Meet a DSAW Leader: Becky

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Hi, my name is Becky Berndt and I am on the DSAW- Green Bay board as the Vice President and Secretary.  I have been a stay at home mom for the past 10 years and prior to that I was a classroom teacher.  My husband, Jeremy, and I have been married 19 years and are excited to be celebrating our 20th Anniversary this summer.  We have five wonderful children, ages 17, 13, 9, 5 and 3.  Our 5 year old, Evelyn, was prenatally diagnosed at 11 weeks with Down syndrome.  Evelyn has successfully endured and recovered from heart surgery and Leukemia (AML).  She is an absolute rock star and our superhero!

After moving to Wisconsin 4 years ago, I was looking for other families blessed with a child with Down syndrome to connect with. After discovering DSAW - Green Bay, not only did I find support, knowledge and fun, but also cherished friendships.  What started with participating in the Awareness Walk 4 years ago grew into becoming a board member last year.  I look forward to new and exciting programs, activities and friendships for DSAW- Green Bay and all of DSAW! The sky’s the limit!

Looking Back on March 2018

Milwaukee

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World Down Syndrome Day Waterpark Event
On March 19, we got ready for World Down Syndrome Day by celebrating at the waterpark at Country Springs in Pewaukee! Over 150 people joined us in splashing around for World Down Syndrome Day. Come bowling with us next month!

Ben's Cycle Indoor Century Ride
Our friends at Ben's Cycle/Milwaukee Bicycle Co. Cycling Team hosted a fundraiser for DSAW on Saturday, March 10. Cyclists biked 100 miles!!! DSAW ED Dawn Nuoffer and several self-advocates were there to cheer them on! They ultimately raised $3,729 for DSAW! THANK YOU!!

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Young Leaders Bootcamp
The theme for Bootcamp this month was self-advocacy and finding/using your self-directive voice! We learned how to speak up for ourselves in many different scenarios. Next month's Bootcamp will continue with this theme as we examine ourselves and prepare a presentation for the board. 

Bootcamp meets on Tuesday nights at 6pm. Join us in April!

Cooking with the Kiddos
The dads took over cooking for the second session in March! Mr. Richard Firth led us in cooking a delicious meal! We had chocolate cornflake cakes, cheesy potatoes, broccoli, and breakfast sausage muffins. Cooking meets on the first and third Wednesday of the month at our state office in West Allis. To cook with us in April, sign up here

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Motor Skills Playgroup
Our Motor Skills Playgroup meets every second and fourth Tuesday morning! 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. Come play with us in April!

Young Leaders Academy
Our Young Leaders Academy meets every second and fourth Thursday of the month. This month we had a guest presenter - Megan Roth from DSAW-Family Services! We always start off with an energetic game and end with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. On the second Thursday in April, we will be taking a field trip to the Medical College to meet with med students and learn about how to advocate for ourselves at the doctor's office. Come join us!

Tween Club
Tween Club this month was AWESOME! We played Olympic-style mini games including pairs figure skating, slalom, races, and more! We also decorated flags and earned medals at an awards ceremony. Next month's Tween Club will be on Friday, April 13. Drop your 10+ year old off for a night of games, snacks, activities, and more. Sign up online.

Parent's Night Out
Each month, DSAW parents, grandparents, and caregivers get together at Club Paragon for a night of casual conversation and free appetizers. We meet every second Friday of the month! Hang out with DSAW adults on Friday, April 13!

Family Movie Night
Every fourth Friday of the month, we invite families to a movie night at our office in West Allis! In March we got together for popcorn, snacks, and to watch Coco! Parents are invited to stay with their kids, or drop them off for a night of respite. Join us next month!


Rock County

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All Supported Families Meeting
At the beginning of March, we hosted an All Supported Families Meeting in partnership with the Madison Area Down Syndrome Society for families in Rock County. DSAW and MADSS both shared about the programs and services we can offer to families in Janesville, Beloit, and the greater Rock County area. We're excited to expand our services to these families and have already started planning fraternal events!

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World Down Syndrome Day Bowling Event
In partnership with MADSS, we hosted the first ever fraternal event in Janesville for families and their loved ones with Down syndrome! Families got together to bowl, enjoy appetizers, and brainstorm future events. We had a great time meeting new people and can't wait to host another event in the area.


Sheboygan

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Parent's Night Out
DSAW-Sheboygan hosted a Parent's Night Out at Antonio's in Plymouth at the beginning of March. We had 7 DSAW adults come out for free appetizers and a night of conversation and drinks! Stay tuned for our next Parent's Night Out!

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World Down Syndrome Day Waterpark Event
Over 100 people of all ages and abilities came out to join us at Breaker Bay Waterpark at Blue Harbor Resort on Sunday, March 18!! We enjoyed an afternoon splashing around at the waterpark in 84 degree weather, and we had a great time with other families celebrating World Down Syndrome Day! 


La Crosse

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World Down Syndrome Day Event
Our 2018 World Down Syndrome Day Celebration was a hit once again!! About 100 of us gathered at the Black River Beach House and had a great time! We enjoyed pizza and cake and lots of fun activities! There were many new faces and so many parents getting to chat and catch up. We added having a door prize this year, which was exciting!! We also had an amazing group of volunteers from LHI! Our day would not have gone as smoothly without them!! Then once again, our Super Duper Extra Chromosome Wall of Fame looked AMAZING!!! All these faces make this day one of the BEST of the year!! We were even featured on the news!
We want to thank Angie Frank and Kim Grosskopf for chairing this event! And thank you to the many parents/families who helped make this day a success! 

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Parent's Night Out
We had our biggest group yet at our Parent's Night Out at the end of March. DSAW parents, grandparents, adult siblings, and caregivers are all invited to join us for FREE appetizers and a casual evening! See what it's all about on Friday, April 6 at Java Vino in La Crosse.


Green Bay

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World Down Syndrome Day Event
We celebrated World Down Syndrome Day on Sunday, March 18 at The Kroc Center!! We went swimming, had snacks, and got to hang out with some of the coolest people around. DSAW-Green Bay mom Casey Atkinson and her daughter Tori were also on the news advocating for WDSD!

 

 

Mom's Night Out
We also hosted our monthly Mom's Night Out in March at Titletown Brewing Company! We meet the fourth Sunday of every month at 6pm for FREE appetizers and a casual evening of conversation. All parents/caregivers are invited to our Parent's Night Out next month on April 22nd! Sign up today!


Antigo

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World Down Syndrome Day Event
Families celebrated World Down Syndrome Day up in Antigo! They got together at an aquatic center for an afternoon of swimming, snacks, and cake and ice cream! Their WDSD celebration also was featured on the local news!


Central WI

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World Down Syndrome Day Waterpark Event
DSAW-Central WI families headed to The Grand Lodge in Rothschild to celebrate World Down Syndrome Day! They got to have a fun day at the waterpark and celebrate with cake! DSAW-Central WI made the news for their awesome WDSD party, too!

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Mom's Coffee Date
We got together at Java Vino again this month for a Mom's Coffee Date! We enjoy warm beverages and casual conversation with other DSAW moms, grandmas, aunts, and female caregivers. Come out next month on April 19 - we'll have Carol Wesley, the Executive Director of the Achieve Center, as a special guest!


Fox Cities

Mom's Night Out
We had a Mom's Night Out at TGI Friday's in Appleton at the beginning of the month! We always have such a fun time getting together with other DSAW moms, grandmas, and female caregivers! Plus, DSAW pays for FREE appetizers!

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K.I.T.E. Conference
DSAW-Fox Cities hosted its annual K.I.T.E. Conference in partnership with WisconSibs and SOAR! Experts presented on a variety of different topics, and many local resources and disability organizations had booths to share about how they serve individuals with Down syndrome!

World Down Syndrome Day Monkey Joe's Event
We celebrated WDSD in the most AWESOME way with a bounce event at Monkey Joe's! DSAW-Fox Cities provided pizza and juice boxes, and the kids got to jump and slide around the inflatables all evening. Thank you to everyone who came out to celebrate with us!


Chippewa Valley

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World Down Syndrome Day Event
Our Chippewa Valley chapter also hosted a World Down Syndrome Day event! We had a HUGE turnout with almost 250 people celebrating with DSAW! We got to bounce around at a trampoline park, have a pizza lunch, and then splash the afternoon away at a waterpark! It was a fun-filled, action-packed day. Thanks to everyone who joined us!


Meet a DSAW Leader: Tracie

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Hi, my name is Tracie Quade and I am a parent volunteer for North Central WI. I am a full time mom with a part time job on the weekends as a black jack dealer. My husband, Jason, and I have been married for 4 years and will celebrate our 5th Anniversary this fall. We have two beautiful children that continue to amaze us every day. Our daughter, Grace, will be 4 in April. Our son Benjamin, or “Benny” as we call him, is 18 months old. Benny was diagnosed at birth with Down Syndrome. At that time I had no idea what to expect or where to go for answers to my millions of questions. After finding the DSAW Central WI chapter I gained knowledge and friendships that I had been seeking. I also gained a passion in telling others about my sons diagnosis and the lottery that we had won! 

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Over the last few months I have been privileged to work with DSAW in coordinating and helping plan events for our North Central parent outreach group. My goal for 2018 is to reach as many families as possible in the Northwoods of WI so that they might find the same support, friendship and education that I did through DSAW.

Looking Back on February 2018

Milwaukee

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Valentine's Dance
On February 10, we welcomed 150 people to our state office in West Allis to celebrate Valentine's Day! Families enjoyed a homemade meal of pasta and salad, kids danced the night away to awesome music, the DJ led Valentine's-themed games, and volunteers helped kiddos create heart shaped crafts and get temporary tattoos. We always love seeing you at our parties!! Join us in celebrating World Down Syndrome Day next month!

Milwaukee Wave Game
Thanks to the generosity of PCI, our families attended a Milwaukee Wave soccer game on February 17! We enjoyed delicious food, free t-shirts, meeting the players and getting autographs, kicking out the game ball, and high fiving the players as they came out of the tunnel. What a fun night!! Thank you PCI!

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Young Leaders Bootcamp
The theme for February's Bootcamp was board games! We created and decorated life size versions of Jenga, Connect Four, and Kerplunk. We also had time to play regular sized board games, too. Next month's Bootcamp will focus on an important topic: self-advocacy and finding your voice. March's Bootcamp will prepare us for a visit with med students in April, where we'll talk about how to advocate for ourselves at the doctor.

Bootcamp meets on Tuesday nights at 6pm. Join us in March!

Cooking with the Kiddos
We had an exciting month at Cooking with the Kiddos! On February 7, Fox 6 News came to cover the program and to interview families about the importance of the new Gerber Baby who has Down syndrome! We showed them how to cut chicken and prepare mashed potato bowls. At our second session, we made a classic meal of spaghetti and meatballs! Cooking meets on the first and third Wednesday of the month at our state office in West Allis. To cook with us on March 7, sign up here.

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Motor Skills Playgroup
Our Motor Skills Playgroup meets every second and fourth Tuesday morning! 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. Come play with us in March!

Young Leaders Academy
Our Young Leaders Academy meets every second and fourth Thursday of the month. This month we started off with kickball to get our energy up, and we ended with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. Join us for Young Leaders Academy in March.

Tween Club
This month we were unable to host Tween Club because it was a SNOW DAY! Next month's Tween Club will be on Friday, March 9. Drop your 10+ year old off for a night of games, snacks, activities, and more. Sign up here!

Parent's Night Out
Each month, DSAW parents, grandparents, and caregivers get together at Club Paragon for a night of casual conversation and free appetizers. We meet every second Friday of the month! Drop your child off at Tween Club on March 9 and swing by our Parent's Night Out.

Family Movie Night
Every fourth Friday of the month, we invite families to a movie night at our office in West Allis! We watch a family-friendly movie on our big projector screen. Parents are invited to stay with their kids, or drop them off for a night of respite. We even have snacks! This month we watched Beauty and the Beast. Come watch Coco with us next month!


La Crosse

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All Abilities Pool Party
We started off the month with an All Abilities Pool Party in partnership with the La Crosse Area Autism Foundation and the YMCA! Families joined us for dinner and for an evening of swimming at the YMCA.   

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Self-Advocate Painting Event
Self-advocates joined us on February 17 for a painting class! An instructor led us through the steps to create our own masterpieces of a tree in a snowstorm. We had a wonderful time with our self-advocates and are looking forward to more events in the future! 

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Parent's Night Out
Parents, grandparents, and caregivers of a loved one with Down syndrome joined us in Caledonia, MN at The Wired Rooster for an evening of casual conversation and free food! We always love getting together with other DSAW adults. Join us on March 24 at Creekside Grill & Pub in La Crosse. 


Central Wisconsin

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Stevens Point Playdate
This month, DSAW-Central WI hosted their first ever event in Stevens Point!! We met new families at the Central WI Children's Museum, and the press even covered our event! If you live in Stevens Point and want to get more DSAW events going in your area, contact Rachel at rachel@dsaw.org.

Mom's Coffee Date
We had a Mom's Coffee Date at Vino Latte on February 21! Moms, grandmas, aunts, and female caregivers who have a loved one with Down syndrome are all invited to attend for a morning of casual conversation and coffee. Sign up to join us next month on World Down Syndrome Day!


Fox Cities

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SkyZone Events
DSAW-Fox Cities hosted a teen and a toddler jump event at SkyZone this month! We loved jumping on the trampolines and playing in the foam pit!

 

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Valentine's Dance
On February 17, families joined us for an afternoon of food, games, crafts, dancing, and Valentine's activities. They could get their photos taken too!

New Parent Support Group
In February we hosted a support group for new parents. Being a new parent to a child with Down syndrome can raise a mix of emotions. The diagnosis can leave you feeling shocked, overwhelmed, and even lonely. You are not alone in this, and we'd love to help, even if it's just to talk and listen to one another.

This group is currently for parents with children around age 3 and under who are fairly new in their journey. If there is interest from different age groups, we will look into adding more support groups in the future, as each age brings its own challenges. 


Green Bay

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Snow Tubing Event
On Saturday, February 24 families joined us in Kewaunee for a snow tubing event! We got to enjoy the outdoors while flying down slippery hills on inner tubes. Both the parents and the kiddos had a ton of fun zooming down the hills in their tubes. What a fun morning!

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Mom's Night Out
We hosted February's Mom's Night Out at Nakashima of Japan. Moms, grandmas, aunts, and female caregivers joined us for a casual evening of conversation and free food! We hold Mom's Nights Out every fourth Sunday of the month. Join us on March 25 at Titletown Brewing Company!


Sheboygan

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Field Trip to Above & Beyond Children's Museum
DSAW families took a field trip to Above & Beyond Children's Museum in Sheboygan to enjoy their special needs night! Exhibits were adapted to reduce loud noises, and the museum was closed to the general public. We had a blast exploring and playing with other families!

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Parent's Night Out
DSAW-Sheboygan hosted a Parent's Night Out for parents, grandparents, adult siblings, and caregivers of a loved one with Down syndrome. We met at the Coliseum Bar & Grill in Fond du Lac for a casual evening of conversation and free food! Join us on Friday, March 9 for a Parent's Night Out in Plymouth!


St. Croix River Valley

Resource Night
On February 28, DSAW families in the St. Croix River Valley came together for a Resource Night. Local therapy providers and other disability resources talked about the services that they offer for individuals with Down syndrome, and families had the opportunity to network and connect with local resources. 


 

Kenosha/Racine/Walworth

Mom's Lunch
We had a lovely time on February 24 meeting with other moms at Cafe 213 in Watertown! We had a chance to talk about upcoming events in the area and to find out more about what DSAW can offer! Join us for a FREE Family Bowling Event on April 14!


Talking About Down Syndrome with Typical Siblings

by Kurt Reising

Explaining Down syndrome to young siblings is a difficult but necessary conversation to have. My daughter Audrey was born with Down syndrome when my son Clayton was two. He had no idea or reason to suspect that there was anything different about his little sister. This began to change as Clayton became older and more perceptive. He started to wonder things out loud, innocently asking things like when Audrey would talk.

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My wife, a registered nurse, eventually had a conversation with Clayton and explained to him, in terms he could grasp, that Audrey has Down syndrome. She was sure to let him know that she was not in any pain, but just wasn’t going to be able to do things as soon as other children normally learn to do them. This conversation was only the beginning, but I believe it started Clayton on a path to being the best sibling he can be for Audrey.

Brian Skotko, Sue Levine, and Richard Goldstein performed a study that showed that nearly ninety percent of older siblings believe they grew up to be better people because their younger sibling has Down syndrome. Communicating with your child lets them understand their sibling, and also understand that they can ask about things. This can lead to them becoming a helper in raising their sibling. Clayton does not know it yet, but just being a good brother is an opportunity for him to learn about inclusion and empathy, and ultimately be a better person.

Being an older sibling already carries a burden of responsibility, and this can be magnified if your younger sibling has Down syndrome. This is something my son gets frustrated with, and is still learning to deal with. Sometimes Audrey is naughty or gets into his things. Clayton sometimes feels frustrated that she does not always understand that he is upset when she does things that are against the rules. Though I know that this scenario is not so different from scenarios had by any set of siblings, there is a difference when one of the children has Down syndrome. Clayton has to be reminded that Audrey loves him, and though it is unfair; he needs to be reminded that Audrey does follow his example, so he should try to set a good one.

We try not to put Clayton in a position where he feels obligated to act differently, but this is somewhat unavoidable as Audrey does feel that she can do anything she has seen her big brother do. I like to frame it positively, making sure to point out how Audrey thinks Clayton is pretty cool. There can also be feelings of jealousy, as Audrey gets a lot of attention from supportive family, friends and even the occasional stranger who wants to meet her. She gets a special day each year where we all go join team Audrey for the Down Syndrome Awareness Walk, and she gets praise for doing things that he has no problem doing. According to the same study cited above, siblings younger than eighth grade are more likely to feel a difference in attention given to their sibling with Down syndrome. Conversations reassuring his importance and specialness are important.

It goes without saying that you will have to have a conversation with typical siblings at some point. This varies with age; in our case we let it go for a while until Clayton was old enough to understand. Even after the initial conversation, I think it is a good idea to try anticipating further questions, so you are prepared to answer those questions in a positive, truthful and accurate way.

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Sibling relationships are often contentious, whether or not Down syndrome is involved. Many of the arguments, disagreements, and other strife are common amongst all siblings. This is something that Clayton has to be reminded of as well. Audrey is not taking his toys because she is different; she is actually doing it because she is the same.

Having communication with siblings about these issues allows them to be better equipped to handle their feelings of frustration and jealousy. It helps them be involved, and ultimately creates an informed advocate and protector who will learn empathy, inclusion, and responsibility. Having a brother or sister with Down syndrome can be difficult for a child, but communication and inclusion of siblings will be beneficial to all. 

Meet a DSAW Leader: Krystina

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Hi! My name is Krystina Jankus. I have been with DSAW now for over a year and recently became the President of the Sheboygan & Surrounding Counties Chapter. My youngest baby girl is 2 and was diagnosed with Down syndrome -- she is the reason i have become so involved with DSAW. 

In my time with DSAW thus far, I have helped to plan and host events throughout our coverage area, and was the Raffle Captain for the 2017 Sheboygan Down Syndrome Awareness Walk. Since Phoenyx was born, I have wanted nothing more than to learn more, find every opportunity for her, and show others that she is not different! DSAW has helped me become stronger and more aware of thingsI may not have been aware of before.

Until Phoenyx was born, I was a hairstylist of 11 years. I married my husband in 2016 and have 3 amazing kids! If you live in the Greater Sheboygan Area, I hope to see you at one of our upcoming events.

Looking Back on January 2018

Milwaukee

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DSAW Leaders Retreat
In January, we welcomed over 50 DSAW leaders from around the state to our annual Leaders Retreat in Pewaukee, Wisconsin. On Friday night we had a member social, gave out chapter awards, and celebrated Tom O'Day, who's retiring from the State Board. On Saturday we buckled down for a day of presentations and breakout sessions centered around the theme "Growing Together". We learned about DSAW's Program Models, how to plan an awesome awareness walk, the Spread the Word to End the Word Campaign, how to be a board member, and so much more. Thank you so much to all of our chapter leaders for helping us bloom!

Snow Tubing
DSAW families got together at Sunburst Ski Area in January for an awesome Saturday afternoon of snow tubing! 

Young Leaders Bootcamp
At Bootcamp in January, we made some incredible videos!! The first Tuesday we interviewed self-advocates about their lives. Later in the month we created a music video! Stay tuned! When we're done editing, we'll share the video.

Bootcamp meets on Tuesday nights at 6pm. Join us in February!

Cooking with the Kiddos
At Cooking with the Kiddos in January, families made turkey pesto paninis! Yummm. Cooking meets on the first and third Wednesday of the month at our state office in West Allis. To cook with us next month, sign up here.

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Motor Skills Playgroup
Our Motor Skills Playgroup meets every second and fourth Tuesday morning! 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. Come join us in February!

Young Leaders Academy
Our Young Leaders Academy meets every second and fourth Thursday of the month. This month we started with dodgeball to get us going, and we ended with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. Sign up for Young Leaders in February!

Tween Club
This month we had the biggest Tween Club ever!! We made lava lamps and had snacks. Next month's Tween Club will be on Friday, February 9. Sign up here!

Parent's Night Out
Each month, DSAW parents, grandparents, and caregivers get together at Club Paragon for a night of casual conversation and free appetizers. We meet every second Friday of the month! Drop your child off at Tween Club on February 9 and stop by our Parent's Night Out!

Club DSAW
Self-advocates ages 15 and older are invited to join us for our monthly Club DSAW gathering on the fourth Saturday of the month! Each month is a new activity. This month we met at the DSAW Office for a night of beach-themed fun! Self-advocates wore their Hawaiian shirts and we spent a night on the beach. Next month we'll be going to a WAVE game on February 17! Join us.

Family Movie Night
Every fourth Friday of the month, we invite families to a movie night at our office in West Allis! We watch a family-friendly movie on our big projector screen. Parents are invited to stay with their kids, or drop them off for a night of respite. We even have snacks! This month we watched Diary of a Wimpy Kid. Come watch a movie with us next month!


Sheboygan

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Swimming Event
This month, DSAW-Sheboygan families came together at the Manitowoc/Two Rivers YMCA for a swimming event! We went swimming during the Y's Special Needs Swim hour, and afterwards we got together for a pizza dinner and fraternal support. We had a great turnout and look forward to hosting more events in the Manitowoc area!


La Crosse

Parent's Night Out
The temps were frigid outside on January 13 but that did not stop a red-hot group of parents from enjoying our monthly Parent's Night Out at Howie's on La Crosse.  There were heartwarming stories about our loved ones with Down syndrome, temperature raising behavior issues concerning our (sometimes, not-so) loved ones with Down syndrome and, of course, laughter.  We start by having a connection because of our child with Ds and then learn that we have so much more in common.  We love the bonds that are created at the Parent's Night Out events, when parents are able to communicate and learn from others without having to worry about watching their child with Down syndrome.  Join the fun on February 24 at The Wired Rooster in Caledonia, MN for our next Parent's Night Out.     


North Central WI (Antigo)

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Family Bowling Event
DSAW is beginning to expand its Parent Support Groups in North Central WI, specifically in Antigo. We had a Family Bowling Event, our third get-together, in January. If you live in North Central WI and want to get involved with DSAW, join our Facebook group! We're especially looking for families who live in Rhinelander!

 


St. Croix River Valley

Parent's Night Out
In January, parents from the St. Croix River Valley got together at Table 65 in New Richmond for a night of free appetizers and conversation! Join DSAW next month for a local resource night.


Fox Cities

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Group Fitness Class
This month we held group fitness classes in partnership with Anytime Fitness in Appleton. They were great!! The classes were functional (no machines) workouts featuring all major muscle groups. We started the session with a fun ice breaker, demos of all exercises, a dynamic warm up, 8-10 exercises, then concluded with a fun team building activity and stretching. 

Adult Holiday Party
We also hosted a holiday party for DSAW adults at the Mad Apple in January. Self-advocates, parents, grandparents, and caregivers got together for food and billiard games to celebrate the holidays.


Green Bay

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Mom's Night Out
DSAW-Green Bay moms, grandmas, and aunts went to Rustique Pizzeria this month for their Mom's Night Out! They enjoyed appetizers and a night of casual conversation. We host a Mom's Night Out on the fourth Sunday of every month. Join us next month at Nakashima!

 


 

Central Wisconsin

Mom's Night Out
We had a successful Mom's Night Out at the end of January at City Grill! Ten moms joined us for a night of casual conversation, food, and drinks. Moms, grandmas, aunts, and female caregivers are invited to join us for a Coffee Date next month on February 21!


Breast-feeding Your Baby

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Created by Marianne Pastore, RN MassGeneral Hospital for Children

BREAST-FEEDING BASICS

All babies benefit from breast-feeding or receiving breast milk. Breast-feeding can:

  • Promote eye and brain development
  • Lower the risk of Sudden Infant Death Syndrome (SIDS)

  • Improve mouth and tongue coordination, which will help speech skills

  • Create a special bond with your baby

 

There are, however, special benefits for babies with Down syndrome:

  • Babies with Down syndrome have a higher risk of infection. The mother’s body makes antibodies, which she passes on to her baby during breast-feeding. Antibodies help protect your baby against infection.
  • Breast milk is very easy to digest, and this is helpful for infants who may have stomach problems related to Down syndrome.

  • Skin to skin contact during breast-feeding helps stimulate babies who have low muscle tone, or weak muscles.

 

GETTING STARTED

When any baby learns to breast-feed, it takes time and patience. Getting off to the best start helps you and your baby succeed with breast-feeding.

  •  Start breast-feeding as soon after birth as possible.
  • Have skin to skin contact with your baby as much as you can. Touch helps increase the breast-feeding hormones. A baby is also likely to begin rooting or nuzzling at the breast and may actually latch-on when having skin to skin contact.

  • Feed your baby often, 8 to 12 times in 24 hours, including feedings during the night.

  • Get comfortable before you start to feed.

  • Position your baby so their body and chin are well supported. This is especially helpful for a

    baby with low muscle tone. The nurses will help you with this in the hospital.

  • Know where to go for help and support after you leave the hospital.

 

IS MY BABY GETTING ENOUGH MILK?

You can be sure your baby is getting enough milk if you watch for the following:

  • Your baby should be breast-feeding 8 to 12 times in 24 hours
  • After a week, your baby should have 6 to 8 wet diapers and 3 bowel movements that are yellow, soft and seedy

  • Your baby with Down syndrome should gain at least 4 ounces per week

 

BREAST-FEEDING CHALLENGES

Babies with Down syndrome may face some special challenges that might affect breast-feeding. There are many things you can do to work through these challenges and have success.

 

Low muscle tone

Your baby may have low muscle tone, or weak muscles, especially in their tongue and lips. To help babies with low muscle tone during breast- feeding, do the following:

  • Keep your baby’s body and chin well supported
  • Support the base of your baby’s head with your hand. Too much pressure on the back of your baby’s head can cause a poor latch.

 

Sleepiness

Your baby may be extra sleepy, which can affect feeding patterns. Babies who fall asleep may also not get enough milk, especially the end milk or “hind milk.” End milk has extra fat and calories which help your baby to grow.

  • Dim the lights in the room so your baby doesn’t have to close his or her eyes against the light
  • Remove all of your baby’s clothing except the diaper to help keep him or her alert

  • Wash your baby’s face with a wet cloth

  • Gently stroke and talk to your baby during the feed

  • Compress and massage your breast while breast-feeding. This will help the milk flow and keep your baby interested in breast-feeding. 

 

Tongue Thrusting

Babies with Down syndrome may have a protruding tongue that pushes against your nipple. To help these babies breast-feed, try the following:

  • Wait for your baby to open wide (like a yawn) with his tongue forward and down
  • Gently press down on your baby’s chin. Opening the jaw will help the tongue come forward.

  • Teach your baby how to keep his or her tongue down. Put your index finger on the center of your baby’s tongue. Push down and gently pull your finger out.

  • Allow your baby to suck on your finger so he develops rhythmic sucking rather than biting.

     

WHAT IF MY BABY IS NOT BREAST-FEEDING?

Some babies might not breast-feed while at the hospital. Your medical staff can help you create
an individual feeding plan to make sure your baby gets all the nutrition he needs to grow and thrive. After you leave the hospital, you will meet often with your pediatrician who will help make changes to the feeding plan as needed. During this time, it is important to build and protect your milk supply. Building a milk supply usually happens if your baby is breast-feeding a lot. If your baby is not breast-feeding, the medical staff will help teach you how to get a double electric breast pump and how to pump your breasts. In the end, some babies do not breast-feed. However, giving your baby your breast milk from a pump will still give your baby all the wonderful benefits.

 

SUPPORT

Your nurse in the hospital will help you with breast-feeding. She will also arrange a visit with
a lactation, or breast-feeding, consultant during your stay. The more help and support you have, the more successful you will be. It is important to check with your pediatrician to see if they have a staff member who can help with breast-feeding or make a referral to someone who can. Ask your nurse in the hospital for available resources. Zipmilk.org is a great website that can provide you with Lactation Consultants, La Leche League Groups and other support groups in your community.

This is intended to provide health related information so that you may be be er informed. It is not a substitute for a doctor’s medical advice and should not be relied upon for treatment for specific medical conditions. 

Meet a DSAW Leader: Mary West

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Hi! My name is Mary West. I joined DSAW Family Services in 2015 and currently serve as a daily life skills specialist, IEP/Behavior specialist, and a job developer/coach.  There are few things that I enjoy more than helping my clients succeed and watching their joy when they do.  This truly is my dream job!

My background is as an elementary special education teacher.  I hold a bachelor’s degree in Educational Studies and Youth Leadership and a masters degree in Exceptional Education, both from UW-Milwaukee.  I come to DSAW Family Services after just over a decade of working in elementary schools, first as a paraprofessional in the Whitefish Bay School District, and then as a teacher in the West Bend School District.

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I’ve been married to my amazing husband since August of 2014.  We are hoping to start a family soon.  We enjoy spending time with our family and friends, as well as travelling.  In the past few years I’ve been to such far off places as Thailand and Cambodia.  However, I’m just as happy traveling within the U.S. to spend as much time as possible with my awesome nieces and nephews, or following the Wisconsin Badgers basketball team, of which I am a huge fan.  Go Badgers!

Taking on my position with DSAW Family Services is one of the greatest decisions that I’ve ever made.  I love spending time with my clients and enjoy that every day is a new adventure.  In particular, I love helping clients find jobs.  Sharing in the joy of watching a young person with a disability succeed in his or her first job is something that never ceases to bring me happiness.

I cannot imagine working with better colleagues and clients on an everyday basis.  I look forward to meeting more of you as my journey with DSAW Family Services continues!

"We Absolutely Couldn't Ask for More!"

Does your family need one-on-one support for your loved one with Down syndrome? Do you need help with IEPs, inclusion, or speech? Are you struggling with behavior problems and need a custom solution? Do you need to find respite care? Does your loved one need help securing transportation, housing, caregivers, or employment? Would you like to develop a 5- or 10-year plan for your loved one to help them reach their goals?

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DSAW-Family Services can help with ALL of this, and more! DSAW-FS provides one-on-one services to individuals with Down syndrome and other special needs and their families, helping individuals take their rightful place in the community and achieve their full level of independence. Whatever obstacle you are facing, DSAW-Family Services can help!

DSAW-FS has been working with Kathryn for a couple of years. She has received daily life-skills training, job coaching, and one-on-one support to help her achieve her dreams. Kathryn's mom, Julie, says that with DSAW-FS, Kathryn "has accomplished so much and her success has been wonderful!" DSAW-Family Services has matched Kathryn with a support worker that has been life-changing for Kathryn and her family. "It is so important to us to have a long-term and REAL relationship with our provider...DSAW-FS has provided Kathryn with exactly what she has needed, when she needed it."

With the help of DSAW-Family Services, Kathryn is living a fulfilling and active life in the community. She has two jobs, she volunteers at DSAW, is involved in Project Search, and participates in Special Olympics. Julie says that she "absolutely couldn't ask for more!"

When you support DSAW, you support the services that have helped people like Kathryn thrive. Would you consider giving others an amazing life this holiday season? By donating to DSAW, you can.

Warmly, 
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin 

PS - Only 5 days left for your donation to qualify for a dollar for dollar match thanks to a generous donor. Make your donation today!

Looking Back on December 2017

Milwaukee

Holiday Party
We welcomed 300+ people to our DSAW-Greater Milwaukee Area Holiday Party on December 16!! We had music, holiday crafts, cookie decorating, a hot chocolate bar, games, and more! Santa and some of his elves came down to visit from the North Pole, and they brought presents for over 150 children! We had a delicious homemade lunch of turkey, mashed potatoes, mac n cheese, jello, and veggies. Texas Roadhouse donated pulled pork too! We raffled off a gingerbread making kit and busted some moves on the dance floor. Thank you so much to all of our families who joined us. We love you, and we hope you have a safe, fun holiday season!

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Young Leaders Bootcamp
December Bootcamp was Holiday Baking month!! At the beginning of the month, we made sugar cookie dough to use for cookie decorating at our DSAW-Sheboygan Holiday Party! Then we made some cookies for ourselves to enjoy!

Bootcamp meets on Tuesday nights at 6pm. Join us in January to make a music video!!

Cooking with the Kiddos
At Cooking with the Kiddos in December, families made customized personal pizzas!  Cook with us next month and sign up here!

Motor Skills Playgroup
Our Motor Skills Playgroup meets every second and fourth Tuesday morning! 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. Join us in January!

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Young Leaders Academy
Our Young Leaders Academy meets every second and fourth Thursday of the month. This month we did yoga to help us slow down during the busy holiday season, and we ended with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime.  Come out to Young Leaders in January!

Tween Club
This month at Tween Club we spent the night tie dying DSAW sweatshirts!! Next month's Tween Club will be on Friday, January 12. Click here to sign up!

Parent's Night Out
In December, DSAW parents, grandparents, and caregivers got together at Club Paragon again for a night of casual conversation and free appetizers. We meet every second Friday of the month! Drop your child off at Tween Club on January 12 and stop by our Parent's Night Out!


Chippewa Valley

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Holiday Party
At the beginning of December, DSAW-Chippewa Valley hosted a big Holiday Party at Cabin Ridge! We had delicious food, a "sleigh" ride through the woods, hot chocolate to warm up, and a visit from Santa and his elves!! A big thank you to everyone involved!


La Crosse

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Holiday Party
It sure is the most WONDERFUL time of the year!  DSAW-COTH-GLA family and friends gathered to celebrate the magic of the season on December 16 at our annual Holiday Party.  There was soccer, football, dancing, a bounce house, a parachute game; all kinds of fun for all ages.  When we took a well-deserved break for lunch, we went around the room highlighting the 2017 accomplishments of each individual with Down syndrome- TRULY INSPIRING!  It was great to see old friends and make new friends, share knowledge about our experiences, and support the families that are new to this journey. We even had a surprise visitor from the North Pole.    


North Central WI (Antigo)

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Culver's Family Social
DSAW is beginning to expand its Parent Support Groups in North Central WI, specifically in Antigo. We had our second event in December - a Culver's Family Social! Come bowling with us in January! If you live in North Central WI and want to get involved with DSAW, join our Facebook group!


Central WI

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Winter Fest
Our Central WI chapter hosted a Winter Fest party on Saturday, December 9! We got together for crafts and activities, snacks, and a visit from Santa! Thank you to everyone who celebrated with us.

 

 


Sheboygan

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Holiday Party
DSAW families in Sheboygan joined us in celebrating the holidays at Odyssey Fun Center this month! We started off with holiday crafts, music, and cookie decorating, and then we spent the afternoon bowling! Thanks to all who participated and helped us prepare for the event!


Green Bay

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Playgroup
DSAW-Green Bay hosted its monthly playgroup at Kidz Town in December. Individuals with Down syndrome are free! Come play with us on Saturday, January 6!

Holiday Movie Event
DSAW-Green Bay families celebrated the holidays together at De Pere Cinema on December 16! We watched a winter favorite - Frozen!


 

Fox Cities

Teen FrienDS Club and Parent's Night Out
On the second Friday of every month, we host our Teen FrienDS Club at our office in Appleton in conjunction with a Parent's Night Out! Parents are invited to drop their teens off at our office for a night of games, snacks, movies, and friends; then they head over to a local restaurant for free appetizers and an evening of casual conversation! Come join us next month on January 12!


We Can't Do It Without You!

We have many incredible volunteers that make what we do at DSAW possible. Some of you might know Susan, who volunteers at our State Headquarters in West Allis. Susan helps every Tuesday at Bootcamp, Friday nights at Tween Club, and at events throughout the year. 

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"The path leading me to DSAW was unexpected and unplanned, as is often the case for amazing things in one's life." She wanted to learn more about Down syndrome after hearing about a local business started by a woman with Down syndrome. Her search led her to DSAW, and she has been volunteering with us since March.

Now, her favorite part about volunteering is sharing with the self-advocates: "thoughts, goals, jokes, favorite things, experiences, likes and dislikes, mistakes, knowledge, strengths and challenges, activities. In short, everything friends share."

Susan has been invaluable to our work at DSAW. She lights up our office with her passionate spirit and her desire to serve. She truly believes that "starting small can and does make a difference" and suggests that "if you can't volunteer, then donate. If you can't donate, then volunteer. If you can't do either, then advocate, educate, and always watch for opportunities that can use your talents and resources." 

We could not serve our loved ones with Down syndrome or offer life-changing programs and services without our wonderful volunteers and donors. Will you give back to DSAW this holiday season? Consider donating your time, talent, and/or treasure to help us accomplish our mission.

Warmly, 
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin 

The Novaceks

When you make a gift to the Down Syndrome Association of Wisconsin, you fund life-changing programs and services that support thousands of people around the state. For Stephanie and Tom, the Parent's First Call program has been invaluable on their journey. 

When Stephanie was pregnant with Tommy, a prenatal test indicated a high probability that their son would have Down syndrome.

"We were surprised at the number of times termination was brought up, simply based on the high likelihood of having a baby with Down syndrome." They received few messages of congratulations or excitement. At first, they were terrified about what the diagnosis meant for Tommy and for them. 

However, their attitude quickly changed after becoming connected with DSAW. Through the Parent's First Call program, Stephanie and Tom received resources, fraternal support, and hope. 

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"Our outlook on this new reality, which seemed overwhelming at times, improved greatly after the first Parent's Night Out that we attended. Meeting others with similar stories to ours made life feel normal again. It was refreshing to be able to openly discuss Down syndrome for the first time with people who knew what we were going through." 

Now, more than ever, support for new and expectant parents is vital.Did you know that individuals with Down syndrome are at significant risk to be the first group of people eliminated from the population? 

DSAW is fighting to change this narrative through the Parent's First Call program. This program provides resources, support, and connections to new and expectant parents who have received a Down syndrome diagnosis. DSAW offers Expectant Parent Packs and New Parent Welcome Baskets, and parents have the option to be connected with a trained Support Parent.  

DSAW's Parent's First Call program creates lives of hope, exceeded expectations, immeasurable joy, and unconditional love by wrapping networks of support and resources around parents to address the unique, yet surmountable, challenges facing the Down syndrome community. Since the program's inception in April 2016, DSAW has provided resources and support to more than 70 new and expectant parents across the state and trained more than 50 Support Parents -- and this is just the beginning. The Parent's First Call program is changing lives. 

The Parent's First Call program was so important to Stephanie and Tom that they have now become Support Parents themselves. "The chance to help someone in our same situation is incredible. The Parent's First Call program is the first step to realizing that life with a child with Down syndrome will not be as scary as it may seem, and that everything will be okay." 

Not everyone can be a Support Parent like Stephanie and Tom, but we are counting on the overwhelming support of our community to make the Parent's First Call program a success. When you make a donation to DSAW, you support the Parent's First Call program, along with DSAW's other life-changing programs and services. Together, we can help individuals with Down syndrome exceed expectations and live amazing lives. Will you make a year-end gift to support our vital work? We couldn't do it without you! 

Warmly, 
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin 

Meet a DSAW Leader: Chris Gagne

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Hi, my name is Chris Gagne and I am the new Senior Program Director for DSAW-Family Services.  Before I came to DSAW,  I was a Special Education Teacher for the Shorewood School District and the Slinger School District for 10 years.  My favorite part of my teaching career was traveling with my students to Hawaii and the Florida Everglades and watching them grow through all of the adventures we had together.  

This hints at my previous profession as a Recreation Therapist and my love for the outdoors.  My role as a recreation therapist enabled me to work with adults with acquired brain injuries and the elderly.  I was even a camp director out in California and Nevada for awhile.

Having children settled me into the teaching role, getting my Masters degree in education, and finally finding my way into the DSAW world.  I have two biological children (18 and 21) and one foster son age 13.  My husband is a saint in the making and my kids are all adventurous like myself - one heading to South Africa for a couple of years!

I consider my clients at DSAW -FS an extension of my family - my phone is filled with more pictures of them than my own.  I hope I get a chance to meet more of you in the near future.  DSAW-FS is the best !  We have THE BEST staff and really can not be compared to any other agency out there .... because we love those with DS and other disbilities and want to be a part of shaping their future.