, and our friend Nate threw out the first pitch and got it right over home plate!
EXTRAordinary Adventures Camp!
Our North Camp has been filled with lots of fun and learning! We’ve had field trips to the science museum, the beach, wetland reserve, and bowling! Participants have been making paper, lemon volcanoes, painting, swimming, and much more.
We had so much fun at MKE camp this month! Week one in July was Carnival Week where all participants got to play different carnival games, make their own snow cones, and got to be apart of an Improv performance with Bob Orvis. Week two for this month was Shark Week where they learned about all different kinds of sharks and summer safety, learned about big emotions, played pin the fin on the shark, and played shark volleyball. Week three was Games Galore where they learned about respect, decision-making skills, and got to play a lot of different games. The last week for this month is Water Week where they got to have a water day at DSAW, water gun painting, water balloon fight, sponge relay races, played duck duck splash, and so much more!
East Camp is having SO much fun playing games, celebrating Carnival Week & Shark Week, and our second field trip to the waterpark! We invited in some new friends this month to our camp and taught them all about teamwork and being a good sport!
Rad Rec Events
We have been having a blast in our Rad Rec events which included Improv with Bob Orvitz, a Chinooks baseball game, swimming at Muskego Park and at Ingleside indoor waterpark, hiking at Lapham peak, bowling and a dance party at Lifetime Fitness. Thank you to all who participated and to the staff who have helped with the fun!
Social Skills Group
Social Skills groups this month learned how friendships are like flowers and then visited the Milwaukee Domes, learned about respect and then played outdoor games at the office, learned about lifting up their friends while knocking down pins at the bowling alley, and learned about the importance of quality time while hanging out with their friends at the local park!
Small Groups
We now have 10 small groups up and running each week! Our small groups have been busy with art projects, playing pool, picnics in the park, bowling, mini golfing and more! Want to get involved with a small group? Contact info@dsaw.org for more info!
Looking Back on June 2022
We’re looking back at June! It was a busy month all across the state with the kick-off of our summer programming, several fundraiser events, and more fun! DSAW-South Central started their first-ever in-person program, while Fox Cities hosted their 2nd Annual Down for Golf Outing! EXTRAordinary Adventures Camp learned about space, music, and more this month and went out for a bowling trip. And so much more! Read on to learn more.
Green Bay Friendship Group
In Green Bay, the adult friendship group enjoyed a day in the sun and went Frisbee Disc Golfing! We will be hosting more of these friendship group events in Green Bay in the future! Please email abigail@dsaw.org for info or to sign up!
Sheboygan Music & Movement Spring Sessions
DSAW-Sheboygan is teaming up with Take Note Studio to provide free music and movement lessons for children with DS under 7! This program had its first few sessions this month and everyone is enjoying moving and grooving. The chapter will host an adult version of this program SOON! Please email abigail@dsaw.org with any interest.
DSAW-Fox Cities News
June was an exciting month for the Fox Cities! We kicked the month off by taking part in the Little Chute Cheesefest Parade! myTeam Triumph, an incredible nonprofit out of Howard, WI joined us with their race chairs to give participants a break from walking in the heat. We had such a blast!
The Fox Cities chapter closed out June with our 2nd Annual Down for Golf Outing! What an amazing turnout we had! Special thanks to the Vosters & Knackers families for hosting this wonderful event - we had an entire afternoon and evening of golf and fundraising. We haven’t finalized fundraising numbers yet, but we are hoping to beat last year's total by at least $5!
DSAW-Fox Cities Meet-Ups
Our first summer park meet-up was held on Saturday, June 18th at the Washington Park Splash Pad in Neenah! Families joined for a casual morning of fun and friendship. We hope to continue growing this event, with our next park meet-up scheduled on Saturday, July 16th at the Sherwood Park Splash Pad. Join us!
Our first Parent’s Night Out of summer (right) was held on Sunday, June 26th at Wilder's Bistro. Several parents celebrated an evening out while enjoying good conversation and food. Our next night out is scheduled for Sunday, July 31st at Cannova's Pizzeria in Neenah. Please RSVP to attend!
South Central Begins In-Person Programming!
No pictures yet, but we're off to a great start with our first ever in person class in South Central Wisconsin! Our Social Skills class is gathering every Thursday, and Katie, our Program Coordinator, says the class is “teaching me as much as I'm teaching them :)”. Are you in the greater Madison area? Join our new in-person programs!
Summer Rad Rec Events have been going well! We have done events such as mini golfing, yoga, visiting Mayfair Mall, and bowling. We have more awesome Rad Rec Events planned for July — find more info here!
MKE Social Skills groups participated in yoga and have went on two outings this month including Mini Golf! Social Skills and Rad Rec Events also collaborated on a trip to Retzer Nature Center!
Romine's and Shepherd's hosted a pool tournament in the Milwaukee area in memory of Dan Hau and to raise money for DSAW!! Thank you to the Powers family, Kevin Stanelle, and Dave Dahle for organizing this wonderful event that raised $5,000 for DSAW!
EXTRAordinary Adventures Camp
MKE EXTRAordinary Adventures Camp, DSAW’s 2022 summer camp, is still having lots of fun and making new friends!! Participants learned about all things space, music & movement, and sports this month! Each group went on their first outing which was bowling and had an awesome time.
EXTRAordinary Adventures Camp East is making new friends and learning about space and music! The first field trip to the JCC waterpark was very successful for a 90-degree day! SO many smiles (& hugs)
Dinner and a Movie
At Dinner and a Movie, participants enjoyed a delicious meal together and watched Hook. This is a FREE event offered in Southeastern WI the last Wednesday of every month! Find out more about July’s Dinner and a Movie here!
A Message from DSAW's President/CEO
Good afternoon,
I am writing today to share some exciting news. Governor Tony Evers announced yesterday that DSAW was awarded a Workforce Innovation Grant from the Wisconsin Department of Workforce Development and the Wisconsin Economic Development Corporation.
The Workforce Innovation Grant Program is a part of the American Rescue Plan Act (ARPA) in response to the COVID-19 pandemic. These funds are intended to address pressing workforce development challenges related to the negative economic impacts of COVID-19.
Only 19% of people with disabilities are employed (USDL, 2022), and the COVID-19 pandemic has significantly impacted their quality of life. But the good news is plentiful. The GDP could be boosted up to $25 billion dollars if just 1% more people with disabilities joined the labor force (Accenture, 2018). In addition, employers who hire people with disabilities consistently tout benefits like improved profitability and competitive advantage.
With this grant, DSAW will work within a 350+ partner network to launch Think Ability Wisconsin (TAW), which will address workforce issues for people with intellectual and developmental disabilities (PWIDD) in counties across our state.
The project will include:
The development of the Think Ability Wisconsin online transition resource center reaching families well before middle school
The creation and expansion of digital learning platforms to teach job skills
The expansion of employer-embedded, on-the-job training and placement programs in manufacturing, hospitality, and other accessible industries
The expansion of workforce development and wraparound services in underserved regions across WI
The formation of partnerships and coalitions across the state to address barriers that keep PWIDD unemployed and in poverty
Targeted awareness campaigns to change perceptions of people with IDD in the workforce
Employer education to increase job access and expectations
We believe that this whole-person, whole-society approach to Wisconsin’s workforce issues is exactly what’s needed to forever impact and expand opportunities for all of Wisconsin’s employers and people with IDD.
We are so excited, so humbled, and so incredibly grateful for the opportunity to help elevate the employment landscape for people with disabilities in our state. Our leadership team is working to roll out plans for implementation. In the meantime, we are thrilled to share this news and celebrate with you!
Click here to read the official press release from the office of Governor Tony Evers.
Warmly,
Dawn Nuoffer
President/CEO
Down Syndrome Association of Wisconsin
Looking Back on May 2022
We’re looking back at May! We have so many fun programs and events planned for the summer, but here’s a recap of what was going on this month. Wellness 360 and Skills Training Academy wrapped up their spring sessions in Southeastern WI, small groups celebrated the beginning of summer, and our clients accomplished more wonderful milestones! Read on to learn more!
DSAW Enrichment Grant
Our Enrichment Grant Program provided a grant for this DSAW family to build a fence to safely play outside this summer! The Enrichment Grant Program provides financial support to help offset the cost of items or services that can benefit the quality of life and development of a person with Down syndrome. Grants should be specific to individuals with Down syndrome -- examples include therapies, educational events, adaptive technology, and educational programs. Find more information and apply for an Enrichment Grant here.
Client Spotlight
We want to celebrate some awesome accomplishments from two of our DSAW clients during the month of May. Brittany invites us to celebrate with her client Griffin, as he graduated high school this month! Also, Becki brought a group to see Katya star in East Side Story at Waukesha Civic Theatre with the ACAP PlayMakers.
Skills Training Academy
STA participants have been having fun all month long learning about each other’s Fun & Talents! Some activities have been making a tornado in a jar, making moon sand, glue art, music bingo, sports day, making frozen blueberry yogurt bark, fashion design, games, making bracelets, drawing, and dancing! Skills Training Academy is a hands-on program occurring 2 days per week at DSAW HQ with small group daily living skills, computer/media development, fun activities, games, and so much more!
Wellness 360
May was our last month of this session of Wellness 360, and we learned about how to continue healthy lifestyles after Wellness 360 ends! We also partnered up with Nicolet High School for a big game day of kickball, red light green light, and showed great teamwork to get the tire up the hill to watch it roll down! Wellness 360 is our new unique mind and body group fitness class in Southeastern WI. It offers participants the opportunity to participate in workouts and learn all about whole person wellness and how to incorporate it into their lives!
Saturday Fun Days!
In May, our Saturday Fun Days brought us together in Southeastern WI and Fox Cities to celebrate the arrival of summer! In Southeastern WI, we held our Saturday Fun Day at The Springs Waterpark at The Ingleside Hotel for a day of swimming and slides. In Fox Cities, we had a summer celebration with crafts and treats!
Small Groups
DSAW Small Groups across the state had a busy May! One of our small groups went mini golfing and painted gifts for their moms at Vibez Art Studio in Greendale. Another group in Fox Cities celebrated “April Showers Bringing May Flowers” with spring-themed crafts. Another one of our groups volunteered three times at an elementary school in Wauwatosa!
Summer Programs Registration
Summer programs registration is now open! This year, we are offering DSAW Connects virtual classes for the entire state of Wisconsin and in-person programming in Southeastern WI, Fox Cities, and South Central WI. Summer programming at DSAW runs June 13th through August 26th unless otherwise noted.
Looking Back on April 2022
We’re looking back on April! As the weather warms up, we are preparing for summer programs — registration is open now! This month, we hosted a great Down Syndrome Summit with National Down Syndrome Congress and UW-Stevens Point, learned about teamwork in Social Skills Group, and practiced our Culver’s orders in the Fox Cities. Read on to learn all about it!
NDSC Down Syndrome Summit
We had a fantastic Down Syndrome Summit with National Down Syndrome Congress and UW-Stevens Point on Saturday, April 23rd! We are so grateful to all of the AMAZING members of the DSAW community and the broader disability community in Wisconsin who attended and made this program a big success.
Thank you to all of our wonderful speakers for sharing their resources and knowledge with us: Susanna Miller-Raines from Think College, Paige Parr from Project SEARCH, and Chris Newlon and Tamara Pursley from National Down Syndrome Congress.
Thank you to the parents and community members who make up the DSAW-Central WI Advisory Board for their influence and effort in planning this event and for their commitment to community education.
Thank you to National Down Syndrome Congress and their Rural Outreach Program for making this day happen and providing resources for all attendees.
Thank you to UW-Stevens Point for collaborating with DSAW and NDSC and donating space for our event.
Culver’s Outing
In the Fox Cities, our staff organized a group outing in which participants enjoyed a meal at Culver's! Participants pre-planned their meals and practiced ordering and paying.
Participants proudly followed the steps, and after they ate, self advocate JP typed on his talker without anyone noticing and walked up to a Culver's employee. JP was trying to show him his iPad screen. The DSAW group asked him to come sit back down and, when returning to the table, asked what he was trying to show the employee. JP showed the screen of his talker, and he had typed, “John Paul Job.” He was pointing at the table, as to say, “here”. “I want a job here” 💙💛
Social Skills Group
DSAW’s Social Skills Group is a hands-on program occurring 1 day per week at DSAW HQ in Southeastern WI with small group daily living skills, fun activities, games, and so much more! In April, Social Skills Group learned about teamwork and wrote some positive words to spread kindness around DSAW!
Skills Training Academy
Skills Training Academy is a hands-on program occurring 2 days per week at DSAW HQ with small group daily living skills, computer/media development, fun activities, games, and so much more! This month, STA participants have been learning about how to make conversations with peers, understanding body language and facial expressions by playing a telephone game, having 1:1 conversations, and participating in a Lego communication challenge activity. STA participants also made some spring flowers to help brighten up the office!
Wellness 360
Wellness 360 is our new unique mind and body group fitness class in Southeastern WI. It offers participants the opportunity to participate in workouts and learn all about whole person wellness and how to incorporate it into their lives!
Saturday Fun Days!
Children's Saturday Fun Day had fun enjoying the outside weather playing kickball, basketball tic-tac-toe, and drawing with chalk. They also played group games, did a spring craft, and sang some karaoke! Adult’s Saturday Fun Day got to visit the Milwaukee County Zoo!
Creative Corner
Creative Corner is a FREE virtual art class that will use everyday objects around the house in different craft projects. This month, Creative Corner made some crafty Easter bunnies!
Summer Programs Registration
Summer programs registration is now open! This year, we are offering DSAW Connects virtual classes for the entire state of Wisconsin and in-person programming in Southeastern WI, Fox Cities, and South Central WI. Summer programming at DSAW runs June 13th through August 26th unless otherwise noted.
Looking Back on March 2022
We’re looking back on March! Can you believe it’s already April?! We started spring with even more fun classes, events, and gatherings all over Wisconsin! DSAW chapters around the state celebrated the Best Day Ever — World Down Syndrome Day, St. Patrick’s Day, and a lot of other awesome outings and classes!
World Down Syndrome Day
This month, we got to unite with the Down syndrome community around the world for World Down Syndrome Day! Since people with Down syndrome have 3 copies of the 21st chromosome, 3/21 is set aside as a global day to raise awareness, acceptance, and access. DSAW’s WDSD theme celebrated the Best Day Ever and all of the things that make our community the Best Ever — from meaningful jobs to fun-loving friendships to amazing dreams.
DSAW-Chippewa Valley celebrated with a full day of fun at Action City Trampoline Park and Chaos Water Park! Over 200 people celebrated with us!
DSAW-La Crosse threw an awesome WDSD party at Myrick Park!
DSAW-Central WI teamed up with our local GiGi’s Playhouse for a WDSD celebration at Rainbow Play Systems!
In Northeast WI, we planted flowers to see how they will grow for 21 days!
Super Saturday
Our Super Saturdays continued with a bowling party in March! Super Saturday is a monthly outing for self-advocates 18+ in Southeastern Wisconsin. This month, we put on our bowling shoes and visited Alpine Lanes in Muskego. Look out for more info on April’s Super Saturday coming soon!
Skills Training Academy
DSAW’s Skills Training Academy is a hands-on program occurring two days a week at DSAW HQ! This program focuses on daily living skills, computer/media skills, activities, games, and much more! One of our recent Skills Training Academy topics was connections and friendships. Participants learned and demonstrated how to be a good friend, and everyone took the 5-Finger Friendship Challenge!
St. Patrick’s Day
We had the luck of the Irish on St. Patrick’s Day this year! One of our online courses completed a shamrock craft for the holiday, one of our small groups celebrated with lunch and dancing, and Fox Cities Saturday Fun Day had a scavenger hunt for treasure and played bingo!
Wellness 360
Wellness 360 is our new unique mind and body group fitness class in Southeastern WI. It offers participants the opportunity to participate in workouts and learn all about whole person wellness and how to incorporate it into their lives! This month, Nicolet joined Wellness 360 for some cardio drumming!
Cookies & Canvases
DSAW-Fox Cities hosted a Cookies and Canvases activity in March! Everyone created a beautiful piece of art on their canvas and enjoyed some cookies while they did it!
Dinner & a Movie
DSAW-Southeastern WI now hosts a monthly Dinner & a Movie at DSAW HQ! Join us on the fourth Wednesday of the month for this fun night out for adults 18+ with Down syndrome. April’s event is on the 27th!
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
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!
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.
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.
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.
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!
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.
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.
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: 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?
How To Include Those With Disabilities
Impact of disability inclusion- GSDRC Applied Knowledge Services
“Implementing Inclusion:” National Down Syndrome Society
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.
"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!
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.
Small Groups
DSAW Small Groups are still a hit! These organized friend group enjoyed various holiday-themed events this month.
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!
Watertown, Wisconsin
Business started by: Grace Jagler
Gourmet doggie treats approved by local veterinarians. Also sells various brand merch.
Green Bay, Wisconsin
Family business that employs people with disabilities.
All kinds of popcorn in unique flavors! Gift baskets and more!
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
Big employer of people with disabilities! Employees work as cashiers and baristas in their various café locations.
Candles, coffee, apparel, and more!
Business Owner & Baker: Collette DiVitto
Cookies, gift baskets, children’s books, and merchandise!
Employs people with disabilities as coffee roasters.
Various blends of gourmet coffee beans and grounds!
Business Founder: Gabi
A gift shop with coffee, treats, merchandise, and more!
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!
Culinary Artist & Entrepreneur: Nolan Stilwell
Unique recipe jelly- many which are spicy!
Fashion
Designer: Grace Key
Grace puts her original artwork on t-shirts, hats, and totes!
Designer & Model: Isabella Springmühl Tejada
High fashion and inclusive clothing and accessory brand.
Entrepreneur: Andrew Banar
Cool apparel!
Owner: John Cronin
Specialty socks with fun and colorful designs!
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!
Artist: Charlie French
Charlie has his very own art studio and sells his original artwork.
Jewelry Maker: Kelly
Various beaded bracelets, keychains, necklaces, and more!
