2 posts tagged “youth”

When children are the caregivers

Posted July 13th, 2015 by

In 1998, the American Association of Caregiving Youth (AACY) was founded to help support a silent, vulnerable and hidden population in the United States – the thousands of children who provide care for family members, but are unable to manage their own lives independently. And to show these strong children that they are not alone, the AACY created the Caregiving Youth Project (CYP) that integrates healthcare, education and a community of support.

PatientsLikeMe is partnering with these two organizations to help shine a light on the lives of these caregiving youths. But who are some of these hidden heroes? Meet Katrina. She’s the oldest of three siblings, and growing up, she cared for her bedridden uncle, her sister (living with down syndrome and heart problems) and her brother (living with apraxia). But as she says, “this situation is a privilege because it is a challenge.” Read about her experiences in her own words below:

Katrina’s story
“Not many children grow up having a completely bed-ridden uncle living with them. Or a little sister with Down syndrome and severe heart complications. Or a little brother who could hardly hear as a young boy and who has Apraxia; but, those who do have a unique privilege. Why, you might ask, do I use the word privilege? Doesn’t the word “problem” or “difficulty” or “burden” describe the situation better? No. This situation is a privilege because it is a challenge. And it is in and through challenges that one may grow. Because my family has had these challenges, we have increased in love for one another and have been unified into a solid family. My parents have made enormous self-denying concessions to do what is best for their extended and immediate family in caring for those with physical and mental needs. 

As a child, my parents encouraged me and my siblings to help our uncle with simple needs, and we loved it when we were able to help. When my little sister was born, I was so proud and excited to be able to help care for her; it made no difference to me that she had Down syndrome–she was my sister. My mom was and is very disciplined with her time and responsibilities and taught me do the same. The importance of diligence and staying focused on the task at hand was important in general, but also because we never knew what might come up. My uncle, at that time, needed help almost every two minutes, and understanding my little brother was sometimes very difficult because he couldn’t communicate well with words.

I am thankful for my parents’ example of self-denial, discipline, and hard work, and I was able to carry those qualities, though probably not quite as well, into high school and apply them when doing homework, training for basketball, and leading the honor society. I am also thankful for their example of and passing on of a positive attitude; devoting time and energy to our family members and others is not a bothersome burden but a joy when looked at with proper perspective. Yet with the demands of household responsibilities, it was often hard to stay balanced getting my homework done while finding time to help my uncle and still be patient with my little sister too. But I made it through and finished on top and now feel somewhat prepared for the challenges ahead. And not only have these situations made me stronger and more mature as a person, but they enable me to help and sincerely empathize with those in similar situations.”

You can learn more about the AACY and the CYP by visiting their websites.

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Daring and Dreaming

Posted July 11th, 2011 by

Dare2DreamChallenge, sponsored by Superfutures

When you’re diagnosed with an illness, there are many unknowns ahead. For example, what’s the best future possible for you? At PatientsLikeMe, we believe that no one should have to face these questions alone.

Like today’s patients, today’s youth are also facing uncertainties. With the world economy remaining in a precarious state, it can be hard to imagine a bright future or a rewarding career. That’s why we’re taking a slight detour in today’s blog post to tell you about a contest that’s near and dear to us – the Dare2Dream Challenge. Sponsored by Superfutures, a website that helps teenagers prepare for college and life, the Dare2Dream Challenge is a video contest that asks youth between the ages of 14 and 21 to share their dream career in two to five minutes.

You may be thinking that this sounds a bit like our recent PatientsLikeMe “Express Yourself” Video Contest. And you would be right. We saw how the medium of video allowed our members to tell their powerful stories in their own way, and we’re excited to see how creative today’s youth will get in expressing their hopes and dreams. Know a young person who could use an opportunity to dream this summer? Direct him or her to facebook.com/superfutures or superfutures.com to learn how to enter the contest.

Win a lunch and mentoring session with Iqbal Theba, who plays Principal Figgins on "Glee"

Ten contest finalists will receive a “Cheggucation pack” from the textbook rental company Chegg that includes an iPad 2, a homework help subscription and more. But here’s the real carrot dangling for any young fan of the television show “Glee.” The grand prize winner will receive a free trip to Los Angeles to have lunch and a mentoring session with Iqbal Theba, who plays Principal Figgins on the hit show.

“When I was a teen, I ended up in college pursuing someone else’s idea for my future” says Theba. “I realized after an internship at a construction company that this was not for me. I started to think about what else I can do with my life. I had no idea I would become an actor. Now, I’m living my dream, and with this challenge, I can help others do the same.”