Bad Habits

My sister Amanda has some bad habits.

Amanda loves sweets. She loves food in general. She loves to sleep late. She doesn’t like to shower or brush her teeth.

Amanda has Down syndrome.

She has struggled with her weight throughout her life. Before our parents died, she would come to lower Michigan and stay with me for a month or so each spring and summer. During that time we would take walks, and drink lots of water. We rewarded ourselves with hamburgers and soda on Wednesdays, and went to the movies and had popcorn on weekends.

She hated to walk, but found out that breakfast was delayed until after we did. I complained right along with her. It sucked to wait for breakfast! I hated it! Walking is hard!

b0a63-amandamesept08

It got easier.

Each year, her weight would drop dramatically.

Of course, she’d go home to Mom and her Snickers bars and then gain it all back.

Amanda has bad habits.

At times, she will refuse to budge when asked (or ordered) to do something. She can be very stubborn.

Screaming at her makes it worse.

But of course, that is her own fault. She should cooperate, right?

Amanda has bad habits.

She sleeps late. Yelling at her to get up in the morning doesn’t work.

Spraying her with water doesn’t, either.

Amanda doesn’t clean her room. She is messy. She leaves clothes lying around. She will wear the same shirt, day after day. She keeps old clothes full of holes and refuses to throw them out. She develops foolish attachments to things. That’s a shirt her mother wore. Or that is one that she got from me for Christmas in 2007.

Yelling at her doesn’t fix it.

169b2-amandame

I can help, I said. I sent information. I talked on the phone. I tried to explain the concept of reward versus punishment, and how punishment just isn’t a good motivator for changing behavior. I tried to explain that Amanda responds to positive reinforcement at random intervals combined with occasional jackpots. I explained that Amanda is habit-oriented. I explained that Amanda thinks in the short term, and doesn’t really perform well for a long range goal.

But it’s easier just to yell. You wait for the behavior you don’t want, then punish it.

Yeah, that’ll work.

Maybe denying her privileges will help. When Amanda comes to Michigan through June and July, she will not be allowed to visit with me for more than a few hours at a time.

No walks. No movies. No popcorn. No road trips with sister.

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“Amanda has some bad habits,” my brother, her legal guardian told me. She is going to stay with my other brother in Cadillac. Apparently he is the one designated to deal with the bad habits.

And visiting me wouldn’t be like visiting her other sister, where Amanda stayed for 3 weeks and lost 17 pounds.

“She starved me,” Amanda whispered to me on the phone, a few days after she finally got out of there.

She probably had it coming.

I haven’t seen Amanda since July 2015, and it sure sounds like she has some issues. She must be a real mess.

So, let’s talk about bad habits.

Heck, I’ve got some doozies.

  • If given a chance, I like to stay all day in my pajamas.
  • I drink way too much Coca-Cola.
  • I don’t answer the phone.
  • Right now I am not getting any exercise.
  • I spend way too many hours working each day, and not enough time playing.
  • I don’t go to the doctor or dentist.
  • When I get mad, I swear. A lot. (I have proven this over the past several days.)
  • I stop talking to people who anger me instead of trying to fix it. I rarely forgive anyone who wrongs me.

I think everyone has at least a few bad habits, but most people see them on a sort of sliding scale. For instance:

Is it worse to:

  • a) Wear dirty clothes, or
  • b) Indulge yourself by saying cutting things to people whenever it pops into your head?

“Gee, you’ve really gained weight!”

Is it worse to:

  • a) Throw your towel on the floor, or
  • b) Cheat on your wife?

(That one’s a toss up.)

Is it worse to:

  • a) Sleep until noon, or
  • b) Consume large quantities of alcohol on a regular basis, and have your driver’s license taken away for a year?

These are just examples. Of course, it’s all a matter of perspective.

Is it worse to:

  • a) Eat too much, too fast, or
  • b) Be so intellectually lazy that you can’t comprehend how to humanely solve a problem with a person who has a disability? After all, she is the one with the disability — not you.

Is it worse to:

  • a) Watch soap operas during the day, or
  • b) Be so cold-hearted that you completely shut out the people who love you, and split apart two sisters who want to spend quality time together?

Here’s the thing. Yes, Amanda has bad habits. Many of them are deeply interwoven into her disability.

For instance, people with Down syndrome do tend to sleep more. They need it. Also, their bodies are soft; they have a propensity to be overweight.

Amanda’s joints have suffered over the years. She’s had at least two knee surgeries and probably will need a replacement at some point. Being mobile is, and always has been, a challenge for her.

But, she does have the ability to change some things, and with the right encouragement, she will. She has proven this time and again.

Also, Amanda is kind. She really tries to put others first. This is more than I can say for anyone else in this scenario.

Life is short. We — any one of us — can be gone in an instant. In a microdot.

Having Down syndrome means that Amanda, at 45, statistically has about 15 years left to live.

Her chances of developing dementia (like Alzheimer’s) during her remaining years are one in four.

Amanda and me at DeTour Harbor

 

We are here to enjoy our time on this planet. We are here to love each other.

That is all that really matters.

Get your priorities straight, folks.

blues sisters

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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!
This entry was posted in abuse, cognition, disabilities, disability, dispute, down syndrome, down's, down's syndrome, empathy, families, family, guardianship, Michigan and tagged , , . Bookmark the permalink.

3 Responses to Bad Habits

  1. Julie Anne Bair says:

    Nancy, I can hardly see through the tears to type! Oh, my dear, you have so hit the nail on the head. God bless you! My son has dementia related to head trauma and early onset Alzheimer’s at 46. He doesn’t perform up to other’s expectations of him. They yell at him, make demeaning remarks, bully him (at work) and sabotage him. He finally had to go on disability pension on doctor’s orders even though he didn’t want to. As a mother, it hurts me to the core and I want to strike back. He, on the other hand, is very forgiving. That is just how people are, he says. Thank you for writing this!

    Like

    • So sorry you and he are putting up with this, Julie. I always hope that people will rise to a higher level of behavior in their treatment of others. Bullies just suck. And there are many degrees and many types of bullying. But basically, all of it is a throwback and means people haven’t evolved and can’t think their way through a situation.

      Like

  2. Pingback: A Snake Called Narcissus | Diary of a Misplaced Yooper: Cliffy's Mom's Blog

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