Just six days ago we closed our online survey where we asked families in the local Down Syndrome Community what supports and resources were important to them. Over 70 people responded to the survey. While we haven't had a chance to completely analyze all the data to report back to you, there was one thing that stood out above the rest. Over half the families only attend 1-2 events a year because they are busy, and the events are not conveniently located for them.
You spoke. We listened. We took action. We would like to announce the creation of a new webinar series to help families who have a loved one with Down syndrome in the state of Nebraska. The very first Family Connection Webinar will be held on Friday, June 23 at 8PM. Our topic will be Celiac Disease and gluten free eating. You will be able to join the webinar from your computer, smartphone or tablet. We would like to ask everyone to bring one or two of their favorite gluten-free recipes to share with the group. Our webinar will be 30 minutes long. If after the 30 minutes are up, there are participants who want to continue the discussion, we will take a 10 to 15 minute break and have a final 40 minute session starting at approximately 8:45.
We plan to continue hosting monthly webinars, and may work up to doing them more often if families have hot topics to discuss. We are already working on additional topics like potty training, sign language, IEP's and more.
We have created a closed Facebook group to help us manage the discussions and where we can privately share information and links and reocording of our webinars. Click here to join our private group and get the invitation link to the first webinar.
Thank you to everyone who came out and supported our Mall Walk for Down syndrome and the Nebraska Down syndrome community. It was great to see so many people walking in Down Syndrome Advocate T-shirts spreading awareness around the mall! The walk helped to raise over $4,000 for Down Sydnrome Advocates in Action Nebraska. This money will help us build our new group and expand our current offerings. We can do more to help families by attending IEP's, housing a resource library, hosting fun events like the walk and ball night, and doing peer presentation. We apprecatie everyone in the commuity who volunteered and walked for this great cause! Thank you!
We would like to invite you to attend the Mall Walk for Down Syndrome on March 11, 2017 at Gateway Mall.. Come any time between 9 am and noon and walk at your own pace following any route you would like. Walk wearing a Down Syndrome Advocate t-shirt or Button and earn raffle tickets for each mall lap completed (up to 3 per serson). Help us celebrate World Down Syndrome Day, spread awareness and support all individuals with Down syndrome in our community! Click here to register. #dsaamallwalk
Happy New Year and Happy 1st Anniversary to Down Syndrome Advocates in Action (DSAA NE)! It is hard to believe that it has just been one year since we made our first official public post.
As 2016 draws to a close, we want to thank you for allowing us be a part of your lives. We are happy to be here for you to offer resources, support and guidance. It is our sincere wish that DSAA will continue to be where you turn when you need to.
As the newest support group for Nebraskan's who have a loved one with Down syndrome we had an awesome first year. Here are some of the highlights.
Created a new website
Lobbied and testified to help pass the Down Syndrome Information and Support Act
Held an awareness walk
Provided support for families
Hosted events like ball night, parent coffees, family picnic, & teen and adult holiday party
Did peer presentations
Participated in ONE Coalition to help put on events like the Valentine Dance and Husker Heroes.
Celebrated Down Syndrome Awareness Month with a poster campaign and blog challenge
Created a resource library
And last but not least:
Elected a board, adopted bylaws, incorporated, and officially became a 501(c)(3) Not-for-Profit Organization.
It is amazing what a small group of people can do when they are called to be advocates. We are looking forward to what 2017 will bring. Your voice is important and we value your input and look forward to hearing from you about new programing you woud like to see going forward. Other ways you can make a positive impact on the Nebraska Down Syndrome community would be to:
We appreciate any and all support that allows us to continue our existing programming and create new programs to make a positive impact in the lives of individuals with Down syndrome. We have some great ideas for 2017, and can't wait to share them with you. We would love to hear your great ideas as well! Be sure to Connect with us and invite others to do the same.
Wishing you all a safe and prosperous New Year!
Deb Safarik, President
Angie Willey, Vice President & Secretary
Today we celebrated National Inclusive Schools week by going to a school and doing a peer presentation for a 3rd grade class who happens to have a classmate who has Down syndrome. The kids were great and I think they enjoyed participating in our presentation. The school is doing a great job of promonting inclusion for all learners. While we were there, we got to see a few of the teachers and administrations be recognized for the great job they are doing in they are doing with inclusion at their school. Thank you for allowing us to speak to your class and teach you a little bit about Down syndrome
Many local teens and young adults enjoyed themselves last night at the Holiday Party held at the Safarik house. The theme of the party was Grinch and there were games, karaoke, pizza, gifts and cookie decorating. The creat your own grinch contest was a lot of fun. No one complained that the cookies were gluten free, since they still tasted great with a little frosting. We hope everyone had as much fun as we did!
Study after study has proven that when a child with different learning abilites are taught in a typical classroom alongside their peers, but working on material at their level, it benefits both the student with Down syndrome and the typically developing children equally.
Does it require:
Extra work for the teacher? You bet.
Having support or an aid in the classroom? Probably.
Modification of curriculum? Most definitely.
Adaptations for the student with different learning needs? Quite possibly.'
Courageous educators who truly believe in creating an educational system that provides equal access and opportunities for all students? Absolutely!
There are many educators right here in Nebraska who truly understand that Inclusion is not just about physical proximity. Inclusion is a mindset and commitment to finding a way to help each child reach their full potential.
In honor of Inclusive Schools Week, which occurs the first full week of December every year, we would like to recognize the educators in our state who are Inclusion Chamion Heros to our students with Down syndrome. Educators who take courageous steps forward each day to promote acceptance for all. Educators will be honored with a button and certificate,
Families are asked to nominate teachers, para educators or other school personnel who are helping your child to be included in the classroom with their typically developing peers. Click here to access the nomination form. Nominations are due by December 1st.
Happy Down Syndrome Awareness Month, Day 31! We are celebrating by posting information about Down syndrome each day in October, during the 31 for 21 Challenge. Feel free to share these posts to help spread awareness and acceptance.
We hope you have enjoyed our advocating efforts, posting information and facts about Down syndrome every day in October. One of the reasons we started this group was to encourage families to become strong advocates for their loved ones with Down syndrome. As we continue to grow as an organization we hope that families with openly share with us, the programming they would like to see as well as any areas where they need support or resources. Our goal is to become a valuable resource for the Nebraska Down syndrome community.
We would like to end our 31 days of blogging with this video originally made for World Down Syndrome Day, and updated a bit to represent Down Syndrome Awareness Month. We hope you enjoy.
Did you know you can be an advocate without even speaking? One way to do so is to wear a t-shirt or button that spreads awareness about Down syndrome. We make multiple buttons that are fun, attractive and can help you spread awareness. Here is just a few of the buttons we make.
You can choose one of these, or we can design one with your favorite saying or a photo of your loved one. Suggested donation is just $4 per button and all proceeds go to Down Syndrome Advocates in Action Nebraska. Buttons can be made with a pin or a magnet back. If you would like to find out more about our button advocating, please email firstname.lastname@example.org. Happy Advocating!
Happy Down Syndrome Awareness Month, Day 28! We are celebrating by posting information about Down syndrome each day in October, during the 31 for 21 Challenge. Feel free to share these posts to help spread awareness and acceptance.
ADVOCATING AND WHAT IT MEANS TO BE AN ADVOCATE by Deb Safarik
We’ve been talking a lot about advocating and what it means to be an advocate. Too many times we think that advocating is synonymous with fighting. Fighting for our child’s rights. We fight for opportunities, for curriculum accommodations or modifications. We fight for our children to be included with their peers. We fight for meaningful ways to test just what our kids have learned and understand.
All of this advocating/fighting is real, legitimate and important. But there are other ways to advocate that don’t have to make us feel like we are sometimes “at war” with the whole world.
We advocate for our kids when we include them in our day to day activities, take them on errands with us, go to their siblings games or concerts, enroll them in typical activities like swimming lessons, summer programs, sports programs, going to the library story time, or going out to eat, etc. Taking advantage of age appropriate activities for our kids helps create awareness, it allows the public to see and be around our kids, we build awareness and advocate that they are a part of our community.
Of course it’s not always easy. Sometimes these experiences need some modification and extra support. We need to teach our kids how to act appropriately in public. There needs to be consequences if a behavior problem occurs; natural consequences are best. I told all my kids, including Paul, if they wanted to come back to somewhere they had to be willing to leave. I made up this great scenario that the next time they asked me to say, go to the park, I needed to have a good memory of how nicely they left when it was time to go. Otherwise, I said, if I remembered how they kicked, screamed and ran away, I certainly wouldn’t want to go through that again! (I told the story with great drama. I think it made an impression.)
Parents are the experts on their kids. We know how they react in new situations, but they can also learn and grow from being exposed to different opportunities. Pre-practicing how to act in a challenging situation really helps. Pre-talking how things will go helps. Being sure you have favorite toys, snacks, friends or family along will help your kids feel more comfortable.
It’s important to not always take “no” for an answer. I remember if I was reasonably sure I was putting Paul in a situation I knew he would enjoy I either didn’t give him a choice or if he said, “no” we still did it. Getting comfortable in a new situation takes a little practice for any of us, even more so for our kids.
Advocating can be a fight but it can also be a way to bring awareness to others so they know how great our kids are, what they can do, and how they are more alike than different! It is one of the main reasons we are participating in the 31 for 21 challenge. What are you doing to bring awareness to your freinds and families? A little bit can go a long way.