I have started nursing school (hence the reason for less posts) and am learning things that I hope to be able to use in my work with individuals with intellectual disabilities. One of the things we talked about in class recently is the right to refuse aspects of care. A person has a right to refuse treatment, a right to refuse medications, a right to refuse exercises, and so on. There is a second piece to this, though, that we don't always address. When a person refuses something we think is in their best interest (based on information derived from science, evidence, and education), we have an obligation to discuss with them the potential consequences of their refusal.
In my undying love of using the exact right word, I think a better word would be "declined." The person didn't refuse my offer of going out to exercise, she declined it. The intent of declining something offered seems more polite. Most of the time, when I have been refused, it was polite.
Anyway, last week at one of the group homes, one of the men declined his medications. He absolutely has this right. Our job, then, is to return a few more times after waiting a bit, to see if he will change his mind. If he still declines, we call the doctor and that's that. It is important to realize, though, that missing some of these medications could cause him discomfort or harm.
In this case, staff asked my opinion. I told them to find out the function (or why) he was declining. The answer was that he wanted something he couldn't have (but that often causes him problems should he have it) and was displaying his discontent by controlling something he could control. The team working with him that day discussed which was the area of most concern - that he not receive the small item he wanted or not take his medications. We decided that day to give him the item. He took his medications and his mood turned around for the rest of the day.
Another staffer a few days later nicely suggested another way we could have gone. She said that when this fellow declines medications (or shower, or chores), she explains to him the consequences of his actions. The last time he would not take his medications, even though he was very angry about not being able to have something that belonged to someone else, she was successful in getting him to understand that he wants to feel better and control his actions better and that the medications help him with that. He was still angry but he did take his medications.
So chalk that up to about the 42nd mistake I have made this week (giving him the item). A better approach, as described in my nursing class and by my wise co-worker, would be to realize that the individuals we work with are smart and we can discuss with them the possible consequences of their choices. That would be another step in treating them equally.
Saturday, September 29, 2012
Sunday, September 9, 2012
You Know You're Doing It Right If It's Messy
I find most staffers to be very hard-working. They work hard to keep group homes clean. They work hard to make sure the table is set and attractive. They work hard to make sure the beds are crisply-made up, the laundry is folded, the windows are sparkling, there is no dust on the window sills. Dinner looks perfect, too. And the frosting on the cake is evenly distributed, no corners left unfrosted, with some swirls for decoration.
If the staffers were really working hard, though, many of those tasks would not look perfect. It's not that someone with a disability can't do a thorough job or does not have high standards, it's usually that they haven't had the opportunity to practice that skill or may lack the physical coordination or dexterity to do it perfectly.
One of the hardest tasks when working with individuals with intellectual disabilities is to put your hands behind your back and let their hands do the work. It is so hard to not be more physically active while you are working. It is very hard to exhibit patience as the person practices and completes the activity by themselves. And to continue to do that for the next eight hours of your scheduled work time. But that is what this work demands.
The group homes and day programs should be a little messy. Drinks should be spilling more often. And then guess who should go get the paper towels to clean it up? Windows should have streaks. The dinner table might not always be perfectly symmetrical once set. Actually, that would be normal. That's what my house looks like even on a good day.
If the staffers were really working hard, though, many of those tasks would not look perfect. It's not that someone with a disability can't do a thorough job or does not have high standards, it's usually that they haven't had the opportunity to practice that skill or may lack the physical coordination or dexterity to do it perfectly.
One of the hardest tasks when working with individuals with intellectual disabilities is to put your hands behind your back and let their hands do the work. It is so hard to not be more physically active while you are working. It is very hard to exhibit patience as the person practices and completes the activity by themselves. And to continue to do that for the next eight hours of your scheduled work time. But that is what this work demands.
The group homes and day programs should be a little messy. Drinks should be spilling more often. And then guess who should go get the paper towels to clean it up? Windows should have streaks. The dinner table might not always be perfectly symmetrical once set. Actually, that would be normal. That's what my house looks like even on a good day.
Tuesday, September 4, 2012
A New Normal
I work in a field that is considered a branch of abnormal psychology. Yet the people with intellectual disabilities whom I support consider themselves to be completely normal. Even though we don't go out of our way to let people know they have a developmental disability, they still think they are normal. This is yet another way in which we need to be listening to them and valuing their feedback as to how they would like to receive services. If they think they are normal, aren't they? Is it the rest of us that impose the definition of normal? Differences are okay, as long as we recognize that we all have differences and we all are more alike than different. The people I work with are normal and it is important to them for us to recognize this.
(Inspired by a post by fellow parent/blogger Sylvia at http://faithfulmomof9.wordpress.com/2012/08/31/our-new-normal-part-two/)
(Inspired by a post by fellow parent/blogger Sylvia at http://faithfulmomof9.wordpress.com/2012/08/31/our-new-normal-part-two/)
Saturday, September 1, 2012
Behavior In Social Context
Individuals with intellectual disabilities tend to exhibit behaviors that cause them troubles in their lives. I wish there was another term we could all use because the use of 'behavior' tends to be one of those terms of inequality. If I go on a rant about being the only one in the house to wash the dishes, I go on a rant. If an individual with developmental disabilities goes on a rant, they are 'having a behavior' or 'having a tantrum/outburst' and they might need a 'behavior plan' to address the ranting. If I rant (or vent), it is because I was frustrated at the situation and was expressing myself. If a person with intellectual disabilities rants (or has a behavior), those around them think it was primarily a ploy to get attention, as if they are overly needy. When I was ranting, I absolutely wanted attention, too. I wanted everybody's attention. But I was not considered an attention-seeker; I was being assertive in getting my needs met.
Most of us have a preconceived notion of what people with intellectual disabilities are. We are prejudiced. We prejudge the group of people with disabilities as having unfavorable qualities without truly knowing them. We think them incapable, eternally children, holy innocents, slow, and at times, dangerous.
When I say that I want us to consider behavior in a social context, I want us to think about the ways in which we have treated others differently because of our prejudice and to consider that they are behaving in the same way as any of us would under those circumstances.
First of all, instead of calling them 'behaviors', we could normalize the language and call them 'actions'.
So picture yourself in a social world where you are not heard because you are thought of as not intelligent enough to make your own decisions. If you are not being heard, what would you do? You would get louder. Your actions would be to yell, and still if no one was listening, you might pound something with your hand, or shake your fist at someone. This might be called 'maladaptive behavior' in the clinical world of intellectual disabilities. If I do it, I might be taking actions that are firm and decisive in my resolve to get what I need.
To be honest, it would be highly unusual for me to lose my cool. It would take a lot for me to start yelling, venting, ranting, or raising my fist. But that's because my life is not in any way contentious. I get all of my needs met. I have been treated respectfully all these years. I have a certain amount of status. I have a family that loves and supports me and my many quirks. I have a life that is productive and interests me. Place me in a social context where I have to rebel, and I would (I hope) fight to get my needs met by whatever means. If I found myself in a revolution, I'd take up arms.
My contention here is that individuals with cognitive impairments have been treated so differently or have lived a life so different from the rest of us around them that they have to act out to get their needs met. They don't have status. They are told what to do and how to do it every day of their lives. Most are not married or engage in intimate relationships. In the majority of cases, this is discouraged. Most will not have access to things they want when they want them. Most will not hold down jobs, thereby not feeling needed and productive. Most will be expected to wait patiently a good portion of their lives because they are often doing things in a group. This list goes on and on and you could probably think of so many more life differences on your own. Differences are okay, but not when they hinder, interfere, or harm another. Not when it breeds a revolution and we call it a behavior problem.
Most of us have a preconceived notion of what people with intellectual disabilities are. We are prejudiced. We prejudge the group of people with disabilities as having unfavorable qualities without truly knowing them. We think them incapable, eternally children, holy innocents, slow, and at times, dangerous.
When I say that I want us to consider behavior in a social context, I want us to think about the ways in which we have treated others differently because of our prejudice and to consider that they are behaving in the same way as any of us would under those circumstances.
First of all, instead of calling them 'behaviors', we could normalize the language and call them 'actions'.
So picture yourself in a social world where you are not heard because you are thought of as not intelligent enough to make your own decisions. If you are not being heard, what would you do? You would get louder. Your actions would be to yell, and still if no one was listening, you might pound something with your hand, or shake your fist at someone. This might be called 'maladaptive behavior' in the clinical world of intellectual disabilities. If I do it, I might be taking actions that are firm and decisive in my resolve to get what I need.
To be honest, it would be highly unusual for me to lose my cool. It would take a lot for me to start yelling, venting, ranting, or raising my fist. But that's because my life is not in any way contentious. I get all of my needs met. I have been treated respectfully all these years. I have a certain amount of status. I have a family that loves and supports me and my many quirks. I have a life that is productive and interests me. Place me in a social context where I have to rebel, and I would (I hope) fight to get my needs met by whatever means. If I found myself in a revolution, I'd take up arms.
My contention here is that individuals with cognitive impairments have been treated so differently or have lived a life so different from the rest of us around them that they have to act out to get their needs met. They don't have status. They are told what to do and how to do it every day of their lives. Most are not married or engage in intimate relationships. In the majority of cases, this is discouraged. Most will not have access to things they want when they want them. Most will not hold down jobs, thereby not feeling needed and productive. Most will be expected to wait patiently a good portion of their lives because they are often doing things in a group. This list goes on and on and you could probably think of so many more life differences on your own. Differences are okay, but not when they hinder, interfere, or harm another. Not when it breeds a revolution and we call it a behavior problem.
Tuesday, August 28, 2012
Kid Stuff
Tom Pomerantz came back to provide more training in our agency. This time about the importance of helping adults with intellectual disabilities reach adult status. As a society, we still tend to think of adults with cognitive impairment as being child-like or having a mental age similar to that of children. He says this is absolutely untrue, and I see the evidence in my daily work that he is right.
As I listened to Dr. Pomerantz speak, I realized that I do a pretty good job of treating the adults I work with like adults. I thought of how far I have come over the many years of working with people with developmental disabilities. I used to call them 'honey', use nicknames they didn't ask for, talk in a sing-songy tone, buy them stuffed animals, color with them, do too much for them even though they were completely capable, and so much more. If a mistake could be made, I made it. But I'm doing great, now. I am conscious of engaging in adult interactions with the adults I support. I still do make mistakes, but less often. And the individuals benefit in that they are proud to be treated as adults, proud to have adult expectations, proud to have competence now that they are given the chance to be competent, and more highly respected by members of their community.
I am embarrassed to say there is one glaring exception to my successfully treating adults with intellectual disabilities as adults. I was incredibly aghast when I realized in the training session that I still treat my own 29-year-old daughter as if she were a child. I have all sorts of excuses and I am actually doing much better than I used to. She has corrected me on some of these so that I have learned over the years how she wants to be treated. If any of us use endearments or nicknames toward her, she lets us have it. Just recently, she was intermittently snapping at me for over an hour because I called her "dear."
She is reaching adult status despite me, though. She has made decisions on her own to trade in her Mickey Mouse stuffed character collection for Coca Cola memorabilia. She is selecting less cartoon t-shirts and going for sports teams, now. She has stopped coloring on her own and now prefers to draw and write. She's growing up, just slowly. I just have to get out of her way. She wanted a Toy Story bedroom set last year when I told her she could pick out what she wanted. So there it sits on her bed. I should have told her that adults select other things for their bedrooms. I will start to do that, now. I also told her she could get whatever Buffalo Bills collectible she wanted a few weeks ago. She picked out a stuffed bear and I let her. I should have told her adults would generally select something else. The day after the Pomerantz training, we went shopping together to trade in her Batman backpack and Superheros lunch bag for a more adult version. She selected solid blue adult versions for both and didn't mind at all. I used to think I would hurt her feelings or lower her self esteem if I corrected her choices. I am confident I can find a way to let her become an adult without making her feel bad about herself.
I don't even want to admit how many times I put her shoes on for her so that I can adjust her socks just right or how many times I load her toothbrush with toothpaste. Now that I am aware, I'll do better. As I sat beside her writing this, she asked me to get her a spoon. Before hopping up to get it, I stopped and told her adults usually get up and get their own things. She said, "Oh, ok." and got the spoon.
As I listened to Dr. Pomerantz speak, I realized that I do a pretty good job of treating the adults I work with like adults. I thought of how far I have come over the many years of working with people with developmental disabilities. I used to call them 'honey', use nicknames they didn't ask for, talk in a sing-songy tone, buy them stuffed animals, color with them, do too much for them even though they were completely capable, and so much more. If a mistake could be made, I made it. But I'm doing great, now. I am conscious of engaging in adult interactions with the adults I support. I still do make mistakes, but less often. And the individuals benefit in that they are proud to be treated as adults, proud to have adult expectations, proud to have competence now that they are given the chance to be competent, and more highly respected by members of their community.
I am embarrassed to say there is one glaring exception to my successfully treating adults with intellectual disabilities as adults. I was incredibly aghast when I realized in the training session that I still treat my own 29-year-old daughter as if she were a child. I have all sorts of excuses and I am actually doing much better than I used to. She has corrected me on some of these so that I have learned over the years how she wants to be treated. If any of us use endearments or nicknames toward her, she lets us have it. Just recently, she was intermittently snapping at me for over an hour because I called her "dear."
She is reaching adult status despite me, though. She has made decisions on her own to trade in her Mickey Mouse stuffed character collection for Coca Cola memorabilia. She is selecting less cartoon t-shirts and going for sports teams, now. She has stopped coloring on her own and now prefers to draw and write. She's growing up, just slowly. I just have to get out of her way. She wanted a Toy Story bedroom set last year when I told her she could pick out what she wanted. So there it sits on her bed. I should have told her that adults select other things for their bedrooms. I will start to do that, now. I also told her she could get whatever Buffalo Bills collectible she wanted a few weeks ago. She picked out a stuffed bear and I let her. I should have told her adults would generally select something else. The day after the Pomerantz training, we went shopping together to trade in her Batman backpack and Superheros lunch bag for a more adult version. She selected solid blue adult versions for both and didn't mind at all. I used to think I would hurt her feelings or lower her self esteem if I corrected her choices. I am confident I can find a way to let her become an adult without making her feel bad about herself.
I don't even want to admit how many times I put her shoes on for her so that I can adjust her socks just right or how many times I load her toothbrush with toothpaste. Now that I am aware, I'll do better. As I sat beside her writing this, she asked me to get her a spoon. Before hopping up to get it, I stopped and told her adults usually get up and get their own things. She said, "Oh, ok." and got the spoon.
Saturday, August 25, 2012
Angels on Earth
Over the years I have heard several people refer to people with intellectual disabilities as angels on earth. I've even seen that glazed, upward, tears-in-the-eyes look when some people have said this. The other day, I heard it again. In this case, a trainer teaching about autism said she believes people with autism are 'special' and 'angels on earth'. Before I go on, let me assure you, my daughter is not an angel.
So, what's wrong with glorifying people with varying degrees of cognitive or neurological impairment as angels or guardians or special?
There is always an underlying message or belief with the words we use. I guess if we think they are angels, we could think they are better than the rest of us. That's not as bad as thinking they are less than the rest of us, which is more common, but it is still not equal. It sets them apart and that is not what they probably want. I've only ever seen them want to belong, not be set apart. What some people might be doing is trying to soothe their own feelings of pity or guilt by thinking of people with disabilities as angels. Considering them to be glorified beings gives us a palatable answer as to why some people have disabilities. Well, then we can think they have a special mission on earth. A mission to watch over us, help us be better humans, help us to become enlightened, and so on.
There's a danger to thinking that they are angels. If you have never heard of the "Pillow Angel" case, also known as "Ashley Treatment" be sure to do a quick online search. "Pillow Angel" is what some parents call their severely-disabled children because they stay on the pillow they were placed. It is meant to be an affectionate term yet they also call them "permanently unabled." These parents and some professionals erroneously believe that their children will mentally remain infants forever. Back in 2007, the parents of a young girl born with brain damage decided to have her undergo some treatments and operations to keep her small and unable to grow into puberty. It's called growth attenuation and involved removing her breast buds, performing a hysterectomy, and hormone therapy so she can't physically grow bigger. They reasoned that since she will always be an infant in mind, best to keep her an infant in body so that her caregivers will have an easier time caring for her and will have a better relationship with her because of it. They also reasoned that Ashley wouldn't have to experience the discomfort of menses, possible breast cancer, and bed sores in the future if she received this treatment.
When I think of this case, I think of the many people I support each day to live a full life. Some of them, like Ashley, can't really move a lot. But we don't keep them on a pillow all day or in bed - we transfer them easily by using a mechanical lift and help them into a wheelchair. Then we have them accompany us and talk with them about what we are doing so that they can be involved as much as possible. They go out and do volunteer work. Some of them can't move their hands in a controlled manner, so we ask them if we can help them and then we push the elevator button by putting our hand over theirs and guiding them. There tons of ways to help someone with the most severe disabilities to be involved in this awesome life. They don't have to stay on the pillow. And we don't have to condemn them to a life as an angel.
Angels in mythology and religion have had certain roles in our lives such as messengers or guardians. One important aspect of angels, though, is that they want to be human. And that's all that the individuals with intellectual disabilities want. They just want to be like everyone else.
One more point...sometimes people think that we staffers are angels on earth and special. Stop thinking that way right now. We are paid to do a job. We love our jobs and don't want another job. We get much satisfaction out of our work. Thinking of us as special is degrading to the people with disabilities whom we support, as if they are so challenging that only special people can do it.
So, what's wrong with glorifying people with varying degrees of cognitive or neurological impairment as angels or guardians or special?
There is always an underlying message or belief with the words we use. I guess if we think they are angels, we could think they are better than the rest of us. That's not as bad as thinking they are less than the rest of us, which is more common, but it is still not equal. It sets them apart and that is not what they probably want. I've only ever seen them want to belong, not be set apart. What some people might be doing is trying to soothe their own feelings of pity or guilt by thinking of people with disabilities as angels. Considering them to be glorified beings gives us a palatable answer as to why some people have disabilities. Well, then we can think they have a special mission on earth. A mission to watch over us, help us be better humans, help us to become enlightened, and so on.
There's a danger to thinking that they are angels. If you have never heard of the "Pillow Angel" case, also known as "Ashley Treatment" be sure to do a quick online search. "Pillow Angel" is what some parents call their severely-disabled children because they stay on the pillow they were placed. It is meant to be an affectionate term yet they also call them "permanently unabled." These parents and some professionals erroneously believe that their children will mentally remain infants forever. Back in 2007, the parents of a young girl born with brain damage decided to have her undergo some treatments and operations to keep her small and unable to grow into puberty. It's called growth attenuation and involved removing her breast buds, performing a hysterectomy, and hormone therapy so she can't physically grow bigger. They reasoned that since she will always be an infant in mind, best to keep her an infant in body so that her caregivers will have an easier time caring for her and will have a better relationship with her because of it. They also reasoned that Ashley wouldn't have to experience the discomfort of menses, possible breast cancer, and bed sores in the future if she received this treatment.
When I think of this case, I think of the many people I support each day to live a full life. Some of them, like Ashley, can't really move a lot. But we don't keep them on a pillow all day or in bed - we transfer them easily by using a mechanical lift and help them into a wheelchair. Then we have them accompany us and talk with them about what we are doing so that they can be involved as much as possible. They go out and do volunteer work. Some of them can't move their hands in a controlled manner, so we ask them if we can help them and then we push the elevator button by putting our hand over theirs and guiding them. There tons of ways to help someone with the most severe disabilities to be involved in this awesome life. They don't have to stay on the pillow. And we don't have to condemn them to a life as an angel.
Angels in mythology and religion have had certain roles in our lives such as messengers or guardians. One important aspect of angels, though, is that they want to be human. And that's all that the individuals with intellectual disabilities want. They just want to be like everyone else.
One more point...sometimes people think that we staffers are angels on earth and special. Stop thinking that way right now. We are paid to do a job. We love our jobs and don't want another job. We get much satisfaction out of our work. Thinking of us as special is degrading to the people with disabilities whom we support, as if they are so challenging that only special people can do it.
Thursday, August 23, 2012
Be Cool
What should you do if someone is emotionally out of control?
I regularly read a blog called Ido in Autismland. He's an articulate kid who lets the reader into his autistic world. He recently wrote of his experiences with teachers and others who try to help him during tough, emotional moments.
What it amounts to is you have to stay calm. If he or others are having what my autistic daughter fondly calls 'a meltdown,' you have to remain calm, not overreact, not scold, so that they can find their balance again. People are calmest when those around them are calm. If you show fear or anger or take an authoritarian approach, they are keenly tuned in to it, and they may experience fear and escalate. Ido says that this is part of his neurological make-up having to do with sensory overload and he just doesn't have it under control yet. He says it is most helpful to be taken to a quiet place where he can regain control. And he reminds us all to not be afraid if we see an autistic person having a meltdown. They do not want to hurt anyone.
I have seen many emotional outbursts over the years. Many call them 'temper tantrums' and think that people are engaged in them to get something they want. In the vast majority of cases, that's not it at all. They really are overwhelmed and truly are out of control. It is not purposeful, but instead, it is an involuntary reaction to what is going on around them.
If you want to help them, take a deep breath and calm your own emotional reaction, first. Then ask them how you can help them. If they can't answer and seem stuck, ask if you can bring them to somewhere with less stimulation - that quieter place that Ido talks about. Do this with compassion, not with a mind toward justice or punishment because someone is behaving badly. From my experience, they are already embarrassed as it is, and compassion and empathy are better approaches than chiding.
All humans have emotional issues at some point. It's a part of being human. Want to support your fellow human? Just be cool.
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