February 20, 2018

Growing Up With A Disabled Sibling

Disabled SiblingHave you, or has someone you know, grown up with a handicapped sibling? It takes all kinds of people to make a family, and this includes the developmentally disabled.

When I was 11 years old my mother remarried, and I acquired two stepsisters, Paula and Carol.  Carol was developmentally disabled.  Her brain was pretty much stuck between the ages of one and two.  She couldn’t converse, only babble.  She would throw tantrums. And because she wasn’t a “normal” one or two year-old, she would do other strange things, like bite her tongue and bang her head against the wall, and sometimes have seizures.

She would also stare at people.  One day as us kids were eating cereal for dinner (yes, dinner….this was actually a treat), Carol was staring at my brother, Sam, who was 10 years old at the time.  When she frowned, it was like a permanently engraved, upside-down frown, like none other anyone has seen.  And there she was, her frowny stare boring holes into my brother!  He hated these staring episodes.  He put a cereal box between himself and Carol.  She would move her head around the box, and continue looking at him, huge frown intact.  He’d say, “Carol, quit staring”, only to hear her cry out, “Aaaaaaaaach!!” and pound her fists on the table and kick her feet, and sometimes begin to cry loudly.  Of course this brought a quick reaction from our new stepfather, who would reprimand Sam intensely, and thus, aggravate the existing tension.

One day Sam had had enough.  When putting the cereal box between himself and Carol obviously wasn’t working, he got up out of his chair, retrieved a paper grocery bag, and placed it on her head.  As he walked back around the table, the paper bag turned, as if she were staring at him right through it!  He declared that he would never sit at the table with her again.

This was a rough beginning.  And it was only the beginning.  When my little sister and I had to bathe Carol, we would get scratched and clobbered.  When we tried to play with her, our new stepfather would yell for us to be careful of her head.

One Christmas she got a new doll.  When she opened the package and smelled the new doll smell, she gagged and threw up.

We Grew To Love Carol

And while it seems as though this was an impossible situation, we all grew to love Carol, and we all adapted to one another.  As us kids grew, Carol stayed the same.  Her body grew, but her brain continued to be a one to two year-old.  As we matured, our ability to care for her grew, and our love for her grew too.  When we moved out of the house, we would have special visits with Carol and take her shopping, and do other things, like get her hair and nails done.

One day my sister took her shopping for clothes, and as they were trying things on in the dressing room, Carol would giggle with glee and as my sister was putting things on her, and say “Oooooooh!  Zat feew gooooooood!  Aaaaaaaaaaaah!”  Who knows what the other shoppers must have been thinking.

What’s It Like Today?

Today Carol is 45 years old.  She has advanced a small amount and is able to talk better.  She says funny things just like a little toddler.  But her emotions can be volatile.  If she hears a sad song, she begins to cry.  If we start laughing, she’ll laugh so hard until her tummy hurts, and she’ll begin to cry.  Sometimes she’ll just cry for no apparent reason.  Other days, she’ll sing and clap all day long.  She may be handicapped, but no matter what she does, she is a joy, and growing up with her was a wonderful learning experience.

Carol will be here for another visit soon.  We’re all looking forward to seeing her.  This is to you, Carol!

Could you use some parenting help?

One tool that we’ve used is Total Transformation by James Lehman. It’s given us a lot of solid, common sense ideas for parenting our challenging children.

About the author: By

Kris is wife to Robert and mom to Gabriel, a wonderful little boy. She enjoys animals, especially horses, and likes to write about children, pets, and other things close to her heart!

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  1. While reading your post I remember my friend who has a disabled daughter. It is really hard to take care of her and really hard to communicate with her. She is 10years old now and was not able to communicate. I’m happy for your Carol and she is lucky to have a sister like you.

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