Special needs: What parents think others should know about their experiences

By Kylie Gumpert

Editor’s note: This article has been corrected. It previously stated that Launi Whedon’s last name was Whledon, and that she was a photographer. Whedon works part time for a photographer.

If you could share one thought or experience with the world, what would it be? Why would it matter to you? What would you hope could come of it?

At the PIN Bureau, we asked people across the country “What is one thing that people should know about having a child with special needs?” For Margaret Enos, a 62-year-old retired history teacher, her “one thing” is that sometimes her experiences are just like those other families go through.

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Thomas Felak with his friends, Gretchen and Kelly. (Photo by )

Sometimes the biggest predicament is whether a child wants vanilla or chocolate ice cream.

And just like mothers who are raising a high school senior, Enos is helping her bluegrass-loving, 21-year-old daughter with cerebral palsy prepare to start a new life.  Again, like for most 21-year-olds, the age is a golden one.

In Megan’s case, it means choosing an adult day program that fits her wants and needs, which will absolutely involve an art and music class. For Enos, it means fighting the urge she gets to think she knows what’s best for her daughter.

When asked, “What’s the biggest issue you see when it comes to news coverage of those with special needs?” Enos said it was similar to the urge she gets when it comes to decisions her daughter faces.

“There’s a sort of bias, and it’s hard for people who don’t deal with it on a regular basis to interact and understand,” Enos said. “What I see most is a tendency to decide or think for other people.”

For Launi Whedon, 57, Wash., her “one thing” is that blaming parents isn’t a solution.

“Assuming it’s the parents lifelong responsibility to care for the child ignores the reality inherent in the age differences,” Whedon said in an email.

Her son, Mark, is 23 and has been diagnosed with autism. According to Whedon, fulfillment is one of the most difficult issues he deals with.

“The cognitive delays not only limit what he can do, but what he wants or dreams of doing,” Whedon said. “A ‘fulfilled life’ is challenging enough to strive for when you have the ability to dream of ‘doing.’ The first 18 years of life for a child in special education is spent learning to respond appropriately to other people’s choices and requirements. The notion of ‘agency’ and ‘self-determination’ is completely stripped out of the curriculum.”

Cheryl Felak, a registered nurse in Seattle, hosts her own blog “Because We Care – Beyond Inclusion,” which she uses to share stories about her 21-year-old son Thomas and current legislation and advocacy efforts.

Her “one thing” is, well, a lot of things. But her main “one thing” right now is keeping in mind that as children gets older and their support needs are significant, they are more likely to be isolated because there is less care and support available.

“People think that if you live in an institution that you are isolated, but my son goes out with people in his house two to three times a week, he goes to church, we have a parks and rec program every week,” Felak said. “He has the support and the people that can take him out, whereas when you’re living by yourself you can’t go out like that.”

When it comes to news coverage of special needs, Felak said she wished there was more variety in who is used as a source on the topic.

“The more real people that can get out there to talk about what people really want, the better,” Felak said. “It just makes sense.”

If you have personal experience with kids who have special needs, the PIN Bureau invites you to share your experience and help inform news coverage by filling out this query.

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