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So, about a week ago we were presented with a really neat opportunity to have an exclusive interview with Sean’s mom, Sandra, from A&E’s BORN THIS WAY. Have y’all watched the show yet? Its awesome. I was most excited about the opportunity to hear the perspective of a more experienced parent but the perk of this being someone we get to watch on TV in just a week made it even more fun. Sandra provided a lot of great answers and resources and I’m thrilled to share below.

BTW4

Here is our interview:

  • We are currently beginning to make decisions about pre-school for our daughter, Kennedy. Understanding that all kids are different, did you choose specialized schooling or inclusive schooling in a “typical” classroom environment for your son and what was your reason for this choice?

—When Sean was in preschool ‘inclusion’ through the school district wasn’t available, and services (speech, OT, PT) weren’t available if you didn’t attend…so we did both. We had Sean in district special ed preschool in the mornings, and then 2 afternoons as week he was in a regular preschool. TODAY you can have inclusive preschool thanks to the new clarifications in the law…so go for inclusion! Our kids imitate their peers…and watching the typical kids go to the potty, listening to them talk, learning to take turns and play were all valuable social skills that go far in life.

  • Looking back now, how, if at all would change the school experience?

—I wouldn’t change a thing about elementary school. It was textbook perfect. High school…If I had it to do over I would have sent Sean to another school in our district that was more inclusive-minded and didn’t limit their students with disabilities like the one Sean attended did.

  • What method or resource have you found to be most successful in educating peers who may need some help becoming more understanding and/or more accepting of Down syndrome?

–We created a book (on the computer, very primitive) that introduced Sean to his peers. The teacher read the book to the class, then sent a copy home for their parents to read to them one more time…we included a fact sheet on inclusion and on Down syndrome, so their parents learned too. Here’s a template that we encourage others to use to make their own books— http://outskirtspress.com/webpage?isbn=9781478729570

  • When I consider the transition from high school to adult life beginning, I often worry about Kennedy feeling left out or left behind as her friends and siblings start to move out and into collage and careers. Did you experience any difficulty with this? What is your best advice for making this transition smooth?

—SAVE FOR COLLEGE and send her too! There are so many programs now. www.thinkcollege.net

This was the hardest part because the majority of Sean’s ‘typical’ friends went away to college. And they are just now graduating and not all are moving back here. We did create a social group of Sean’s peers who have a variety of disabilities and they get together weekly. That made a huge difference in keeping Sean socially active.

  • I read that Sean attends a community college. Do yours and Sean’s opinions and goals for him attending college align?

–I try to let him select the classes he wants.He’s not working towards a certificate or to transfer, so we look at the schedule each semester and he picks what interests him. He has had many acting classes. He took a pre-requisite to the cooking classes. Golf , bowling, weight training, and is enrolled in Tennis for the fall. I do my best to not tell him what to do…and he doesn’t listen to me even if I do.

 

  • Before Kennedy was born, as parents newly receiving a diagnosis, we often pictured future us caring for an adult rather than being empty nesters who were downsizing and traveling, etc. As I see this unnecessary limit that I was placing on my daughter, I wonder what you would say is your son’s biggest accomplishment in gaining his independence as an adult.

—Confidence in his abilities is his biggest accomplishment. Believing in himself, that’s the key to happiness and independence. I had to believe in him for him to believe in himself.

Thank you

Sandra

 

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