Let’s continue our What are the Odds Series. Today’s guest is the Chairperson of the International Down Syndrome Coalition (IDSC), Beth Sullivan. I met Beth in real life in Las Vegas at the DSIA conference and we quickly connected with the phrase:
“It’s always the quiet ones…”
Let your imagination wander.
Beth lives in Kansas with her husband and children. Oliver is 10 and has Down syndrome and Sebastian is 9. When not advocating, Beth is a writer, reporter, book lover, avid reader, bird watcher, nature lover and wine drinker.
1. Do you have a book or a blog? I have edited many books, but do not (yet) have one of my own. I write for newspapers and also write for the IDSC’s blog at the Huffington Post. I also do a lot of PR-type of work for a few organizations, including 321 eLearning.
You can see why we connected. We were torn between drinking and hiding with a good book. It’s tricky. ANYway – speaking of Vegas, let’s see what Beth rolled!.
(2,3) Do you have a child with DS? How old were you when your child was born?
Yes, I do! Oliver is 10 years old. He’s my oldest and he was born when I was 33. (Math is a funny thing. Although I was 33 10 years ago, I am now only 35). 🙂 I have one other child – another son, Sebastian, who was born 19 months after Oliver. (note: The mother’s age of 33 statitions say the odds of having a child with Ds are 1 in 625)
(3,3) What are your thoughts on the eye on the sky?
Living in Kansas, we keep our eye on the sky to watch for those infamous storms and tornadoes. HA!
I figured since this has a dice/odds/gambling theme, I could Google “Eye on the sky gamble”. So, I did. It came up with a musical. That’s all I know. 🙂
Tough question! Hmmm. Winning can be a matter of luck or a matter of skill. I won the hand of luck. I was born into a wonderful, loving, supportive, very close and very large family. I went on to marry a pretty fab guy (don’t tell him I said that) and we have two amazing kids. I’ve never done anything spectacular, but I won the lotto when it comes to family.
(1,3) What research are you doing now, or have you done, to give your family a better advantage?
Advocacy, advocacy, advocacy! We found out Oliver has Down syndrome when he was about 3 hours old. We immediately jumped in with both feet and started trying to educate ourselves. We went online, we bought books, we talked to professionals and family members and other families with a child with DS. We joined online support groups. Since then, we did thorough research before his heart repair. Even more (very extensive) research after he had a rare complication during the procedure and we were told there weren’t any other cases to compare him to and no previous identical cases to guide his doctors. We had to do more research as other medical issues popped up, as he entered the public school system, as we decided to homeschool him starting his 3rd grade year. We have researched and advocated strongly for legislation that can make his life a little easier or better. We’ve tried to research and learn as much as we can about adult services and to prepare for his life in later years. All of that, of course, is related to research regarding Down syndrome and Oliver. But nearly as much research and advocacy happens for Sebastian!
Oliver has tiny feet! People with Down syndrome tend to be shorter in stature. Oliver, however, is so far a pretty darned tall kiddo. He has always been at about the 80th percentile on a typical growth chart. But he has itty bitty feet! Oliver and Sebastian have been virtually the same height for many years. But whereas Sebastian now wears a size 4 shoe, Oliver only wears a size 2.
Another reason I love Beth is she sent me a very nice note and review of my book of short (and super-short) stories: The Future and Other Twists: A collection of short and super-short stories You too can buy one, OR you can win one! Enter the giveaway and tell your friends!