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.
Down Syndrome Advocates in Action Nebraska, is a group for parents run by parents.