Just Say Yes

This is going to be a post (of probably many posts to come) about controlling others. Ideally, I think we should do everything we can to try not to control others. Even moreso if we are in any position of authority over others. Many people working with individuals with cognitive disabilities are in positions of power over them as part of that role. We should have great respect for this and be careful not to take advantage, even if unknowingly.  I don't understand why we want to control anybody but ourselves. Is it that we enjoy having power over others?

One way of lessening our grip would be to try to say yes a little more. Sometimes that is not possible as it might compromise health or safety. And sometimes it's not possible to say yes because people find great security in reasonable limits. One of my friends, N, told me that if you say yes to as many small things as you can, there will be a sense of trust built between you. Then when the time comes that you do have to say no to a bigger event, it might not involve a power struggle.

Every time an individual asks for something, the first thing you should be thinking is: "Can I say yes?"

If you can't say yes, find alternatives to saying no.

You could:

Find a compromise.

Offer other choices.
Someone wants another piece of bread at dinner. You, the staff person, have been told that she is significantly overweight and her doctor wants her to be on a calorie-restricted diet, and she has agreed to eat less bread. First, if you say no, she will yell, pound the table, and may hit you. You could say yes, but she has agreed to her diet and wants to lose weight. Instead of saying no, you could say, "How about more carrots or salad?"

Work with them to have them come up with a solution.
Someone asks to go to the store to make a personal purchase but has already gone out earlier in the day and now it is someone else's turn to go out. You could ask them to figure out a solution to make everyone happy. Maybe they could both go. Maybe they can set up another time for the next day. Maybe they could schedule regular, predictable shopping events.

Give them recognition for what they are asking for. 
Someone, when asked what they want to do in their future, says they want to be a police officer. This is where you could give them recognition for their desire. You are not saying yes or no at this point. You just start discussing and asking them questions about what they want. "Well, if you become a police officer, what are you going to do?" "Do you want to help children or animals or adults?" "What color uniform would you want?" You are showing an interest in what they are interested in without discouraging their dream.

Validate their desire before explaining why you have to say no.
Let's say someone was dismissed from their paid job because of their behavior and now they would like to return but the supervisor says it's not a possibility. The fact is, you can't always get what you want. (Astute observation from the Rolling Stones.) In this case, you could validate the person by saying something like, "It must be disappointing to have lost your job and not be able to get it back. It would be hard on me, too." Then you could guide them toward the future and what they have to do to get a new job.

Or, if all else fails, find a more creative way to say no.

More scenarios:

Someone wants to buy a diet soda with her own money when she goes grocery shopping tonight. That's an easy one - just say yes.

Someone asks if they can help make dinner with you. That's a trick question because they should already be making dinner, with you supporting them only as needed. So, if that isn't already happening, you would just say yes.

Someone tries to take something that does not belong to them, or steal an item. Another trick question. Sometimes you do have to say no. This is not about controlling someone else but instead is about doing the individual the favor of telling them what society's expectations are. If they are infringing on another's rights or hurting someone else or hurting themselves, you can and should tell them no. This is only helpful to them and will assist them in navigating the world more successfully.

We have been controlling others for so long, it often is sad to even hear them ask for something that they should simply be notifying us about. Instead of asking staff, "Can I stay up late to finish watching this movie?" They should either stay up and finish their movie or let us know that they are enjoying their movie and plan on staying up a little later than normal. Instead of asking for peanut butter and jelly in their lunch, they should either automatically know they can make it themselves or they should let us know that's what they want.

What have we done over the years when working with others, that people with intellectual disabilities keep asking for things the rest of us are easily entitled to?

Incentives

Yesterday, my daughter, S, had a difficult time at the end of the day and would not get off the van after day program once she arrived to her destination. She cried loudly all the way home - very loudly - and she rides about 25 miles with other people on the van. 

Periodically, during very emotional moments, S freezes when she has something on her mind. So she froze yesterday. They called me to help her get off the van. Usually once she sees me, she gets right off, knowing that I'll talk with her about what's on her mind. She would not get right off when I arrived so I just gave her some space and time to process.

Remembering that all behavior is really communicating a need or is purposeful for the person in some way,  I knew that S lost emotional control over something and then had shut down until she could talk about it. She needed to have some quiet in order to regain composure.

Her well-meaning substitute van driver, trying to be helpful, asked me if there is some incentive I could give to S to get her off the van. Something like a food item, she said. I nicely said, no, that's not the way to go in this situation, and left it at that. But what I was feeling was a twinge of humiliation for S, even though she didn't hear our conversation (I don't think).

There are so many reasons why S, or anyone with cognitive disabilities, should not be offered an 'incentive' in many situations. The clinical term for the food incentive the van driver was proposing is called 'positive reinforcement.' The layperson's terms are 'reward' or 'motivator'. The definition of positive reinforcement is that when presented, it increases the behavior that immediately preceded it.

Here are some of the reasons why S should not have been offered an incentive to get off the van:

1.   The incentive had nothing to do with the behavior. By offering it instead of trying to figure out the reason for the behavior, you are being dismissive about their need at that moment. 

2.  Incentives are often given to people with less power and status by people with more power and status in order to control them.

3.  If the incentive (or positive reinforcer) was given in this case, would S have been rewarded for getting off the van or rewarded for crying for 2 hours and refusing to get off the van? You have to be very careful what you are offering incentives for.

4.  Incentives can be undignified. I, like S, have a tendency to withdraw and shut down if I have something very emotional on my mind. (My husband fondly calls them 'nuclear winters'). Picture how it would be if he told me, "Honey, if you will come out and talk to me, you can have some pizza."

5.  The incentive in this case would have been more for our convenience than for S's needs.

This is how it turned out....I told S that we would be able to talk about what was on her mind once she got off the van. We left her alone and stood outside the van waiting. She stayed on for about 15 more minutes. I  re-approached her and suggested that we go home where it was cool and comfortable and she can relax and tell me what is bothering her.  She nodded and came off a few seconds later. Then later at home when she had calmed, she approached me and said she was ready to talk. She told me that she was upset because she was expecting a different van driver that day and got overwhelmed when she saw he was not the driver.

Compassion Toward The Rage Inside

Over the years I have known a few people who do a lot of yelling. Screaming, really. When you do your best to support someone positively and they nevertheless scream at you, it is hard not to take it personally.

During a staff meeting this week, we had a discussion to figure out how to support staff as they work with a man who is yelling, swearing, and calling staff names. (We already have numerous strategies in place to help N).

As with any behavior, the first tactic is to figure out why it is occurring so you can better help the person and possibly reduce the behavior. So we did a quick analysis of his behavior. It could be that N wants to escape us and be left alone. It could be underlying pain or a medical condition. It could be that we are annoying to him. It could be that he likes that he gets our attention when he yells. All of those reasons do fit and we are addressing his needs but this knowledge is not necessarily helpful in regards to coping strategies for us.

What we ultimately came to, though, is that N, and some others who live in group homes, nursing homes, hospitals, and institutions, are likely experiencing deep, emotional pain and are trying to get us to listen.

This is very hard on us as we try to compassionately work with people and in response, they may lash out at us verbally or physically. But to put ourselves in their shoes and realize that anyone screaming at us that loudly must be in significant emotional pain of some manner, does seem to help us to not take it personally and to carry on with our important work without being affected ourselves. 

This reframing of the situation involves changing your perspective in some manner. One way to reframe is to determine some of the deeper emotional reasons N may be yelling. He is experiencing the profound loss of his best friend in the whole world. He has experienced abuse in his past and he may be raging about the unfairness of that. He is feeling his own limits of mortality as he ages. He watches many of his aging friends go in and out of hospitals, wondering if they are coming back home. And in calm moment when we ask him why he yells at us so angrily, he says he just doesn't know and always sincerely apologizes.

We all care very much for N. He is charming and good. That is some consolation in those difficult moments. While we are supporting him through these tough times, we should be supporting ourselves and each other as well. Our work and peace of mind will suffer if we can't find a way to manage our own emotions when we work with others who are going through a difficult time.

Introverts and Extroverts

I just finished reading a book about introverts (Quiet by Susan Cain) that really has nothing to do with people with intellectual disabilities. Yet in an effort to look at us all as humans who are equal in dignity, I like to incorporate the things I read to this end. Even if books aren't specifically about disabilities, the principles can still be applied.

Rather than thinking that people with disabilities are not normal or are 'special', I think we would be better thinking we are all just humans, all with similar yet individualized tendencies and needs.The ideas from this book about introverts can certainly apply to the people I know with intellectual disabilities.

The simplified definition of an introvert is one who is energized by time spent away from people. An extrovert, then, is someone who is energized by spending time with others. I admit that I have never thought of the individuals whom I work with in this way, nor have I thought of my daughter as an introvert or extrovert. After a long day at her day habilitation program, she has to unwind alone in her bedroom. I figured that was an autistic thing, maybe a way to cope with transition. What if it is because she is an introvert?

According to Cain, there is more to it. An introvert is prone to over-arousal and an extrovert is prone to under-arousal. It's not just about a reaction to people in our lives but stimulation, too.  An introvert is sensitive to new stimuli and will seek breaks; an extrovert is sensitive to boredom and will seek activity.

This could explain a lot when working with people with cognitive disabilities. Is introversion the reason an individual seeks a bathroom several times during a volunteer activity even though we know she doesn't have to go? Is extroversion the reason some people seem 'antsy' when we are encouraging them to sit quietly and focus on a craft project or when there is nothing to do on the weekends? Are some of the behavioral concerns we see actually an effort to adjust themselves due to their introversion or extroversion tendencies? This would mean, whether it is convenient for us or not, we might have to offer more downtime to introverts and more activities and novelty to people who are extroverts. We might have to accept that they are who they are despite what we want them to be. Maybe the introverts really need to spend a few hours alone in their bedroom and we don't need to worry that they are depressed. And maybe the extroverts really need us to fill their schedules with fun and new activities. Cain says if we don't, the introverts will feel overwhelmed and fuzzy-headed until they get their break and the extroverts will feel restless as if they had cabin fever until offered something stimulating.

If one-third to one-half of humans are introverted, doesn't that mean all humans?

Shoelace Story

Once upon a time, there was a little boy with autism who needed to learn how to tie his shoes. Teachers, parents, and clinicians came up with a methodology to teach him starting at age 6. By age 13, he had met his goal and could tie his shoes.

The little boy found it difficult and actively resisted learning this skill. Even though he yelled and tried to pull away, the clinicians were insistent and gave him rewards of candy and smiles when he accomplished any small step to the overall goal.

When he finally achieved his goal and tied his shoes, his support team was overjoyed at his success.

Two years later at age 15, he learned how to type on a keyboard and wrote how that was the worst day of his life. During those seven years of learning to tie his shoes, day-after-day he felt coerced and humiliated over being made to do something against his will. He asked them why they didn't just go out and get some sneakers with velcro fasteners and let him work on things more meaningful to him. He told them he felt invalidated because they made him work on their goal for him. It was their goal, not his.

There are lots of morals to the story, here. The boy thought the moral of the story was to really look at what is important for someone. In his case, he felt that age-appropriate interests, reading, and current events would have been a better focus than to spend seven years teaching him to tie his shoes.

The moral of the story from my perspective was that his support team was not really listening to him. At the time, he was only able to express himself through his behavior, not having developed more effective communication skills, yet. Listening to him regarding his preference and validating his desire not to learn to tie his shoes might have actually worked toward happily and peacefully having him want to learn this skill in the future.

Story adapted from Seven Keys to Unlock Autism by Hall and Isaacs

Services That Are Kind

I wrote a couple weeks ago about providing services that are kind in order to head off the potential to harm or abuse people who are unable to protect themselves. Vulnerable

Each one of us will define "kind" differently. Some dictionary definitions of kindness include being generous, warm, considerate, pleasant, gentle, thoughtful, and safe.

As a support person for people with intellectual disabilities, are you providing services that are kind? If you have never thought about services in this way, I'll start you out with some questions you can ask yourself.

Are the services and supports you provide something that you would want?

Do you say please and thank you when asking someone to do something?

Do you pay attention to the person when they have asked for attention?

Do you actively help them to get what they need and want when they can't get it for themselves?

Do you include them in the process of what services they want and how they want them?

Are you enthusiastic when greeting an individual you support?

Do the individuals feel safe and secure in your presence?

Do you take the time to try to make a connection with them?

When all the work is done, do you go out of your way to spend time with someone in which no demands are being placed on them?

Are you too kind, meaning that you are so treacly as to be condescending yet think you are being kind?

Have you asked the person what they need to support them to have a high quality of life?

If they have behaviors that cause them problems or get them into trouble, have you included them in the plan to address the behaviors?

Are you approachable?

Do you truly miss the person if they are out for the day?

Are you enthusiastic about the work you do?

Do you remember why you got into this field?

When you are at work, do you put the individuals' needs before your own?

Theme Meals and the Art of Decision-Making

We have great food and many opportunities for personal choices regarding meals at the group homes. The individuals meet regularly to determine what they want on their menus while at the same time learning about wellness and healthy choices.

Last week at one of the homes, one of the individuals planned what is called a 'theme meal' for herself and her friends. Her birthday is coming up and at almost all of the homes the individuals devise their birthday meal of choice. S decided she wanted a southern meal and came up with a great plan independently. This is what she wants: barbeque chicken, macaroni and cheese, cornbread, okra, collard greens, grits, carrot raisin salad, tossed salad, and fruit pizza for dessert.

A few days later during a staff training, the topic of S's birthday meal came up. As the staff discussed the birthday plans and logistics of the day coming up next week, we realized that S's meal is huge and that we have to stay in budget and be conscious of not over-eating. There were about 12 staff members around the table deciding how to scale back this birthday meal. The discussion included reducing the carbs, not needing two salads and two vegetables, and wondering if the fruit pizza is taking the place of the traditional cake and ice cream. The team was not able to reach a consensus when some wise person in the room said that S would probably be able to make these decisions and would be happy to be included in the process. Everyone readily and happily agreed. And that afternoon, when it was brought to her attention, S easily realized that the meal was too big and was able to come up with a plan she liked. So we are going to have barbecue chicken, mac and cheese, collard greens, carrot raisin salad, and fruit pizza for S's birthday.

How did we initially forget that part about including S in this decision? How often do we make decisions for someone else when they have the capability to make the entire decision by themselves? And in cases where they need help in making decisions, do we remember to include them in the process by talking with them, asking them, and teaching them how to make good decisions?

If we had not included S in the final decision of her birthday meal, the outcome might have been entirely different. S is keenly aware of the situations where she feels she is not being treated as an equal to staff. If she had been told and not asked, this could have set us all up for power struggles and hard feelings over the simple topic of a meal choice.