Amanda Portrait, Day 15 – Down Syndrome and Bungee Jumping


When Amanda told me she wanted to put bungee jumping on her bucket list, I was all, “Yeah, okay. You have fun with that.”

She added this to other things I would not partake in, like skydiving and riding in a hot air balloon.

My initial thought was that Amanda’s body is too soft and messed up to handle bungee jumping. This made me curious and I googled, “People who have Down Syndrome who have done Bungee Jumping.” But the results were mostly of people who were doing it as fundraisers for folks with disabilities. I would appreciate hearing from anyone who fits this description, and what they thought of it, so I can someday let Amanda know.

I have no question if given the opportunity, Amanda would do it. She would strap on the harness, make sure her knee brace was in place, hand me her wig, take a deep breath and step off the platform, and I would hear her bowel-wrenching roar all the way to the first bounce.

Then she would be dangling from the cable at the bottom, swinging upside down, yelling my name and telling me how great it is, and I should try it.

No, thank you! *shudder*

When I took her to Cedar Point, she got really mad at me because I wouldn’t go on even the tamest of those rides. I enjoyed walking around with her though. And my ex was not afraid to accompany her on the gut-sucking roller coasters. The pictures were hilarious. Amanda’s face, with her bald head and her mouth that big, half-moon hole, and her eyes bulging, could rival any cartoon character.

She is a prime example, a master of Living In the Moment.

Amanda has Down syndrome and is currently being held by her guardian, who is not allowing us to have contact. Today, March 27 it is 8 months since I have spoken with my sister. I am doing a portrait of her every day until I hear from Amanda.

“I’m the guardian and you’re not.” That’s the reason her guardian gave when he refused Amanda’s request to visit me in summer 2016.

A few warning signals of guardianship abuse:

1. The guardian and/or conservator treats you as an outsider instead of a relative, friend, or loved one.

2. The guardian/conservator sees to it that your loved one doesn’t have a phone.

3. When you visit, the guardian “hovers” or even employs someone to hover so you’re not alone with your loved one.

4. You are denied input about your loved one’s care – the doctor won’t talk to you – you are shut out.

5. The guardian/conservator refuses to take your call or answer your questions.

6. Your loved one doesn’t get his/her mail.

7. If your loved one is in a nursing home, you’re only allowed to visit in the dining room or recreation room.

8. You start seeing questionable documents and realize financial accounts are closed or changed and the statements have been diverted to the guardian/conservator.

9. You discover the taxes haven’t been paid — or even filed.

10. The nursing facility tells you when you visit, you “upset” your family member or upset the staff.

11. Items are missing from your loved one’s home.

12. Your loved one appears to be more sluggish, perhaps even dazed.

The days of guardians running the show are coming to an end. There is help available.  Click the link below:


About Nancy J. Bailey

Artist, author, bad karaoke singer. Woodsy ragamuffin. Mom of a horse named Clifford who plays fetch and paints with watercolors. He visits libraries and schools with me, to promote literacy and making the world a better place. Yes, he is house trained, no, he doesn't live in my house! I have written three books about Clifford. But my newest book, THE NORTH SIDE OF DOWN, is co-written by my awesome sister Amanda, who has Down syndrome. Her unexpected one-liner wisecracks can always make me laugh. If you make me laugh, you've made my day!
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