Meet Beth and Kevin

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Tomorrow is Thanksgiving, a day to reflect on all that we're thankful for. Many families go right from pumpkins and ghosts to holiday music and candy canes, without pausing to give Thanksgiving much attention. Consider this: What is most important to you today?

For Beth and Kevin, DSAW plays a significant role in the things for which they are thankful. Beth feels that "Today, DSAW is our family. There's no other way to say it." But it wasn't always that way. There was a time before DSAW. A time when they were left scared and confused. 

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After utilizing several fertility experts, Beth and Kevin were "full of happiness and excitement" at their 5 1/2 month ultrasound. This mood quickly shifted as a specialist came in and "callously told us that they strongly believed the baby had Down syndrome. There was no congratulations, no small talk first, he showed no happiness for our baby or compassion for us as parents." They yearned for one "congratulations," one story of someone with Down syndrome exceeding expectations.

After their horrible diagnosis experience, Beth and Kevin knew that they were called to be Support Parents to other new and expectant parents through DSAW's Parent's First Call program. "It gives us so much happiness...to be able to pay it forward and to help make a Down syndrome diagnosis just a little less scary."

"There is so much focus put on having a 'perfect' baby. We want to share that this baby IS perfect, just as we all are in our own way." 

By supporting DSAW on Giving Tuesday, you can make it possible for us to train more Support Parents. To give more families a "congratulations" instead of an "I'm sorry." To change the narrative around a Down syndrome diagnosis. 

Today, I encourage you to think about how important our children and our families are. It's important to start off parenting a child with Down syndrome with hope and support. You can help give parents the unbiased information and the experience that they deserve by donating to DSAW on Giving Tuesday.

Warmly,
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin

PS - As you scoop up big deals on Black Friday and Cyber Monday, consider donating your savings on Giving Tuesday. It's an easy way to give back!

Looking Back on October 2017

Milwaukee

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Halloween Dance
The DSAW-Milwaukee Halloween dance was on Saturday, October 28 at our State headquarters! Over 150 people joined us for a night of dancing, crafts, games, homemade lasagna, and a costume competition! We LOVED all of your creative costumes. Thank you to all who attended!

Young Leaders Bootcamp
October was Art Month for our Young Leaders Bootcamp! Self-advocates designed a mural for our State office, and then made their design come to life! We had so much fun painting and brightening up our programming room (especially when we got to paint our hands for the leaves of the tree)!

 Bootcamp meets on Tuesday nights at 6pm. Sign up here!

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Cooking with the Kiddos
This month at Cooking with the Kiddos we made a delicious meal of chicken teriyaki! Cooking with the Kiddos is a fun evening of family bonding, plus a free meal... what could be better?! We meet the first and third Wednesday of every month. Cook with us next month and sign up here!

Motor Skills Playgroup
We again hosted our bi-weekly Motor Skills Playgroup at our State office! 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 November to hang out with other families and let your child play!

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Young Leaders Academy
Self-Advocates joined us for our bi-weekly Young Leaders Academy twice in October. 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.  Come out to Young Leaders in November! We will only be hosting one session on Thursday, November 9 due to the Thanksgiving holiday later in the month.

Tween Club
At Tween Club in October we watched Descendants 2 and made spooky Halloween masks! Tween Club in November will be on November 10. Sign up here!

Parent's Night Out
Parents, grandparents, and caregivers enjoyed going to Club Paragon for a night of casual conversation and free appetizers again in October. Drop your child off at Tween Club on November 10 and join us for Parent's Night Out next month!

Grandparents Group
Grandparents of a loved one with Down syndrome meet at our state office on the first Tuesday of each month! We had another big group in October. Come join us on November 7th.


Sheboygan

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Down Syndrome Awareness Walk
DSAW-Sheboygan & Surrounding Counties hosted its 8th Annual Down Syndrome Awareness Walk at Kiwanis Park in Sheboygan on October 14th. Despite the rainy weather, we had an awesome day of raffle prizes, Home Depot mini carpenters, crafts, carnival games, lunch from Texas Roadhouse, and more! Thank you to all of our sponsors, donors, committee members, families, and volunteers! We could not have done it without you.


Fox Cities

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October was a huge month for DSAW-Fox Cities!! On October 1, we hosted a Mom's Night Out at Stone Arch Brew Pub in Appleton. We also continued our Teen FrienDS Club and Parent's Night Out on the second Friday of the month. On top of all that, we held our biggest event of the year -- our Down Syndrome Awareness Walk! Families joined us at Riverside Park in Neenah on October 7th for an afternoon of family fun and raising awareness and acceptance of our loved ones with Down syndrome! Check out news coverage of the event here.


La Crosse

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Parent's Night Out
Members of DSAW-COTH-GLA spent most of October resting after their amazing Awareness Walk in September! We hosted a Parent's Night Out at Elmaro Vineyard on Saturday, October 28. Parents who have a loved one with Down syndrome enjoyed an evening of casual conversation and wine!


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Green Bay

Playgroup
DSAW-Green Bay again hosted its monthly playgroup on the first Saturday of October. They were at CP this month. Join us on November 4 at Kidz Town!

Breakfast with Monsters/Fall Fest
We celebrated beautiful fall weather in October at Delzer's Pumpkin Farm! Families came out to enjoy breakfast with friendly monsters and fall activities like a corn maze, train ride, haunted hayride, face painting, and more.

Couple's Night Out
We also had a Couple's Night Out at Highland Howie's on October 22. A lovely group of parents came out and enjoyed free appetizers and an evening out!


North Central WI

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Parent's Night Out in Antigo
DSAW hosted its very first event in our North Central coverage area in October! Parents in Antigo joined us for a Night Out at Heart Breakers Bar & Grill on October 1st. They had a wonderful time connecting with other families in their area and are looking forward to having more DSAW events in northern WI!

 


Central WI (Wausau)

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Fall Festival
Families from DSAW-Central WI enjoyed a Fall Festival at Wilke's Dairy Farm in Wausau. Although it rained, they still had a great time doing activities, playing yard games, and exploring the pumpkin patch.


How Schools Can Be Inclusive To Individuals With Down Syndrome And Other Special Needs

When it comes to educating individuals with special needs, DSAW advocates inclusion as the first option. Special education services come in many different forms, however, schools are required to consider the general education class before any other setting. Here are some tips for schools, teachers, and parents to help with the inclusion process.

 

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School Environment

• It's important to keep a positive attitude throughout the school. Place values on diversity, be flexible, and practice positive problem-solving with students.

•Teachers should modify assignments when they are too difficult for children with special needs. They should also aim to model respect, as well as encourage friendships in the classroom. The different learning abilities and styles within the class should also be considered. Teachers should teach in a way that allows all children to understand and participate. 

 

Making Friends

•Encourage children to participate in activities where he/she can meet children his/her same age with different abilities. Make sure to support the development of friendships with classmates.

•Provide many opportunities for children with Down syndrome to socialize in a peer group with similar levels of intellectual disability. It is important for children with disabilities to have friends who are similar to them both in and outside of school.

•Similarly, it is good for friendships with non-disabled peers to carry on outside of school. This will help improve understanding and support.

 

Parents

•Keep in mind the power of role models. You want your child to feel that they are part of their community. It will help if they have strong influences who can set good examples and be someone they can look up to.

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•Set up meetings with teachers, therapists and others to discuss the goals, expectations, and future placement preferences you want to plan with your child.

 

Need Help?

•Schedule a Peer Sensitivity Training at your school! DSAW can help teach your child's classmates about what Down syndrome is, what it isn't, and how to be a good friend to someone with Down syndrome.

•Watch our IEP Webinar to learn more about advocating for more inclusion for your child.

•Do the teachers at your school want to learn more about teaching individuals with Down syndrome? They can schedule a teacher in-service to learn the latest techniques.  

•Need one-on-one support managing the relationship with your teacher or school district? Contact DSAW-Family Services to set up a Roadmap Session.

 

Resources:

http://www.pbs.org/parents/education/learning-disabilities/inclusive-education/making-inclusion-a-reality/
https://www.down-syndrome.org/practice/370/
http://www.ndss.org/Resources/Education/Implementing-Inclusion/

 

Looking Back on September 2017

Milwaukee

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21st Annual Statewide Down Syndrome Awareness Walk
September was a big month for DSAW!! We hosted our 21st Annual Statewide Down Syndrome Awareness Walk at the Milwaukee County Zoo on Sunday, September 24! It was a beautiful, warm day at the zoo, and we had almost 2,500 people come out to support DSAW and to raise awareness of Down syndrome. Our amazing self-advocates walked the red carpet in our 21 Showcase, we had tons of raffle prizes, lunch, music, games, inflatables, and more! Thanks to your incredible generosity, we surpassed our fundraising goal! We are so humbled and are proud to work for an organization that changes lives every day. Thank you, thank you. Thank you to our volunteers, donors, sponsors, planning committee, families, self-advocates, walkers, and to everyone who made this spectacular day as amazing as it was!

Young Leaders Bootcamp
Throughout August, self-advocates in our Young Leaders Bootcamp rehearsed a musical! On September 6, they got to perform "The Princess and the Dance Crew" for family and friends at our state office. They did a fantastic job - see for yourself!

We also harvested tomatoes and basil from our garden to make homemade bruschetta! 

October is Art Month for Young Leaders Bootcamp! We'll be exercising our artistic abilities to make individual and group creations, and we'll work out the right side of our brains learning about art! Bootcamp meets on Tuesday nights at 6pm. Sign up here!

Cooking with the Kiddos
This month at Cooking with the Kiddos we made a yummy meal of grilled cheese and tomato soup. We also baked cookies for the people who came to see our self-advocates perform the play! Cooking with the Kiddos is a fun evening of family bonding, plus a free meal... what could be better?! Cook with us next month and sign up here!

Self-advocate Michelle Levenhagen accepts a sponsorship from Erie Insurance for our Statewide Awareness Walk!

Self-advocate Michelle Levenhagen accepts a sponsorship from Erie Insurance for our Statewide Awareness Walk!

Motor Skills Playgroup
We again hosted our bi-weekly Motor Skills Playgroup at our State office! 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 October to hang out with other families and let your child play!

Young Leaders Academy
Self-Advocates joined us for our bi-weekly Young Leaders Academy twice in September. Every class involves a respite activity such as kickball or yoga, and then ends with an hour of employment-readiness curriculum. This month we went hiking near our office! Self-Advocates are invited to join our class anytime. Come out to Young Leaders in October! 

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Tween Club
Tween Club in September was super fun! We made key chains and Shrinky Dinks, and we played an exciting game of dodgeball. Parents dropped off their tweens at the State office for the night, and then they got to enjoy a casual night at our Parent's Night Out! Sign up for October's Tween Club.

Parent's Night Out
We hosted our monthly Parent's Night Out at Club Paragon again in September. Join us for next month's Parent's Night Out on October 13th!

Grandparents Group
Grandparents of a loved one with Down syndrome meet at our state office on the first Tuesday of each month! We had a great group in September. Consider joining us on October 3rd!


Green Bay

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Monthly Playgroup
For September's monthly playgroup, DSAW-Green Bay joined DSAW-Sheboygan at Henry Schuette Park in Manitowoc! Families came together to enjoy the early fall weather on a huge playground.

 

 

 

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Mom's Night Out
DSAW-Green Bay held our monthly Mom's Night Out at Mr. Brew's Taphouse! We enjoyed free appetizers and a night of casual conversation. Couples will be invited to October's Night Out on Sunday, October 22! Sign up here.


La Crosse

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Festival Foods Brat Barn Fundraiser
At the beginning of the month, we hosted a Brat Barn Fundraiser at Festival Foods for our Awareness Walk. Volunteers were able to earn money for their walk teams!! Self-advocate Rylee rocked it :)

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Down Syndrome Awareness Walk
September was our big month!! We hosted our Down Syndrome Awareness Walk at the Onalaska Omni Center on Saturday, September 16th. Despite a few drizzles in the morning, we had a beautiful day raising awareness and acceptance of our loved ones with Down syndrome! We had tons of raffle prizes, inflatables, lawn games, a delicious lunch from Big Boar, and 80s music all afternoon! We CRUSHED our fundraising goal and can continue to change lives through our programs and services. A huge THANK YOU to all of our sponsors, donors, volunteers, walk committee members, planners, families, self-advocates, Walk Royalty, and to everyone who made this day possible. We are so thankful!!

Check out news coverage of our walk here!


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Sheboygan

Playgroup
DSAW-Sheboygan & Surrounding Counties joined DSAW-Green Bay in Manitowoc for a playdate at Henry Schuette Park in early September! 

Family Zoo Day
We also had a Family Zoo Day at Lincoln Park Zoo in Manitowoc on September 10th. Several families enjoyed gorgeous fall weather and exploring the zoo. 


Chippewa Valley

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St. Croix River Valley Parent's Night Out
Parents and caregivers of a loved one with Down syndrome enjoyed free appetizers and a casual night out at Pier 500 in Hudson for our first Parent's Night Out in the St. Croix River Valley area! If you're in Pepin, Pierce, Dunn, St. Croix, or Polk county, join our St. Croix River Valley Facebook page to stay connected and up to date on our upcoming events!

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Down Syndrome Awareness Walk
September was our big month!! We hosted our 11th Annual Down Syndrome Awareness Walk at Irvine Park on Sunday, September 24. We were Powerful in Pink as around 800 people walked to raise awareness and acceptance of our loved ones with Down syndrome! Thank you to all of our sponsors, donors, volunteers, committee members, planners, families, self-advocates, and to everyone who made our walk a success! We love you!


Central WI (Wausau)

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DSAW-Central WI hosted an informational meeting about IEPs in September. Garrett Lancelle and Jessica Raschka let parents in on all there is to know about IEPs, while the kids did activities. We also served lunch!


Fox Cities

DSAW-Fox Cities launched its Teen FrienDS Club program in September! On the second Friday of each month September-May, teens with Down syndrome ages 13-19 are invited to join us at our office in Appleton for movies, snacks, music, games, and more!! While the teens are at Teen FrienDS Club, parents are invited to join us for a Parent's Night Out for free appetizers and an evening of casual conversation.


Kenosha/Racine/Walworth

DSAW-KRW hosted a playdate at Petzke Park in Kenosha! We had a beautiful fall day, and the park is accessible for all children and is huge!! 


Meet a DSAW Leader: Jessica

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Hello everyone! My name is Jessica Raschka and I am the President of the DSAW-Central WI chapter. I got involved with our local chapter after deciding to start the process of adopting a baby with Down syndrome.

This is not where my journey of Down syndrome started. I have always been drawn to individuals with Down syndrome and that lead me to an education in special education. I worked as an ABA therapist in the MN school district. I had quite a few students on my caseload who had Down syndrome. I later went on to proving ABA privately in home for families. Along with ABA I started to advocate for families in IEP meetings.

In 2009 my husband and I opened a store for special needs kids and their families. We sold equipment for therapy, visual aids, adaptive equipment and toys. Sadly we had to close our doors.

We were blessed with four amazing kids who have special needs themselves. We have a rare chromosome duplication called Duplication 15q13.3. Our kids also deal with autism, epilepsy, OCD, sensory processing disorder and feeding issues. So when it came to adopting we were happy to look into special needs adoption. After much prayer we decided to pursue adopting a baby with Down syndrome. That's how on Aug. 6th we came to be parents to a special little boy that we named Corbin. We are now apart of the Lucky Few!!

 

Looking Back on August 2017

Milwaukee

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Family Pool Party
We had an awesome time at our Family Pool Party on August 12! More than 10 families joined us for an evening of swimming and splashing around at Hales Corners Pool.

21st Annual Tom Pipines Golf Outing
On August 16, we hosted our 21st Annual Tom Pipines Golf Outing at Western Lakes Golf Course in Pewaukee! We had a gorgeous, fun day out golfing and a wonderful dinner and program in the evening. We had incredible raffle baskets and auction items to raise money for our life-changing programs and services! A huge THANK YOU to everyone who participated, volunteered, and donated. 

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Respite Day Camp 
We continued our Respite Day Camp at our State headquarters during the month of August! On two Wednesdays, middle school and high school students with Down syndrome joined us for a day-long respite camp. In August we practiced reading, talked about social skills and internet safety, took a field trip to Panda Express to work on exchanging money, had an awesome dance party, and more!

Young Leaders Bootcamp
Self-Advocates joined us for a fun month of Young Leaders Bootcamp! This month we continued rehearsing our play and are excited to perform it!

September's theme is Harvest/Healthy Cooking. We’ll be using items from the garden to cook tasty and fresh dishes. This month will grow independent living skills and continue to introduce the self-advocates more to gardening. Bootcamp meets on Tuesday nights at 6pm. Click here to sign up (ages 15+)!

Cooking with the Kiddos
This month at Cooking with the Kiddos we made delicious chicken teriyaki shish kabobs. Cooking with the Kiddos is a fun evening of family bonding, plus a free meal... what could be better? Come cook with us next month!

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Motor Skills Playgroup
We again hosted our bi-weekly Motor Skills Playgroup at our State office! 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 September to hang out with other families and let your child play!

Young Leaders Academy
Self-Advocates joined us for Young Leaders Academy twice in August. 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. Come out to Young Leaders Academy in September!

Tween Club
We had our monthly Tween Club again this month. In order to prepare for the new school year, we made our own pencil cases! Parents dropped off their tweens at the State office for a night of crafts, games, and snacks, and then parents got to enjoy a casual night at our Parent's Night Out! Sign up for Tween Club in September. 

Parent's Night Out
We hosted our monthly Parent's Night Out at Club Paragon again in August. Join us for next month's Parent's Night Out on September 8!

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Family Movie Night
DSAW families came to our State headquarters at the end of August for a slumber party-themed movie night! We watched Beauty and the Beast and enjoyed some snacks!! 

Club DSAW
This month at Club DSAW we took a trip to Tee Aire mini golf course in Brookfield! Self-advocates joined us for an afternoon of mini golf, and two of them got a hole in one!! We treated ourselves to custard at Culver's after golfing. 


Green Bay

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Haircut Fundraiser
We hosted a Haircut Fundraiser for our Awareness Walk on August 6 at HYPE Hair in Green Bay!! We were even featured on WFRV Channel 5 :) Click here to see the news story about our awesome fundraiser.

 

 

 

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Awareness Walk 
DSAW-Green Bay held our 9th Annual Down Syndrome Awareness Walk on Sunday, August 27! It was a beautiful day (the rain held out just for our event!) with amazing raffles, games, music, a train, and more. Almost 600 people attended the event, and together we colored a beautiful world! THANK YOU to everyone who planned, participated, donated, and volunteered!! We could not have done it without you. Check out the press coverage of the walk!


La Crosse

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Holmen Kornfest Parade
Walk royalty Lila Dummer and Sam Malin rode through Holmen in style (pictured right) at the Kornfest Parade on August 19! DSAW families walked in the parade to raise awareness of DSAW and Down syndrome in the community.

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Beer by Bike Brigade
On August 19,  DSAW-COTH-GLA was spotlighted as the nonprofit group at the Beer By Bike Brigade (BBBB) Ride. A fun-loving group of self-advocates, parents, siblings, grandparents, friends and caregivers united to promote the amazing work DSAW is doing in the Greater La Crosse Area. Heather Coleman, Katie Sue Cavanaugh, and Eliza Levendoski melted the hearts of 300+ riders as they handed out buttons and welcomed riders at Riverside Park. But it was Aaron Hulse who stole the show! He fully participated in the ride, after biking from Onalaska to La Crosse. It was wonderful to see Aaron making new friends and showing off his bike to the BBBB group. He showed everyone it doesn't matter if you have a bike worth $10,000 or $2; it doesn't matter if your bike has 1 wheel, 2 wheels or 3 wheels; it doesn't matter if your bike is red, black, purple, multi-color or rust; and it certainly doesn't matter if you have an extra chromosome.  

BBBB riders are very similar to DSAW. They are an eclectic group of people- some are there to socialize, some to meet new people, some to bike, some to drink, some to support local business, some to support local non-profits, and some that just want to see what the hype is about- all coming together to have a good time and support the incredible community we live in! BBBB was so impressed with DSAW-COTH-GLA that they want to throw a pop-up fundraiser for us in November. Stay in the loop by liking Beer by Bike Bridge and Down Syndrome Association of WI-Lacrosse Chapter on Facebook.  
 
 Thank you to the Beer By Bike Brigade for spotlighting our organization.  A huge THANK YOU to our volunteers/members for joining the ride and being the best darn models for our new shirts.  Click this link to order your very own I <3 HOMIES WITH EXTRA CHROMIES shirt. 

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Parent's (& Family) Night Out
Parents (and kids too!) had a great night at Deerwood Park in Holmen. Our planned Parent's Night Out turned into a Family Pizza Party! Parents got together, and childcare was provided at the park so that parents could enjoy some time relaxing together!


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Kenosha/Racine/Walworth

DSAW-KRW hosted a successful Family Zoo Day at the Racine Zoo on August 19! Many people came out to enjoy a gorgeous day at the zoo, games, exciting raffles, crafts, and a lunch catered by Texas Roadhouse.


Chippewa Valley

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St. Croix River Valley Supported Families Meeting
At the beginning of August, DSAW state staff traveled up to the St. Croix River Valley coverage area to host an All-Supported Families Meeting for families interested in expanding DSAW's programs and services in the St. Croix River Valley. Attendees enjoyed fraternal support, ate pizza, and got to learn about DSAW! If you're in Pepin, Pierce, Dunn, St. Croix, or Polk county, join our St. Croix River Valley Facebook page to stay connected and up to date on our upcoming events!

Family Pool Party
DSAW-Chippewa Valley also hosted a free Family Pool Party at Wakanda Waterpark in Menomonie! DSAW families came out to splash around at the pool, and rainy weather forecast held out for us! 


Central WI (Wausau)

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DSAW-Central WI traveled to Amherst for a trip to Peterson Dairy Farm on August 12! Families enjoyed lunch, games, sensory tables, a hay ride, and petting and feeding the farm animals.


Fox Cities

Our Fox Cities chapter hosted a free summer pool party in August. Families joined us at Doyle Park Pool in Little Chute for an afternoon of fun in the sun! Click here to check out a video of the fun!


Birth Announcement

It can be hard to know how to announce the birth of your baby to friends and family. Take a look at our sample birth announcement to give you some ideas:

Hello everyone! We are happy to report the birth of Evan Michael. He joined us yesterday at 2:36pm. Mom is recovering well and is likely headed home tomorrow. Evan weighed in at 7 lbs 1 oz and was 19.5 inches long.

We’d also like to share some additional news we learned shortly a er he was born - Evan has been diagnosed with Down syndrome. The last day has been an emotional rollercoaster but we are all doing well. After spending some me learning more about DS, we know that Evan will be a wonderful addition to our family and we are looking forward to watching him reach his own milestones just as his sister has done herself.

We realize that our announcement may prove a little awkward for some - some we’ve told in person have a hard time knowing what to say. “Congratulations” works just fine! The past 24 hours have made us realize how lucky we are to have the support of many caring family and friends and we look forward to sharing Evan with everyone.

If you’d like to learn more about Down syndrome, we encourage you to check out online resources, such as the Down Syndrome Association of Wisconsin or the National Down Syndrome Society. After reading about DS, we hope you’ll know, as we do, that Evan can and will have an amazing life.

We promise to report back soon with pictures and an update!! 

Meet a DSAW Leader: Stacy

Hi everyone! My name is Stacy Schneider and I am an Advisory Board Member with DSAW-Green Bay. I became involved with DSAW shortly after my daughter Zoey was born in 2013. She has introduced me to a whole new world that I had previously been missing out on. Zoey has a younger brother named Zander, whom she adores, but also likes to show who’s boss at times. We have two miniature dachshunds named Deuce and Bella. I work full time as a Product Engineer for a contract furniture company that my husband Tony also works for as a Project Manager. Our family enjoys spending time together, going for walks, and watching movies.

Since the birth of our daughter we have met many different families and shared our experiences with each other by being involved with DSAW.  Last year I volunteered to help with the walk committee and enjoyed planning for our biggest fundraiser of the year. This year I became a board member and have helped organize playgroups, parents’ night out, a family movie event, and our first Strider Bike camp for younger kids. We had 12 campers attend a week long adventure to help them learn about balance and coordination. It was a blast!

A Guide to IEPs

Your child with Down syndrome will experience 18 to 21 years of school. Ideally, school should help your child not only meet key developmental and social goals, but should also prepare them for life after school is over. In order to make sure your child's goals are met, it's important to properly utilize their IEP.

The Individualized Education Program (IEP) is a legal document that creates an educational plan. It spells out your child's learning needs, the services the school will provide and how progress will be measured. At first, it can be intimidating and confusing, but it doesn't have to be! 

Take a look at this IEP guide to help you create goals, work with your team, and more. This guide was created from a Webinar about IEPs that DSAW hosted in the fall of 2016. If you'd rather watch the webinar recording, click here.

Purpose of  Special Education:

1. Prepare your child for a job

2. Prepare your child for college or technical school

3. Prepare your child to live as independently as possible

Remember your specific purpose for school. If you're asking big things of your school, make sure your requests match up with the needs of your child. 

 

What to do prior to your IEP meeting:

1. Ask for a draft of the IEP.

2. Ask if the school intends to change placement.

3. Ask if the school intends to reduce services.

If you're not comfortable with the answers you receive, you can re-convene the meeting.

4. Create a collaborative infrastructure and state your top 5 most important goals.

 

The Pages Of Your IEP: 

I-9

This page is often overlooked, but it is the most important page. Have your school send you the IEP ahead of time so you can read it through beforehand. Don't skip over the I-9 and don't run out of time for it during the meeting. Reading through your IEP beforehand will help you manage your meeting time. You'll be prepared and will be able to ask the most important questions.

The I-9 describes the school's resources to help your child reach their goals. The goals justify the services. Everything that is included in the IEP needs to be there for the sole purpose of leading towards your goals. 

I-3

This page defines the purpose of the meeting and describes who can attend. You can invite anyone you want to attend meeting, but you should let the school know in advance. The local education agency (LEA) is in charge and has the ultimate authority. You will ask the LEA your bigger questions. When a school transition is expected (middle to high school) be sure to ask staff from both schools to attend.  

I-4

This page is the PLOP (present level of performance). It defines your child's present level of performance. Ask for this information prior to the meeting and read it prior to meeting so that you can bring your questions with you. 

I-5 

This is the special factors page. It asks the question, "Does the student's behavior impede his learning or the learning of others?" If yes, the IEP must include behavior interventions/ strategies. Many will say the only way to get the behavior interventions and strategies correct is to do a formal functional behavior assessment and formal behavior intervention plan (FBA and BIP) to find out why the child's behavior is preventing them from learning.

I-6 

This page captures all the goals for your child. Achieving a goal is the justification for services listed in the I-9. A lack of budget alone is not a valid justification for not providing services. The only reason a school can have for not providing services is if they aren't needed to reach the child's goals. Goals are to be individualized. It is OK for parents to introduce parent goals before and during the IEP.

I-7 

This page determines if the child should take district wide tests or alternative (significant cognitive disability; instructed using common core essential elements; student requires extensive and individualized instruction).

I-8 

This page includes a transition plan for children who turn 14. In Wisconsin, the transition plan must be in the beginning of the IEP when the child turns age 14 during the IEP year. If you're looking for help developing a transition plan for your child, we recommend contacting DSAW-Family Services, our transitions experts.

 

Legal documents:

LRE:  Stands for "least restrictive environmental". It means that, to the greatest extent possible, a student with a disability should have the opportunity to be educated along with non-disabled peers. 

FAPE: Stands for "Free and appropriate public education". Your child should be able to do the same things other kids with typical abilities can do (from yearbook to choir to golf team). If there are not try outs, the school should make available the supports to allow your child to participate with their typical peers.

 

FAQs:

What should I do for my child in the birth to 3 age group?

At least 90 days prior to IEP meeting you need to provide your school with a packet of information. An occupational therapist will most likely be required. The strategy should be to have your birth to 3 providers set up goals for your child. 

What should my age 4 IEP goals be? 

1. Social goal (inclusion)

2. Speech articulation (speech)

3. Speech language (speech)

4. Staying on task (behavior)

5. Gross motor (PT)

6. Fine motor (OT)

7. Academic (colors, shapes, etc.)

 

What should my child know going into 1st grade?

Behavior is one of the biggest challenges our friends with Down syndrome have. At age 6 your child should be able to:

1. Sit at a table for 3-5 minute

2. Wait at least one minute

3. Comply with single step directions

4. Transition from high preference activity to low preference activity

5. Tolerate boredom

6. Use a quiet voice

7. Keep their hands to themselves

8. Perform a table task

9. Show flexibility

10. Show sharing skills

11. Stay close (Lots of kids with Down syndrome are "runners" and it is important that they know to stay close when they need to.)

 

How does my IEP transfer across state lines/ school districts?

Every IEP has a common format and 90% look alike. Every school has a different personality, which accounts for 10% that is different. Some things are delegated to schools. Services are provided to students that attend private schools. Some things are based on interpretation of law suits. FBA is an evaluation and requires parent authorization. There are big differences in programs for 3 and 4 year olds. If you had a good IEP at your old school, you should be able to get the same goals at your new school. It would be hard for the new school to argue against good plans. 

 

How are homebound services different from early childhood (age 4)?

Homebound: You stay at home and a teacher will come visit, check your work, give assignments, and answer questions. This is a type of independent study. In most school districts you are still a part of your school because this is a temporary arrangement. You will return to your school when you are able to. Usually this is offered to students who are ill or having problems at school that need some time away from school. A homebound student might get 2 hours per week of a special education teacher's time. The expectation is that parents really do the teaching.

Early Childhood: A student in a robust early childhood program might get 10 hours per week of support from a special education teacher, therapists, and paraprofessionals. You will get more outside, professional help if your child is at school.

 

How do I write a good goal?

Parents need to understand the goals. Incorporate the baseline/present level into the goal preceded by the word increase and you won't fail to write a good goal. For example: John will increase his speech intelligibility from his present level of 60% understandable to unfamiliar listeners with context to 80% understandable to unfamiliar listeners with no context.

 

My child is 12 years old. How should I prepare for a high school IEP?

1. A child will age out of most child care programs at this time (start searching for child care when your child turns 11).

2. Decide how important inclusion is to your child (there is less of it in middle school and high school so you might have to start advocating more for that).

3. Spend a day shadowing a self-advocate.

4. Spend a day in high school.

5. Change your mindset to transition.

6. Attend a transition conference.

7. Talk to some parents with kids in high school.

 

How does the IEP change over time? 

 

What is the perfect transition?

When the last day of school is no different from the first day after school.

 

What should our goals be for age groups?

6-16: social, speech, behavior, personal safety, reading, writing

17-18: social, speech, behavior, recreation, employment, personal safety, college prep

19-25: social, recreation, employment, personal safety, independent living

 

What is the best way to measure progress on a goal?

Tallied observations sent home to the parents daily. Be conscious of the time and cost of collecting data; perhaps you really only need data from the school one day per month. Other measures include work samples, anecdotal observations, and informational observations. 

 

What is the difference between Facilitated IEP and Mediation?

Facilitated: DPI pays for someone to facilitate your IEP. In this case, many parents feel their voice was heard and the IEP was fair.

Mediation: A process to reach agreement with the help of a mediator. This gives you the ability to ask open ended questions and get answers. 

 

We hope this guide has helped you feel prepared for your upcoming IEP! If you're looking for this information in a more interactive format, consider watching the recording of our IEP Webinar. Want to schedule a consultation for individualized help with you IEP planning? Contact DSAW-Family Services!

Looking Back on July 2017

Milwaukee

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Down Home BBQ
We had a fantastic day at our Down Home BBQ on July 8. We partnered with Gigi's Playhouse Milwaukee and Wisconsin Upside Down to host over 200 people at our state headquarters in West Allis! We had food, a splash zone, a live band, inflatables, yard games, a fire truck, crafts, face painting, and more! Thank you to all who helped us make this event possible. 

 

Respite Day Camp 
We officially began our Respite Day Camp in July! On Wednesdays at our state headquarters, middle school and high school students with Down syndrome are invited to join us for a day long respite camp. In July we practiced money counting and reading, played outside, did a social skills activity, and planned a menu of food that we cooked. Sign up for respite day camp on Wednesday August 23 and August 30 for a supportive environment for your child.

Young Leaders Bootcamp
Self-Advocates joined us for a fun month of Young Leaders Bootcamp. This month's topic was Acting! We've been rehearsing a play each week, and we will continue to rehearse through August for our big final performance. 
Consider signing up for our FREE August Bootcamp on Acting (ages 12+).

Cooking with the Kiddos
This month at Cooking with the Kiddos we made cheeseburgers and a scrumptious apple crisp. Cooking with the Kiddos is a fun evening of family bonding, plus a free meal... what could be better? Join us next month.

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Motor Skills Playgroup
Our Motor Skills Playgroup at the state office in West Allis continues to grow! 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 August to hang out with other families and let your child play!

 

Young Leaders Academy
Self-Advocates joined us for Young Leaders Academy twice in July. 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. Come to Young Leaders Academy in August!

Parent's Night Out
We had a fun group of parents join us for Parent's Night Out at Club Paragon in Greenfield in July. Don't miss next month's Parent's Night Out!

Family Movie Night
We will have an awesome night watching Madagascar outside, drive-in style at the end of July! Join us in August for another drive-in experience!


Green Bay

DSAW-Green Bay hosted their monthly playgroup at the beginning of the month at Sand Acres Park in Ashwaubenon! Join us on August 5 for our next playgroup at Pamperin Park!

 

We also hosted a Dad's Golf Night Out at The Woods Golf Club in Green Bay! Despite the rain, Dads were able to come together for a fun dads-only evening.

 

Our moms had a night out too! DSAW-Green Bay moms got together in Sturgeon Bay for an evening of food and for a pontoon boat ride on the lake. We will not be holding a Mom's Night Out in August due to our Awareness Walk, so come hang out with DSAW moms again in September. 


La Crosse

DSAW-COTH-GLA partnered with the La Crosse Area Autism Foundation and the Dahl Family YMCA to offer cooking classes for tweens, teens, and adults with special needs. The sessions were great and the self-advocates made several fruity treats! The classes were even featured in the La Crosse Tribune! Click here to read the article.

We had lots of fun at our Breakfast Club fundraiser on July 15. We had 3 Guest bartenders from UW-L Motor Development Program, Garth, Quintin, and Joe. They were lots of fun! We had 2 members Jenny Levendoski (mom of Eliza) and Andrea Finney (mom of Levi) come and volunteer to have eggs broken on their head in a fun game called egg roulette; customers buy eggs for $10 and they can break them over the volunteer's head, But the egg may be raw or maybe hard boiled! If you missed it don’t worry! We will be doing it again next year - just keep a look out for our upcoming events. 


Central WI (Wausau)

DSAW-Central WI hosted a pool party on July 15 in Wausau. Around 50 people came out to enjoy the summer weather. Our event even made the local news! Chapter leader Miriam Marting was interviewed on TV, and an article about the event was published online. Read the article here!


Sheboygan

 

DSAW-Sheboygan hosted a family picnic at Lakeside Park in Fond du Lac this month. Families came together to grill out, play yard games, explore the park, and meet new friends. We had sack races and raffle drawings, and the park had an animal barn, train, carousel, and huge playground!! It was a wonderful day for DSAW families. 


Chippewa Valley

DSAW-Chippewa Valley will host a Parent's Night Out in Chippewa Falls at the end of the month. Parents and caregivers of individuals with Down syndrome will be able to connect over free appetizers and casual conversation. 


What's the Deal with Awareness Walks?

DSAW hosts seven Down Syndrome Awareness Walks each year. These annual walks draw more than 7,000 walkers, volunteers, donors, sponsors, and partners across the State under one collective mission – to raise awareness and promote inclusion, diversity and acceptance of people with Down syndrome in our communities and in our lives. 

What is a Down Syndrome Awareness Walk?

Down Syndrome Awareness Walks raise awareness, acceptance, and access for individuals with Down syndrome across Wisconsin. For the past 21 years, the Annual Awareness Walks have been the key fundraising mechanism that allow us to enter and serve communities across the state to help individuals and families with special needs prove they are stronger than the obstacles they face. 

Why do we walk?

We walk to tell our stories. That our children are remarkably gifted, talented and beautiful creations. We walk because our sons and daughters battle every day for the same liberties that are so often taken for granted by our society. We walk to create new programs and services in under-served communities. We walk to tell our stories to the world. DSAW is 100% funded by private individuals and concerned corporate citizens and foundations who believe just as we do that with appropriate investment and just the right amount of supports, our loved ones can accomplish amazing things!


How many awareness walks are held in Wisconsin each year? 

DSAW hosts 7 Awareness Walks each year. The dates for the 2017 Walk are:

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How are funds from awareness walks used?

All proceeds from the Awareness Walks go towards DSAW's life-changing programs and services, including Parent's First Call, Medical Outreach, Fraternal Support & Programming, DSAW-Family Services (one-on-one support, Roadmap Sessions, and transition services), Educational Programming, Awareness Programming, Advocacy, and more.


Are there other activities at awareness walks?

Yes! Along with the walk itself, all of our walks plan exciting pre-walk festivities, contests, prizes, and delicious food. We call this our "family festival" -- the Awareness Walk is an amazing day to celebrate our friends with Down syndrome with your entire family!


Why should I form a team?

It’s the perfect way to celebrate your loved one with Down syndrome. This day, this walk, and this team are all for them!

You get to participate in a BIG Down Syndrome Awareness party. Trust us, you don’t want to miss it!

Your team can be as large or as small as you want. Your team can have 2 people, 200 people, or 2,000 people! Invite your friends, family, neighbors, coworkers, church family, or rotary club to join in the fun. 

For our Milwaukee and La Crosse Walks, you don’t even have to be present to form a team! When you sign up as a "Virtual" Walker, you commit to run or walk in honor of your loved one with Down syndrome. Then, post photos of your walk/run on DSAW’s Facebook Page! Whether you’ve moved away from Wisconsin, will be on vacation, or want to support your loved one who lives in Wisconsin, our community extends far beyond our state’s borders. 

Your fundraising changes lives. Although fundraising is optional, the difference you make in the lives of more than 4,500 families across the state is tremendous. Whether you raise $10 or $10,000, YOU are making a difference for people with Down syndrome and their families in Wisconsin. Some teams choose to fundraise a LOT and compete for our top fundraising prizes (which are amazing, by the way), and some teams choose to fundraise just a little bit. Just remember, fundraising does not have to be scary! Most people are happy to give to a cause that is important to you and your family.

Why form a team? Because it takes a village to raise a child. When you invite someone to join your team, it’s one more way of saying “thank you” -- “thank you for supporting my loved one with Down syndrome!”


 
 

This blog post is sponsored by Erie Insurance.

Questions About Birth to Three

What is Birth to Three, and what is its purpose?

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Birth to Three is Wisconsin’s Early Intervention program. The concept of “early intervention” is quite simple. If a child with a developmental delay receives proper help early on, problems in the future may be minimized. A child, his/her family, and the educational system will benefit by the reduced need for long-term intervention throughout the child’s school years.

What kinds of things will my child with Down syndrome do in Birth to Three?

Your child will participate in a variety of activities planned by licensed therapists, teachers, and nurses. The setting for these activities -- which are designed to provide physical, occupational, and speech therapies as needed -- may include regularly scheduled home visits, play group activities, individual therapy at home, daycare or hospitals, or other combinations that work for your family. You child’s record will be kept confidential.

Will I have any say regarding my child’s participation in any of these therapies?

Absolutely! After eligibility is determined (and most children with Down syndrome usually qualify), the Individualized Family Services Plan (IFSP) is written with help from the parent(s) and services begin.

When should my child start Birth to Three Services?

Some families choose to enjoy their babies and adjust to life with a new little one before jumping in. Others choose to start therapy right away. Ideally, a baby would start therapies within the first 8 weeks of life if that works in your family schedule.

Is there an age limit to receiving Birth to Three services?

The age limit is newborn to three years. 

 

Types of Therapies

Pediatric Physical Therapy (PT) is the treatment of children with physical disabilities by a licensed professional physical therapist who is educated and trained in the diagnosis and treatment of children with physical disabilities. The goal of PT is to improve care and provide a treatment program to obtain or restore the highest level of independence and function in quality of movement, walking, strength and endurance, gross motors skills, posture, positioning for functional skills, coordination, and mobility for the child with the disability.

Pediatric Occupational Therapy (OT) is the treatment of children with physical, emotional, and/or intellectual disabilities from birth to 21 by a licensed occupational therapist educated in a variety of diagnoses and therapies for such children. The goal of OT is to help make learning possible by helping children develop the underlying skills that will lead to independence in personal, social, academic, and vocational activities. This includes remediation of difficulties the child may encounter with ADLs (Activities of Daily Living) such as dressing, grooming, feeding, etc.

Pediatric Speech Therapy addresses the child’s complete communicative needs. This often begins with the development of non-verbal communicative skills such as attending to the speaker and the activity, taking turns, and making appropriate eye contact. It is designed to help with speech disorder, often referred to as articulation or phonological disorders - problems with the way sounds are made or how sounds are sequenced to form words; oral-motor problems resulting in difficulty producing speech sounds; and delays in feeding skills. A speech-language pathologist is a specialist in the normal development of human communication. The Certificate of Clinical Competency (CCC) assures you that a speech-language pathologist has been qualified to provide clinical services by the American Speech-Language Hearing Association (ASHA). 

 

For more helpful tips for new and expectant parents, check out the digital version of the Parent's First Call Magazine.

 

 
 

This blog post is sponsored by Dries Painting. Thank you for your support!

Meet a DSAW Leader: Rachel

Hi everyone! My name is Rachel Reit, and I am the Programs and Communications Coordinator at DSAW. I work out of the state headquarters in West Allis. I started with DSAW in September 2016 as a Marketing and Communications intern, and I joined the staff in my new role in January of 2017! I graduated from Marquette University in May with a Master of Arts degree in Communication, and I have Bachelor’s degrees from Marquette in Communication Studies and Psychology.

I always have known that I want to spend my life helping others. It’s been my dream to work in the nonprofit sector, and I’m so thankful to be a part of the DSAW family! I spend most of my hours here working on planning events, marketing, and running the social media accounts for our five outstate chapters (Central-WI, Chippewa Valley, Green Bay, La Crosse, and Sheboygan). I also am working on outreach to areas of the state where there currently is no DSAW coverage. We hope to reach everyone in Wisconsin with our programs and services! I cherish the time I get to spend with the self-advocates, and I get overly excited to see cats and deer walk by my window. 

In addition to all of my beautiful friends with Down syndrome at work, my boyfriend’s older sister Sarah also has Down syndrome. She’s been making me laugh and supporting me for the last four years. She and all of my DSAW people encourage and inspire me every day. I am passionate about our mission, and I’m thrilled to be changing lives across the state of Wisconsin!

What do I do when I’m not at the office? I love hiking and camping, spending time with my family, reading, eating anything chocolate, having Disney sing-a-long sessions with my brother, and volunteering at my church.  

If you have questions, suggestions for events, or just want to say hi, feel free to email me at rachel@dsaw.org or give me a call at 414.327.3729 ext 104.