I have been spending some time getting acquainted with Born This Way and immediately became entranced and motivated by it. I think it’s a great show that really showcases how people are different, but no matter how we’re born, we are all capable of living full lives. I think it’s really interesting how Sean’s parents handle everyday life decisions with him. They have real discussions with him about situations that he needs to learn as a young adult. I also read about how they stayed up to date on IEP laws and made sure that he was part of an inclusive education program.
Raising a child with autism, even being knowledgeable about IEP laws as a former special education teacher, it has been very difficult to keep our son in inclusion classrooms because we find that teachers do not have strategies to help children like him deal with their social skills deficits and problems with communication. I had the opportunity to ask some questions about raising a Down Syndrome child in today’s world and making sure that children who are different get the same opportunities as other children. It is inspiring to see parents so committed to the practice of inclusion and ensuring that people treat their children as they should–like people.
Interview with Sean’s Mom, Sandra, from Born This Way
How hard was it to push for inclusion as your son got older? What obstacles did you encounter and how did you deal with them?
Oh boy—I wrote a book about this, “Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion.” And it was hard in high school. Sean was an inclusion pioneer and being the first is really hard—especially when there’s a segregated class on campus where the teachers think ‘those kids’ belong. Writing IEP goals that forced inclusion: ‘Sean will memorize and deliver a Monologue in Drama 1 class.’ That got him into the classes, but the bigotry didn’t go away. Sometimes our kids simply reveal the a-holes and we just have to avoid them…they also reveal the angels and those are the ones to flock to.
How did you talk to him about having Down Syndrome and what that meant for him and at what age did you have the conversation?
I was adopted and can’t say the first time my parents ever told me, they just had that conversation with me frequently. So I started when he was a baby, reading books to him that had children with DS in them, and saying ‘your just like the boy in this book. You have DS too.’ So he always knew. We talk about how it affects him specifically, ‘your deaf in your right ear because of DS.’ ‘It’s hard to talk because of DS, so you have to work harder if you want people to understand you.’
How did you locate resources to help your son become a successful young adult?
We are fortunate to have a great Down syndrome Association of Orange County that provides a lot of education programs and supports for parents. Also, the internet and online support, first an email list-serve (back in the olden days) and now Facebook makes the world a much smaller place.
How do you figure out how to budget for everything you need and everything that he needs at the same time?
Sean has an income and has his own budget. When he was younger budgeting was just like any family.
I think it’s really important to open the discussion about how there are some people and some cultures where disabilities are not accepted so easily. Watching Born This Way and seeing how emotional Elena is and hearing her mom’s story about how people did not accept her in Japan, so it was hard for her to accept her daughter was heartbreaking.
So my final question is, “What would you say to a parent who just found out that their child had a disability, whether it’s Down Syndrome, Autism, or some other type of disability if they were having a hard time accepting it?”
Watch Born This Way and see that the possibilities are endless. With the proper supports and opportunities so much is achievable. AND SAVE FOR COLLEGE! There’s so many programs that I never dreamed would be available.
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Make sure you check out Born This Way. It has inspired so many people that A&E has picked it up for another season, which starts July 26th. Watch the Sneak Peak here:
Originally posted 2016-07-21 21:47:55.