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Every Day Frustrations: Kids Who Have Siblings With Special Needs Talk... by Karen Lynn Vidra, The Texas Tornado
Monday, February 20, 2006
Rated "G" by the Author.
*NOTE* This story is based on the feelings that all children experience when they are in this situation, but the characters below are entirely concocted from my imagination. The cities in which they live ARE real, but the main characters themselves are NOT.
A group of children of varying ages talk about the downside of having brothers or sisters who happen to have physical or mental disabilities and why they often feel so "awkward".
What is it like having a brother or sister with special needs? Well, I'll tell ya. It's full of drama and uncertainty; yet, it is full of joy and excitement.
Having a brother or sister who happens to be disabled makes one think about how fortunate YOU are, and it makes you grateful for your own health. I am the oldest child of six, and most of my younger siblings have some sort of disability. They have to worry about things like regular (at times even frequent) doctor or therapy appointmnts, not knowing if their body (-ies) is/are going to betray them once again, or if they are going to end up in the hospital due to some unexpected medical crisis.
I also have to worry about whether my mami and papi are paying close enough attention to me because I often feel like I am carrying the full load of caring for my younger brothers and sisters when they are not at home. Oh, I don't mind caring for my younger brothers or sisters, but a guy DOES have his reputation to think of, and when I am out in public, I often have one (or more) of my siblings with me, and it can get embarrassing, especially if they do something stupid that I am not expecting.
-Josue Rodriguez, aged 19, San Antonio, Texas.
I really don't mind having brothers or sisters who are disabled--for one thing, I happen to be disabled myself--, but the reality of it is this: I am not nearly as bad off as some of my brothers or sisters, and for that I can be eternally grateful. On the other hand, when my sister--say, Jodie, who is about one year older than me--, has an accident in her diapers and starts stinking up the place, that can get embarrassing, especially if someone else happens to catch her odor. I have been in this predicament too many times to count, and it is always very embarrassing.
I also don't like it when she makes her "noises" in church or when we go out to eat at a place like Fire Mountain, and people are soon staring at her, like she is some kind of freak. That is when I wish the earth would oopen up and swallow me.
I also don't like it when my brother Johnny--he has muscular dystrophy, and as much as I hate to say it, he is dying--has a seizure out in public or is having trouble breathing. I think he is going to "code" on us, and it always scares the living heck out of us.
Another thing I don't like is when my brother Roberto--he's my age, but he is mentally disabled, with the attention span of a rag--starts playing with himself in public or starts screaming at inopportune times. I have to put up with a lot and try to explain to people why my brother or sister acts the way they do and then have to tell them more about their disability. That can get pretty frustrating because I often have to repeat myself, and I feel like a busted record at times!
Like Ronee' above was saying, I am disabled myself--I have spina bidida that requires me to use forearm crutches and leg braces when I walk--, but I have sisters with disabilities that are much worse than my own.
For example, I have a little sister, Mariah, who has severe, full-blwon autism, and she can be a big handful at times. She is ten now, but she acts more like a two-year-old. She doesn't talk to us much, and she spends many hours with her eyes fixated on some inanimate object or THING. She also isn't toilet-trained, and the worst thing she did was she pooped in her diapers, THEN had the nerve to smear it on the walls of our bedroom--AND on herself. It was beyond GROSS. It was DISGUSTING.
Another time, Francine--my older sister; she is slow, but she is still a very nice kid with a good heart--got mad about something, and she threw "a mad", and she went all crazy on us. Poor mama was trying to calm her down, and I started crying because I was scared that someone would make fun of her--or of US. I was afraid we were going to get kicked out of Disneyland, where this particular event took place, but thank GOD we weren't.
The person I really feel bad for is our mama, Kendra. She is disabled herself with the vey same thing that I have, spina bifida, only she is in a wheelchair; and she has had to put up with a lot. First of all, she is a single parent, yet she took it upon herself to adopt over a dozen girls with varying handicaps--as well as a little boy, our baby brother, Evan, who is as cute as a bug--, and we have put her through more than you can possibly imgine.
At times her own health has suffered because of the constant stress she is under, and it really worries me when she is not well. I wish we could make it easier for her, but mama is the type of person who rarely asks for help, even when it is obvious that she needs it.
For me, the frustration comes when people are talking about a particular sibling or are staring at them. That really makes me mad. They talk ABOUT them intead of TO them, and it freaks me out, big time. Don't they know that underneath their "obvious problem" that they are people too, that they have feelings, wants, desires, dreams?
They treat my disabled brother or sister like they weren't even THERE, and it really bugs the POO-POO out of me!
Another thing that chaps my hide is when people think that I am the one with the disability, and they tend to treat me differently than my friends who DON'T have a disbaled brother or sister. They think I am disabled, too, and I am NOT. I am perfectly healthy. Oh, I DO have some MINOR learning problems, but other than that I am FINE.
Another thing I get frustrated at is when I have to babysit. I have a sister who is two years younger than me--Jodie--who has severe physical and mental disabilities, and I often have to babysit her because she is incapable of taking care of herself. She is more like a baby than a teenager, and she has to be fed--through a stomach tube where we pour special liquid, so she gets her "nourishment"--, diapered--she isn't toilet-trained--, and dressed, and it is hard trying to communicate with her because what she DOES say isn't much, and it is hard to understand her limited vocabulary.
We often have to try to guess what she is saying, and I get mad at her, and she cries, which always makes me feel terrible. I know she can't help the way she is, but I wish she could tell us what she was thinking or how she was feeling inside instead of us having to play guessing games with her!
Sometimes I feel like I am the parent because of babysitting, but I know that mama and daddy both work and are tired. Yet it gives me a sense of responsibility, and all of a sudden, I feel like I am their protector, and it ends up making me feel good in the long run.
~Tammi Sandusky, aged 16, Nashville, Tennessee.
The thing that frustrates me is when people ask me about my twin sister, Miracle, and they treat her like she is a freak instead of a human child who happens to have severe disabilities. My twin sister cannot do anything for herself, and she is more like a baby than a kid. She requires constant care, and if we aren't careful, she can get sick or end up in the hospital, fighting for her life, which is always upsetting.
I also happen to act as her caretaker. I won't let anyone else do it becasue I am afraid that they are going to screw up somehow and Miracle is going to end up worse off than she already is. Even though she can't do much for herself, Mira is still a great sister, and she always can be counted on to take the sadness away if I am having a bad day by simple actions as smiling or cooing at me. Or she holds my finger with her hand, and somehow that always makes me feel better.
I also have a sister, Linn, who is just a little kid, and she can be a little terror at times. She is always into my stuff, and I am going to have to learn to barricade my room, so she doesn't come waltzing in there and wreck my things. She is a nosy little brat, and apparently she doesn't undestand the meaning of the word "N-O". (Linn is healthy, but she doesn't have any hands or arms, and she does everything with her feet. She is really amazing, but she is still a little brat!)
~Malik Pearson, aged 11, Fort Worth, Texas.
Hi. My name is Tiffany Evans, and I am ten and a half. I live in Columbus, Ohio, with my family. I don't like it when people stare at my sisters or brothers who happen to be disabled or if they make fun of them--or of ME.
I also don't like it when people assume that I am disabled too and they treat me differently.
Another thing I don't like is when my older brother Neddie--he has serious behavioral issues that can make him act crazy at times--freaks out in pulic, and people are soon staring at him--or at US.
Since I am one of the kids in the middle, I am often responsible for watching my younger brothers or sisters, and that can be a royal pain. I want to go out and spend time with my friends, but I often have to miss out because I have to babysit, and that makes me mad.
Indeed, I heartily agree with the board here, Karen. There is so much in here that each tale in itself would be enough to try to think about at any one time. But, my it IS so good to be made to think of the ordeals these young ones face every single day of their lives - often with their own incapacities as well. Childhood should be special and I fully salute these "children" who conduct themselves with more grace, compassion, understanding and tolerance than many of us child-bearing adults. Thank you for your bravery in writing about such usually unaired perspectives. This is the REAL world, thank you. LOL Kate xx
Wow! Karen people can go to school on this write! You really have it all together with the disabled and give these children a voice that they don't get anywhere, usually! You are a very compassionate generous caring person , and this write shows it!God bless you Karen!
I'm keeping dad in prayer!
Being the brother or sister of a child with disabilities has got to be one of the hardest things to experience. You capture the uncertainties; the private feelings; the expected responsibilities; and the joys and embarrassments perfectly in this. I'd like to see this developed as a series. Well done!
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