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.
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.
Sibling relationships are often contentious, whether or not Down syndrome is involved. Many of the arguments, disagreements, and other strife are common amongst all siblings. This is something that Clayton has to be reminded of as well. Audrey is not taking his toys because she is different; she is actually doing it because she is the same.
Having communication with siblings about these issues allows them to be better equipped to handle their feelings of frustration and jealousy. It helps them be involved, and ultimately creates an informed advocate and protector who will learn empathy, inclusion, and responsibility. Having a brother or sister with Down syndrome can be difficult for a child, but communication and inclusion of siblings will be beneficial to all.
Meet a DSAW Leader: Krystina
Hi! My name is Krystina Jankus. I have been with DSAW now for over a year and recently became the President of the Sheboygan & Surrounding Counties Chapter. My youngest baby girl is 2 and was diagnosed with Down syndrome -- she is the reason i have become so involved with DSAW.
In my time with DSAW thus far, I have helped to plan and host events throughout our coverage area, and was the Raffle Captain for the 2017 Sheboygan Down Syndrome Awareness Walk. Since Phoenyx was born, I have wanted nothing more than to learn more, find every opportunity for her, and show others that she is not different! DSAW has helped me become stronger and more aware of thingsI may not have been aware of before.
Until Phoenyx was born, I was a hairstylist of 11 years. I married my husband in 2016 and have 3 amazing kids! If you live in the Greater Sheboygan Area, I hope to see you at one of our upcoming events.
Looking Back on January 2018
Milwaukee
DSAW Leaders Retreat
In January, we welcomed over 50 DSAW leaders from around the state to our annual Leaders Retreat in Pewaukee, Wisconsin. On Friday night we had a member social, gave out chapter awards, and celebrated Tom O'Day, who's retiring from the State Board. On Saturday we buckled down for a day of presentations and breakout sessions centered around the theme "Growing Together". We learned about DSAW's Program Models, how to plan an awesome awareness walk, the Spread the Word to End the Word Campaign, how to be a board member, and so much more. Thank you so much to all of our chapter leaders for helping us bloom!
Snow Tubing
DSAW families got together at Sunburst Ski Area in January for an awesome Saturday afternoon of snow tubing!
Young Leaders Bootcamp
At Bootcamp in January, we made some incredible videos!! The first Tuesday we interviewed self-advocates about their lives. Later in the month we created a music video! Stay tuned! When we're done editing, we'll share the video.
Bootcamp meets on Tuesday nights at 6pm. Join us in February!
Cooking with the Kiddos
At Cooking with the Kiddos in January, families made turkey pesto paninis! Yummm. Cooking meets on the first and third Wednesday of the month at our state office in West Allis. To cook with us next month, sign up here.
Motor Skills Playgroup
Our Motor Skills Playgroup meets every second and fourth Tuesday morning! This group is a fun chance for children to learn occupational therapy skills in a free environment, while parents enjoy coffee and each other's company. Come join us in February!
Young Leaders Academy
Our Young Leaders Academy meets every second and fourth Thursday of the month. This month we started with dodgeball to get us going, and we ended with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. Sign up for Young Leaders in February!
Tween Club
This month we had the biggest Tween Club ever!! We made lava lamps and had snacks. Next month's Tween Club will be on Friday, February 9. Sign up here!
Parent's Night Out
Each month, DSAW parents, grandparents, and caregivers get together at Club Paragon for a night of casual conversation and free appetizers. We meet every second Friday of the month! Drop your child off at Tween Club on February 9 and stop by our Parent's Night Out!
Club DSAW
Self-advocates ages 15 and older are invited to join us for our monthly Club DSAW gathering on the fourth Saturday of the month! Each month is a new activity. This month we met at the DSAW Office for a night of beach-themed fun! Self-advocates wore their Hawaiian shirts and we spent a night on the beach. Next month we'll be going to a WAVE game on February 17! Join us.
Family Movie Night
Every fourth Friday of the month, we invite families to a movie night at our office in West Allis! We watch a family-friendly movie on our big projector screen. Parents are invited to stay with their kids, or drop them off for a night of respite. We even have snacks! This month we watched Diary of a Wimpy Kid. Come watch a movie with us next month!
Sheboygan
Swimming Event
This month, DSAW-Sheboygan families came together at the Manitowoc/Two Rivers YMCA for a swimming event! We went swimming during the Y's Special Needs Swim hour, and afterwards we got together for a pizza dinner and fraternal support. We had a great turnout and look forward to hosting more events in the Manitowoc area!
La Crosse
Parent's Night Out
The temps were frigid outside on January 13 but that did not stop a red-hot group of parents from enjoying our monthly Parent's Night Out at Howie's on La Crosse. There were heartwarming stories about our loved ones with Down syndrome, temperature raising behavior issues concerning our (sometimes, not-so) loved ones with Down syndrome and, of course, laughter. We start by having a connection because of our child with Ds and then learn that we have so much more in common. We love the bonds that are created at the Parent's Night Out events, when parents are able to communicate and learn from others without having to worry about watching their child with Down syndrome. Join the fun on February 24 at The Wired Rooster in Caledonia, MN for our next Parent's Night Out.
North Central WI (Antigo)
Family Bowling Event
DSAW is beginning to expand its Parent Support Groups in North Central WI, specifically in Antigo. We had a Family Bowling Event, our third get-together, in January. If you live in North Central WI and want to get involved with DSAW, join our Facebook group! We're especially looking for families who live in Rhinelander!
St. Croix River Valley
Parent's Night Out
In January, parents from the St. Croix River Valley got together at Table 65 in New Richmond for a night of free appetizers and conversation! Join DSAW next month for a local resource night.
Fox Cities
Group Fitness Class
This month we held group fitness classes in partnership with Anytime Fitness in Appleton. They were great!! The classes were functional (no machines) workouts featuring all major muscle groups. We started the session with a fun ice breaker, demos of all exercises, a dynamic warm up, 8-10 exercises, then concluded with a fun team building activity and stretching.
Adult Holiday Party
We also hosted a holiday party for DSAW adults at the Mad Apple in January. Self-advocates, parents, grandparents, and caregivers got together for food and billiard games to celebrate the holidays.
Green Bay
Mom's Night Out
DSAW-Green Bay moms, grandmas, and aunts went to Rustique Pizzeria this month for their Mom's Night Out! They enjoyed appetizers and a night of casual conversation. We host a Mom's Night Out on the fourth Sunday of every month. Join us next month at Nakashima!
Central Wisconsin
Mom's Night Out
We had a successful Mom's Night Out at the end of January at City Grill! Ten moms joined us for a night of casual conversation, food, and drinks. Moms, grandmas, aunts, and female caregivers are invited to join us for a Coffee Date next month on February 21!
Breast-feeding Your Baby
Created by Marianne Pastore, RN MassGeneral Hospital for Children
BREAST-FEEDING BASICS
All babies benefit from breast-feeding or receiving breast milk. Breast-feeding can:
- Promote eye and brain development
Lower the risk of Sudden Infant Death Syndrome (SIDS)
Improve mouth and tongue coordination, which will help speech skills
Create a special bond with your baby
There are, however, special benefits for babies with Down syndrome:
- Babies with Down syndrome have a higher risk of infection. The mother’s body makes antibodies, which she passes on to her baby during breast-feeding. Antibodies help protect your baby against infection.
Breast milk is very easy to digest, and this is helpful for infants who may have stomach problems related to Down syndrome.
Skin to skin contact during breast-feeding helps stimulate babies who have low muscle tone, or weak muscles.
GETTING STARTED
When any baby learns to breast-feed, it takes time and patience. Getting off to the best start helps you and your baby succeed with breast-feeding.
- Start breast-feeding as soon after birth as possible.
Have skin to skin contact with your baby as much as you can. Touch helps increase the breast-feeding hormones. A baby is also likely to begin rooting or nuzzling at the breast and may actually latch-on when having skin to skin contact.
Feed your baby often, 8 to 12 times in 24 hours, including feedings during the night.
Get comfortable before you start to feed.
Position your baby so their body and chin are well supported. This is especially helpful for a
baby with low muscle tone. The nurses will help you with this in the hospital.
Know where to go for help and support after you leave the hospital.
IS MY BABY GETTING ENOUGH MILK?
You can be sure your baby is getting enough milk if you watch for the following:
- Your baby should be breast-feeding 8 to 12 times in 24 hours
After a week, your baby should have 6 to 8 wet diapers and 3 bowel movements that are yellow, soft and seedy
Your baby with Down syndrome should gain at least 4 ounces per week
BREAST-FEEDING CHALLENGES
Babies with Down syndrome may face some special challenges that might affect breast-feeding. There are many things you can do to work through these challenges and have success.
Low muscle tone
Your baby may have low muscle tone, or weak muscles, especially in their tongue and lips. To help babies with low muscle tone during breast- feeding, do the following:
- Keep your baby’s body and chin well supported
- Support the base of your baby’s head with your hand. Too much pressure on the back of your baby’s head can cause a poor latch.
Sleepiness
Your baby may be extra sleepy, which can affect feeding patterns. Babies who fall asleep may also not get enough milk, especially the end milk or “hind milk.” End milk has extra fat and calories which help your baby to grow.
- Dim the lights in the room so your baby doesn’t have to close his or her eyes against the light
Remove all of your baby’s clothing except the diaper to help keep him or her alert
Wash your baby’s face with a wet cloth
Gently stroke and talk to your baby during the feed
Compress and massage your breast while breast-feeding. This will help the milk flow and keep your baby interested in breast-feeding.
Tongue Thrusting
Babies with Down syndrome may have a protruding tongue that pushes against your nipple. To help these babies breast-feed, try the following:
- Wait for your baby to open wide (like a yawn) with his tongue forward and down
Gently press down on your baby’s chin. Opening the jaw will help the tongue come forward.
Teach your baby how to keep his or her tongue down. Put your index finger on the center of your baby’s tongue. Push down and gently pull your finger out.
Allow your baby to suck on your finger so he develops rhythmic sucking rather than biting.
WHAT IF MY BABY IS NOT BREAST-FEEDING?
Some babies might not breast-feed while at the hospital. Your medical staff can help you create
an individual feeding plan to make sure your baby gets all the nutrition he needs to grow and thrive. After you leave the hospital, you will meet often with your pediatrician who will help make changes to the feeding plan as needed. During this time, it is important to build and protect your milk supply. Building a milk supply usually happens if your baby is breast-feeding a lot. If your baby is not breast-feeding, the medical staff will help teach you how to get a double electric breast pump and how to pump your breasts. In the end, some babies do not breast-feed. However, giving your baby your breast milk from a pump will still give your baby all the wonderful benefits.
SUPPORT
Your nurse in the hospital will help you with breast-feeding. She will also arrange a visit with
a lactation, or breast-feeding, consultant during your stay. The more help and support you have, the more successful you will be. It is important to check with your pediatrician to see if they have a staff member who can help with breast-feeding or make a referral to someone who can. Ask your nurse in the hospital for available resources. Zipmilk.org is a great website that can provide you with Lactation Consultants, La Leche League Groups and other support groups in your community.
This is intended to provide health related information so that you may be be er informed. It is not a substitute for a doctor’s medical advice and should not be relied upon for treatment for specific medical conditions.
Meet a DSAW Leader: Mary West
Hi! My name is Mary West. I joined DSAW Family Services in 2015 and currently serve as a daily life skills specialist, IEP/Behavior specialist, and a job developer/coach. There are few things that I enjoy more than helping my clients succeed and watching their joy when they do. This truly is my dream job!
My background is as an elementary special education teacher. I hold a bachelor’s degree in Educational Studies and Youth Leadership and a masters degree in Exceptional Education, both from UW-Milwaukee. I come to DSAW Family Services after just over a decade of working in elementary schools, first as a paraprofessional in the Whitefish Bay School District, and then as a teacher in the West Bend School District.
I’ve been married to my amazing husband since August of 2014. We are hoping to start a family soon. We enjoy spending time with our family and friends, as well as travelling. In the past few years I’ve been to such far off places as Thailand and Cambodia. However, I’m just as happy traveling within the U.S. to spend as much time as possible with my awesome nieces and nephews, or following the Wisconsin Badgers basketball team, of which I am a huge fan. Go Badgers!
Taking on my position with DSAW Family Services is one of the greatest decisions that I’ve ever made. I love spending time with my clients and enjoy that every day is a new adventure. In particular, I love helping clients find jobs. Sharing in the joy of watching a young person with a disability succeed in his or her first job is something that never ceases to bring me happiness.
I cannot imagine working with better colleagues and clients on an everyday basis. I look forward to meeting more of you as my journey with DSAW Family Services continues!
"We Absolutely Couldn't Ask for More!"
Does your family need one-on-one support for your loved one with Down syndrome? Do you need help with IEPs, inclusion, or speech? Are you struggling with behavior problems and need a custom solution? Do you need to find respite care? Does your loved one need help securing transportation, housing, caregivers, or employment? Would you like to develop a 5- or 10-year plan for your loved one to help them reach their goals?
DSAW-Family Services can help with ALL of this, and more! DSAW-FS provides one-on-one services to individuals with Down syndrome and other special needs and their families, helping individuals take their rightful place in the community and achieve their full level of independence. Whatever obstacle you are facing, DSAW-Family Services can help!
DSAW-FS has been working with Kathryn for a couple of years. She has received daily life-skills training, job coaching, and one-on-one support to help her achieve her dreams. Kathryn's mom, Julie, says that with DSAW-FS, Kathryn "has accomplished so much and her success has been wonderful!" DSAW-Family Services has matched Kathryn with a support worker that has been life-changing for Kathryn and her family. "It is so important to us to have a long-term and REAL relationship with our provider...DSAW-FS has provided Kathryn with exactly what she has needed, when she needed it."
With the help of DSAW-Family Services, Kathryn is living a fulfilling and active life in the community. She has two jobs, she volunteers at DSAW, is involved in Project Search, and participates in Special Olympics. Julie says that she "absolutely couldn't ask for more!"
When you support DSAW, you support the services that have helped people like Kathryn thrive. Would you consider giving others an amazing life this holiday season? By donating to DSAW, you can.
Warmly,
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin
PS - Only 5 days left for your donation to qualify for a dollar for dollar match thanks to a generous donor. Make your donation today!
Looking Back on December 2017
Milwaukee
Holiday Party
We welcomed 300+ people to our DSAW-Greater Milwaukee Area Holiday Party on December 16!! We had music, holiday crafts, cookie decorating, a hot chocolate bar, games, and more! Santa and some of his elves came down to visit from the North Pole, and they brought presents for over 150 children! We had a delicious homemade lunch of turkey, mashed potatoes, mac n cheese, jello, and veggies. Texas Roadhouse donated pulled pork too! We raffled off a gingerbread making kit and busted some moves on the dance floor. Thank you so much to all of our families who joined us. We love you, and we hope you have a safe, fun holiday season!
Young Leaders Bootcamp
December Bootcamp was Holiday Baking month!! At the beginning of the month, we made sugar cookie dough to use for cookie decorating at our DSAW-Sheboygan Holiday Party! Then we made some cookies for ourselves to enjoy!
Bootcamp meets on Tuesday nights at 6pm. Join us in January to make a music video!!
Cooking with the Kiddos
At Cooking with the Kiddos in December, families made customized personal pizzas! Cook with us next month and sign up here!
Motor Skills Playgroup
Our Motor Skills Playgroup meets every second and fourth Tuesday morning! This group is a fun chance for children to learn occupational therapy skills in a free environment, while parents enjoy coffee and each other's company. Join us in January!
Young Leaders Academy
Our Young Leaders Academy meets every second and fourth Thursday of the month. This month we did yoga to help us slow down during the busy holiday season, and we ended with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. Come out to Young Leaders in January!
Tween Club
This month at Tween Club we spent the night tie dying DSAW sweatshirts!! Next month's Tween Club will be on Friday, January 12. Click here to sign up!
Parent's Night Out
In December, DSAW parents, grandparents, and caregivers got together at Club Paragon again for a night of casual conversation and free appetizers. We meet every second Friday of the month! Drop your child off at Tween Club on January 12 and stop by our Parent's Night Out!
Chippewa Valley
Holiday Party
At the beginning of December, DSAW-Chippewa Valley hosted a big Holiday Party at Cabin Ridge! We had delicious food, a "sleigh" ride through the woods, hot chocolate to warm up, and a visit from Santa and his elves!! A big thank you to everyone involved!
La Crosse
Holiday Party
It sure is the most WONDERFUL time of the year! DSAW-COTH-GLA family and friends gathered to celebrate the magic of the season on December 16 at our annual Holiday Party. There was soccer, football, dancing, a bounce house, a parachute game; all kinds of fun for all ages. When we took a well-deserved break for lunch, we went around the room highlighting the 2017 accomplishments of each individual with Down syndrome- TRULY INSPIRING! It was great to see old friends and make new friends, share knowledge about our experiences, and support the families that are new to this journey. We even had a surprise visitor from the North Pole.
North Central WI (Antigo)
Culver's Family Social
DSAW is beginning to expand its Parent Support Groups in North Central WI, specifically in Antigo. We had our second event in December - a Culver's Family Social! Come bowling with us in January! If you live in North Central WI and want to get involved with DSAW, join our Facebook group!
Central WI
Winter Fest
Our Central WI chapter hosted a Winter Fest party on Saturday, December 9! We got together for crafts and activities, snacks, and a visit from Santa! Thank you to everyone who celebrated with us.
Sheboygan
Holiday Party
DSAW families in Sheboygan joined us in celebrating the holidays at Odyssey Fun Center this month! We started off with holiday crafts, music, and cookie decorating, and then we spent the afternoon bowling! Thanks to all who participated and helped us prepare for the event!
Green Bay
Playgroup
DSAW-Green Bay hosted its monthly playgroup at Kidz Town in December. Individuals with Down syndrome are free! Come play with us on Saturday, January 6!
Holiday Movie Event
DSAW-Green Bay families celebrated the holidays together at De Pere Cinema on December 16! We watched a winter favorite - Frozen!
Fox Cities
Teen FrienDS Club and Parent's Night Out
On the second Friday of every month, we host our Teen FrienDS Club at our office in Appleton in conjunction with a Parent's Night Out! Parents are invited to drop their teens off at our office for a night of games, snacks, movies, and friends; then they head over to a local restaurant for free appetizers and an evening of casual conversation! Come join us next month on January 12!
We Can't Do It Without You!
We have many incredible volunteers that make what we do at DSAW possible. Some of you might know Susan, who volunteers at our State Headquarters in West Allis. Susan helps every Tuesday at Bootcamp, Friday nights at Tween Club, and at events throughout the year.
"The path leading me to DSAW was unexpected and unplanned, as is often the case for amazing things in one's life." She wanted to learn more about Down syndrome after hearing about a local business started by a woman with Down syndrome. Her search led her to DSAW, and she has been volunteering with us since March.
Now, her favorite part about volunteering is sharing with the self-advocates: "thoughts, goals, jokes, favorite things, experiences, likes and dislikes, mistakes, knowledge, strengths and challenges, activities. In short, everything friends share."
Susan has been invaluable to our work at DSAW. She lights up our office with her passionate spirit and her desire to serve. She truly believes that "starting small can and does make a difference" and suggests that "if you can't volunteer, then donate. If you can't donate, then volunteer. If you can't do either, then advocate, educate, and always watch for opportunities that can use your talents and resources."
We could not serve our loved ones with Down syndrome or offer life-changing programs and services without our wonderful volunteers and donors. Will you give back to DSAW this holiday season? Consider donating your time, talent, and/or treasure to help us accomplish our mission.
Warmly,
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin
The Novaceks
When you make a gift to the Down Syndrome Association of Wisconsin, you fund life-changing programs and services that support thousands of people around the state. For Stephanie and Tom, the Parent's First Call program has been invaluable on their journey.
When Stephanie was pregnant with Tommy, a prenatal test indicated a high probability that their son would have Down syndrome.
"We were surprised at the number of times termination was brought up, simply based on the high likelihood of having a baby with Down syndrome." They received few messages of congratulations or excitement. At first, they were terrified about what the diagnosis meant for Tommy and for them.
However, their attitude quickly changed after becoming connected with DSAW. Through the Parent's First Call program, Stephanie and Tom received resources, fraternal support, and hope.
"Our outlook on this new reality, which seemed overwhelming at times, improved greatly after the first Parent's Night Out that we attended. Meeting others with similar stories to ours made life feel normal again. It was refreshing to be able to openly discuss Down syndrome for the first time with people who knew what we were going through."
Now, more than ever, support for new and expectant parents is vital.Did you know that individuals with Down syndrome are at significant risk to be the first group of people eliminated from the population?
DSAW is fighting to change this narrative through the Parent's First Call program. This program provides resources, support, and connections to new and expectant parents who have received a Down syndrome diagnosis. DSAW offers Expectant Parent Packs and New Parent Welcome Baskets, and parents have the option to be connected with a trained Support Parent.
DSAW's Parent's First Call program creates lives of hope, exceeded expectations, immeasurable joy, and unconditional love by wrapping networks of support and resources around parents to address the unique, yet surmountable, challenges facing the Down syndrome community. Since the program's inception in April 2016, DSAW has provided resources and support to more than 70 new and expectant parents across the state and trained more than 50 Support Parents -- and this is just the beginning. The Parent's First Call program is changing lives.
The Parent's First Call program was so important to Stephanie and Tom that they have now become Support Parents themselves. "The chance to help someone in our same situation is incredible. The Parent's First Call program is the first step to realizing that life with a child with Down syndrome will not be as scary as it may seem, and that everything will be okay."
Not everyone can be a Support Parent like Stephanie and Tom, but we are counting on the overwhelming support of our community to make the Parent's First Call program a success. When you make a donation to DSAW, you support the Parent's First Call program, along with DSAW's other life-changing programs and services. Together, we can help individuals with Down syndrome exceed expectations and live amazing lives. Will you make a year-end gift to support our vital work? We couldn't do it without you!
Warmly,
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin
Meet a DSAW Leader: Chris Gagne
Hi, my name is Chris Gagne and I am the new Senior Program Director for DSAW-Family Services. Before I came to DSAW, I was a Special Education Teacher for the Shorewood School District and the Slinger School District for 10 years. My favorite part of my teaching career was traveling with my students to Hawaii and the Florida Everglades and watching them grow through all of the adventures we had together.
This hints at my previous profession as a Recreation Therapist and my love for the outdoors. My role as a recreation therapist enabled me to work with adults with acquired brain injuries and the elderly. I was even a camp director out in California and Nevada for awhile.
Having children settled me into the teaching role, getting my Masters degree in education, and finally finding my way into the DSAW world. I have two biological children (18 and 21) and one foster son age 13. My husband is a saint in the making and my kids are all adventurous like myself - one heading to South Africa for a couple of years!
I consider my clients at DSAW -FS an extension of my family - my phone is filled with more pictures of them than my own. I hope I get a chance to meet more of you in the near future. DSAW-FS is the best ! We have THE BEST staff and really can not be compared to any other agency out there .... because we love those with DS and other disbilities and want to be a part of shaping their future.
URGENT Advocacy Alert!
Tell your senators to vote NO to the tax-cut bill, which will negatively affect your loved one with Down syndrome.
Wisconsin Senators:
Ron Johnson: (202) 224-5323
Tammy Baldwin: (202) 224-5653
**Please note, Ron Johnson is considering voting NO! We need to inundate his office with calls!**
Action Steps:
- Call, email, tweet our Senators, especially Ron Johnson! Include a photo of you and your loved one with an explanation of how the tax-bill will hurt your family.
- Go to your Senator's local offices this week! Meet with staff. Print out your story and leave it with them.
- Call your relatives and friends in other states and ask them to take action on your behalf. Main target states are Tennessee (Bob Corker), Arizona (Jeff Flake), Oklahoma (James Lankford), Kansas (Jerry Moran), Maine (Susan Collins), and Montana (Steve Daines). However, ALL Republican Senators should be blanketed with calls!
- One call or contact is not enough. Call them every day, multiple times a day, until the vote!
The bill is expected to go to a vote as early as tomorrow or Friday. Please call, tweet, email, and advocate every day until then!
Sample Phone Script:
Phone calls are proven to have the largest impact in swaying decisions (as opposed to letters, tweets, etc). It's very easy -- you just call the number and leave a message! Here is a sample script:
"Hi Senator ________:
My name is ________ and I live in CITY, Wisconsin, zip-code _______. I'm calling to ask you to vote NO to the tax bill. This bill is harmful for people with special needs, and will hurt the future of my loved one with Down syndrome, and my family. This bill cuts tax incentives to hire individuals with disabilities, raises taxes on people facing high medical bills, and eliminates the Affordable Care Act's individual mandate, among many other things.
Please vote no. Thank you!"
Where to Start: Resources
The Down Syndrome Clinic is committed to improving the health and well being of children and adults with Down syndrome, which may include complex issues. This requires a comprehensive, multidisciplinary health care approach. The DSCW is connected with a statewide network to assist families in need.
Birth to Three
Birth to Three is Wisconsin’s early intervention program for infants and toddlers with developmental delays and disabilities. Through it, your child will receive (in most cases) in-home physical, occupational and speech therapy depending on his or her needs, often at little-to-no cost to your family.
DSAW Parent’s First Call
For new and expectant parents of babies with Down syndrome, we offer up-to-date resources (Expectant Parent Packs and New Parent Welcome Baskets), and the opportunity to connect with other parents who have had similar experiences.
1-866-327-3729
Katie Beckett Program Supplemental Insurance
Children born with DS often experience medical complications at birth, many of which today are corrected with routine procedures. In addition, children with DS will benefit from physical, occupational and speech therapy in their first months and years. The Katie Beckett Medicaid program can cover costs that insurance plans sometimes will not.
Family Support Program
The Family Support Program offers in-home support for families with children who have severe disabilities. It also offers information and help in finding service programs and community resources, some funding to purchase necessary goods and services unavailable elsewhere and links to other families to build a support network.
DSAW Member Grants and DSAW Meal Assistance Program
DSAW offers Member Grants for DSAW Members to help offset the cost of items or services that can benefit the quality of life and development of a person with Down syndrome. In addition, for families who are experiencing an extended hospital stay at Children’s Hospital of Wisconsin in Milwaukee, we offer meal vouchers for family members
Wisconsin First Step
The mission of Wisconsin First Step is to assist parents in finding resources for their children with special needs. They serve children and youth from birth to age 21 who have physical, cognitive, or mental health challenges.
1-800-642-7837
WI FACETS
The mission of WI FACETS is to provide and broaden opportunities that enhance the quality of life for children and adults with disabilities and their families, with emphasis on support for underserved families in the community.
Other Resources
DSAW has a large collection of international, national, and Wisconsin-specific resources on a variety of topics related to Down syndrome. To learn more, visit our website.
The National Down Syndrome Society (NDSS) is the leading human rights organization for all individuals with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.
National Down Syndrome Congress
The mission of the National Down Syndrome Congress (NDSC) is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome. The vision of the NDSC is a world with equal rights and opportunities for people with Down syndrome.
Global Down Syndrome Foundation
The goal of the Global Down Syndrome Foundation is to significantly improve the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy. Global works to educate governments, educational organizations and society in order to affect legislative and social changes so that every person with Down syndrome has an equitable chance at a satisfying life.
Wisconsin Upside Down is dedicated to enhancing the lives of individuals with Down syndrome. The mission of Wisconsin Upside Down is to offer Down syndrome Advocacy, Education, Awareness and Support to families of individuals with Down syndrome and the community.
Madison Area Down Syndrome Society
The mission of the Madison Area Down Syndrome Society, Inc. is to provide support to individuals with Down syndrome and their families while advancing awareness, respect and opportunity.
GiGi’s Playhouse
GiGi’s Playhouse Down Syndrome Achievement Center’s mission is to change the way the world views Down syndrome through national campaigns, educational programs, and by empowering individuals with Down syndrome, their families and the community. There are playhouses located in Milwaukee and Madison.
Gettin’ Down Central WI
Gettin’ Down Central WI’s goal is to educate and bring families and the community together to learn acceptance and communicate knowledge. They make new friends, while providing support, sharing resources and information.
Looking Back on November 2017
Milwaukee
Parents attend the parent portion of our Sibling Workshop at our State Headquarters in West Allis.
Sibling Workshop
On November 18, DSAW and the Children's Hospital of Wisconsin Down Syndrome Clinic partnered to present a Sibling Workshop with Dr. Brian Skotko and Sue Levine. The workshop was for siblings who have a brother or sister with Down syndrome. There also was a session especially for parents with children of all ages, which covered how parents can help typically-abled siblings deal with questions, difficult life moments, negative feelings, and more. There were games, discussion groups, a pizza lunch, and more. Thank you so much to Dr. Skotko and Sue for facilitating this workshop!
Young Leaders Bootcamp
Bootcamp in November focused on carpentry! Self-advocates learned about several different tools and safety procedures, and then they had a chance to make projects with those tools! One night we made wooden bird houses, another night we made customized wooden signs, and our final project was working to build shelves for the DSAW office!
Bootcamp meets on Tuesday nights at 6pm. Join us in December for Holiday Baking month!
Cooking with the Kiddos
We had a large group this month at Cooking with the Kiddos! One night we made pumpkin bread, and another we made tacos and dessert quesadillas. Cooking with the Kiddos is a fun evening of family bonding, plus a free meal... what could be better?! Due to the holidays, we will only meet the first Wednesday of December - the 6th. 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. Due to the holidays, we will only have playgroup on Tuesday, December 12 this month. Sign up here!
Young Leaders Academy
Self-Advocates joined us for our bi-weekly Young Leaders Academy only once in November, because of the Thanksgiving holiday. 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 December! We will only be hosting one session on Thursday, December 14 due to the holidays.
Tween Club
At Tween Club in November we made Thanksgiving turkeys and played balloon volleyball! We had 15 tweens join us this month. Tween Club in December will be on December 8. Sign up here!
Parent's Night Out
Each month DSAW parents, grandparents, and caregivers look forward to going to Club Paragon for a night of casual conversation and free appetizers. November was no different! We had a lovely group join us. Drop your child off at Tween Club on December 8 and join us for Parent's Night Out next month!
Grandparents Group
Grandparents who have a loved one with Down syndrome meet at our state office on the first Tuesday of each month. This group is growing, and we would love to have you there! Come see what it's all about on December 5.
Central WI
November Beach Party
This month, our Central WI chapter hosted a free November Beach Party in Rothschild! Over 100 people of all ages came out for our waterpark event, and we had so much fun splashing around and meeting new families!!
Mom's Coffee Date
DSAW-Central WI also hosted a Mom's Coffee Date in November at the new Vino Latte in Wausau! Several moms with children who have Down syndrome got together over coffee to talk and offer support.
St. Croix River Valley
Family Bowling Event
DSAW is beginning to expand its Parent Support Groups in the St. Croix River Valley. We hosted our third event in the area in November - a Family Bowling Day! About 30 people came out to spend time with other DSAW families and to enjoy an afternoon of bowling! Click here to join our Facebook group!
Green Bay
Playgroup
DSAW-Green Bay hosted its monthly playgroup at Kidz Town in November. Individuals with Down syndrome are free! Explore this awesome location with us on Saturday, December 2.
Parent's First Call Support Parent Training
Parents from around the state came to Green Bay to attend our Support Parent Training through our Parent's First Call Program. On November 4, 12 parents learned how to offer support for families who have just received a Down syndrome diagnosis. Thank you to Parent to Parent of Wisconsin for their continued partnership and to Journey Community Church for letting us use their beautiful space! Special thanks to Robin and Julie from P2P, to Emily from Children's Hospital of Wisconsin, and to all of the parents who joined us!
Mom's Night Out
We went up to Sturgeon Bay for our monthly Mom's Night Out at Door County Fire Co. in November! We enjoyed delicious food and an evening with other moms, aunts, grandmas, adult sisters, and female caregivers who have a loved one with Down syndrome. We will NOT have a Mom's Night Out in December due to the holidays.
Fox Cities
Teen FrienDS Club and Parent's Night Out
On the second Friday of every month, we host our Teen FrienDS Club at our office in Appleton in conjunction with a Parent's Night Out! Parents are invited to drop their teens off at our office for a night of games, snacks, movies, and friends; then they head over to a local restaurant for free appetizers and an evening of casual conversation! Join us on Friday, December 8!
Sheboygan
Parent's Night Out
DSAW-Sheboygan parents and grandparents got together for a casual night of conversation and free appetizers in November! This month we met in Fond du Lac at a pub right on the lake.
La Crosse
Parent's Night Out
Parents from our DSAW-COTH-GLA chapter hung out at Shenanigans in La Crosse in November. DSAW provided free appetizers, and several couples enjoyed fraternal support from other DSAW adults.
Andrew's Story
Today is Giving Tuesday, a day dedicated to giving back to the community. We'd like to share Andrew's story, in his own words, with you today to show you the ways that people with Down syndrome exceed expectations.
My name is Andrew. I have an amazing life. In 1988 when I was in kindergarten, I was in a classroom with kids who had no disabilities. That was really important. It is called inclusion. That is how my education continued, almost always alongside students without disabilities.
In 2002, I decided on a career in child care. There were plenty of people who said I would never get hired, but I did not pay a whole lot of attention to them. I had high employment expectations and worked to make my dreams come true. I have worked at the YMCA in the child care center for the past ten years. I work with four- and five-year-old children in my community. I love my job!
About six years ago, I moved out of my parents' home and into my own apartment. That was one of the most exciting days of my life! I always wanted to live on my own. I also took an online driver's education course and got my temporary license.
I have been recognized as a good spokesperson or advocate for others who have disabilities. I have been invited to speak at conferences, fundraisers, and schools. With lots of help from my support team at DSAW-Family Services, I have started Andrew's Voice, a motivational speaking business. Check out my website!
Starting a business is not easy, but I am eager to help others who have disabilities. Sometimes I help others by giving them job coaching. Sometimes I help with life skills training. I work at DSAW now with two other self-advocate interns.
I have many people to thank for making my amazing life possible. Thank you for giving me the opportunity to tell you my amazing story.
By supporting DSAW today, you help our loved ones with Down syndrome to exceed the expectations society sets. You provide transitioning services, job training, fraternal support, driver's education, and so much more.
Andrew has an amazing life. You can give others the same opportunities by donating to DSAW today.
Warmly,
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin
PS - Consider donating your savings from Black Friday and Cyber Monday to DSAW! It's an easy way to support your local community.
We Need Your Help!
Last year, Americans spent an average of $124 on Cyber Monday. However, will you take a break from shopping to read this email? The Down Syndrome Association of Wisconsin changes lives across the state, and we need your help.
Tomorrow is Giving Tuesday, a day dedicated to giving back to the community in the midst of a week of spending.
In honor of tomorrow, we'd like to share the story of Michelle and Brian.
In 2007, Michelle and Brian were expecting twin baby girls and were heartbroken when one of their daughters was stillborn. It was only after they were born that they learned both girls had Down syndrome.
In the hospital, Michelle and Brian received a packet of information, including a few books - most of which they promptly threw away. The first book they opened immediately mentioned institutions.
"When I was holding my new daughter, I wanted to know what the future looked like - not in medical terms or statistics, but what would our family be like, how would she fit in with us?"
DSAW parents around the state were noticing this same trend: outdated resources, filled with doom and gloom messages about individuals with Down syndrome, were the first materials parents read after a diagnosis.
Now, through the Parent's First Call Program, DSAW provides medical professionals and parents with accurate, unbiased, up-to-date resources about Down syndrome. We want to ensure that everyone understands how amazing our loved ones with Down syndrome are.
Michelle and Brian have loved raising a daughter with Down syndrome so much that they made the decision to adopt a second daughter with Down syndrome, too.
"I can't even guess how many people used to say 'I'm so sorry!' when we would say our daughter has Down syndrome -- and I used to say, 'Don't be sorry, she's awesome!' I don't know how much they believed me before we adopted Lilya. If voluntarily adding another child to our family who has Down syndrome doesn't tell you we're fine with Down syndrome, I don't know what will!"
By supporting DSAW on Giving Tuesday, you make it possible to support families around the state from the moments following a diagnosis until transition and beyond. We even support families in adopting a child with Down syndrome, just like Michelle and Brian did.
Tomorrow's the day. Will you donate to DSAW on Giving Tuesday?
Warmly,
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin
PS - As you scoop up big deals today, consider donating your savings tomorrow on Giving Tuesday. It's an easy way to give back!
Meet Beth and Kevin
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.
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
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!
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!
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
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
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
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!
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
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)
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.
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.
•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/
