21 Simple Ways to Advocate For Your Child with DS

It’s World Down Syndrome Day.  Do you have on your mismatched socks showing support for community members with Down syndrome?  If not, that’s OK.  I am sure you show support or advocate in other ways.  Today, as bloggers for DS, we are encouraged to do something different.  Some would argue I haven’t made a blog post in so long that actually writing would be a change.  I’ve been busy enjoying the challenges and adventures of life!

On this special day, I’ve decided to talk about advocacy from a parent’s perspective—things we can do with little effort to make a difference.  First, let me say—we can’t change the world by ourselves.  I will admit—I don’t have the time, and I don’t have the emotional fortitude.  But, I recognize there are things I can do; there are things you can do.  So, you don’t want to blog?  Fine.  You can’t afford to adopt all the kids with DS in the world confined to orphanages?  Neither can I.  But, we can make a difference.  We can throw a tiny pebble into murky waters and watch the ripples.  In order of World Down Syndrome Day, here are 21 practical things we can do to advocate for our kids… and some of them, I bet, you are already doing.

1. I have a dream my prince will learn to read.  I dislike the stereotype that children with special needs can’t learn to read.  So, we are working on sight words.  Simply working on reading skills and teaching my child the basics breaks the stereotype.
2. Participate in a Buddy Walk.  It’s usually one day for a few hours and filled with networking opportunities.  I’ve read some people don’t like a day to say, “Hey, look at us.  We’re different.”  Try a new perspective, “Hey, look at us.  We belong here.”
3. Join Girl Scouts or Boy Scouts.  We love Cub Scouts.  My prince can salute and loves being around the other boys.  What a great way to teach more people about his abilities!
4. Get out in the community.  The best way to break down stereotypes is to show people our kids enjoy the same things their kids do.  If invited to a birthday party for a child in the regular education class, go.  Go to museums.  Go to ballgames.  Just go!
5. Be a good model.  Kids, including our kids with special needs, listen and learn from us.  Teach appropriate behaviors and words through modeling.  Don’t use the R-Word.  Don’t teach that it is acceptable to curse, if you don’t want your child to do it. Act like you want your child to act.  Of course, there are exceptions; not ALL of our kids’ behaviors are modeled.  But, they do want to be like us—think about when they put on your shoes or clothes.  You are their model.  You are who they want to be.
6. Get your facts straight.  You should not advocate with incorrect information.  Go to the library, talk with a support group, or find a national organization.  Don’t rely on media, and don’t trust everything you hear.  Keep in mind facts can be proved—opinions are just that.
7. Complete an “About Me” book for your child.  Tell about your family, your child’s favorite items, preferred foods, etc.  Send the book to your child’s teachers.  They will appreciate it!  Here is a start: https://secure.kcdsg.org/files/content/All%20About%20Me%20Booklet.pdf.
8. Don’t be afraid to answer simple questions.  Visit your child’s class and let the kids ask you the typical “Why??” questions.  They will advocate for your child for the rest of his or her educational career.
9. Attend IEP meetings and include your child, if possible.  I can’t imagine someone planning a year of my life or my child’s life without my input.  I will know what is going on until he is old enough to tell me to, “Butt out.”  Then, I will probably continue to stick my nose in his business.  Oh well…
10. Volunteer at your child’s school.  Be a presence.  Let people know that just because your child is in a special class, you both belong.  If PTA isn’t for you, volunteer in the library.  Be a room mother.  Just don’t smother your child.  Remember—school is his or her job.
11. Be a guest speaker.  I know some people don’t like to speak in public.  That’s ok.  You can skip this one.  But, if you don’t mind, contact your local source of higher education.  Many of these organizations are turning out teachers.  Offer to tell your story and change their minds about our kids before they enter a classroom.
12. Fundraise for the important causes.  Believe me, you can hit a fundraising limit!  So many great organizations need money or items.  Your coworkers, family members, etc. will get tired of your constant pleas for money.  So, pick one your child loves.  You might rotate the organization each year.  For us, we focus on therapeutic horseback riding because, that’s what my prince loves. 
13. Get involved with social media.  You know those old friends from elementary, middle, or high school?  They may not know about your child.  Post pictures, tell stories, and change attitudes.
14. Show you mean business.  When your child is going to school or work, make sure your child has the appropriate tools to complete the task.  Don’t say “I want my child to learn” and not send school supplies at the beginning of the year.  Or, “I want my child to learn to read, but I don’t have time to read books to him or her.”
15. Talk to other parents of special needs kids.  Parents struggle when first hearing their child may have a special need.  Talk with them and serve as a source of encouragement and support.
16. Buy a book for your child’s teacher.  Not just any book… add to her library on your child’s disability. 
17. Send a coloring book about Down syndrome to the regular education teacher, your doctor’s office, the local library, etc. The following link is a great resource: http://www.dsamt.org/Repository/5/Document/coloring-book.pdf.
18. Teach independence.  This one is tough but necessary.  We want our children to leave the nest, if possible.  We want others to know our children have potential to live independently, pursue higher education opportunities, work, etc.  Start early to encourage other family members to do the same.
19. Be positive.  Being negative is a great way for people to feel sorry for you.  Share funny stories about your child with coworkers, church members, etc.  It helps them put your life in perspective.  Our lives are more than doctor’s appointments, IEP meetings, therapies, etc.  We have very happy, positive moments to share with others.
20. Get on a legislative mailing list.  Here is the one for the National Down Syndrome Society:  http://capwiz.com/ndss/mlm/signup.  Tell your legislators, “good job” when positive legislation is passed.  Write them if you disagree with the legislation.  Fill your letter with personal examples and FACTS!  Have someone proofread it before mailing it off.
21.  Finally… always continue to learn.  Attend workshops, research, read, etc.  The best advocates are current on terminology and are willing to explore strategies to help their children.  Don’t just rely on other parents.  Consult professionals.

 Happy Advocating and Happy World Down Syndrome Day!