What It's Like Living with a Disability in the Family

[Angela Butterfly]

Tommorrow is my last day for daily computer access. I thought I would share with you the Speech my oldest prepared for her Health Class (spelling errors & all). At the time she, the writer, was in 8th grade, and her sisters, Laura 6th & Jill 5th grade. Written December 1994.

WHAT IT IS LIKE LIVING WITH A DISABILITY IN THE FAMILY

At birth my sister Jill had her left arm paralyzed. It happened when her head came out but her shoulders were stuck. The doctor began to pull on her head, as a result the nerves in her left arm were damamged. The doctors told my mom that Jill's arm would never get better. My mom didn't like that answer. She began to find help for Jill.

I don't remember going to a lot of doctors when I was younger. Laura (my other sister) and I were usually sent to grandma's. The first person I remember is Martina G. she was a Pediatric Occupational Therapist at Mennonite Hospital. Jill went there from April of 1985 to August of 1987. They made the trip once a week for one hour sessions. Besides the one our a week sessions mom learned how to do Jill's therapy and worked with her daily at home. When Jill was 3 and half Martina had to leave. Mom had to look for another therapist.

The next person I remember is Kathleen. Kathleen is an Occupational Therapist for Children Hospital in Chicago. We make the trip up to Chicago several time a year usually when we go we see a lot of other doctors and therapist. Laura and I usually get stuck in the waiting room sometimes we get really bored. I see a lot of kids with disabilities sometimes it is hard not to stare.

Last year my mom got into a big battle with the school. Jill was unable to type with her left hand until mom found a keyboard that Jill could use. I remember mom coming home from some of the meetings mad. In the end Jill got the keyboard.

I interviewed Jill to find out what it is like for her living with her disability. One question I asked her was, Does it bother you being different from other kids? Her answer was, It used to bother me more when I was little but now it doesn't bother me as much. Another question I asked her was, What is it like not being able to do what other kids can do? Frustrating, sometimes I have to sit out and watch the other kids. Part of the reason that Jill can't do what other kids do is that she has limited movement in her left soulder. Because Jill has muscle tone imbalance of her left arm she has contractors which means she must wear splints at night. Jill doesn't like to wear these splints. They go up past her elbow which means she can not bend her arm shile it is on.
I also interviewed my other sister Laura to find out how she felt about Jill's disability. One thing that she told me was, Sometimes Jill gets special treatment from some people and unfairly teated by others. I asked her how she feels when she see these things happening. Her answer was, When Jill gets special treatment people usually make more out of her handicap and feel sorry for her and when she is treated unfairly the people can be really rude. From talking with Laura it seemed to me that she wasn't really bothered by Jill's disability except when she sees people giving her special treatment or treating her rudely.

At home Jill has responsibilities like the rest of us. We don't give Jill special treatment she is expected to do her jobs. Sometimes she does need a little help.

In my family this is what it is like living with a disability.

[Tracey]

This is wonderful! It gives you an idea of things to look for for all of us who aren't there yet. Thank you and your daughter for that wonderful report! God bless you and your family.


Tracey

[Angela Butterfly]

Hi Everyone,

I debated if I should bring this post up again. Don't know how many new parents might like to read it. I was on this sight last year from mid July to mid August, and will be back, only until mid August again this year.

If your were reading last year you already know my 3rd child was born LOBPI. Very severe and considered hopeless. Jill has worked in our local grocery store deli since she was 16, and still does when she is on break. She is 20 now and a Junior in College. A very talented artist, she is going to be a K-12 Art Teacher.

Hope this speech written when my oldest was in 8th grade can be of some help as you walk down our similar path. Angela a/k/a Dyneah, Laura & Jill's mom.

[Shannon03]

I personally am very glad you shared this-I especially liked to see how well Jill is doing now, almost 10 years later. Has she read this paper recently?
Thanks for sharing!
Shannon

[Angela Butterfly]

Hi Shannon

Jill has not read this paper recently. However, when Jill was a freshman in college she wrote a paper on her injury for 2 classes and gave a speech about it in a 3rd.

After her speech a classmate approached Jill and said "I know someone with the same injury, their arm & hand does not work as good as yours." Jill told me she told them that it was because her mom & she did a lot of therapy.

So for years and years I was the mean old mom. Then when Jill was 19 and out in the real world, she learned much and didn't hate me any more.

Hang in there mom's. I went back and read some of the other posts, when I got back on last week. I too felt overwhelmed, cried a lot too. I used my anger to fight back. So glad this sight is here now. I searched and searched for info, which was hard to find back in 1984. Angela

[njbirk]

Angela,

So glad to hear from you again and happy that you will have internet access for the summer again. Thanks for sharing this with us!

Nancy

[Karen McClune]

Angela,

Thank you for sharing. This paper is a keeper. You have a special family.

Hugs to you all.

Karen

[Angela Butterfly]

Dear Karen,

Thank you for your kind words. The truth is I also have a sibling that was injured at birth in 1947. Although I never heard this diagnosis I am now sure he has a slight form of cerebral palsy, and learning disabilities.

When my mother tried to enter him in Public School, in 1953 (the year I was born) was the first time she learned something was "wrong with him". Back then there were no laws to educate children like my older brother so he was denied an education. That is the first time she learned my brother would be called "Mentally Retarded".

I took over the care of my brother in 1971, when I was 18 and he 24. Immediately following my High School graduation, I left home and within 4 months he was living with me. I had a one bedroom furnished apartment, no car, and no money. Only made $50.00 a week back then. I bought a roll away bed, and he slept in my living room.

Within 6 months of when he came to live with me, Danny was able to get a job in a factory and work along side of everyone else (the normal people). Because I held a job at a Savings & Loan, I had a name plate with my full name. People from where he worked would come in and say "Oh, you must be Danny's sister. We love working with him, he is such a special person. He speaks so highly of you." You see I had an IQ test done of Danny 15 or 20 years ago and he is Average Intellegance, low end.

In 1984, when my daughter Jill was born, I was told she had Severe Brachial Plexus Injury. When she was 7 days old I traveled to a specialists office 75 miles away. He looked at her for less than 5 minutes, and said "get her dressed and take her home. There is nothing that can be done for her."

Well, half way home I cried. Then all of a sudden I angrily said "They locked the doors to my brother's education, because they didn't know any better back then. Danny deserved better, and he didn't get it. I won't let them do the same thing to my daughter. They don't know any better now, but I know better. I will not just take her home and do nothing."

I have always said Danny was born for a reason, so I and many others would know better.

[Carolyn J]

Angela and all MOMS & DADS too,
We are all born the way we are for a reason. I have a LOBPI & my son has a learning and visual disabilities and we have defied the odds and broken down stereotyping and barriers everywhere. I believe that people who are challenged in any way have an innate motivation and tenacity and best of all, resilience!
Carolyn J