Sherri Coles (parent):
My name is Sherri Coles. I’m the mother of three. And, ah, my middle child has multiple disabilities. Jeffery is 25, Christiana is 22 and Kelsey is 20. Christiana’s the one with the disabilities. Gosh, there are a lot. She has hydrocephalus, she has, um, intellectual disabilities, she has visual impairment, she has slight CP, cerebral palsy, she has uncontrolled seizures and she has lupus. Um, she’s a happy camper most of the time, she likes people, she likes social interactions, she was in a regular class until she got into the seventh grade and then inclusion just wasn’t working because the kids were getting different, ah, classes every hour and it just wasn’t working so we then put her into, um, a self-contained class where they did daily living skills which is something that she really needed.
She functions like a child of maybe five or six, you know, she still believes in Santa Claus so Christmas is still fun at our house , she still believes in the tooth fairy although she’s quit losing teeth, I hope, and, um, you know, she still likes to watch Sesame Street sometimes and that sort of thing.
Alyne Ellis, interviewer:
And what about her awareness of her own disability in relation to your other two children?
Sherri:
She is aware that she’s disabled and we thought it was going to be a much bigger problem when her younger sister began to drive and got her own car. Jeffery, ah, of course is older and him being a boy, and he’s, he’s farther apart age wise from Christiana than Kelsey and Christiana are. And it didn’t seem to bother her when Jeffery learned to drive and got a car. We were really afraid that it would be an issue because of Kelsey and there’s, there’s more rivalry there, at least on Christiana’s part because they’re closer in age and they’re both girls. But she’s actually done very well. We haven’t told her “no, you’ll never get to drive” but we’ve let her know that it’s difficult to do and she just thinks she’s not old enough right now to do it.
Alyne Ellis (interviewer):
But the reality is – she never will.
Sherri:
No, she will never drive.
Alyne Ellis (interviewer):
What’s in her future?
Sherri:
She is in her last year of public school. Ah, she’s in a job-training program and this year her job site is the Marriott Hotel and she’s learning laundry rooms, she’ll start learning some maid services, she’s working a little bit in the kitchen with catering banquets and things that they have and we’re hoping that that will give her some job skills for when she graduates which will be this, June 2010.
She loves animals, we’ve been trying to find a vet who might like someone to come help out occasionally in his office and we haven’t found that yet, but we’re thinking of signing her up for Animal Rescue, they do pet adoptions at, ah, pet stores like Pet Co, Pet Mart, Pet’s Mart, on the weekends, and we’re thinking of perhaps setting her up for that so that she could be, um, with more than just our dog cause she really likes animals. But I don’t see her being able to function, like in a vet’s office or even in an animal shelter because she doesn’t have quick enough reflexes or strength enough to, if a dog was, you know, trying to pull her away, she’d fall over, or if she had a seizure she would fall and the dog would be who knows where. She would need to be more supervised.
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She could have a seizure any time, you never know when it’s coming, and they’re not infrequent. If she’s tired, if she’s ah, anxious and upset, if she’s fighting off, you know, an ear infection, cold, flu, then she’ll have multiple seizures a day and we have to be right on top of it because then she can go on to status seizures, which means they never stop, and then eventually she’ll quit breathing so she has to be rushed to the Emergency Room. And that is the thing that gets in the way of some of the things that she would like to do and that we would like her to be able to do and we need to figure out how to work around that because she needs someone with her because you never know if she’s going to have a seizure. And she falls, and, ah, you know, doesn’t know where she is and she’ll call out funny things and people get frightened.
Alyne Ellis (interviewer):
You look back over all this time you’ve had with her and what kind of advice would you give people about - anything you want to share?
Sherri:
The most important thing is for parents to be united in their desires for their child to have as normal a life as possible and to become as educated and informed as possible, not only about the disability but about disability issues and about social issues and to, to be…to seek to have their child have the best life that’s possible. To not accept limitations that doctors or others put on them.
I can remember when Christiana was in, in early childhood program, she was four, three or four, and they told me that, um, she had to go there full time, I said “no, I want her to go three days a week to, ah, Mother’s Day Out,” a kind of pre-school program, and they said “no, you can’t do it,” but I fought back, and I wouldn’t back down, and I got that. And when we had an IEP meeting they said, ah, I said “I would like Christiana to learn her ABCs,” and they said “she can’t do it, it’s impossible”. And so I talked to the teachers at pre-school and they worked on it, they were working on it with all the children and the most amazing thing was, Christiana was the only child with disabilities in the pre-school, she was the first in her class to learn her ABCs.
I didn’t want to put set limits on her. She, she will define her own limits by what she can do. Another example is, all the kids were going across on those, are they monkey bars? The bars that you hang off of and you move your hand to the next one and you’re, you know, you’re hanging in space. She wanted to do that more than anything in the world, that’s all she talked about. Well this is a poor little thing who, you know, she was skinny as a rail, and she had no muscle tone but she decided she was going to do it and by golly, by the end of the year she did it! And when she did it the whole playground erupted into applause and the principal made a real big deal out of it and they, they made an award for her because she wanted that and she worked for it. And, and we would have all set limits saying Sweetie, you can’t do that. But she could! She wanted it badly enough and she, she did it!
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Have your child included as much as you can because if your child has significant disabilities they will always need help throughout their whole life and you want to make sure, and I feel that my job as a parent is to make sure that people help Christiana not just because they’re paid to. I want people to help her because they like her. That makes such a difference and if they don’t have the social skills that won’t happen.
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Christiana:
My name is Christiana Coles and I’m 22.
Alyne Ellis (interviewer):
So tell me about you. You’re still in school, right?
Christiana:
Yeah. I’m in the job, job program like through Marriott where I do laundry downstairs.
Alyne Ellis (interviewer):
And do you like it?
Christiana:
Yes! I like to draw and read.
Alyne Ellis (interviewer):
What are you reading?
Christiana:
I like to read, ah, mostly books and to draw pictures. I like to draw about my family, well, I do like to draw a picture about my dog...
Alyne Ellis, interviewer:
Ah hmm…
Christiana:
...if I have, like, maybe free time after, after I’m done working. Her name is Duchess, she’s a boxer.
Alyne Ellis (interviewer):
And – do you have a job coach?
Christiana:
Yeah, like one of my teachers.
Alyne Ellis, interviewer:
And what does that job coach help you do?
Christiana:
Well they help by doing…by taking out the laundry out of the dryer, sometimes I do that but I have to be careful when the clothes are hot. I used to work for the Claude Moore Colonial Farm, like…the garden center and usually I sell plants there to people if they want to buy ‘em and I got a free T-shirt from my job coach like from Debbie, who works there.
Alyne Ellis (interviewer):
So tell me, what advice do you have for other people who have special challenges?
Christiana:
Well, I think, be nice, when they’re working and sometimes I don’t, like, get mean or rude when I say “excuse me, please”.
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