Meet a DSAW Leader: Jenny

Hi! I am Jenny Levendoski, a member of DSAW-COTH-Greater La Crosse Area.  I attended my first Down Syndrome Awareness Walk (formally Steppin Up for Down Syndrome) in 2010.  It was the day I was released from the hospital, a week after giving birth to my beautiful daughter, Eliza.  She was unable to attend that first party due to her extended hospital stay but has more than made up for it now.  We are usually the first to show up and the very last to leave the party. 

I do not have an official title within our chapter, but I can say I do a little bit of everything. I have helped with the Down Syndrome Awareness Walk, organized social events, and organized speaker events. My current focus in on member engagement and collaborating with our amazing local non-profits.  Through these experiences, I met a wonderful group of individuals that I probably never would have met if we were not on this DS journey together.  Not only did these people become my friends, but also an amazing source of information. 

My dream for Eliza and her friends is for them to be happy, healthy, independent, and productive/included members of society. This is why I am an active member of DSAW-COTH-GLA! Not only do I believe individuals with disabilities should have the same opportunities as those without, but they should be fully included. 

Looking Back on April 2017

Parent's First Call

On April 1st, we hosted 13 incredible parents for a Parent's First Call training at Children's Hospital of Wisconsin in Milwaukee. They spent the entire day learning how to be Support Parents to new and expectant parents, and are ready to pay it forward through friendship, advice, and a listening ear. These parents will change the world. 

A special thank you to Robin Mathea and Parent to Parent of Wisconsin for their continued partnership in making this program a success. And thank you to Emily Moe, geneticist from Children's Hospital and member of the DSAW Medical Outreach Committee, for leading us through the Prenatal Diagnosis section of our training.

We are very excited to see the incredible results of our Parent's First Call Program since its "official" launch this spring. Over the last year, DSAW has received an average of two referrals per month. In April, due to the amazing support of the community and our billboard in Milwaukee, we were contacted by 8 new/expectant parents looking for support!!

Finally, we are hoping to enable more members to "give back" to new and expectant parents through a book drive. If you have gently used baby books that you would like to donate to a new family, please mail them to the DSAW office (11709 W Cleveland Ave, Suite 2, West Allis, WI 53227). You are welcome to write encouraging and hopeful notes in the books.


Milwaukee

Young Leaders Bootcamp
Self-Advocates joined us for a fun month of Young Leaders Bootcamp. This month's topic was planting and gardening. We planted food and other plants in the beds behind the DSAW Office. We'll be tending these beds all summer, and will (hopefully!) be eating the harvest this fall. Consider signing up for our FREE May Bootcamp on Storytelling.

Cooking with the Kiddos
We had a great time at Cooking with the Kiddos in April! This class is a great time of family bonding, plus a free meal... what could be better? This month we cooked up some delicious sliders. Join us next month.

Motor Skills Playgroup
Three new families joined us for Motor Skills Playgroup at the State Office this month! This group is a fun chance for children to learn occupational therapy skills in a free environment, while parents enjoy coffee and each other's company. Consider joining us next month!

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

Family Zumba
We had an AMAZING time at Zumba in April. We have a volunteer Zumba instructor who makes the class fun for individuals of all ages and ability levels. Join us in May!

Family Activity Day
We had a great time painting pottery at Family Activity Day. We had two new families join us! Consider signing up for May's Family Activity Day.

Family Movie Night
We had a blast watching Toy Story together at our April Family Movie Night. We brought sleeping bags and snuggled in for this family-favorite. Join us in May for Minion Movie!

Club DSAW
Self-Advocates had a great time at Club DSAW Mexican Fiesta this month! We had a taco bar, virgin margaritas, Mexican pastries, and a make-your-own Guacamole station. Join us the last Saturday in May for a Club DSAW nature day!


Chippewa Valley

DSAW-Chippewa Valley hosted a Family Bowling Event on April 23rd. More than 50 people attended!! We had a great time bowling, eating pizza, and hanging out with other area families.


Green Bay

DSAW-Green Bay hosted their monthly playgroup at Kidz Town at the beginning of the month. Families had a great time enjoying the Kidz Town amenities and each other's company.

We also hosted our monthly Mom's Night Out at Legends in Howard. 5 moms attended and 2 were new to Mom's Night Out. We enjoyed a fun night of laughter and conversation!


La Crosse

On April 15, Tai Hanna (Sally Davis, mom), Haley Hellerud (Megan Hellerud, sister), Jenny Levendoski (volunteer) and Jamie Frausto (volunteer) saw the movie Beauty and the Beast at Marcus Theaters in La Crosse.  After getting our soda and snacks, the group was amazed to find the recliner seating.  Haley and the gang loved the chairs.  After the movie, we walked to Pizza Hut for pizza.  We were joined by our friend, Aaron Hulse (Teresa Hulse, mom).  The Self-Advocates sat in one area of the restaurant, while the parents and caregivers were banished to another part of the restaurant.  After the event Haley said, "My favorite part was the movie!  It was a good movie.  I liked hanging out with the boys and would like to do that again!"  If you have a great idea for a Self Advocate Outing or would like to be on the Self Advocate Committee contact Morgan Brzank at morganbrzank@gmail.com.      

We also hosted our monthly Music Group. Consider joining us for this FREE group in May! 
 


Sheboygan

DSAW-Sheboygan hosted a Parent's Night Out on April 21st at the Green Dragon. 7 parents with kids of all ages attended and had a great time getting to know one another. Thank you to everyone who came!

Join us for a Family Bowling Event on May 20!


Wausau

DSAW-Wausau hosted an Easter Egg Hunt & Brunch on April 8th. Thank you to the Raschka Family for hosting us on your beautiful farm! More than 10 families attended this new event. 

Join us next month for a Mom's Coffee Date on May 4th. Meet other area moms and discuss upcoming events.

Looking Back on March 2017

The Power of Collaboration

This month, in honor of World Down Syndrome Day, we were proud to host and be part of events around the state that raised awareness and acceptance of our amazing friends with Down syndrome.

WIDSAC Event
As part of the World Down Syndrome Day Celebration, DSAW and the other members of the Wisconsin Down Syndrome Advocacy Coalition hosted a roundtable discussion on able accounts, policy, and employment initiatives at the GE Research Park Auditorium. Speakers included Wisconsin State Rep. John Macco, NDSS President Sara Weir, Arc Wisconsin State Director Lisa Pugh, and other professionals. There were also many Self-Advocate representatives from DSAW! A special thank you to Wisconsin Upside Down, MADSS, GE, and Jennifer Janowski for coordinating this wonderful event and discussion.

Advocacy Wine Dinner
In addition, Wisconsin Upside Down hosted a Wine Dinner with representatives from DSAW and MADSS present in support of our collective advocacy efforts. Sara Weir from the National Down Syndrome Society was present as the event's special guest. We are very inspired and feel ready to take on the future after this amazing event.

Medical Professional Training
DSAW trained more than 80 future medical professionals at Marquette and Medical College of Wisconsin at the end of March in partnership with the Children's Hospital of Wisconsin Down Syndrome Clinic. Students were given up-to-date information on Down syndrome and learned about delivering a fair and compassionate Down syndrome diagnosis.

Statewide Peer Sensitivity Trainings
DSAW continued to host Peer Sensitivity Trainings around the state this month, especially surrounding World Down Syndrome Day. Already this year, more than 200 students have been trained on what Down syndrome is, what it isn't, and how to be a good friend to someone with Down syndrome. 

 

And of course, World Down Syndrome Day Celebrations!!
The DSAW family certainly knows how to celebrate World Down Syndrome Day in style! Members across the state rocked their crazy socks, handed out awareness cards, celebrated at local DSAW events, and raised funds in honor of their loved ones. We loved partying with you all month long!! Here are a few pictures of our favorite socks from 3-21:

 

 

 

 

 

Ben's Cycle Fundraiser
Thank you to our friends at Ben's Cycle for hosting the 2nd Annual Indoor Century Ride to raise money for DSAW. The day raised more than $3,000 to support DSAW's programs and services around the state. You all amaze us with your dedication and amazing athletic talents!!

 


Fox Cities

In addition to the monthly Mom's Night Out, DSAW-Fox Cities co-hosted a KITE Conference with SOAR and WisconSibs. This was a great chance to learn about disability-related topics from various presenters, including many DSAW staff.

DSAW-Fox Cities also hosted their annual World Down Syndrome Day event at Monkey Joe's. Families had an amazing time!

In the spirit of raising awareness, DSAW-Fox Cities also launched their awareness billboard campaign. See the photo below.


Green Bay

DSAW-Green Bay had a busy month of programming in March. They hosted their monthly Kidz Town playgroup on the first Saturday of the month which was well-attended by area families.

DSAW-Green Bay also participated in two movie events this month. One event, hosted by Journey Community Church, was a showing of 'Where Hope Grows' for adults, and included free childcare. The event was a fundraiser for DSAW-Green Bay and was a great success!

The other movie event was our World Down Syndrome Day event on Saturday, March 16th. We saw 'Sing' at De Pere Cinema and had a great time celebrating World Down Syndrome Day.

We also hosted the annual Live Like Ava event on Friday, March 24th at Green Bay Fusion. This was a great evening of honoring the life of Ava Moody while enjoying the company of other families.

Our month wrapped up with our monthly Mom's Night Out at 1919 Kitchen & Tap. We had a lot to discuss and be thankful for after a busy month!


Kenosha, Racine and Walworth

DSAW-KRW hosted its first Parent's Night Out at the beginning of the month. We had a great turnout and are excited for many more DSAW-KRW events to come in 2017! Click here to see our other upcoming programs and events.


La Crosse

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DSAW-COTH-GLA hosted its annual World Down Syndrome Day Event at the Onalaska Omni Center on Sunday, March 19th. Families enjoyed snacks, games, crafts, activities, and custom World Down Syndrome Day t-shirts and posters! 

 

We also hosted a Parent's Night Out. On March 25, a fun-spirited group of parents came together for the first Parents Night Out of 2017 at Java Vino in La Crosse.  This eclectic group included Jenny Levendoski and Jamie Frausto (parents of Eliza) , Andrea and Jerry Finney (parents of Levi), Libby and TJ Teegan (parents of Jack), Diane Falter (parent of Cecilia) , and Alicia Sykes (parent of Quincy).  It was great to come together to talk about our Heroes with Down syndrome.  We all came from different backgrounds.  We may never have crossed paths if we didn't have a loved one with Down syndrome.  People with DS are more alike than different, so are the parents/ caregivers of people with DS.  We all love someone with Down syndrome.  We all want to see people with Down syndrome be loved and accepted.  We all need to work together to benefit our Heroes with Down syndrome.  See you at the next event.  


Sheboygan

DSAW-Sheboygan and Surrounding Counties hosted an AWESOME World Down Syndrome Day Celebration at Blue Harbor Resort Indoor Waterpark. More than 80 people joined us for this fun event. Check out DSAW-Sheboygan's other upcoming events here!


Wausau

Our Wausau chapter hosted a beautiful World Down Syndrome Day event this month at Petersen Barn. The children were able to pet horses and parents got a chance to connect and meet other members of our budding chapter. We even had a photographer at the event to capture the memories! Take a look at our photo gallery.

We were also fortunate to get some press this month in honor of World Down Syndrome Day. Laurel and Jeremiah, members of our Wausau chapter, did a radio interview with Oliver Burrows from 1230WXCO to talk about World Down Syndrome Day - you better believe that they were rockin' their crazy socks, too! We also received coverage on the WSAW-7 TV News.


Milwaukee

DSAW-Greater Milwaukee hosted its annual World Down Syndrome Day Event at Country Springs Waterpark on March 20th. More than 160 people joined us and had a blast!

Young Leaders Bootcamp
Self-Advocates joined us for a fun month of Young Leaders Bootcamp as we went through the PeopleSmart Curriculum. We worked on relationships and interpersonal skills. Consider signing up for our FREE April Bootcamp on Planting & Gardening.

Cooking with the Kiddos
We had a great time at Cooking with the Kiddos in March! This class is a great time of family bonding, plus a free meal... what could be better? Join us next month.

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

Tween Club
Tweens had a great time at March's Tween Club. We played games, made delicious treats like puppy chow, and had lots of fun playing the Wii! Many of our parents got to attend Parent's Night Out while their children had a night of fun. There will be no Tween Club in April due to Easter weekend, but join us in May!

Parent's Night Out
Parents hung out at Mad Dog Saloon for March's Parent's Night Out. As always, we had an amazing time. There will be no Parent's Night Out in April due to Easter weekend, but join us in May for a very special Comedy Sportz Parent's Night Out in partnership with the Greater Milwaukee DADS Group! Click here to purchase tickets.

Family Zumba
We had an AMAZING time at Zumba in March. We have a volunteer Zumba instructor who makes the class fun for individuals of all ages and ability levels. Join us in April!

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

Club DSAW
Self-Advocates had a great time painting pottery with our friends from La Terraza at our March Club DSAW! Join us the last Saturday in April for our Club DSAW Mexican Fiesta.


Meet a DSAW Leader: Miriam

Hi! I’m Miriam Marting, a board member on DSAW-Wausau, which has recently become active. I first became involved in the Down Syndrome community when my daughter Laurel was diagnosed with Down Syndrome shortly after her birth in 2006. Laurel is blessed to have three older brothers ages 20, 18, and 12. Laurel likes to go swimming, spend time with her family, eat popcorn, and play outdoors.

When Laurel was born, we had a Down Syndrome support network where we lived in Indiana, so when we moved to Wausau in 2011, we were disappointed that there was no Down Syndrome network in Wausau. I had first heard about DSAW when I was living in Indiana in 2010. Having previously lived in the Fox Cities, we had heard that Rachel Coleman, the producer and personality behind Signing Times, was featured at DSAW-Fox Cities Down Syndrome Awareness Walk. We were excited to meet Rachel because of the role she had played in Laurel’s development.

It is rewarding to connect families and help them understand available resources as well as the joys of having a child with Down syndrome. I have a passion for people, networking, and connecting with others to make a difference. 

Raising Awareness For World Down Syndrome Day

Dear DSAW Family,

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

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

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

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

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

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

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

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

 

Warmly,
Dawn  

 

Meet a DSAW Leader: Joy

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

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

Looking Back on February 2017

Statewide Webinars

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


Chippewa Valley

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

 

 


Fox Cities

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

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

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


Green Bay

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

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


La Crosse

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


Wausau

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

 

 

 

 


Greater Milwaukee Chapter & DSAW State Headquarters

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

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

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

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

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

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

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

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

Meet a DSAW Leader: Jennifer

Hi! I am Jennifer Trustem, a board member on DSAW-Fox Cities. I became active with DSAW and eventually a board member in 2013 after the birth of our daughter Dana. Dana was diagnosed at birth with Down Syndrome. Dana has 3 amazing older siblings, Tanner, Cael, and Jensen, who are her biggest cheerleaders! Our family enjoys fishing, camping, boating, and anything else outdoors. I work part-time as a speech language pathologist and Ben is a sales engineer.

I first became involved with DSAW-Fox Cities by volunteering with the walk committee. Through this experience, I met a wonderful group of individuals. Not only did these people become my friends, but also an amazing source of information as they had older children with Down Syndrome. I then became interested in becoming a board member. I realized what better way to know the resources available to Dana and have an impact on future resources than becoming actively involved. My dream for Dana is for her to be a happy, healthy, independent, and productive/included member of society. This is why I volunteer on the board! Not only do I believe individuals with disabilities should have the same opportunities as those without, but they should be fully included.

I do not have an official title or role with our chapter, but I can say I do a little bit of everything. I have helped with the Down Syndrome Awareness walk, organized social events, and organized speaker events. My current focus in on providing those with Down Syndrome fitness opportunities in the community by working with Neenah YMCA. 

Self-Advocate Corner: Michelle's Poetry

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

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

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

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

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

Looking Back on January 2017


2017 DSAW Leaders Retreat

In January, State Board Members and Chapter Advisory Board Members from around Wisconsin gathered in Milwaukee for a weekend leadership retreat. Not only did we have a LOT of fun, but we  brainstormed ways to bring innovative and needed programs and services to a location near you in 2017. We're excited to unveil all the amazing things coming your way!


Statewide Webinars

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


Annual Meetings

Our chapters hosted annual meetings around the state to communicate to members about 2016 successes and exciting plans for the new year. Click here for a summary of DSAW's successes in 2016!
 


Fox Cities

Ruby Z. enjoying the trampoline activities.

Ruby Z. enjoying the trampoline activities.

In addition to the annual meeting, Fox Cities hosted the Jump with a Buddy Event in January. This was a fun chance for individuals with Down syndrome to bring a typically-abled buddy or family members to enjoy Sky Zone Trampoline Park. Everyone had a blast!


La Crosse

La Crosse's monthly Music Group was cancelled in January due to inclement weather. However, please join us in February! This free class is open to children with Down syndrome ages 0 - 6 and is a great chance to be introduced to many music therapy techniques. Click here to learn more.


 

Greater Milwaukee Chapter & DSAW State Headquarters

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

Young Leaders Bootcamp
Self-Advocates joined us for a fun month of Young Leaders Bootcamp. Consider signing up for our February Bootcamp! February's topic is Communications Management and will be taught by professionals from the Milwaukee Center for Independence. Class is FREE!

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

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

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

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

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

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

Happy New Year from DSAW!

Dear Friend,

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

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

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

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

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

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

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

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

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

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

Warmly,

Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin

Parent's First Call Program Partnership

DSAW is excited to announce that it will be partnering with Parent to Parent of Wisconsin to implement our statewide Parent's First Call Program

Parent to Parent of Wisconsin provides parent support to parents of children with special needs through a one-to-one connection with another parent who has similar experience and who knows firsthand about the feelings and realities that come with having a child with special needs. When Robin, the P2P director, approached DSAW about joining forces for the Parent's First Call Program, we knew this was a perfect fit.

New and expectant parents of children with Down syndrome will contact DSAW for initial support, resources, and to receive their Welcome Basket / Expectant Parent Pack. Parent to Parent will support DSAW's Parent's First Call program by using their statewide infrastructure to help train and match DSAW parent mentors with newly diagnosed families across the state who are looking to connect with someone who has walked in their shoes.

Thank you Parent to Parent of Wisconsin for partnering with us in this life-changing work! As we move forward, we are looking for parents throughout the state who would like to serve as "support parents," providing resources, support, and friendship to new and expectant parents. Stay tuned for a list of upcoming trainings! 

 

A Look Back on December 2016

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

Fox Cities

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

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


Chippewa Valley

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


La Crosse

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


Greater Milwaukee Chapter & DSAW State Headquarters

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

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

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

 

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

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

 

 

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

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

 

 

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

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

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

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

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

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

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

A New Website and a New Era for DSAW

By Dawn Nuoffer, DSAW Executive Director

I am excited to announce the official launch of DSAW’s new website. This website has been a work-in-progress for a number of months, and we’re thrilled to share the final product with you. I encourage you to take a look around at the beautiful photographs (you might see you or your loved one!), updated gold-star resources, and a reorganized, fresh take on who DSAW is and what we do.

Our website launch couldn’t be more perfectly timed: we have just finalized DSAW’s new 5-Year Strategic Plan, which will guide DSAW through its planned growth and change over the next 5 years. We will continue to be an organization that is first and foremost built on fraternal support, but we will incorporate new and exciting components into those offerings.

Our programs and services will now be organized around eight areas: Statewide Fraternal Support, Statewide Parent’s First Call, Statewide Medical Training, Statewide DSAW-Family Services, Statewide Education Services, Statewide Down Syndrome Awareness, Statewide Advocacy, and the DSAW State Headquarters. Overall, we hope this reorganization sends a crucial message to families and individuals across the state: no matter where you live, DSAW is here to support you.  

While we will continue to utilize our effective Chapter system, we have incorporated incremental levels of support from the individual, all the way up to the Chapter level. We believe that in doing so, we can more effectively serve people whether they are in the smallest, most rural areas of the state, or a major metropolitan area like Milwaukee.  We have structured ourselves to serve people across four different “levels” – Individuals, Parent Support Groups, Regional Committees, and DSAW Chapters. Read more about these four levels here.

In addition to our vital Fraternal Support, DSAW will continue focusing on the key areas that are essential to our mission: Parent’s First Call to reach new and expectant parents, Medical Training to educate medical professionals about delivering a fair and compassionate Down syndrome diagnosis, DSAW-Family Services to help individuals with individualized direct services and support, and Down syndrome Advocacy and Awareness. Now, we’re excited to add replicable, niche, and model programming to this list.

At our West Allis-based DSAW State Headquarters, we serve the entire state of Wisconsin while piloting replicable programs and services in the Greater Milwaukee Area for implementation by families across the state. We will start by hosting programs for families (Family Movie Nights, Zumba Class, and Cooking with the Kiddos), parents (New Parent Support Group, Spanish Speaking Support Group, Alzheimer's Support Group, Autism Spectrum Support Group, Grandparents Support Group, Mommy & Me Yoga, and Coffee Club), little ones (Motor Skill Workshop, Speech Therapy), tweens (Tween Club, Family Activity Days, Cooking with the Kiddos), and Self-Advocates ages 15 and older (Drivers Education, Tech Skills Class, Young Leaders Bootcamp, Young Leaders Academy, and Club DSAW).

These exciting programs and services will not solely be available in Milwaukee. Through our more organized volunteer/fraternal support model, we can launch programs just like these all over the state in the next 5 years. Programs that help individuals with Down syndrome learn crucial skills and build relationships with their peers, programs that connect families together for fraternal support, and programs that create lifelong community memories. 

The Down Syndrome Association of Wisconsin is looking forward to a bright future for the individuals and families that we serve. Through our programs, services, and events, we’re confident that Wisconsin can be the best-supported state in the nation for individuals with Down syndrome. We hope you continue to join us on this journey. Click here to start at our new website’s homepage and take a look around – not just at our new website, but at DSAW’s future. I think you’ll like what you see.

Research Opportunities at the Waisman Center, Madison WI

Research study on Parenting and Language Learning in Young Children with Down Syndrome

 

If you have a child with Down syndrome between 2 and 5 years of age, you and your family are invited to participate in a research study conducted by Dr. Audra Sterling at the Waisman Center, University of Wisconsin – Madison.

The purpose of this study is to learn more about the relationships among parenting, social interactions, and language learning in children with Down syndrome. 

If you decide that you and your family would like to participate in this study, we will ask you to complete questionnaires related to your child’s development and daily behaviors, as well as your marital relationship and overall health.  We will come to your home and record your family as you interact during different daily activities, such as during making a snack together, playing and reading a story.  During our visit, we will also complete developmental assessments through interacting with your child.  Additionally, we will request that you use our audio recording device to record 1-2 evenings for three hours before bedtime.   Your family will be compensated $50 for your time.

If you are interested in this study or would like to learn more, please call the Study Coordinator at (608)263-5145 or email RIDDLL@waisman.wisc.edu 

 

 

Study on Spoken Language in Children, Adolescents and Young Adults with Down Syndrome

 

If you have a son or daughter with Down syndrome between 6 and 23 years of age,
you and your child are invited to participate in a research study being conducted by Dr. Audra Sterling at the Waisman Center, University of Wisconsin-Madison. This research study is part of a larger team with four different sites across the United States.

The goal of this study is to learn more about how samples of spoken language can be used to measure change over time in the spoken language, problem solving, and behavior of individuals with genetic syndromes. In the future it is possible that measures of spoken language production may be useful as one way to learn whether different drugs can help individuals with genetic syndromes to learn and use language more effectively.

If you decide that you and your son or daughter would like to be in this study, we will ask you to visit the Waisman Center for either one, two or three visits. At each visit, we will collect a sample of your son’s or daughter’s language in two different settings: a conversation with the examiner and telling a story from a wordless picture book. We will also give your child some tests that will measure his/her problem solving skills and how much language she/he understands. We will ask you to fill out some questionnaires and participate in an interview about your child’s everyday living skills.

If you would like to learn more about this study, please call/email our study coordinator, Susen Schroeder: (608) 263-5145, sschroeder@waisman.wisc.edu