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In Sibs' Own Words

Whether they are preschoolers, in grade school, teenagers or adults, brothers and sisters of people with special needs have much to say—if they are given a chance.

Below, you will find links to writings by siblings across the life span. These writings are offered for two reasons: Parents and service providers will learn much about siblings' concerns from these thoughtful sibs and siblings will meet others who share their unique joys and concerns.

Be sure to check out the books written by brothers and sisters on our publications page.

If you are a sibling of a person with special needs and would like to add your comments to In Sibs' Own Words, please email us with the subject line "In Sibs' Own Words."

All rights reserved.

My sister's name is Naomi and my name is Amber.  I am five and she is three.  We think Naomi has Rett syndrome and some other things.

I like to play with Naomi.  If she cries, I can make her laugh by laughing!  Naomi has an electric piano.  Sometimes I move her arms and help her push the keys to make music.  I love to play with her.  She loves me best of all.

Naomi has a g-tube.  A g-tube is a tube that goes into her tummy so she can drink a special kind of formula.  Naomi throws up a lot, and I don't like it when she throws up.  When my parents are dealing with her, I'm alone and nobody pays attention to me.  It's like I'm not even there.  If she did not have this sickness, I would like it much better.

Last year I went to Camp Me and My Family and met some new friends who have sisters and brothers with special needs.  We had a lot of fun!  One girl had a brother who has a g-tube and was in a wheelchair and couldn't talk, just like Naomi.

If Naomi didn't have special needs, I would be much happier.  Thinking of all the things we could do together fills up my brain with thoughts!  We would do all sorts of things—play ball, make up games together, or play in the hot tub.

When we go to school, I sometimes like to bring Naomi into my classroom and introduce her to my classmates.  Sometimes, if we are early enough, I go into her classroom and see her classmates.

I worry about Naomi sometimes.  When she is in school I wonder what she is doing and if she is having a good day.  When I get home from school, I can't wait to see the art she did at school.

On weekends I like friends to come over to play and meet Naomi.

I wish she would get better sometime in her life.  But I do not wish she will get better in days, weeks, months, or years.  I just wish she would get better the minute I wish it.

Amber, who loves to dance, swim, swing, rollerskate, and read, lives in Forestville, California.

(from Views from our Shoes copyright, 1997, Donald Meyer.  All rights reserved)

Lizzie Suwala, 9

When I was in Mrs. Callas's fourth grade room, we had to write about a special person in our life.  Of course, I picked my brother Jason, who is blind, deaf, and mentally retarded.  When my teacher chose the top five essays, mine was one of them.  Here are some of the things I wrote in my story:

Jason is special to me because he has a disability and is different from other people.  Since he's been born he has not been able to see, hear, walk, or talk.  I know he is a gifted person, because he got communion when he was 18 years old, and he received it on my sister's birthday.

I watch Jason when my mom is doing things around the house.  I hold him on my lap and hug him because he is so little.  Sometimes I give him his Prosobee drink after supper.  I taught Jason to drink by himself.  I don't like it when he pulls my hair, but he doesn't understand.

I also don't like it when people stare at Jason in the store—especially older kids who should know better.  (I still think my brother is handsome!)  Another thing I don't like is that we can't go on vacations except when Jason goes to summer school.  Also, we can't go out to eat because he can only eat certain foods.

My friends aren't a problem, and I am not embarrassed by Jason.  My mom took Jason to my class on the last day of school.  My teacher wanted to meet him and the kids thought he was cute.  I felt happy and proud of him because he didn't cry at all.  I like when he goes to church with us because he isn't any problem, except for his noise-making and crying.

I think Jason has helped my sister and I like each other better.  Jason is a great brother, and life would be hard to imagine without him.  I feel bad for him sometimes because his girlfriend, Michelle, died.  They always held hands in class.  I wish someday he would be normal like me so I could see what he would be like.

Lizzie lives in Ford City, Pennsylvania and likes basketball and softball.

(from Views from our Shoes copyright, 1997, Donald Meyer. All rights reserved)

Ryan Clearwater, 10

My name is Ryan Clearwater.  I am 10 years old.  My sister Lindsey is 13 years old.  She has mental retardation.  I would like to share some thoughts I have with you for your book.

Lindsey comes to Shepard school with me and I feel O.K. about that. She sometimes is in a regular class and other times is in a special class.  I don't feel O.K. when people make fun of Lindsey.  It makes me mad and sad at the same time.  My good friends understand.

One good time I remember is when I had to read a book to Lindsey at school to make her feel better because someone hurt her feelings on purpose.  Reading the book to her calmed her down and I felt good that she was O.K. and safe.  I think having a sister with disabilities has made me a more caring and sensitive person.

Lindsey is my only sibling.  It is hard to put into words what having a sister with special needs is like, but I can't imagine having a plain old sister.  Sometimes I wish she wasn't handicapped — but she is and I can't change that or cure her.

I like to hear Lindsey laugh.  I don't like it when Lindsey cries or gets in trouble.  Sometimes I'm scared for Lindsey because I can't predict what she will do next.  She's in her own little world.  Lindsey is a "free spirit" and likes to wander around our neighborhood.  We have a fence around my house to keep her safe.

Sometimes I'm jealous of Lindsey.  When I ignore my parent's directions, I always get privileges taken away.  When Lins ignores them, she doesn't always get punished because she is still learning right from wrong.

When I grow up I want to be involved in sports.  When Lindsey grows up I want her to have a job that she enjoys.

Ryan, who likes cards, video games, coin collecting, and sports, lives in Columbia, Missouri.

(from Views from our Shoes copyright, 1997, Donald Meyer.  All rights reserved)

Anne Meade, 14

Hello, my name is Anne Meade and I have a twelve-year-old brother named Michael. He has cerebral palsy. Some people may think having a brother with a disability is fun but it's not all fun and games! Oh, sure, it's great when I can yell at him and he can't yell back or when my family waits in line at a historical place and we get to go to the front of the line to use the elevator.

But there are some bad things, too.  Like when he can't tell me what's wrong, or when people stare at him, or when he doesn't understand when we want him to do something.

Life is sometimes frustrating for the whole family.  Sometimes I wonder what my brother is thinking.  When he yells, is it a cry of pain or anger or maybe even joy?  I get jealous sometimes—I think everybody with a disabled sibling does.  So much money is spent on his equipment, but when I want something, I have to use my own baby-sitting money.  I understand why he can't buy his own things but it still makes me mad.

I lead a pretty regular life.  All my friends love my brother.  If I was friends with somebody who didn't like him, I don't know if I would be friends with them anymore.  When I baby-sit my brother, sure I may have to change a diaper or two but it's really easy.  Usually, innocent little me, I take over the TV but when his crying becomes intolerable, I usually change the channel.

To end this, I just want to tell all people, young and old, please resist the urge to stare at people who have disabilities.  I do sometimes but after a while, I regret it.  And don't take pity on my family!  We are normal!  Just because my brother has cerebral palsy doesn't mean we are aliens or anything!  We have feelings, a brain, and a heart just like every other person in this world.  So does my brother!

Anne lives in Sanford, Maine, where she likes to ride horses and hang out with her friends.

(from Views from our Shoes copyright, 1997, Donald Meyer.  All rights reserved)

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