Anybody who has a child with a disability knows it's an very different parenting experience.
With a child without a disability, you are the parent, the leader. You call the shots. You want to teach your child the right way to do things, and once you show them what is expected, that is it, they better tow the line, to use the old cliche.
With a child with a disability, it's the polar opposite. You cannot expect the child to do something they are just not capable of. They have limitations, and to try and push beyond them is like trying to cram an elephant into a light socket. Forget it, folks. It ain't happening.
So you learn to take the child's lead. Instead of them following you, you follow them.
I realize some people think this is nuts. The child calling the shots? What would the parenting experts say about that one? Making concessions for a child? Impossible!!
My husband and I have been the direct, and indirect, recipients of these opinions.
For example, Mishayla gets easily agitated and nervous in a place where there is a lot of people. This is common for many children with developmental disabilities. They just aren't able to process a lot of stimuli at once.
One place Mishayla would have these "melt-downs" was in restaurants. She would not eat at the table. The only place she was happy, was underneath it, where she didn't have to see anybody. We tried everything at first to get her to not do this, but she would become so distraught, then we would get upset, and that would be the end of any type of harmonious dining experience.
So we said, "To hell with it. Let her do what she wants."
So when we went out, under the table she would go, usually with her iPod. The waitress would come and want to take our order. Tony would order, then I would order, then Tony would say, "and she'll have the corn dog with the fries, and a diet Coke."
The waitress would look at us, perplex. She probably thought he was just an eccentric, maybe feeding his imaginary female friend. When we would see this confused look, we would point under the table to our daughter, happily listening to her music. When the food came, we would pass the food and drink down to her, and she would have her own private feast. Sometimes we would pass our food down to her, and she back up to us.
Some waitresses found this charming, and would laugh and play along. Others I could see found it pretty bizarre. Not to mention the looks of some of the other patrons.
It was easier when we had a booth. But if we had to have a table, that got pretty interesting, because everyone can see what's going on down below, and that there is a little person under the table eating.
I remember one morning we had gone to breakfast at the International House of Pancakes, and we had to take a table in the center of the restaurant. Of course Mishayla adhered to her usual routine. Our food came, and as we was eating, I looked up to see this man in a booth directly in front of us. He was with his wife, and three children around Mishayla's age.
To put it in the vernacular, he looks at us like we were the scum of the earth. His eyes said what kind of people would let their child eat on the floor in a public place?
But I was willing to endure people's derogatory opinions and dirty looks if it's going to make my daughter more comfortable, and that was all there was to it.
And that included my own family.
My own mother could not fathom this parenting philosophy we had embraced. When Mishayla and I lived with them for 3 months, it drove my mother nearly to madness to see me allowing Mishayla to eat on a snack table in front of the TV, because that was the only place she would eat. In the house I grew up it, meal time was nearly a religious experience. It took place only at the table. These were the hard and fast rules of the universe I was violating.
"That child is running you when you need to be running her. You will regret it."
Whatever, I thought. And the thing is, she now eats at a restaurant just like the rest of us. What she needed was time. For a child with developmental disabilities, everything is in slow motion. What takes most kids a short time, can take someone like Mishayla years. But it does happen. It just happens on their own little clock, and if you give them the space to come to where they need to be in their own way.
This has been true with many things with her. Just this year, at age 12, she began to sleep in her own bed in her own room, lights out. And she prefers it that way now, after years of sleeping with Tony and I, sleeping on a mattress in the living room; anything to avoid sleeping in her room. And many kids go through this; but it takes them less time to come to the place they need to be. It took her several years, but she got there, which is what she always seems to do.
Unconventional? Maybe. I often think the forces of the universe gave Mishayla to Tony and I because we are unconventional, independent people that aren't easily swayed by the opinion of others. We are comfortable outside what is expected. And parenting a child with a disability can often leave you on the outside looking in.
I say embrace it. Eat under the table. Sleep on a mattress in the living room. Learn from a child that has their own internal clock no one can interfere with.
I always say kids like my daughter have more to teach us then we have to teach them. And I'll always be learning.
Tuesday, April 24, 2012
Tuesday, April 17, 2012
A word about the word
In the special needs community, there is always a lot of talk about a certain word.
That word, of course, is "retard."
It's too bad. This word has really gotten a bad wrap. All it really means, if you look it up in the dictionary, is "slow."
re·tard
And when you think about it, it's not bad to be slow. The trouble is, people starting equating this word in a negative way to people with developmental disabilities. Like it was bad to be slow, bad to be a person with intellectual challenges. So the word "retard" got ugly. People made it that way, directing it at a certain segment of people.
As a English professor, I admit it, I love words. And one thing I teach my students is that words evolve. Have you ever tried to read the original "The Legend of Sleepy Hollow," written in 1820? I have given it as an assignment to my students, and they freak out!!
"I can't read this!!" they exposulate.
Well, I tell them, that's not surprising. Simply because no one talks like that anymore. And some words we would never use, because as time has gone on, these words have taken on a new meaning, often a negative one. In "Sleepy Hollow", the narrator talks about someone being "niggardly."
Would you go around calling someone "niggardly?" Probably not. Not of course unless you have been in hybernation for the last few hundred years, I don't have to tell you why. But in 1820, it just wasn't what it is now.
In truth, the word actually means "stingy and miserly."
This word evolved, and got a bad reputation, just like "retard." These words are suffering severe discrimination, just like the people who are called them. What makes these words ugly is the vitriolic, unkind, and ignorant attitudes the person possesses that says the word when addressing a person of color, or a person of intellectual disabilities.
Of course, there are some people that don't mean it as a slight, they just say it kind of as a habit. It's hard to resist. It is a good word. And it's become cool to say it all the time. "Oh, you're such a retard," or "that show is retarded." Now, these comments are not put toward a person with disabilities, they are generally directed toward someone who doesn't have them, or something that has nothing to do with them.
But think about it. Would that same person say, "Oh, you're so niggardly, you won't even lend me a dime," or "He is a niggarly man." Probably not. When you hear it with you 21st century ears, it sounds offensive.
So unless you are saying something like "we must retard the fire," or "his journey is retarded because of traffic," which you wouldn't say, the word retard needs to be retired, just like it's brother niggardly. They deserve the rest, in the dusty pages of Grandma's old "Funk and Wagnel," and our kids, (yes, I mean my kid too) deserve to not be marginalized by this word that people made ugly.
Isn't it amazing how a little word can wound? Can bring so much pain, usually to a person who would not inflict this same pain on another. Who is a pure and unpolluted soul. Those of us without an extra 21st chromosome have a lot to learn from people who do.
I don't know whether Mishayla has ever been called a retard by anyone. She has never said anything to me or her dad about it. But I have to say it wouldn't surprise me, if somewhere along the line, she has been. If this word has crossed her ears, I hope she didn't understand it. Trouble is, she won't always be 12 years old. She will grow up, and understand this word one day.
But God willing, if we all make an effort, she never will. None of our kids will. Let's make it so little babies born with Down Syndrome today, and other intellectual disabilities, never have to hear this word, never have to feel, just because of a misguided use of this word, that they are less than the rest of us.
That word, of course, is "retard."
It's too bad. This word has really gotten a bad wrap. All it really means, if you look it up in the dictionary, is "slow."
re·tard
[ri-tahrd, for 1–3, 5; ree-tahrd for 4] Show IPA
verb (used with object)
1.
to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.
verb (used without object)
2.
to be delayed.
And when you think about it, it's not bad to be slow. The trouble is, people starting equating this word in a negative way to people with developmental disabilities. Like it was bad to be slow, bad to be a person with intellectual challenges. So the word "retard" got ugly. People made it that way, directing it at a certain segment of people.
As a English professor, I admit it, I love words. And one thing I teach my students is that words evolve. Have you ever tried to read the original "The Legend of Sleepy Hollow," written in 1820? I have given it as an assignment to my students, and they freak out!!
"I can't read this!!" they exposulate.
Well, I tell them, that's not surprising. Simply because no one talks like that anymore. And some words we would never use, because as time has gone on, these words have taken on a new meaning, often a negative one. In "Sleepy Hollow", the narrator talks about someone being "niggardly."
Would you go around calling someone "niggardly?" Probably not. Not of course unless you have been in hybernation for the last few hundred years, I don't have to tell you why. But in 1820, it just wasn't what it is now.
In truth, the word actually means "stingy and miserly."
This word evolved, and got a bad reputation, just like "retard." These words are suffering severe discrimination, just like the people who are called them. What makes these words ugly is the vitriolic, unkind, and ignorant attitudes the person possesses that says the word when addressing a person of color, or a person of intellectual disabilities.
Of course, there are some people that don't mean it as a slight, they just say it kind of as a habit. It's hard to resist. It is a good word. And it's become cool to say it all the time. "Oh, you're such a retard," or "that show is retarded." Now, these comments are not put toward a person with disabilities, they are generally directed toward someone who doesn't have them, or something that has nothing to do with them.
But think about it. Would that same person say, "Oh, you're so niggardly, you won't even lend me a dime," or "He is a niggarly man." Probably not. When you hear it with you 21st century ears, it sounds offensive.
So unless you are saying something like "we must retard the fire," or "his journey is retarded because of traffic," which you wouldn't say, the word retard needs to be retired, just like it's brother niggardly. They deserve the rest, in the dusty pages of Grandma's old "Funk and Wagnel," and our kids, (yes, I mean my kid too) deserve to not be marginalized by this word that people made ugly.
Isn't it amazing how a little word can wound? Can bring so much pain, usually to a person who would not inflict this same pain on another. Who is a pure and unpolluted soul. Those of us without an extra 21st chromosome have a lot to learn from people who do.
I don't know whether Mishayla has ever been called a retard by anyone. She has never said anything to me or her dad about it. But I have to say it wouldn't surprise me, if somewhere along the line, she has been. If this word has crossed her ears, I hope she didn't understand it. Trouble is, she won't always be 12 years old. She will grow up, and understand this word one day.
But God willing, if we all make an effort, she never will. None of our kids will. Let's make it so little babies born with Down Syndrome today, and other intellectual disabilities, never have to hear this word, never have to feel, just because of a misguided use of this word, that they are less than the rest of us.
Wednesday, April 11, 2012
Lady Gaga's Biggest Fan - and her Mommie's
Anybody who knows Mishayla knows she loves Lady Gaga.
She likes other music artists as well, like Adele, and Taylor Swift and Rascal Flats. But Lady Gaga is her all time favorite.
She listens to her music for hours, and watches her videos. She has her posters in her room. When she is on TV, the excitement on her face is contagious. It lights up with joy.
Some people have said this is not someone that would be a good role model for any child because of her extreme eccentricity and her propensity to, on more than one occasion, exploit her own sexuality.
I admit when she got interested in Lady Gaga, I was a bit nervous. I still check on her when she is on the internet to make sure what she is watching is nothing unsavory. Of course some would argue that everything about Lady Gaga is unsavory (remember the outfit that was made of beef?)
I was really worried when she wanted a recent issues of Vanity Fair magazine that had a spread of Lady Gaga. One of the pictures was a nude shot, taken from the side, with singer Tony Bennett painting her (I didn't know Tony Bennett was a painter, pretty cool!!)
I showed it to Tony, wanting to know what he would think. "You can't see anything, it's just an art piece,"he said.
So because of Daddy, she got the magazine. I'm glad, because the pleasure she gets from it gives me almost as much pleasure as it gives her.
Lady Gaga is an amazing entertainer; there can be no doubt of that. And as for the eccentricity, it's really nothing new; she just does it a lot better than most.
It makes me think of my own childhood, and the things we used to think were so eccentric. In the 70s we were ending the hippie era with long haired, screaming rockers that threw their hair everywhere, poured glitter all over their faces and embraced androgyny. And as far as blatant sexually goes, we had Michael Jackson's provocative dance moves, and of course there is Madonna......say no more about that one. If you were around in the 1980s, you certainly remember.
And our parents worried and fretted we were embracing inappropriate role models, and we would think our parents weren't "hip" or "cool," and we swore we would never be like that....
Oops......don't look know........but it's evitable; you end up doing what every parents does, that is, wanting to protect your child.
Yet I also want her to experience the world, and to learn to embrace it. I think she does do that. I let her take my laptop in her room, close the door, and explore the internet. And yes, I check on her, but I'm not hypervigilant about it. I make sure she is protected from anything harmful, and I leave it at that.
And while she loves Lady Gaga, what is the thing I find her listening to the most? It's actually a audio file I made for a voice class I took a few years ago. I had completely forgotten to delete it, and one day, I heard her listening to it.
"That's you singing, Mommy," she said proudly. I hear her listening to that as much as Lady Gaga.
So while we parents will never quite reach the heights of a Lady Gaga, we ultimately will be something these artists can never be to our children.
Simply, Mom and Dad.
She likes other music artists as well, like Adele, and Taylor Swift and Rascal Flats. But Lady Gaga is her all time favorite.
She listens to her music for hours, and watches her videos. She has her posters in her room. When she is on TV, the excitement on her face is contagious. It lights up with joy.
Some people have said this is not someone that would be a good role model for any child because of her extreme eccentricity and her propensity to, on more than one occasion, exploit her own sexuality.
I admit when she got interested in Lady Gaga, I was a bit nervous. I still check on her when she is on the internet to make sure what she is watching is nothing unsavory. Of course some would argue that everything about Lady Gaga is unsavory (remember the outfit that was made of beef?)
I was really worried when she wanted a recent issues of Vanity Fair magazine that had a spread of Lady Gaga. One of the pictures was a nude shot, taken from the side, with singer Tony Bennett painting her (I didn't know Tony Bennett was a painter, pretty cool!!)
I showed it to Tony, wanting to know what he would think. "You can't see anything, it's just an art piece,"he said.
So because of Daddy, she got the magazine. I'm glad, because the pleasure she gets from it gives me almost as much pleasure as it gives her.
Lady Gaga is an amazing entertainer; there can be no doubt of that. And as for the eccentricity, it's really nothing new; she just does it a lot better than most.
It makes me think of my own childhood, and the things we used to think were so eccentric. In the 70s we were ending the hippie era with long haired, screaming rockers that threw their hair everywhere, poured glitter all over their faces and embraced androgyny. And as far as blatant sexually goes, we had Michael Jackson's provocative dance moves, and of course there is Madonna......say no more about that one. If you were around in the 1980s, you certainly remember.
And our parents worried and fretted we were embracing inappropriate role models, and we would think our parents weren't "hip" or "cool," and we swore we would never be like that....
Oops......don't look know........but it's evitable; you end up doing what every parents does, that is, wanting to protect your child.
Yet I also want her to experience the world, and to learn to embrace it. I think she does do that. I let her take my laptop in her room, close the door, and explore the internet. And yes, I check on her, but I'm not hypervigilant about it. I make sure she is protected from anything harmful, and I leave it at that.
And while she loves Lady Gaga, what is the thing I find her listening to the most? It's actually a audio file I made for a voice class I took a few years ago. I had completely forgotten to delete it, and one day, I heard her listening to it.
"That's you singing, Mommy," she said proudly. I hear her listening to that as much as Lady Gaga.
So while we parents will never quite reach the heights of a Lady Gaga, we ultimately will be something these artists can never be to our children.
Simply, Mom and Dad.
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