The Right to Refuse

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.

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.

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/)

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.

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.

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.

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.

Motivation and Individuals with Intellectual Disability

I'm studying Maslow's Hierarchy of Needs in a class I'm taking. The idea is that certain human needs have to be met before the person can grow as a human. The needs one has to go through in order are:

Physiological
Safety and Security
Love and Belonging
Self-Esteem
Self-Actualization

Ideally, we humans would be motivated to go through all stages but apparently it is rare for someone to be self-actualized.

Not that I am going to do justice to this theory but....

We first need our physiological needs met before we can look for safety and security. This means we need food, water, air - things that assure we stay alive.

With those being met, we can look for safety and security - shelter, money, being free from harm and anxiety. Once we've got that we can look for...

Love and belonging - close friendships, sexual intimacy, loving family, and a general sense of belonging.

With those in place, we are motivated to look for esteem - being respected by others, making important contributions, confidence, and self-respect.

And then we can look for self-actualization - realizing our potential.

So why do I write of this when considering people with intellectual disabilities? Well, if Maslow's theory has any merit at all, we are missing the boat when we are working with people with developmental disabilities. We seem perfectly content and consider it a good day if we provided good food, warm clothes, and kept the individuals safe. Routinely, we do a nice job meeting the first two needs on the hierarchy (although we do have arguments from time to time as to how to implement those food and safety parameters). What about the other three, though? Love and belonging is tough. Some of them do feel a lack in their lives that they haven't married, had children, don't have close family, don't have physically intimate relationships, and don't feel they belong. Then for the need for esteem, they don't generally feel respected by others I don't think. How can they when they are so often told how to do things properly and corrected for how they are doing it?  They don't often have opportunities to build their confidence or make contributions because we are so busy happily doing things for them. Which means they aren't even ready to realize their potential, much as that truly is our goal for them. Ooops, and look what I wrote: "our goal for them." What about their goals for them?

I'm just musing. As I studied this motivation theory with a mind toward equality for all, I wondered what it would take to have all humans regarded with the same outlook and to be encouraging those other needs for individuals with disabilities. Not just the basic needs. All of us belonging, respected, and reaching our potential.

Be Here Now

Back in the 70's, Ram Dass wrote a trippy book called, Be Here Now. It is essentially a spiritual book on living in the moment rather than in the past or future. When I am at work and daydreaming of places I might like to be instead of working, I think of that book. To be successful and effective when working with others, we need to find a way to savor each moment with that other human being. Those moments matter to the person you are supporting. And they matter for you, too.

Some of us get a little down while we are working. We think how sad it is that someone has to use a wheelchair. Or how awful it must be for someone with an intellectual disability who can't control their emotions. Or how frustrating it must be for someone who can't communicate effectively with others or can't take care of their own personal needs. But we can't let ourselves think that way; it does not help them or you.

What we have to do instead is Be Here Now. Everything is ok the way it is. We have to realize that we can't change their particular situation. We can only change how we impact the time we spend with them. That means we can make that eight hours awesome. We don't even have to do anything spectacular. Just be mindful of each moment spent in the presence of another. Spend those moments fully with them. Really get to know and listen to them. Just doing their hair, or playing a board game with them can make their day. Joke around with them and don't take things so seriously. Ask them about things you don't know about them - their family, upbringing, things they love, what was their favorite part of the day, anything.See what they want to do with their life and help them to do it.

Be Easy On Each Other

I have come across a couple situations regarding the ethics of caring recently. When you are in the midst of issues that are important and there is no consesus, tempers can flare.

In the first situation, one elder gentleman with mild cognitive impairment is very sick. The staff love and care about this man very much and they are arguing with each other (and anyone who will listen) about how he should be cared for. While we know basically how he should be cared for because the care plans are written out, there are always gray areas. You can't cover everything in a book when you are working with humans. When the staff argue about this and many other situations not covered in "the book", little gets accomplished except for inconsistent care. The individual staff members have a hard time seeing that all the staff have this man's best interest at heart. The arguments get heated because everyone thinks that their way is truly the best and only way.

In the second situation, another person is also sick - an older woman with dementia and profound intellectual disability. Since recent medication reductions, she has been purposely hurting herself and yelling loudly. If she re-starts those psychoactive medications, she will be lethargic and unresponsive most of the day, sleeping through meals and activities that are important to her. If she doesn't re-start at least some of the medications, she will continue to be truly distressed most of her waking hours. Staff, clinicians, and medical personnel understandably debate the merits of either approach, at times with anger and frustration, because we haven't found that happy medium between agitation and sleeping for her. It's a quality of life issue. 

We feel frustrated in these and other situations because the people we care about are hurting and we feel powerless to provide them what they seem to need. While we are waiting for the answers that may never come, we need to be as good to that individual as we can, and we need to be easy on each other. When the individuals we care about are hurting, the people around them hurt, too. Anger in these situations could be effectively replaced with understanding. Instead of anger toward your fellow team member, understand that that person also only wants what is best for that person, and start from there in working together to meet their needs.

Sweet Potato

Years ago, an older lady with mild intellectual disability living in one of the group homes started to have a difficult time getting out of bed. We thought she was in pain but she didn't tell us that. Maybe she was tired and didn't want to get up on our schedule. Maybe she didn't want to go to her day program anymore. We really didn't know and she did not tell us. We tried a few different approaches to help her since it really would not have been good for her to stay in bed all day. Nothing worked without a fight until one staffer found that if you called her "Sweet Potato" and talked to her in an overly sing-songy tone, she could be enticed out of bed.

We normally don't take this approach. It can be demeaning, infantilizing, and condescending to talk to adults with disabilities as if they are children. But it worked without an argument and without having to use physical prompts. So what should we have done? Well, she definitely seemed to feel loved, nurtured, and cared for with our new approach. If we didn't use the 'Sweet Potato' approach, we would have had on-going power struggles or had to use even worse approaches. Since we didn't know exactly why she wouldn't get out of bed, maybe her underlying need was that she wanted more love and affection and nurturing.

When I said that we normally don't take this approach, I meant most of us who work with individuals with developmental disabilities. However, there are numerous staff who choose to override this standard and go renegade. They are automatically armed with 'honey', pats on the head, and hand-holding. The majority of time, this is not because people said they wanted to be treated like children but because staff and members of society think of them as children.

There are so many people we support that enjoy us treating them like children. What if that is their preferred way of making a connection?

What's the harm if we take the 'Sweet Potato' approach automatically when it is not warranted or asked for? Well, we might be inadvertently reinforcing individuals with intellectual disabilities to enjoy being treated like children and then they will act like children. In other cases, some may become angry with being infantilized yet be unable to express this in words.

I can think of a few things we could do. We could have conversations with the adults we are working with and explain why we don't call them by gooey nicknames and pat them on the head and give them a smiley sticker for good behavior. (I know someone right now in his 30's that jumps up and down for a star if he comes out of the bathroom within a half hour.) We can reinforce adult behavior on their part with adult behavior on our part. We can educate and encourage families to engage in developmentally-appropriate conversations and behaviors with their maturing young person so that the coming generation of people with disabilities will enjoy being treated as adults more than as children. And we can find other ways to express affection and nurturing in our relationships with adults with disabilities and meet their needs much as we do with each other.

If the lady who wanted to stay in bed felt sufficiently admired and loved, perhaps we wouldn't have had to take the 'Sweet Potato' approach to motivate her out of bed. It is not the worst thing we could have done but it was not completely benign, either.

Only Connect

As in Howards End by E.M. Forster, we must connect with others in order to really understand and be of any help to them. In the book, the lack of connection with self and others creates division and apathy regarding class and gender. In our work with people with intellectual disabilities, the lack of connection between us (staff and individual, staff and staff, supervisor and staff) creates misunderstandings and ineffectiveness.

We tend to take a clinical and scientific approach to helping people with disabilities when what is really needed is a relationship.  When the individual truly likes and trusts the staff and the staff in turn truly likes the individual they are supporting, the individual is motivated to learn, grow, communicate, and collaborate.

A man with profound intellectual disability at one of the group homes historically has had an extremely difficult time with medical procedures of any kind. Many times, depending on his mood, we can't bring him into the doctor's office and the doctor will come out to the vehicle. If we do bring him into the office, he might yell loudly the whole time, rummaging through the cupboards, restlessly pacing, then having us hold him down to complete the exam or procedure. Sometimes we give him a sedative before the procedure, which mostly does not prove effective. When he gets his toenails cut, the podiatrist comes to his house and we have to place him in a hold called three-person supine control until his nails are cut. We have tried many behavioral techniques and desensitization plans to help him to not have so much anxiety on appointments, mostly ineffective.

Over the past couple years, he has established a close relationship with a particular staffer. In between the tasks of daily living and chores, they also do many fun things together and the staffer goes out of his way to spend time with this fellow, not demanding anything of him except that they hang out, laugh, watch television together, play basketball. The staffer has worked with him several times a week, filing all his nails. We don't have to hold him down in these cases. He just sits on a chair with his feet up, no anxiety, smile on his face as the trusted staffer files and cuts his nails.

To connect, we have to go out of our way to really get to know the people we work with and for. When it seems like all the work is done at the group home or day program, that's another opportunity to find someone to make a connection with. Making connections is also the primary reason we provide opportunities to spend time in the community. We hope that the individuals will establish relationships with people not paid to be with them. We hope that they will find that they are important to someone and that someone benefits from their company.

Herb Lovett wrote, "Real behavior change comes from a relationship; the more serious the need for change, the more serious this relationship needs to be."

A Change of Heart and Mind

Tom Pomerantz came again to our agency to bring us some more of his ideas in how to support people with intellectual disabilities. At the same time, I am reading a book along the same lines - Learning to Listen: Positive Approaches and People with Difficult Behavior by Herbert Lovett. Both authors argue very effectively that we are looking at people with disabilities with a worldview that is incorrect. We think of them as children, incapable, and challenging when we should be thinking of them as people like the rest of us. And if they exhibit a behavior that is troublesome to themselves and others, it is not because they have a disability, it is because of the pervasiveness of how we treat them and further because of unmet needs based on the type of life they lead.

I wrote in Game-Changer  http://www.blogger.com/blogger.g?blogID=4082941367652166326#editor/target=post;postID=3355530986177311286 that we have to start supporting people completely differently than we historically have. First, though, we have to change our view of people with intellectual disabilities.

Through the years, I have been taught that individuals with intellectual disabilities act out because of their particular deficits. The new way of looking at things is that they act out because the system they are served in is flawed and they don't have opportunities to live the life the rest of us do. They are deficient in being offered a high quality life, not deficient in cognition and communication, and behavior control.

I have been taught for over 20 years that people with intellectual disabilities exhibit problematic behaviors (the new term is "interfering" behaviors, per Tom) for four broad reasons after you have considered whether a medical issue is going on. Attention, Escape, Tangible, and Sensory. We have never changed that theory in all these years, even though it is demeaning to think of people with disabilities as somehow different from others. When they cry, often we think that they might be 'attention-seeking' whereas when I cry, I might just need to talk to a friend.

The new view has us stopping to ask the question, "What is their unmet need right now and how can I help them meet it?" And to stop asking, "How can I get them to stop misbehaving?" This is a huge difference in how we have been supporting people with intellectual disabilities.

Here's an example of how the new view might work. Say you have ten adults with varying degrees of intellectual disabilities in a classroom setting for their day program. This is fairly common that we provide habilitation services in a group setting much like a school. Let's say one of those adults has a difficult time sitting in their chair all day, or is not interested in the activities planned for that day, or is overwhelmed by loud noises, or is thirsty but does not have the skills to express it. How he decides to meet his need is to get up and walk out of the room, looking for relief from his distress.  We would then determine that he is exhibiting escape behavior and come up with a plan to help him stay in his room. The plan might involve earning a certificate, offering a glass of water, escorting to an area away from others in order to relax, teaching him to ask to leave the room by some sign or gesture instead of just walking out, asking him to sit down before talking with him, and so on.

Instead of asking, "How can we keep him in the room?" we will now ask, "What does he need?" On the surface, the new question seems easy but this is where we actually have to make some tough, honest decisions. He doesn't just need a drink of water and a break from the noise. It goes deeper. The new questions are: Does he need to go to a small room every day for the rest of his life to learn skills? Does he need to stay in that room for 6 hours everyday and be expected to display quiet, conforming, compliant behavior? Does he have a need for a coffee break and cookie  like the rest of do when our energy lags in the middle of the morning or afternoon? Does he need to feel productive, making a contribution to his world? Does he need to have more status in his life?

Could any of us adults spend our day in a classroom setting being told what we are going to learn and do? Could we cope with loud, unpredictable noise and crowding day-after-day for 40 years without being able to find a new career if we wanted? Could we deal with other people (staff) around us drinking soda, coffee, eating fast food while we are told we can't because it's not a healthy choice?

While the individuals at our day program and group homes are treated very well and have wonderful opportunities, it is still not enough because it wouldn't be enough for you or me. Now that we realize this, we can do better. 

You Can't Handle the Truth

I heard on a radio show the other day that the vast majority of people do not want to hear the truth. They only want to hear the things that support their beliefs. I recognize that I resemble that remark. Much as I like to be challenged, I tend to look for and enjoy finding writings that validate my own beliefs and people who agree with me.

A significant hot button topic for me is the use of rewards when working with people with cognitive disabilities. Rewards I have seen used are soda, coffee, stars, certificates, pencils, special outings,  and the most ubiquitous one - praise.  The way I observe rewards being used seems manipulative and controlling. A common example is giving out rewards for things you want someone else to do. What about what they want to do? If they wanted to do it, they would find intrinsic reward in the activity so no extrinsic reward from staff or parents would be necessary.

Another thing staff do is to give out rewards too frequently and for insignificant tasks, thereby weakening the value of the reward over time for that person, assuming they did enjoy the reward to begin with. We use verbal praise as a reward in this way. We say, "Good job" for the most mundane tasks. If they put their lunch away - "good job." Greet with handshake- "good job." Dishes to sink with less than three prompts - "good job." Flush the toilet - "good job."

Something that most bothers me about rewards is that when I have seen them used, the person loses interest in the activity and gains interest primarily in the reward. If a person is encouraged to read more and gets rewarded by pizza (a real incentive used for kids through a famous pizza chain), the person doesn't read because they love to read anymore. They read because they want to earn pizza. They then lose interest in reading and the reward had the opposite effect in the long-term.

There are many other reasons I really dislike using rewards in my work. They make anxious people more anxious as now they are worried if they are going to earn their reward. They are used despite the person's protests that they don't want to learn or do what the staff want them to. If they are used to improve behavior, rewards don't target the reason why the person is not doing something or doing something. Rewards promote competition in others around them who might not be earning their rewards successfully. They don't teach people to be proud of their own accomplishments because once the rewards are used, people become conditioned to look for the approval of others in the form of rewards.You have to take an item away to make it rewarding. So, you can't let a person have soda  if you are trying to get them to do something for soda.


There is another side to this topic, though, and that is why you have to be very careful to seek the truth, not just what you want to hear. While I dislike rewards in the way they are implemented, I have seen them be effective at improving someone's life when nothing else was working. Someone might be rewarded with a trip to the store and the purchase of a new dress for losing 20 lbs. Rewards often provide motivation to get someone over a hump in their life. One of the people with intellectual disability whom I know has great anxiety over having medical and dental treatments. This is very common, actually. We tried giving him sedating medications, using desensitization techniques, and holding him down. Nothing worked until a behavior specialist brought out chocolate on one appointment. That seems the most benign of all the techniques we tried with him and it provided him the incentive he needed to be successful. He sat quietly for his entire exam.  Rewards can also provide motivation for someone who is not intrinsically motivated to be able to learn a new skill.

And I am embarrassed to say that as much as I protest their use, I have used rewards with my own daughter and successfully. Once, a while back when she was in her early 20's, she was on three psychotropic medications for outbursts and anxiety. As time went on and the medicines weren't working, higher doses were added. Eventually, the medications that she was using to combat anxiety were causing abject anxiety in her. She became afraid of noises and the anticipation that a noise might occur. She got very afraid at night listening to all the noises outside her window. She was so afraid, that in the middle of the night, she started making a bed for herself at the foot of our bed. She would bring her blankets and pillow and sleep on the wooden floor and we would find her there in the morning. This evolved into refusals to sleep alone and sleeping in our bedroom every night. We tried many things to get her to sleep in her own bed such as making a soothing nighttime ritual, staying in her bedroom until she was asleep, nightlights, bedtime stories. Nothing worked until I put a shaping plan in place where she would earn small rewards each day like DVD's, then weekly awards of going out to dinner at fast food places, then a final reward once she was back in her bed of going out to her restaurant of choice. It took about one month to get her back in bed, moving her pile of blankets and pillows inch-by-inch from our bedroom each night until she was back in her own room. To this day, much as I rail against rewards, I am happy I used them and it was worth it in this case.

I guess that's my point. Rewards can be a good thing if used respectfully, carefully, and with a plan to fade their use out once the person has accomplished what they wanted.  So I have learned a valuable lesson. That I want to be conscious of seeking the truth, even if it goes against what I believe is true.

The Ball Bath

At one of the group homes we had what's called a ball bath. It is a huge bin on the floor that holds many small plastic balls. We had to get rid of it for various reasons but mostly because it was difficult to keep clean. Imagine disinfecting 500 balls after taking them out of the bin one-at-a-time then putting them back in on your overnight shift. I digress. The reason we had the ball bath was for one of the individuals with profound intellectual disability to play in. She loved the sensory experience of running her hands through the balls for hours. Some people are very happy to have that ball bath gone. It seemed meant for children and only adults live in the home. On the other hand, some people are upset because this young woman really enjoyed this activity. They believe that it is her preferred activity and she should have access to the things she loves.

This is how I see it...yes, she loved it. But we offered her very few activities that provided the same type of stimulation for her yet were adult activities. If she loves to run her hands through things, she might love running her hands through soapy water to wash dishes. Or run her hands through sand at the beach. Maybe she could start a collection of something and manipulate those items - much like the rest of us have collections we tinker with. A staffer at the home recognized her need and has started having her work in the flower gardens scattered around the home. Perfect! She runs her hands through the dirt, digs with the trowel, and pulls out the weeds. We give up too easily looking for adult activities thinking the individuals are like children when they really are not at all.

We, as a society and as people who work with folks with disabilities, are under the impression that if a person's I.Q. is comparatively that of a 3-year-old, that they need and prefer child-like things. But as one of my mentors explained to me last week, that's not how that works. Assessments that compare individuals with intellectual disabilities with the norm, are meant as a tool to determine their current skill-level, not to determine that they have the mind of a child. A person who has the reading skills of an average 7-year-old doesn't mean they are 7-years-old mentally and need everything in their lives geared to 7-year-old preferences. Not at all. The adults I work with (and live with) have a range of skills. But they are still adults and should be offered adult activities and adult respect.

Justification for Why We Don't

We had a consultant, Tom Pomerantz, come to inspire us with some fresh ideas in working with people with intellectual disabilities. You can visit his website for some of his ideas. http://www.universallifestiles.com/Universal_Enhancement.html.

Pomerantz's main objective is to increase the quality of life for people with disabilities. He made a particularly salient point : The reason we don't do things is the exact reason why we should. He cited that the majority of people with cognitive disabilities have never cracked an egg, never unlocked their own door (or any door), never pumped gas. And he said the excuses given are that they don't have the skill or dexterity to be able to accomplish these tasks. And that's the reason why they should do them - so that they can build the dexterity and skills.

When Pomerantz visited a group home, he asked a staffer why the person in the wheelchair couldn't do their own laundry as the individual watched the staffer bring the laundry basket to the bedroom and commence to fold their clothes for them. The answer given was that the person had contractures and could not physically do it. They likely had a physical or occupational goal, though, and that goal of reaching and stretching could be achieved by carrying and folding laundry. The reason they didn't let the individual fold their own clothes is the exact reason they should let them fold their own clothes. I had never thought of it that way.

It takes longer to have the individuals do the work when there is so much to do and you are on a time schedule. And it takes great patience to resist taking over so that it can be done faster. It is their life, though, and they should have the opportunity to be involved in every moment of it.

Game-Changer

It doesn't seem like watching a baseball movie would provide inspiration for best practices in the field of developmental disabilities, yet the premise of the film Moneyball does just that. In the film, the manager of the Oakland A's rethinks the way baseball does business. By not doing what has always been done (throw money at the team), he was able to lead an underdog to (almost) victory.

In our work with people with disabilities, we need to change the way we do things. Admittedly, we are doing better than we did years ago. Examples come to mind of trying to exorcise the demons out of them, performing frontal lobotomies, warehousing them in institutions, forced sterilization. Things are great for people with cognitive disabilities these days, comparatively-speaking.  They have very nutritious, abundant food based on their preferences. They have really nice, individualized bedrooms with fresh, clean linens. They have opportunities to spend their own monthly allowances on things they like. They own things. They are offered meaningful activities during the day.

Yet, the people themselves don't always agree that they have a high quality of life. Perhaps the game-changer is to ask what they think a great life would be for them. Maybe it would look different than the typical middle-class life they are leading. Another game-changer might be to look only at their abilities and not primarily their disabilities. Yet another game-changer could be to put all humans on a continuum of disability (or ability). We could consider all of us as having had a disability or likely to be disabled at some point in our lives and treat all people the way we will want to be treated when we are disabled. As it is, we divide people into only two groups - those with disabilities and those without. And those with disabilities are often thought of as inferior to people without.

The reason we need to pursue a game-changer in the field of disabilities is because they are not equal to everyone else. And because of this, they don't feel heard, understood, or respected. Despite their outwardly good life, they do not feel included. The game-changer (whatever it is) would assure a full life in society for everyone.

Free Will

I just finished my second reading of His Dark Materials by Philip Pullman. As is my usual, I got some things out of it that could apply to my work with people with intellectual disabilities. Or at least, things to think about.

In this story, Pullman says that children do not have free will but adults do. That's part of coming-of-age. Young people in our society and any society find that as they mature, they are given more freedom to make their own choices. Where does that leave adults with cognitive impairments? It is my observation that it leaves them frustrated. They want to have free will that all other adults have but they recognize that they do not have it. By free will, I mean that a person can direct their life in whatever way they want. One dictionary definition of free will is the ability to make a choice without coercion or external influence. Very often, I believe we influence and suggest what we think the right choices are for them, though.

The people I work with certainly have choices. Many choices. We give them choices all through their day. I think of these as 'guided' choices. They can choose between toast or bagel for breakfast. They can choose between the red shirt and the blue shirt. (Sometimes we hold up two shirts for them to pick from instead of having them look through their closet to choose their outfit, as that is how the goal is written).  They can choose to go to the beach or stay home. True free will would let them say, "I would like to make eggs for breakfast instead of the toast and cereal on the menu." Just as I might choose. True free will would let them say, "I don't want to go to the beach or stay home. I want to go to the movies." Just as I would.

Those are perfect-world scenarios, though. We agencies are not yet designed to accommodate true free will.  We do not have enough staff, enough vans, enough money, enough time to allow everyone who lives in a group-home setting or attends a day-program to make those meaningful choices. It's not a terrible thing to learn to cooperate, take turns, and share with others. It is just another way in which they must live differently than I do, thereby not being considered equal.

What If Society Changed Instead?

We staff and other helpers are in the business of getting people with developmental disabilities to change. We do this by teaching social norms. We teach individuals how not to approach or talk to strangers. We teach them not to talk to themselves aloud when they are in public places. We teach them to be less affectionate or at least to display socially-acceptable affection. We also teach them who they can be affectionate with. We teach them to make eye contact with us even though this overwhelms many of them - especially autistic people.

We offer help/guidance/suggestions when it wasn't asked for. I often wonder if it makes them feel badly for their natural instincts of friendliness toward fellow humans. Do we squash it out of them?

So my question is...what if society changed instead of them? What if they could trust strangers enough that they could approach anyone and strike up a conversation with them? What if they could hug everyone they meet, as some of them are inclined? What if we just accepted that some people talk to themselves out loud for whatever the reason and we wouldn't have to think they were abnormal?

All of this would require a re-imagining of society. What would the world look like if we were the trainees and individuals with cognitive disabilities were the trainers? We'd all learn social skills of how to be friendlier and not so reserved. We'd all get up and dance at every dance. They would teach us how to hug in greeting and they would let us know we were doing a good job if we learned that skill.

I learn something from the people I work with everyday. They greet others better and they strike up conversations easier than I do. I have learned to make intimate connections better because of their influence. I have learned to be kinder. They love me and I have learned to love better because of it. Sadly, I have to teach them not to sing and dance with me, not to tell me they love me, not to hold my hand or give me too many hugs (and only from the side), not to touch my arm or shoulder. I think they've got the right idea with their expressions of affection and I feel a bit remorseful when I have to teach against their impulses. And the only reason I am teaching this is because the reserved stance is our social norm.

At this point, I am not saying we need to stop teaching.  By teaching what is expected of adults in our society, I am showing them the dignity that I recognize they are not children, anymore. By teaching them that the world is not safe and they can't just touch others or talk to strangers, I am setting them up for success and acceptance in today's society. All I am asking is that we just imagine what the world would look like if we were even a little more forthcoming with our affectionate regard toward others. 

Wheels

Last night at one of the group homes, a lady was very angry that she couldn't go out to the garage sale down her street. It was very difficult to help ease her disappointment. We tried validating her feelings, assured her that she could go tomorrow, came up with something fun for her to do at home (bake cupcakes or make a necklace) and reminded her that we take her out every weekend to do what she wants to do and had her recite all of the fun things she did last weekend. Our positive approaches toward helping her in her emotional moment did not help.

There is a reality that sometimes the individuals can't get out and do what they want exactly when they want. There is not enough staff to accommodate all requests. Almost all requests can be met eventually, just not on the spur of the moment. We often need to plan. We have to take turns, assure for staffing of home and the community outing, have to have a van available, and have to have money and bring their medications and necessary equipment.

The reason P was angry was likely because she knows that I can go out whenever I want and she can't. I can go out to a garage sale on the spur of the moment. Most of us in society can. We have wheels and know how to drive. We don't need someone to supervise us to make sure we are safe so we have a sense of freedom that P doesn't have but wants to have. I take my right to come and go as I please for granted most of the time.

When we work with a group of people, we get ourselves in a mindset of how to manage the group rather than how to meet individualized needs. Really, we should be trying to figure out how we can stop thinking of them as a group of people. Yes, they are a group, and we do have methods for helping us all get along together, but we should strive to treat them as individuals, too. Especially since our own society is so individual-oriented. We all fight for our individual rights here. I suppose we should fight for their individual rights, too, and support their fights for their own individual rights.

A while back, one of the heads of the U.S. Department of Transportation believed that all people should have the right to come and go as they please. He believed that society has an obligation to provide transportation to all, no matter what the disability, and that it needs to be efficient, accessible, safe, and affordable.


If he got his way, instead of waking up and wondering what was on the recreation calendar, a person with a disability would decide what they want to do and transportation and staffing would be provided. Instead of taking turns, they would be able to do what they wanted when they want. Just as I can.

All right, then. So last night, we probably could have accommodated P's request. We had at least 90 minutes before her housemates were due to leave for the evening event - the county fair.  The garage sale was down the street. One staff could have brought her and the whole outing would have taken 20 minutes, tops. It took us at least that long, probably longer, to calm her down. But our mindset was stuck on arbitrary rules that we set. We decided that there is one outing a night, it was someone else's turn to go out, it was almost dinner time and we all eat together, and that she should be happy that she goes out as often as she does.

Should we be trying to adjust our own thinking to help them make their lives as close to ours as possible? Or, at the very least, as close to what they want their lives to be?

Owning Another Person

The other day I heard someone talking about the people with intellectual disabilities he works with. In love and admiration, with no intention except one of caring and compassion, he said things like, "my guys", "my fellas", and "our people", or "our population." It makes it sound like he owns the individuals even though I'm sure he just meant that they are the people he specifically works with and cares about.

On shifts when I am working, I often hear statements by staff such as: "I've got Thelma tonight," or,  "Who's got Louise?" Worse, "Who's watching Brad?", "I'm on Jen", or "I've got Angelina-watch tonight." These statements make it sound like people are objects.

Along the same lines, some staff get possessive of the individuals, especially if they are given the role of advocate. The staff might get offended if other staff take the individual they are assigned to be advocate for out to dinner, help them to get their haircut, or help them to purchase clothes. Staff also possess the individuals by clinging to their accomplishments and failures. If the individuals don't reach their goal or successfully complete their task, staff think it is their fault -  that they didn't motivate them enough. Conversely, I often hear staff say, "I got them to take out the trash this morning." It's not about us. The success and setbacks belong to that person, not staff.

Things like that grate on me a bit. Although no harm is meant, staff are not considering the underlying message of what they say and do. This is just about awareness and we are all at different places with this.  I suppose we have to have more discussion on these things. And I continue to remember to check myself because I make mistakes like this all the time, too. These errors that many of us make betray our unconscious attitudes toward the individuals with cognitive impairments. We still think of them as incapable, helpless, unequal.

In the meantime, what might be better to say is: The people I work with. The men I work with. I'm supporting Thelma tonight. Who will be supporting Louise tonight? I'm going to be working with Jen today. Brad took the trash out this morning.

Language and actions matter.  We should certainly not use terms or behave in ways that denote possession of another or that signify attitudes of incapability.

Help Wanted

A few days ago, a young father walked into one of our main offices looking for services. His twelve-year-old son is autistic, has an intellectual disability, and is physically aggressive. He goes to school but they were looking for help in their home setting. They are having a difficult time helping him to  manage his anxiety and aggressive behaviors and they just need a break. They have had some help in their home but it has been ineffective. The staff that are sent to their home are different each time and therefore haven't been able to establish a strong, lasting relationship with their son. They only have help for short periods, not enough to be able to plan for anything more than a date with the grocery store. One of my friends who is one of these staffers says the parents are often waiting at the door with keys in hand, so they can get every minute of that needed respite from caring for their son or daughter.

When community members think of people with intellectual disabilities, they have an image in their heads of friendly, happy, talkative people, possibly with Down syndrome. That's the pictures they have been presented with in the media and movies. But there is a truth out there that most people are unaware of. Many people with developmental disabilities present challenges to our ability to support them successfully.  And many parents are not receiving the supports they need.

There are parents who get very little sleep because their child exhibits self-injurious behavior so they can't take their eyes off of her, ever. Self-injurious behavior (SIB) can involve banging their head against hard objects, scratching themselves, putting sharp objects inside themselves, biting themselves, hitting their ears so hard and so often that it looks like a cauliflower. There are unlimited ways a person can hurt themselves if they want. Each person is different and each one exhibits SIB for different reasons so it is hard to help them to stop.

There are parents who spend their day spoon-feeding, changing, lifting their adult son or daughter from wheelchair to chair or bed. There are parents who have no time to themselves because their son or daughter can't initiate activities themselves so they look to their parents to engage with them constantly. Many parents have had to stop working to be able to care for their adult son or daughter because day services are only part-time. There are parents who are being hurt by their adult son or daughter with intellectual disabilities because the individual is frustrated, has a mental illness diagnosis, and the parents don't have the knowledge of how to safely support him or her. There are parents who must keep an eye on their individual 24 hours a day because they engage in pica behavior - the compulsion to ingest inedible objects. This is a potentially life-threatening behavior as the items can either be poisonous or get stuck in the intestines. And many parents do this alone because statistically, families with individuals who have disabilities are likely to be divorced.

All this is happening with no new group home building in sight because it is too costly. The new initiative is to have the individuals live in their family homes and to provide the supports they need there. First of all, the supports aren't really there for the families. They might be able to get a couple hours of paraprofessional services - residential habilitation is what this is called - but only if they can say their need is urgent or an emergency. Additionally, this is going to lead to isolation for both the individual and their family, when we are supposed to be going for full community inclusion. Staying at home is going to hinder the individual's growth as they can't move out on their own as all the other adults in the community do.

I know not everyone in the community cares about this topic but I think we should be trying to do whatever we can as a society to make sure everyone has the ability to pursue their happiness, for whatever this means to that person. We are in a political climate right now where some think that we should all be responsible for ourselves and not expect help from anyone. Those people who think that way do not have full knowledge of how many people truly need help and for reasons that are not their fault. 

One Step Back

The other day, two ladies who live at one of the group homes got into an argument. They were crowded in the kitchen, both in wheelchairs, both trying to move in the same direction to get their coffee and snack. They were hungry and collided in their efforts to get their goodies. One raised her fist and yelled; the other yelled and then cried. Three staffers, who were very close by, swooped in quickly to help them. That's what we are supposed to do. But what if we took a step back, first, to see if they could work it out among themselves? What if we gave them the dignity to argue it out rather than to so quickly solve it for them?

We so love to care for people. Actually, that's mostly why we staff do what we do for a living. We want to help. And it is so hard for us to realize that the best way to help is to step back and let them live their lives.

When the doorbell to their home rings, we need to step back, or at least not go forward. They should answer their own door. If they are unsafe because of the potential for a stranger to take advantage, we can go along with them, but a step back. Let them say hello; let them interact with the person at the door.

When you are at the fast food counter, take a step back so the cashier will interact with them and not primarily you, the staffer. Let them do as much of the transaction as they can - ideally, the whole thing. If they don't know how yet, start teaching them.


Every time we immediately help them with the things they need to experience and even struggle with, we create dependence when our main objective should be to foster independence. Every time we take over in their life, we take an opportunity away - the opportunity to grow, to learn, to connect, to experience, to have power over their own life.

The downside to our stepping back is that, while it has the potential to be rewarding since the person will surely grow, it will make our jobs a little boring. When you step back, you are being calm, quiet, unassuming, observant. If you like action and busyness, this can be hard. But you need to do it, anyway. It's time for them to have the action in their lives.

Book Review: Curious?

In Curious? Discover the Missing Ingredient to a Fulfilling Life by Todd Kashdan, the author argues that the pursuit of happiness involves living a meaningful and fulfilling life and to do that, we must always be curious.

Curiosity is about asking questions constantly. It's about being open to the fact that everything you think is right might be wrong. It's about seeking novel experiences and not getting trapped in routine. We are on fire when faced with new experiences and are dulled when when we live the mundane day after day.

You have all heard the sayings, "You are what you eat." "You are what you read." "You are what you think." "You are what you own." Well, social psychologist Sylvan Tomkins said, "I am, above all, what excites me." We grow as humans by being curious enough to find what excites us. We can do this inwardly by getting to know ourselves. We can do this by seeking out intimate connections with others. And we can do this by asking questions about the world around us and involving ourselves in new pursuits. 

What does this have to do with people who have intellectual disabilities? Well, are they introduced to new experiences and people each day or are they faced with the same routine as the day before?  As staff who support them to achieve the things they want in life, are we observing and listening to what excites them and then helping them to explore, or are we trying to have them conform to what is easiest to manage?

No doubt, we all find solace in structure and daily routine. But in between the activities that bring us comfort, we will be happiest by exploring.

As always, what's good for any human is good for all humans, disabilities or not.

Equality Simplified

Last week, I read in one of the behavior notes that a young lady with Down syndrome exhibited a behavior known as 'food-taking." Some of the people I work with do take food that does not belong to them - maybe off of someone else's plate, or off the floor if it fell, or right out of a hot pot. Most of the time, this stems from having had to live with others in the past, such as in an institution, where they had to take in order to have enough because someone else had already taken it from them.

In this case, though, L took two fudgsicles out of the freezer and ate them in her bedroom. The only reason anyone even knows that she did this is because she left some evidence behind.

Last night, I grabbed a coconut bar out of my freezer. It was really good so I ate another one. If I lived in a group home like L does, I might have to ask permission or let someone know I was going to get a snack. If I didn't, someone might write it up then come up with a plan as to how they were going to keep me from freely taking snacks, as I might gain weight.

A simple way to consider whether people with intellectual disabilities are equal to others is to ask whether how they are being treated is similar to how others are treated. Or to ask if you were in the same position (roles reversed) would the expectation being placed on you be acceptable to you?

Here's a better one: What would President Obama do? You do not have to be a fan of Obama's to understand that he holds a lot of status. In order to be treated equally, individuals could be held to the same expectations regarding personal decisions as our president.

So, this is another scenario from last week: a young man wanted to wear long pants to work on a hot day. Staff encouraged him to change into shorts. When the man disagreed, staff pretty much insisted that shorts would be the best choice. Using the above as a tool to assess whether what he wanted was an acceptable option, was his decision to wear long pants reasonable? Well, I wore long pants that same day.  Most men in a professional job who went to work on that hot day wore long pants. So I think he made a better choice to want to wear long pants than the staff who thought he should wear shorts to work. All things being equal.

What would President Obama do? He'd get two fudgsicles out of his freezer if he had that particular craving. And he would wear long pants to work most days, no matter how hot it was out.

 Let's try some other situations.

Is it reasonable to think that Obama would stay up late to watch a television show and if so, would  his staff suggest he go to bed earlier because he had a big day ahead of him? Probably not. If the White House menu tonight called for chicken and rice but the President wanted a chicken sandwich instead, could he have it? Yep.

Well, I'm just messing around because my Obama tool wouldn't work in all situations. No assessment tool would. I'm just trying to get us all to think about the things we (with good intention) impose upon people with intellectual disabilities. We do try to instruct but I hope that we are also listening to and respecting their unique preferences and not getting into power struggles over small issues.

What Parents with Adult Autistic Children Do On a Friday Night

While the world was partying last night because it was Friday, S wanted to celebrate in her own way. When you live with an autistic person, your schedule is often different than the typical.

The first point of celebrating the end of the week for her was macaroni and cheese for dinner. She would eat this everyday of her life if she could but accepts that we have to eat other things, too. After dinner, she wanted to go to watch roller coasters. She is officially enamored with the Superman roller coaster at Darien Lake but since it costs a fortune to get into the park to see it, she said she wanted to see the Jack Rabbit at Seabreeze Park. We drove along the perimeter of the park to see all the rides. I told her we could not spend money to go into the park every day (we just went three days ago) so she was happy to look at the rides from the outside. She won't actually get on any type of ride that moves (and they all move, of course), so all we ever do is watch.

There is something in her brain that loves wheels. She loves the way they look and the way they sound. She could watch and listen to wheels forever. When she was young, we had to stop whenever there was a wheelchair van or bus in sight. She would watch the wheelchair lift go up and down and watch people in wheelchairs roll off the van. This made her day. Fast forward to today and it is roller coasters that now rock her world.

We sat in the parking lot of Seabreeze for the next hour watching the Jack Rabbit whiz past us over and over. S briskly paced up and down the length of the coaster, happily flapping her arms. Some people see the arm-flapping as a warning sign of agitation, but I see it as an overspill of emotions. She is physically displaying deep feelings when she does this - good or bad. I video-taped the roller coaster and she watched it repeatedly all the way home.

We finished our night with S watching more roller coasters on YouTube then we watched a movie together. Last night - Dennis the Menace. We watch part of a movie every night. It's part of her ritual. She measures her day through predictable rituals.

And that was our Friday night.

Green Therapy

I read an article on green therapy the other day. After reading it, I realized that I use green therapy all the time when I am working, I just didn't know it. We use lots of therapeutic approaches with individuals with cognitive disabilities - counseling, physical therapy, music therapy, massage, art therapy, occupational therapy. These are very helpful strategies toward meeting people's needs.

Basically, green therapy is about improving mental health and well-being by going outdoors. Easy to do and free as an added bonus. All it entails is stepping outside. 

I suppose I take it for granted, but green therapy is a necessary element in my own life. A change from indoors to outdoors always changes my state of mind. I have seen it be effective with the individuals I work with, too. The other day while I was at one of the group homes, one of the ladies who can't talk was very unhappy. She also can't sign or use photos to express herself. I spoke soothingly to her and tried to figure out what was wrong by process of elimination - drink? bathroom? reposition in her wheelchair? back rub? bored? discomfort? I couldn't figure it out and she continued to cry.  I brought her outdoors and she immediately stopped crying. I walked with her for a little while. Since she couldn't tell me what she wanted to do, I eventually stopped under a shady tree. The breeze was blowing so we could listen to the leaves gently rustle while the grass around us moved in waves. She remained quiet for the whole time and then for a good while afterward, even when we went back indoors.

My guess is that when she was crying and seemingly inconsolable, she wasn't trying to communicate that she wanted to go outdoors. But going outdoors helped her in whatever it was that was distressing her. It is a proven therapy that works for all of us if we let it. If you (or the person you are working with) are feeling blue, or anxious, or unsettled, nature is restorative and works almost immediately.

Life, Adapted

Many of us adapt our lives and our surroundings for success. Eyeglasses would be a good example. We use these as adaptive equipment in order to see better, if we were born with poor eyesight. We use wheelchairs, canes, and walkers to help us move from place to place if we can't walk well. We use thin rubber thingys to unscrew the tops of jars. These and other such things permit us to live a full and independent life.

We have lots of adaptive equipment and techniques for the people with intellectual and physical disabilities I work with. They use special utensils and dishes so they can eat independently. They use communication devices for people who can't talk but can push a button to say the words. They use various adaptations to their work supplies so they complete their work as independently as possible. The list goes on.

My daughter, S, does not have the need for adaptive equipment. She sees better than all of us and walks very well. Nevertheless, there are some things we adapt in order to meet her needs and help her live a happy, successful life. As a family we have also adapted our own lives to live harmoniously together.

This weekend, we were planning on going to Hershey Theme Park. S was really looking forward to it all week. In order to make adaptations for our trip, we asked for a hotel room away from the parking lot and preferably quiet because she gets scared of noises outdoors. We bought expensive tickets for the park but we never ride the rides. We only walk around the park because S is afraid of riding in most moving vehicles except for cars. The motion seems to bother her physically and makes her feel unsafe. She has a very strong interest in roller coasters but can't get too close to them because of the noise they make so we have to give a wide berth to many rides as we walk around. We also have to anticipate crowds and give her lots of downtime to decompress back in the hotel room if she is in crowds for long periods.

We do similar things in our daily lives to help S be successful, so our own lives get adapted, too. This is neither good nor bad, it just is.We don't go to movies because they are too loud and dark so we wait and buy a lot of dvd's. We have to listen to the same songs hundreds of times. Ditto with certain portions of movies that get played over and over. We do certain activities in small bits so as to desensitize S with the hope that she can enjoy them fully one day. We have to make dental appointments in the morning before breakfast so she won't vomit and then we have to promise she doesn't have to sit in the dental chair because it moves mechanically. The poor dental hygienist and dentist are very accommodating by letting her sit in a regular chair but I think their backs hurt afterwards. S watches the clock (actually watches television for the time) and knows what time the normal things in her life happen. If any of us are a few minutes off, she starts to get anxious, so we are either on time, or we become anxious. We have to take the stairs, never the escalator. It might seem dysfunctional to make all these adaptions in our family but it is functional for us.

We had to adapt our Hershey vacation when it was almost time to head out. S got very animated (picture Dustin Hoffman when he is about to board the airplane in 'Rainman') and announced insistently that she wasn't going because she was afraid. No logical arguments or cajoling could change her mind.

We went to Darien Lake Theme Park instead. And spent a huge amount of money just walking around because they don't have discounted tickets for people with disabilities or people who just want to stroll and not ride. It was successful, though, because now S says she is not scared and can go to Hershey next time.

You Can't Always Get What You Want

This week, there was the sweetest, kindest staff member who disagreed with a plan we have for someone to support them with limit-setting. She wanted the man (with moderate cognitive disability and also a mental illness diagnosis) to have what he wanted to make him happy. This is certainly a good way to be thinking and sounds easy and right on the surface.

Years ago, I was just like this staff member and learned the hard way that limits make people happier and give them a sense of security and self-control. The trick is to work with them to set or agree to the limits rather than just imposing what we think best.

I work with many individuals who want to have the things they want to excess. I have made my own mistakes when I have tried to give some of them exactly what they wanted. An example is a woman who asked for several cups of coffee each day. Her plan was to help her portion out her cups of coffee per a rigid, timed schedule, amounting to a cup of coffee about every two hours. In between her coffee times, she would ask for more coffee, sometimes yelling, and we were supposed to remind her that her next cup would be coming soon and then try to interest her in another activity until it was time. So I thought that maybe she wouldn't get so upset in between times if she could have coffee when she wanted. (It's decafe.) I also thought that if she could have it whenever she wanted, she would ultimately relax and not be so fixated on wanting it since she would have full control over the coffee in her life. That she would understand through having the opportunity, that there is such a thing as "enough." It ends up, of course, that I was absolutely wrong. Again.  Refer to My Own Mistakes.

What happened is that initially she was SO happy to have all the coffee she wanted. She made a thermos of it and could have it whenever she wanted. When she ran out, she asked for help to make more. Over a very short time, though, she grew very anxious and agitated. No, not because of caffeine, since it was decafe.  She was upset because she was now officially out of control. She lived for coffee, now, and only wanted more and more. She became aggressive and on-edge. There was never enough coffee. What ultimately provided a sense of relief for her? Going back to the original, reliable schedule. I've seen this happen over and over again. It might involve glasses of milk, candy, peanut butter, diet soda, shopping, clothes, dvd's, pencils, dolls. Depends on the person.

My own Achille's heel is super-sweet fruity candies - Mike-n-Ike's, Skittles, sour gummies, Swedish fish, and jelly beans. I'm old enough to know what these will do to me and to set my own limits. Nevertheless, if I buy them or they are around, I'll eat them. Then I will lose control and only stop eating them when they are either gone, I have a stomach ache, or I have proceeded into a sugar coma. The next day, I wake with a hangover. I am able to rationally set some limits for myself - I try very hard not to buy them or I wait until dark to eat them. Without my limits, I would be sick, cavity-prone, and overweight because I would eat them to the exclusion of everything else and do it all day long. The limits I set for candy and other things in my life me happier and more productive in the long run.

So while that well-meaning, kind staffer has the right idea in theory regarding dignified, positive approaches when working with people with intellectual disabilities, being nice is not always good. The truly kinder approach is to help someone to set healthy limits for themselves. Giving someone everything they ask for doesn't necessarily make them happy.

What You Get Away With

It is so funny all the things that individuals who live in group homes get caught doing. The other day, a young man with Down syndrome licked the rim of a barbecue sauce bottle so it wouldn't drip. The staff who were present talked to him about the fact that others live in the home and that it isn't sanitary to do that. And they threw the bottle away even though there was still some barbecue sauce left. All of that should have taken place, I suppose, but licking a bottle shared by others is a very minor event, comparatively-speaking. It's not a big deal and should definitely not been written up nor should it have been addressed as something negative to his parents (which it was).

The individuals really can't get away with anything. Because we are providing a certain level of supervision to assure for their safety, they don't have the same freedoms to try things out. What would it feel like to be watched by others who are likely to scrutinize your behavior all the time? Orwell's dystopian book 1984 comes to mind. (Remember the story of the government who maintains total control over humans?)

I don't want to admit to the things I get away with but I have licked a bottle of salad dressing from time to time for the same reason the other fellow did - it's easier, efficient, and faster than getting a paper towel to wipe it. My story is that I'm the only one who uses that dressing and I'm sticking to it.

Let's see, what else do we get away with when we think no one is looking?  Statistically, most of us don't wash our hands after using a public restroom unless someone else is in there with us. Some of us probably pick our noses. We drink from the milk carton. Some of us root through trash cans for treasures. The vast majority of people steal from their employers. We lie all the time. We embellish stories to make ourselves look better than we are. We look at pictures of naked people. Oh, and we double-dip like George Costanza. Human beings are funny things when we are in private, whether we have a disability or not.

When the individuals in group homes are caught doing these things, they are corrected if it is necessary. But we need to be sensitive to what we can get away with without censor of any kind while people with disabilities often do not have the same luxury.

And don't make too big a deal over something that is not a big deal.

You Don't Need to Feel Sorry For Them

I was raised to feel sorry for people with intellectual disabilities. It's not my parents who instilled this in me but society. Even as we grow as a society and individuals are treated with more respect than ever before, I still see much evidence that people with disabilities garner our pity today.

We don't have to feel sorry for them. I have known hundreds of people with developmental disabilities. No matter what they have experienced in their lives, I haven't heard any of them express any sentiment that they wish they were someone else or wished they didn't have a disability. As part of our identities, we usually accept ourselves for who we are and don't want to be anyone else.  So do people with disabilities. People with autism who write to tell of their experiences take great offense at the 'neurotypicals' who want to cure or prevent autism. They feel this invalidates who they truly are. They have no desire to be different, cured, or someone else.

Back to pity. A while back, I saw a staffer call one of the older individuals, "Honey." He patted her on the head and in a sing-songy tone said he would help her with her bag when she didn't ask for help. He had noticed she was having a hard time with finding what she was looking for. Later, I asked him why he called her honey and why he helped her when she could do it herself. He told me that he just calls everyone honey and that he didn't want her to struggle and get frustrated. I told him there is dignity in having the opportunity to do things on your own and that she didn't look frustrated. He said he felt sorry for her.

I think one of the reasons we feel sorry for people with intellectual disabilities (other than the fact that they are made fun of on a regular basis in movies and by unenlightened people), is that we would not want to be in their shoes. And one major reason we don't want to be them is because of how we treat them.

A good remedy for pity would be better treatment.

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.