An Interview with Gnat and Corky, Author/Illustrator Team of Addison the Light Catcher

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DSAW had a chance to sit down author Courtney Kotlowski and artist Natalie Sorrentino (aka Gnat & Corky), who interview real kids and create stories that capture their spirits. They talked with Addison and her brother Asher, who has Down syndrome, and realized that their story needed to be told! Addison the Light Catcher is a story about love, admiration, and the special bond between siblings. It sheds light on the power of advocacy and the magic inside everyone. Read on to check out our interview with Gnat and Corky!


How did your book series come about?

It started as a blog where children could answer Gnat & Corky’s questions. We would create a story and watercolor illustration based on the spirit of the kids. The response was overwhelming and the stories are so universal that we thought a book series would be something special to share. This has been a nearly 3-year process and we are so happy to be published by Orange Hat Publishing in Waukesha. 

What is Addison the Light Catcher about? 

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It’s a story about love, advocacy and the special bond between siblings. Addison is her brother Asher’s biggest fan and advocate. She is a “light catcher” for all children with Down syndrome and special needs. The story is a fictional one about Addison’s “super-duper light catcher” that she made when her brother was born to share his light with the world. She tries to capture his light, but the light is scared, nervous and shy. The light eventually surrenders and she throws it up into the sky where it becomes a star/light for all the world to see and love. 

What do you want people to take away from reading Addison the Light Catcher?

That there is light inside of everyone. That it should be found, shared and honored. We are all light catchers for each other in this world. 

Define Light Catcher: 

A person who sees the beauty, joy, potential and light in others and shares it with the world.

What age(s) are your books targeted for?

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All people of all ages. Really they are universal stories that are meant to be read to the little ones, treasured by the older ones and shared and spread by the oldest. Our books transcend age. 

How do you come up with the stories?

They come from interviewing the kids and letting their spirit shine. I never want to place the story on the child, I want it to come to me in the middle of the night when something they said ignites a universal message that needs to be shared. Each story is built from the soul of the child. 

What is your process?

Children submit their answers at www.gnatandcorky.comwe read all submissions and then Courtney interviews the child. Once the story is drafted, Courtney hands it over to Natalie who paints a watercolor illustration. Our books are a much longer process because each story is now multiple pages with multiple illustrations. It’s literally soul work and sometimes the magic is there and sometimes you have to wait for it to spark up again. 

How do you work so collaboratively together?

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We have a very respectful and playful relationship. We are connected on another level. There is complete trust and awe on both sides. We don’t question each other’s talent- we embrace and honor it and from that we have created literally hundreds of pieces! We are constantly creating things. We are both living/doing our passion and it’s just a joy to see it come together and have people respond as they have. We also laugh a lot and talk nearly every day. 

What are some of the other things Gnat and Corky have in store?

We have a Gnat & Corky Snippet book that is full of feel good sayings, poems, quips, and advice and The Answer Book that is a collection of all the answers from the submissions we’ve gotten over the years. 

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What is the message you are trying to spread/send with The Gnat & Corky Series?
Empathy, joy and acceptance. Everyone has a story. We all have a spirit and a purpose for being here. Our hope is that this collection, when put together, starts to paint a story of how similar our differences can make us when we’re all tied together.  We hope people treasure these books forever. 

What are some of the other titles/books and what subjects do they cover?
The first four are Addison the Light Catcher, Ken the Keeper, Will It, and From Malena with Love

Ken the Keeper comes from the spirit of a boy who started a no-kill animal shelter in the Philippines. This story is about tending and caring for the helpless and  brining compassion forward to help all living things thrive. 

Will It is a story about living life to the fullest, without fear or regret- William, is a teenage who is nearly blind, but that doesn’t stop him from doing anything.  The message is be brave and try, which is the spirit that Will exudes. 

From Malena with Love is a story about brining color back into the world after it goes gray- it asks the  reader how they would bring love back if it went away- Malena decides to write love notes to everything in the world and by doing so, the color starts to come back. Malena is Natalie’s daughter and her interview was all about love and color and brining joy to people’s lives. Her spirit is loving and joyful. 

How can kids submit their answers to Gnat & Corky’s questions?

Visit www.gnatandcorky.comand answers our questions. 

Where can fans/readers find you?

You can follow us on Facebook and Instagram @gnatandcorky or contact Orange Hat Publishing to schedule a visit or reading at www.orangehatpublishing.com

Meet a DSAW Leader: Marie

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My name is Marie Sherman and I’ve recently been inducted as a member of the DSAW Sheboygan chapter board! I am also the Project Manager of the 2018 DSAW Sheboygan Awareness Walk! I’ve been married to my wonderful husband, John, just about 5 years and am a mother of two incredibly amazing children. My family and I moved to the Sheboygan county from the Minneapolis, MN area just over 3 years ago, and I currently work full-time.

My son, John Wayne, is 3 years old and a wild, loving young man who is an attentive brother to his little sister Evelyn. Evelyn just turned 11 months old this past weekend, and how the time has flown! We found out that our sweet girl was blessed with an extra chromosome about 10 days after her birth when the karyotype lab returned. We were quickly connected with the DS clinic at Children’s Hospital, where the experienced team helped connect us with Parent’s First Call program and DSAW to name a few. We’ve learned how much this diagnosis has blessed, and enriched our lives. Evelyn shows us daily tenacity that is inspiring. Her graceful determination tackles whatever life throws her way without losing the infectious and loving personality she is known for. She always leaves those who meet her with a smile! 

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Being introduced to such a vast and compassionate community has compelled me to get involved with DSAW. This new family we’ve been introduced to has brought new experiences, resources, knowledge, friendships and adventures. I am eager to help give back to a program and community that has already enriched my life so much, and will continue to touch more.  Looking forward to what the future has in store!

Flopping and Bolting in Individuals with Down Syndrome

by Kurt Reising

Flopping and Bolting are common behaviors for individuals with Down syndrome (Ds). Flopping is somewhat like a form of non-violent protest.  My daughter uses this tactic from time to time. She drops like a stone with a lot of force even on hard floors, yanking her arm out of my hand, without regard to possible injury.  Bolting can be even more dangerous, as a child may suddenly take off without considering what the consequences may be. Both behaviors can be frustrating, embarrassing, and potentially dangerous, but there are some strategies that may help deal with these common behaviors.

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Coming up with ways to ease flopping depends a great deal on why the child is displaying the behavior. Children with Ds sometimes have trouble moving to new activities.  If you are going to do something that the child does not enjoy, (or even activities they DO enjoy), and do not prepare them for the transition, it increases the likelihood that the child will act out.  While prepping can help, all the preparation in the world will not help if the child simply does not like or want to do something.  You may be able to anticipate the activities that trigger flopping and come up with a way to make the activity something the child can tolerate.

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Bolting, like flopping, is easier to deal with if you can understand why a child does it.  Children with Ds have trouble controlling their impulses.  If they see something interesting they may just go for it. This can be a potential disaster because they are not going to consider the possible danger in doing so. My daughter is a bolter, and she does it for the entertainment of reaction.   She likes to be chased, and probably enjoys the attention and concern she sees in the faces of the people chasing her.  Seeking the thrill of all that attention can also be a motivation for a child to bolt. Dr. Naomi Swiezy states that children enjoy attention.  If they do not receive positive attention they will resort to behavior that gets negative attention, as they would rather have negative attention than none at all.  Children learn over time what actions get the best responses, positive or negative.  This is called differential responding. 

Many common strategies for dealing with these behaviors are ineffective.  It is logical to believe that you could convince your child to get up from their flop by yelling at them.  You may even try threatening them by taking away a toy or a privilege such as electronics, or try promising them a reward if the agree to comply. You may feel that looking them in the eye and giving them a stern lecture will let them know just how scared they made you feel, and ensure that they will never do it again.  Unfortunately, these strategies have very little positive impact, and may actually feed future similar behavior.

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What can a parent do when the traditional discipline tool belt offers no help?  In the case of flopping, it is best taken care of proactively. Let your child know what activity they can expect.  My own daughter has trouble going to bed, but when I gently remind her in a positive tone a couple of times before bedtime she does better. Preparing a child for activities can get more sophisticated if need be. Many behavior experts, including Dr. David Stein, recommend visual schedules. These are explained in his book Supporting Positive Behavior in Children and Teens With Down Syndrome. Visual schedules consist of pictures of activities and places that explain the routine for the day. These reminders let the child mentally prepare for what they are about to go through, so they won’t feel surprised by something they may not want to do.   Anticipating activities that may cause behavior issues and being prepared yourself can also help.  Having a plan to make an activity more pleasant for the child is a good strategy. Dr. Stein uses an example in his book of making grocery shopping fun by creating a visual shopping list with pictures and a reward at the end.  This way the child is engaged, receives positive feedback for finding the listed items, and ultimately gets to do or receive something they will enjoy at the end. Nobody knows your child like you do, so any creative idea with similar elements may be effective for a particular individual.  

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When dealing with bolting, your reaction is the key to easing the behavior.  The child may be in danger when bolting occurs, so immediate reaction is required if there is any chance of the child being hurt.  Once the child is safe, the work begins.  It is important not to validate their behavior as a source of exciting attention.   Although it is extremely difficult, do not become visibly upset.  Dr. Stein recommends calmly getting the child somewhere safe, and gently stating “no running.”   Simple, direct language delivered with a poker face has a better chance of reducing the behavior.  In the case of children sneaking away, prevention is important.  Putting hard to reach locks on exits, creating visual cues like stop signs at exits, or even installing alarms can help keep a child from sneaking away.  In the age of technology, it is possible to give your child a discrete GPS device so they can be quickly located if they do leave.  It may also be a good idea to contact the local police and your neighbors to let them know the situation.

Flopping and bolting are common.  They can be embarrassing and even dangerous for you and your child.  Understanding why these behaviors occur is important in developing strategies for their reduction.  Some traditional methods for prevention of these behaviors may exacerbate the problem. While finding prevention methods that work for you and your child may require unconventional means, there are ways of dealing with these behaviors.

Looking Back on May 2018

Milwaukee

Monkey Joe's Party
On May 12, DSAW families from Southeastern Wisconsin got together at Monkey Joe's in Waukesha for a morning of jumping, sliding fun! We enjoyed an hour at Monkey Joe's before it opened so we could have the place to ourselves! Come out next month for our Family Activity Day -- we're going to Miller Park for a Brewer game on June 24!

 Thank you to Pat Laws and the Wisconsin Association of Mutual Insurance Companies for their donation of more than $1,200!

Thank you to Pat Laws and the Wisconsin Association of Mutual Insurance Companies for their donation of more than $1,200!

Sibling Events
Last month we also hosted two events for kids who have a sibling with Down syndrome! One session was designed for kids ages 9-14; they made personal pizzas, played games, and learned more about Down syndrome. The second session was for kids ages 4-8. The younger siblings read books, did a craft, and talked about their siblings together! Stay tuned for more programming that focuses specifically on siblings!!

Circles Class
In May we also launched a Circles Class for individuals ages 12 and up. The Circles program teaches students how relationships can be formed and maintained according to the social norms & social boundaries of our day and age. Our newest DSAW staff member Erin Miller teaches the class with her job coach, Mary West. We're beginning a second session in July! If your child could benefit from learning about personal boundaries and relationships, register here!

Young Leaders Bootcamp
We spent this month at Bootcamp gardening! We planted seeds, worked in the DSAW community garden, and started growing blackberries, basil, raspberries, and more! 

Bootcamp meets on Tuesday nights at 6pm. Join us in June to learn about outdoor and camping skills! 

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Cooking with the Kiddos
This month at Cooking we made super yummy personal pizzas! Cooking meets on the first and third Wednesday of the month at our state office in West Allis. Sign up to cook with us in June!

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. In June, we will start offering FREE music therapy during our regular playgroup session. Playgroup runs from 9:30-11:30am, and we'll have music therapy from 10-10:45. Sign up to join us!

Young Leaders Academy
Our Young Leaders Academy at our West Allis office meets every second and fourth Thursday of the month. In May we launched Young Leaders on the Northside! They meet on the first and second Friday nights. Classes start off with an energetic game and end with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. Come out to Young Leaders Academy in June in West Allis or in Fox Point!

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Tween Club
The second Friday night of the month is always our favorite since we have Tween Club! This month was right before Mother's Day, so we decorated flower pots to give to our moms on Sunday! Next month's Tween Club will be on Friday, June 8. Drop your 10+ year old off for a night of games, snacks, activities, and more. Sign up to join us!

Parent's Night Out
Each month, DSAW parents, grandparents, and caregivers get together for a night of casual conversation and free appetizers. We meet every second Friday of the month! In May, we switched up our location and went to Cleveland Pub. We loved it so much that we're going there again in June! Come hang out with us on Friday, June 8th.

Family Movie Night
Every fourth Friday of the month, we invite families to a movie night at our office in West Allis!  Parents are invited to stay with their kids, or drop them off for a night of respite. In May we watched Paddington. What a great movie! Watch Paddington 2 with us next month :)


Green Bay

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Monthly Playgroup!
DSAW-Green Bay hosted a joint playgroup with DSAW-Sheboygan. Families met up at Henry Schuette Park in Manitowoc for a morning of fun!! Join us next month at Optimist Park!

 

Mom's Night out
Our awesome Green Bay Moms came out to Hagemeister Park for an evening of appetizers and conversation. We had a great time! Join us next month at Luigi's Pizza Palace!

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Family Zoo Day                                           
Last but most definitely not least, DSAW-Green Bay families met up at the DeYoung Family Zoo in Michigan on Memorial Day! We had a birthday party for all the animals in the zoo and even got to feed and pet some critters in the petting zoo! 


Fox Cities

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Circles Class
DSAW-Fox Cities Circles class on Friday nights was a huge success! During April and May, teens and young adults got to come together to learn about safety and social boundaries! We plan to offer this class annually. 

New Parent Support Group                                 We also held another New Parent Support Group at the DSAW-Fox Cities office! This group is a kid-free zone where parents or caregivers can discuss their feelings in a non-judgmental environment. Stay tuned for future dates.


Sheboygan

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Above & Beyond Children's Museum Field Trip
May was our third trip to the Children's Museum for Special Needs Night! The exhibits were adapted, sound was turned low, and the museum was closed to the general public. What an awesome field trip!! Join us in June for this monthly outing!!

All Abilities Dance Class
We are having a kickin' time getting moving at our All Abilities Dance Class at In Motion Dance Studio! Dancers of all ages and experience came out to learn about proper stretching techniques and foundational dance moves. Students are invited to join the class at any time. We still have 3 sessions left! Sign up today!


North Central    

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Family Bowling Outing    
DSAW-North Central gathered at Hodag Lanes for a family friendly afternoon of fun! We had an AWESOME turn out for this event!!! Strikes all around! This was our first event in Rhinelander, and we can't wait to continue offering programs and events to families in this area of Wisconsin!                                                                                                         


La Crosse

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Self-Advocate Movie Outing
Our self-advocates had a great time at an outing to the Rivoli Theatre & Pizzeria! We got together for lunch and a showing of Sherlock Gnomes! Stay tuned for details on a self-advocate picnic in August!                                           

All Abilities Day                                                     On May 12, the Down Syndrome Association of Wisconsin- COTH-Greater La Crosse Area and the La Crosse Area Autism Foundation partnered to host an "All Abilities Day" (formerly "Light It Up Blue for Autism") at the La Crosse Wellness Center. Local therapy providers, disability resources, and businesses that have adaptive lessons were present to tell attendees how they serve individuals with Down syndrome/other special needs! A special thank you to the La Crosse Wellness Center for providing the facility, ALL of our vendors who came and the wonderful volunteers from DSAW and LAF that made this event a success. 

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Parent's Night Out
On May 20,  DSAW-COTH-Greater La Crosse Area enjoyed a beautiful night on the patio at Fiesta Mexicana.  It was great to see some new faces join the fun! Parent's Night Out events are a great way to share information with other parents, brag about the accomplishments of our loved ones with Ds, support one another with issues they might be facing and to have a nice out with friends.  Join us for our next PNO, July 21st at Vernon Vineyards! 


Chippewa Valley

Parents Night Out
Our Chippewa Valley families got together at 29 Pines at the end of this month for a night out! We had a great time and excellent food! Make sure to sign up for our other upcoming events! 


Central WI

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All Abilities Play Date
Last month we got together at the Greenheck field house for an all abilities playdate! We had music, snacks, games and even a bounce house!!! 

Mom's Coffee Date
We also hosted a Mom's coffee date at Vino Latte! Moms, grandmas, female caregivers and siblings all got together to enjoy some coffee and conversation with other women who have a loved one with Down syndrome.


Rock County

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We are so excited about our partnership with the Madison Area Down Syndrome Society!

In May, MADSS and Heartland Church, in partnership with Selfless Ambition, hosted A Night to Remember prom for teens and adults with special needs. What a night!

Join us for a Beloit Snappers Baseball Game on August 12th! Stay tuned for details about a family mini golf event, pool party, summer picnic and more!!


Meet a DSAW Leader: Erin

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Hi! My name is Erin Miller. I just started working at the DSAW state office in West Allis, and I’m on the autism spectrum. I graduated from UW-Whitewater with a degree in English Writing , and am on both the Autism Society and A.L.A.S board (Alianza Latina Aplicando Soluciones); promoting the independence of people. Everywhere I go, I find connections in our communities! When I worked at an inclusive summer camp, we started out autism-focused.  Then we found *so many people* needed acceptance and inclusion. So we decided to open it up to everyone! When I started lesson planning at DSAW, I learned that both the students and I do better with extra time to think.  People with disabilities are often said to have special needs, but really, everyone needs help sometimes.  With the needed support, we can live great, big beautiful lives! I look forward to connecting with you! 

 

5 Strategies for Dealing with Behavior Issues in Children with Down Syndrome

by Kurt Reising

Are you looking for strategies to help improve the behavior of your loved one? Look no further! These five strategies tend to work well for individuals with Down syndrome.

1. Routine

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Routine and structure are important for any child, but this is especially true for children with Down syndrome (DS). Individuals with DS often have trouble receiving and remembering verbal direction and remembering verbal directions if they are too complicated. Typically giving structure to small daily activities like getting dressed, bathroom activities, and meal times will help children learn these simple tasks. Sticking with the routine and talking through them in short statements of direction can be great for avoiding any negative behavior that may come from these situations. Many behavior experts, including Dr. David Stein, recommend visual schedules. These are explained in his book Supporting Positive Behavior in Children and Teens With Down Syndrome. Routine is also aided by prepping your child for the next thing they will need to do. Dr. Mary Pipan writes that transitioning between activities requires preparation, and can be eased by preparing your child verbally or visually for the coming transition. She also recommends visual schedules. Visual schedules are made of pictures of activities and places that explain the routine for the day. 

 

2. Reward

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Positively reinforcing good behavior is a powerful motivation for children, and especially for children with DS. Rewards can take many forms. One form is promising something in order to persuade a child to perform a certain behavior you would like them to perform. This reward can take the form of a treat or an activity that the child likes. These are spur of the moment bargains one might strike with a child, but many child behavior experts recommend a more structured reward system like a token economy. A token economy is a structured reward system normally consisting of a simple chart with pictures of positive behavior. The chart is check marked when good behaviors are exhibited, and then a reasonable reward is given to reinforce and encourage the behavior to continue. Dr Stein has a section in his book with recommendations for setting up a token economy. 

Another form that can have lasting effects over time is simply praising good behavior. It is important and powerful because praise immediately gives a child a positive feeling they can associate with the behavior they just displayed. When the child displays a positive behavior, such as picking up toys when play is over or even eating their vegetables, it is important to let them know they have done a good job. High fives can go a long way!

 

3. Choice

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Whenever possible, give your child a choice. This will help them feel empowered and it will also minimize negative behavior triggers. By allowing the child to choose between items you have already approved, you won’t have to force choices upon them. These can be simple choices, like what cereal to eat for breakfast or what shirt to wear to school.

Flexibility in discipline is also important. Children with DS (along with typically-developing children) will often misbehave simply for attention or a reaction, so it is important not to take the bait. Often any reaction, be it anger or laughter, is all they are looking to achieve. Ignoring minor inappropriate behavior is better than reacting. A reaction would positively reward the very inappropriate behavior you want to stop.  Dr. Stein adds that when all else fails, preserve the relationship with your child. Yelling at your child for every little thing does not foster good behavior, and may do more harm than doing nothing at all.

 

4. Redirection

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Children with DS can easily slip into the habit of sensory seeking. Sensory input are messages we receive from our five senses, and can be used by children to sooth themselves in times of stress or to act out when they are feeling frustrated or unhappy. Some of the things they may choose to fulfill their sensory seeking may be annoying or displeasing. Some behaviors may occur out of boredom and a need for attention. Examples of sensory seeking behaviors include jumping, frequently touching others/objects, and making loud noises.  

Sometimes the best way to deal with sensory seeking is to help the child direct their free time activity by spending some time with them playing, reading a book, or coloring. These behaviors can often be anticipated. Once you know what may trigger the negative activity, you can be prepared with a replacement activity to redirect the child to a positive activity.

 

5. Consistency

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Consistency is important for behavior modification. Children naturally test boundaries and make unconscious notes of how their behavior is dealt with and how that made them feel. It sounds simple to be consistent, and it seems simple to follow a plan of encouraging good behaviors and discouraging bad, but Dr. Stein warns that human nature has a tendency to notice the bad over the good. He also stresses the importance of presenting a united, consistent front. This means that siblings, teachers, and other caregivers must be on the same page regarding your strategies.


Sources:

Stein, D. (2016) Supporting Positive Behavior in Children and Teens With Down Syndrome: The respond but Don’t React Method. Bethesda, MD Woodbine House. 

Pipan, M., MD. (2014, February 14). Managing Behavior in Children with Down Syndrome: Part 2. Down Syndrome News, Retrieved March 3, 2018, from ndsccenter.org

Pipan, M., MD. (2013, October 15). Managing Behavior in Children with Down Syndrome: Part 1. Down Syndrome News, Retrieved March 3, 2018, from ndsccenter.org 

 

Looking Back on April 2018

Milwaukee

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Family Bowling Event
On April 14, families took a trip with us down to Racine for a Family Bowling Event! We had almost 70 people come out for an afternoon of bowling, pizza, and fun! Come join us in May for a free Family Activity Day at Monkey Joe's in Waukesha!

Young Leaders Bootcamp
At Bootcamp this month we continued to explore our self-directive voices and got to present to the board about our lives! We also teamed up with Young Leaders Academy and took a trip to the Medical College to learn about advocating for ourselves at the doctor's office.

Bootcamp meets on Tuesday nights at 6pm. Join us in May for gardening month!

Cooking with the Kiddos
This month at Cooking we made some pretty delicious meals! At the start of April we made homemade orange chicken, and at our second session we made spaghetti sauce, garlic bread, and fruit pizza. Cooking meets on the first and third Wednesday of the month at our state office in West Allis. Sign up here to join us in May!

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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 May!

Young Leaders Academy
Our Young Leaders Academy meets every second and fourth Thursday of the month. This month we took a field trip to the Medical College of Wisconsin to learn about self-advocacy at the doctor's office and meet with the medical students. We even got to take some vitals! Classes start off with an energetic game and end with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. Come spend time with us in May!

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Tween Club
We had an AMAZING month at Tween Club in April. We made our own little sail boats to race in a rain gutter regatta! We had a great turnout and a lot of incredible volunteers. Next month's Tween Club will be on Friday, May 11. Drop your 10+ year old off for a night of games, snacks, activities, and more. Sign up today!

Parent's Night Out
Each month, DSAW parents, grandparents, and caregivers get together for a night of casual conversation and free appetizers. We meet every second Friday of the month! In May, we're switching it up and going to Cleveland Pub on May 11! Join us!

Family Movie Night
Every fourth Friday of the month, we invite families to a movie night at our office in West Allis! In April we watched Ferdinand!! Parents are invited to stay with their kids, or drop them off for a night of respite. Come out for movie night next month.

Club DSAW
On the fourth Saturday of the month, we get together with self-advocates ages 15+ for a special Club DSAW event! This month we went bowling at Bluemound Bowl! In May we will be taking a trip to the Milwaukee County Zoo for an afternoon of fun! Stay tuned for more details!


Green Bay

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Get Air Playgroup
DSAW-Green Bay hosted its monthly playgroup at Get Air Trampoline Park in April, and wow did we have an awesome time!! Families came out to enjoy a morning of jumping fun! Come hang out with us in May at Henry Schuette Park in Manitowoc.

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Self Advocate Bowling Event
April was such an awesome month for DSAW-GB! We hosted our first ever event just for self-advocates. Five young adults came out to bowl with us and enjoy a pizza lunch. Stay tuned for more self-advocate outings in the next few months!

All Abilities Family Night Out
On April 21, we went to the YMCA for a Family Night Out! We got to swim, play in the gym, do flower-themed crafts and activities, and go on a bounce house!

Parent's Night Out
Our monthly Mom's Night Out in April was open to ALL parents, grandparents, caregivers, and adult siblings. We got together at Margarita's for a casual evening of conversation, drinks, and appetizers provided by DSAW! Moms, join us for our regular Mom's Night Out in May at Hagemeister Park!


Fox Cities

Circles Class
DSAW-Fox Cities started offering Circles class on Friday nights in April. Teens and young adults got to come together to learn about safety and social boundaries! We plan to offer this class annually.

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Teen FrienDS Club
For this month's Teen FrienDS Club, we got to go to a pottery painting class! We braved the snowstormy weather with our friends from Freedom HS National Honor Society and painted some awesome pottery! Thank you to The Fire Pottery Studio for hosting us!

New Parent Support Group
We also held another New Parent Support Group at the DSAW-Fox Cities office in April. This group is a kid-free zone where parents or caregivers can discuss their feelings in a non-judgmental environment. Stay tuned for future dates.

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Mom's Night Out
DSAW-Fox Cities had a HUGE Mom's Night Out at Benvenuto's in Oshkosh. We have such a wonderful group of moms, and we had an amazing night enjoying food and conversation with our friends!


Sheboygan

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Above & Beyond Children's Museum Field Trip
We went to the children's museum in Sheboygan for the second time! We are starting to meet there every second Monday of the month for the museum's Special Needs Night. The exhibits are adapted, sound is turned low, and the museum is closed to the general public. Come join us in May for a fun playgroup at an amazing museum!

All Abilities Dance Class
April was the first month of our All Abilities Dance Class with In Motion Dance Studio! Babies, kids, and young adults all came out to learn about proper stretching techniques and foundational dance moves. Students are invited to join the class at any time. We still have 4 sessions left! Sign up today.


La Crosse

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Nature for All Families
Thanks to our beautiful friends at WisCorps, we held a Nature for All Families class on April 22 - Earth Day! Four families came together to learn about nature, make crafts with Cheerios, and touch a real snake! We're looking forward to the next installment of this class in June!

Parent's Night Out
We had an amazing group of parents come together for our April Parent's Night Out at Java Vino! Chris Peterson, the Parenting Professor, was a special guest. He is a facilitator for Love and Logic that educated us about Love and Logic parenting and we educated him about kids with Down syndrome. The reoccurring theme for the evening was More Alike Then Different. Join us for our May Parent's Night Out on May 19 at Fiesta Mexicana in La Crosse, WI.  


Central WI

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Mom's Coffee Date
DSAW-Central WI hosted a Mom's Coffee Date at Vino Latte on April 19! We welcomed a special guest presenter, Carol Wesley from the Achieve Center, to tell us more about how people with disabilities can reach their full potential. Join us for our May Coffee Date on the 14th!

Parent's Night Out
We also hosted a Parent's Night Out at the end of April! Parents, grandparents, and caregivers joined us at Sconni's for a casual evening of conversation and appetizers.


Rock County

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In partnership with the Madison Area Down Syndrome Society, we hosted the first ever kids' playgroup in the Rock County Area! Families gathered at a library for snacks, story time, and to let their little ones play together! 


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.