Fixations and Obsessions

I read a book recently called Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love From His Extraordinary Son by Tom Fields-Meyers.

One part that stuck with me was the idea of obsessions. Ezra, who is autistic, had obsessions that fully involved his thoughts and behaviors. And just as quickly as they arrived, they would disappear and be replaced by a new obsession. First, it was dinosaurs, then animals, then the color red, then The Simpsons, then Snow White and the Seven Dwarfs.

I see this all the time in the people I work with and with my daughter, S. They have an intense interest that they want to talk about or do often to the exclusion of other activities.  I have a touch of this myself. I suppose we could all look at ourselves as on a spectrum of obsessions. Where do these obsessions or intense interests come from? I'm not sure. We like what we like for no explicable reason and sometimes we become entirely immersed. Some of us can control these fixations and some of us have a harder time of it. Sometimes our obsessions take control of us.

What Ezra's father did was rather than try to discourage Ezra from his obsessions - even though they caused him and others to be distressed at times - he supported and encouraged them. When Ezra went through a Gumby phase, his father looked online to try to purchase every available Gumby character and item. The author decided that Ezra's obsessions were an opportunity to build a bond with his son. This helped Ezra to see that another human cared about what he cared about.

What if we encouraged or supported people with intellectual disabilities in their obsession? Well, realistically, sometimes their fixations get them into a little trouble and they benefit from some help with limits. Sometimes the obsessions keep them from living any type of meaningful, social life. But in some cases, are there ways we could encourage their obsessions in a healthy manner? Maybe with support, their obsessions would become hobbies that would be fulfilling to them. Maybe we would make a stronger connection with them. If they need limits set, perhaps we could schedule some time in for their obsession rather than just saying no because it gets them into trouble.

I think it likely that if someone seemingly arbitrarily tried to control or stop my fixations, my obsession toward them would increase and therefore become more problematic.

S has fixations over people. This is a tough one because people should not be encouraged to look at other people as if they are objects, and S has done this since she was a small child. The first inclination of support staff years ago was to stop it by telling her no. Fixations don't easily stop by saying no. So then they tried to see if they could avoid the situations where she would see the objects of her obsessions. Fixations always find a way, though, and the intensity for her to seek these people out became stronger despite people trying to stop the behavior. So then someone suggested using her fixations over people as a learning opportunity as to what is socially-acceptable. Rather than stop her, they now teach her the acceptable limits of how we treat others. Rather than having her avoid the situations, she has now learned how to greet people, how to hang out with others in social settings, how to let them live their own lives, and how to accept that they have relationships with others. This is an imperfect process and S still has her difficult days because of her obsessions. Things are a bit better, though, since including her in the limit-setting.

Book Review: Following Ezra

Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love From His Extraordinary Son by Tom Fields-Meyer.

"As his father, what is my role? To run ahead of him and lead him in safe direction? To walk by his side, holding his hand? To try to pull him back to familiar territory? Long ago, I made my choice: to follow Ezra and to watch, in awe and mystery, as my son makes his own unique way in the world."

The main theme of this book is about acceptance. The author accepts his son Ezra for who he is without wanting to change him or without wanting him to be someone different. Ezra is autistic and his father celebrates who he is rather than grieving who Ezra might have been without autism. He watches Ezra find his own way while supporting him when he needs the guidance. He learned much by just observing Ezra as he interacted with the world.

What if we all did the same? What if we accepted people with developmental disabilities just as they are without trying to change them? Instead of primarily thinking we are going to teach them something, we would follow their lead and watch them grow on their own terms? Perhaps, as Ezra's father did, we would be open to learning something from them in the process. His father still provided guidance when he thought Ezra was stuck but he worked with Ezra to help him figure this out for himself. Because of this approach, Ezra feels smart and capable despite being autistic. He thinks of autism as a strength. And it is. I want everyone with intellectual and developmental disabilities to feel this way and to be thought of this way. Strong and capable.

The Language of Equality

The words we choose and use matter. I have found that we use different words for people with intellectual disabilities than we do regarding our own lives. This further sets us all up for relationships that are not equal. I understand why we use different words - the individuals are often involved in a medical system with its own jargon and professional terms. It would be better, though, not to think of them as people who are ill. A person is not necessarily ill just because they have a cognitive delay.

Back to words. When an individual needs to use the bathroom, we call it 'toileting'. When they go out to dinner, it's called an 'outing'. Meals are sometimes called 'feeding.' (Thankfully, not often.) When we want to help them find an activity they might like to do, it's called 'active treatment' or 'habilitation.' Snack is called 'refreshment.' Encouragement is called 'positive reinforcement.' When it is time to take pills, it's a 'med pass.' When staff come out of the office to work directly with individuals, this is often referred to by some as 'working on the floor.'

Then there are the labels. We have recently moved from 'mental retardation' to 'intellectual disability' as the acceptable diagnosis. The words 'mental retardation' did not become problematic until they became stigmatized. If people with intellectual disabilities were fully accepted as community members rather than denigrated throughout history, the words 'mental retardation' would not have turned into something negative. A particularly negative label currently used is 'consumer.' It was started with the best of intentions to replace the word 'participant' as I recall. By calling the individuals who receive services 'consumer', all we were saying is that they receive services. What it has meant historically, though, is that individuals with intellectual disabilities consumed resources without contributing something back to society.

In talking about and with people with disabilities, if we were to try to use the same words that we would use to describe our own lives, perhaps they would feel accepted and included rather than outsiders. Do the words we use create dependence? If we were less clinical in our terminology, maybe they would feel strong and capable rather than dependent.

Don't Give Up

Last night our family went to our grandson's talent show. He's six and it was too adorable to see a class of six-year-olds singing, dancing, and doing karate demonstrations. Usually for these events, I try to set S up with someone to stay with because she doesn't like crowded or loud events. I thought she might really enjoy this show so I didn't set up an alternative for her. When I picked her up from her after-work care, she realized we weren't going home, as is our usual routine. She likes everything to be the same each day, which is common for people on the autism spectrum. She quietly told me that she wanted to go home. I explained that we were going to the show, then home. When we arrived, she found a seat in the school cafeteria away from everyone else. Probably so she could make a clean get-away if she needed, having done that many times before. She appeared worried but was managing her emotions well.

The show started and the cafeteria got a little louder. There was music and clapping and I caught S watching and smiling. She got very excited over some of the songs she recognized and over the karate demonstrations. For the first time I can remember, we all got to stay for an entire event. The best part (other than the obvious enjoyment of watching my grandson make a volcano erupt with baking soda), was that on the way home, S said out-of-the-blue that she liked watching the kids sing.


I know S would really enjoy going to plays, musicals, ice shows, and movies but her inability to adjust to loud environments means that she misses out on events that often make life worth living. As an aside, it also means I miss out on these things, too. Her preference is to spend her leisure time in her bedroom watching television, playing a movie, playing a computer game, and watching YouTube videos of amusement park rides all at the same time. If I just gave up in helping to introduce her to other things she might like out in the world, she would spend all of the rest of her life in her bedroom.

Even though it takes a long time and has the risk of set-backs, it seems worth it to keep trying.

There are many people I work with who have plans cautioning over what events to not take them to because of their inability to manage their emotions and response to over-stimulation in these settings. These are good cautions but I say we should not give up if we think they might enjoy them. Introduce them in small doses in ways they feel safe. Do this repeatedly so they can get used to the events.  If you are sure they just don't prefer the event, certainly don't take them. (You could take me over and over to circuses or monster truck rallies and I might get used to them but would never prefer them).

S loves the story of Peter Pan. She owns every version of the play and films and has several books on Peter Pan. I can't wait to have more events to bring her to so that she can learn to adjust to them with the ultimate goal to someday take her to the Broadway version of Peter Pan. 

Age-Appropriate?

While we are supporting individuals with intellectual disabilities to live their lives, we make a conscious effort to direct them toward items and activities meant for adults. We try to keep the coloring books, stuffed animals, cartoons, toys, and childish room decor to a minimum. We discourage them from having anything that could be interpreted as child-like in the community. This is very important in that we hope to increase their status in their own communities. We don't want others to think that they are eternal children. This demeans them and is called infantilization. This attitude holds them back from growing.

My daughter, S, packed her items to go to respite yesterday. For those who don't know what respite is, it is a small group home setting that is run kind of like a hotel. With my help, S makes reservations and stays as a guest overnight on occasion. This gives me a break from her and she gets a break from me. I'm sure she needs the break from me, more. Anyway, S packed her stuffed dinosaur that she got for Christmas from a relative. She's 29 years old but she takes that dinosaur everywhere with her. She is on the autism spectrum and always takes some loved object with her as a transition item. This dinosaur is definitely meant for kids. So do I take it from her?

I think there is a balance to be struck. I think we need to be very careful how we make others feel about their choices. How do adults with disabilities feel when we tell them the choices they are making for themselves are not appropriate for adults? What if we tell them frequently? If I had everyone around me giving me unsolicited constructive criticism about my preferences on a regular basis, I imagine I'd start to feel pretty bad about myself. Perhaps I'd withdraw from others or get depressed.

Here's what I do with S and in my work with adults...I let them make their choices and I don't try to influence them. But I don't ever automatically offer or purchase or do an activity that is only meant for kids. So instead of a coloring book, I'll buy art supplies. If I go out with someone to buy a new bedspread, I show them the adult options. If I were to bring them to the children's dept., they'd buy one designed specifically for children because that's what was offered. If they found the children's section independently and made a choice to buy a stuffed animal with their own money, so be it. The only thing I do at the point is let them know that adults leave their various toys at home or in the car when they go out. So S leaves her dinosaur in the car.

And as always, I remain open to what people with intellectual disabilities can teach me. On this topic, I think that I could be a little more playful and have more fun.

"It is exquisitely human to play; we relish and require it to feel whole. It is our refuge from ordinary life."  - Diane Ackerman

Vulnerable

Most of the time, I write about the capabilities of people with intellectual disabilities. Yet they are still vulnerable to people who have more power than they do. Sometimes those people with power misuse it and are unkind or abusive toward people who can't always speak up for themselves.

Just two weeks ago, the governor devised an initiative to protect people with disabilities from abuse. It's called Justice for the Protection of People With Special Needs. http://www.governor.ny.gov/Justice4SpecialNeeds/home.  The government has a multifaceted plan for taking a no-tolerance approach regarding abuse. The plan involves more effective training, support for staff while on the job, and justice for people who were harmed in some way. It will probably take some time to roll it all out as there will be many changes in the way we currently do things. Staff will be signing codes of conduct, supervisors and clinicians will be assigned hours in the evenings and on weekends, and people who are found to be abusive will be terminated.

The report http://www.governor.ny.gov/assets/documents/justice4specialneeds.pdf  that this all stems from cites many reasons why people do abuse others. The answer is not that evil people work with individuals who are vulnerable. The answer is mostly that the system surrounding services to others is imperfect, resulting in frustration and exhaustion.

I do applaud our governor in his effort to eradicate abuse toward the most vulnerable of our citizens. His plan looks costly and complex, though.

My own tendency is to break things down to as simple as possible. I also like all of the money allocated for people with intellectual disabilities to go directly to the supports that they need and want. That being said, my own plan involves two steps: provide services that are kind and do the right thing. Even if frustrated when working with someone with an intellectual disability, take responsibility for your own actions and don't abuse. Take a step back, take a break, ask for help, vent your frustrations in a safe place, help your fellow staff members. Do the right thing. Always.

Letting Go

Humans seem to like to have a sense of control. We like things (and others) organized, orderly, and predictable. Having self-control is a very good thing. If we can control our emotions, our actions, our thoughts, and our lives in the manner that we want, we will be happier and more successful (in whatever success is for us). I don't think wanting to have control over another human being is such a good idea, though.  Much as we might want to control another's actions or decisions, it seems best to try to let go. It has been my experience that if you try to control someone else, they will either rebel or give in. Neither is a good option. Rebelling sets up divisiveness and power struggles. Giving in might mean they give up as in learned helplessness.

The thing is, most people don't think they are trying to control others. We are in denial on that point. When working with people with intellectual disabilities, many of us think that we know what is best for someone else. We have to let go of the idea that we know what is best for another. A person (disability or not) can determine what is best for them. It is their life and only they can know what is best for them, even if it differs from what the majority thinks.

Letting go means letting go of the outcome. No matter what happens, it was their decision. If they wanted to wear shorts after seeing on the news that is was going to be cold out, let them do it. The only way someone can make an informed choice is to be given the opportunity to make a mistake and learn from it. If you are worried that they will be cold and uncomfortable that day, pack them a pair of long pants to bring with them. Or have them go outside to test the temperature for themselves to see if they still want to wear shorts.

People want the opportunity to make mistakes. There is great dignity in it. This doesn't mean we can't motivate, teach, model or suggest. Start by letting go just a little.

Health and safety do matter, though. If a person is truly at risk for serious injury or long-term health concerns, we do have to support them to be safe (in as non-controlling a manner as possible). The way to let go in the cases where there are safety risks is to include them in the process. We could ask them how they would like us to support them.

How They Spend Their Day...

I remember once reading a quote (but can't find the source) - "How you spend your day is how you spend your life." Even thinking of  'spending' my life is sobering, as if I am making withdrawals each day. Nevertheless, the quote reminds me of how some people with intellectual disabilities spend their days and their lives.

Some people spend their day waiting for and riding on vans.  This could involve hours.

Some people spend their day waiting for the next activity to start. They are rewarded for waiting patiently.

Some people are given things to color or pegboards to place different colored pegs in. These are given knowing that the person really enjoys to do them but sometimes they are not offered other things that they might like even better that would increase their pride, socialization opportunities, and productivity.

Some people spend their days stuck in fairly non-productive self-stimulatory behavior such as spinning tops, flapping magazines, touching objects repeatedly, switching light switches on and off, lining objects up, etc.  People with autism have this characteristic - it's called stereotypical behavior.

Everyone has the right to spend their days and lives however they like (as long as it doesn't hurt or infringe on another's life). I think we all just have to make sure that when we are supporting someone with an intellectual disability who may not have the self-direction skills to determine their next activity, that we help them to discover all the things the world has to offer.

Maybe they are working on that pegboard because they like it. Or maybe they have learned to be patient and work on the pegboard until something more interesting is offered. This distinction matters.

Maybe they want to spend their day running their hands under water for hours or flipping a toilet seat up and down numerous times. But more likely they are stuck and need some help moving on to something more productive. Possibly, they are thankful for being moved along. Some autistic people who have written memoirs of their thought processes have said that is the case. They were thankful for being directed to something more productive so that they could live a full life.

So, are you supporting another person to live a full life? While you're at it, are you letting daily time-draining activities keep you from living your own productive and full life and reaching your own goals?

The Importance of Feeling Needed

Do individuals with intellectual disabilities wake up each day feeling important? Like they have a purpose and a job? Like someone will need and value them today?

Years ago when my daughter S was getting ready to graduate high school, we had to look for a day program for her. She was unable to hold down any sort of paid job despite years of pre-vocational training. We ultimately found a nice day habilitation site where she continues to attend to this day. As the program worked with S to see what she would like to do with her life, she told them that she wanted to help people who use wheelchairs.

S has always had a fascination with wheelchairs,wheelchair lifts, wheelchair ramps, and people who use wheelchairs. She has a subscription to a magazine that specializes in disabilities with lots of photos of people who use wheelchairs. She also has many books and movies about people who use wheelchairs. In some ways this seems to be an obsession for her but her day program helps her to use that obsession productively. 

What they did then, was to set her up with her new 'job.' They gave her a name tag and showed her how to help the people who use wheelchairs in her program to get on and off their vans and to bring them to their activities in the building. S only helps people who can't wheel themselves on their own.

I got to watch S do her job yesterday. I was early to pick her up so I just watched her without her knowing I was there. When I pulled up, I saw her chatting with the staff members like she was one of the gang. When a van arrived, S would immediately get up and find the person who rides that van and bring them out. She knows all of the van drivers, all the routes, every person in the building and what van they ride. I was able to watch how proud she is and how important she feels that she is able to help. She feels needed and I could see it by her facial expression and how she interacted with the staff and her friends who use wheelchairs.

Individuals who receive services could be an active part of the running of the group home or day habilitation center. Rather than having staff and administrators setting everything up as the individuals with intellectual disabilities sit back and wait, they could each be given assignments according to their capability. The goal would be that staff would teach them the job of their choosing until they were independent, then leave them alone to do it. Each person would wake up and feel needed because their home or work site would not be able to run smoothly unless they were there to do their job. They would have an opportunity to be productive, feel included, and have increased social value.

My Own Mistakes

Some of the things I write about probably seem like social criticism. That may be, but the brunt of the criticism is directed at myself, first. Almost everything I write about, I have learned from mistakes I have made.

When I was a kid, I went along with the others who called kids with disabilities names.

Before I started working with adults with intellectual disabilities, I used to erroneously believe they couldn't learn anything. I am glad to report I was very mistaken.

Then when I did start working with individuals with disabilities, I used to pat their heads, which can be condescending. I used to call them honey or sweetie even though I never use those terms with any other adults. And I used to think the things they did were cute. I colored with them and automatically did child-like activities with them. I tied their shoes, not wanting them to get frustrated even though they could do it by themselves. I really just didn't know any better and my behavior was based on my belief that they were more like children than adults.

Over time, as I got to know the people I support, I realized that they are capable adults, able to learn everyday and contribute to society.

In assuring equality for all humans, some will have to change their beliefs, just as I did. I am still learning and still making mistakes daily. It's a process and I am thankful that people are lenient and forgiving of me as I proceed.

Taking Time For Granted

What if you woke up one morning and there were no clocks anywhere? So for that day, you would not be able to tell the time? How would you navigate through your day? How long would it be before you got frustrated or anxious because you didn't know how long something would last and you didn't know when the next event in your life was going to start? I think we take our clocks for granted. They are always present so we don't have to give them much thought.

What if you had an intellectual disability and you couldn't tell the time, ever? Don't get me wrong, many people with intellectual disabilities can tell time. But many cannot.

If you couldn't tell time, you would watch and find comfort in the normal rhythms of the day. If the sun is up, it's morning. If it's time for my shower, breakfast will be next. If I get my coffee after breakfast, the van will pick me up for work, soon. And so on. A person could happily go through much of their day based on the predictable events that mark their life. But what about if the schedule gets changed? I've seen a lot of frustration over very small changes in someone's schedule. Daylight Savings Time is very troubling, for example. One morning a person wakes up and it is light out. The next day they wake up at the same time but it is dark. It can take weeks for someone to adjust to this change.

Once at one of the day programs, we had to do some painting in some of the habilitation rooms. We had to move individuals who use those rooms to the other side of the building for a week. It was the most upsetting week for them. We were trying to figure out why so many people were having such difficulty and trying to figure out how to support them through it. Come to find out, they couldn't see the vans coming and going from their new room. They had used the van schedule as their clock and without it, they were lost wondering what was coming next. We hadn't noticed how important this was to them until that day.


My daughter paces her day through a combination of sunlight and sunset, meals, and television shows. She doesn't have to watch the television to have it tell time for her. She just has to turn it on to see that SpongeBob means it is time to get dressed and Full House means it is time for bed. I think it is a clever adaptation that she figured out for herself.

When we see that someone has to keep to their schedule in a rigid fashion, is it because they find solace in the sameness or is it because it gives them the reassurance of what time it is?

What if People with Intellectual Disabilities Ran the World

We try very hard to teach people with intellectual disabilities the social skills necessary to navigate life. What if we didn't try so hard to change them but instead took their lead? What would society look like if they taught the rest of us social skills?

We would all hug each other a lot more than we do. There would be hugs in greetings, hugs in goodbyes, hugs throughout the day.

We would be friendlier. We would all talk to each other more. We would strike up more conversations with strangers just to get to know another human being. We would delight in it, as if our only purpose in life was to get to know someone else.

We would take care of each other better. If someone were hurting or needed help, everyone would offer to help the person until they didn't need help anymore.

We would grieve quietly. If someone we loved died, we would not be worried about what others do to grieve but instead would grieve in our own way. And the person who died would never leave our memories but always remain a vital part of our lives as if they were still there.

We would be more honest with each other and no one's feelings would be hurt.

Everybody would get lots of attention from others and no one would be looked down on for needing lots of attention.

Everything big or little in life would be a celebration. We would all be cheered for our accomplishments.

Differences would be accepted and no one would try to change anyone.

We would forgive easily and not hold grudges.

We might gossip about each other but the content would be positive.

Society would be accessible to everyone. It would be built so that everyone could comfortably and easily go anywhere they wanted when they wanted.

We wouldn't judge each other. We would be free to be ourselves and no one would criticize us for it.

There would be no more wars.

There would be no discrimination based on race, gender, disability, or religion. Differences would be the order of the day.

There would be less conformity and more free-thinking.

There would be no stigma attached to having a mental illness or cognitive disability.

Inside the Group Home

Sometimes staff are asked if they are working in a home they would be happy and proud to live in. For whatever the reason, the answer is often "no." Some of the reasons they give is that they wouldn't want staff to tell them what to do, they would want more choices in foods, and they would want more opportunities to do what they want. I can see their points but not entirely. Really, the potential benefits of living in a group home significantly outweigh the drawbacks.

When the young adult sees that their family and friends are moving out from their home of upbringing, they want to, also. They want the same life for themselves that others around them have. Group homes give them a opportunity to start a life of their own.

Group homes are active and fun. There are activities planned in the home and outside the home, daily. There are always friends around and always staff to lend a hand. Celebrations are usually big; there are lots of parties and holiday gatherings.

The food is delicious, varied, and at the same time, healthy. The meals are based on what the individuals say they like and they shop for the groceries themselves. Dinner is a big, communal event every night with everyone helping to prepare the food, set the table, pass the dishes, wipe the table, and load the dishwasher.

After dinner and on weekends, there are usually many opportunities to engage in hobbies and sports events either at home or out in society. They paint, play bingo, write, join a basketball league, swim, play guitar, collect trains, watch a baseball game - whatever they want or like to do.

If someone likes things quiet, they can go to their bedroom and watch a movie, work on the computer, or listen to music. If they want company, there's always someone around to play a game or work on a puzzle or talk with them.

The individuals work on goals to help them become more independent and they select what they want to work on. Some are working hard to move into their own apartment or buy their own home.

They can plan days to take off from work or day program to go somewhere special or they can just relax. Some go golfing, some go to the casino, some go to the beach, horseback riding, hiking, or out to lunch.

Group home living is not for everyone but for most of the people I know, they really enjoy it and wouldn't have it any other way. I am not saying things are perfect in group homes. What in life is perfect? I just wanted you to see inside a group home if you have never been.

Right now, in my area, new group home building has come to a halt. As the waiting list for homes grows, my state wants us to find ways to have individuals with intellectual disabilities remain with their families when they come of age. This would be fine for the individuals and their families who want this option for themselves and are well-equipped with necessary supports in place. What about the parents who are aging, though? Or what about the individuals who need more support than a family can provide? Or what about the individual who wants to move out like all her siblings did?

I hope that we are able to start building new group homes again, soon. They benefit society.

Giving

Yesterday at one of the group homes, a young woman with Down syndrome, L, came home unusually happy from her day program. She shyly asked all of us, "Are you ready?" Then she took something out of her bag and handed each of us a little card she had designed at her program that day. The card was very pretty with some tulips and "Happy Mother's Day" printed on it. L's mother passed away many years ago. Instead of not celebrating, L came up with a way to give something to the women in her life whom she cares about.

The scene was so happy and full of positive feelings for both staff and L.

This made me wonder if everyone with intellectual disabilities has the opportunity to give gifts to others and how important it is that they do. It doesn't necessarily even have to involve an item. It could be a kindness, as well.
 
Another woman I work with, P, saves what she calls her 'mad money.' Then she asks staff to drive her to dollar stores, thrift stores, and garage sales. She buys little trinkets based on what she knows the people who live with her or work with her like.  Then when she gets home, she distributes the goodies to her friends.

My daughter, S, likes to buy Tic-Tacs and give them to her favorite staff.

Those of us who work or live with people with intellectual disabilities love to give to them. It's what we strive for everyday. It makes us feel good. So, do we make sure that they can have those same opportunities to give to us so that they can feel good, too?

Perfect Encounter

It was my daughter S's birthday yesterday. Now she is 29. Each year on her birthday, she gets to take the day off from work and decide what she wants to do every minute. I end up being her driver and chaperone and try not to interfere with her choices that day. Usually, her choices involve a lot of junk food, but oh well, it's one day.

In between the butterfly museum and lunch with two of her favorite people, I had to get gas for the car. S wanted to stop in a buy a soda. I discouraged her reminding her that we would be having lunch in a few minutes and she could get her soda there. Then I went out to pump the gas. I realized my mistake and popped my head back in the car, telling her that I was sorry and wrong, that of course she could get her soda because it was her birthday and she gets to do whatever she wants.

That's when the perfect encounter occurred.

S went into the store with her money and I stood in the background just in case she needed me. She found the soda she wanted, grabbed it out of the cooler, and went into the cashier's line on her own. She waited patiently for the couple of people ahead of her who were taking a long time. She paced a little outside the normally socially-acceptable boundaries of a line, but no one seemed to mind or even notice.

Then it was S's turn to pay for her soda. The cashier just glanced quickly to see if someone was with S then finding no one, happily addressed her. The cashier treated S just like any other customer, telling her how much the soda was, taking her money, giving her change, and saying thank you to her.

And that's as it should be. It was just a simple, quick moment in two lives but a lot occurred in that moment. A member of the community got the opportunity to interact with someone with an intellectual disability. A person with a disability got to use her capabilities on her own and feel the pride that occurs when she gets to do it for herself.  And she got to interact on her own with someone without a disability rather than standing on the sidelines waiting for others to interact without her.  I could tell that both the cashier and S enjoyed the moment, which lasted 40 seconds, tops.

Usually what happens is that the support staff or family member unwittingly take that moment away from people by standing too unnecessarily close. If the individual with the intellectual disability has learned and practiced the interaction, let them do it on their own. Let them establish their own place in the world, even if on a small level. Step back as far as you are able. Always.

While We Were Out

When people with intellectual disabilities go out, the jargon we use is that they are 'going out in the community', 'going on a rec. event', or 'going on an outing'.  (I often wonder why we use terms with people with disabilities that we don't use with others but that will be left for another day/another blog entry).

Anyway, I have seen a lot of things when I have been out with individuals with intellectual disabilities and I am going to share a few of my stories with you. Overall, my experiences have been very positive. I am happy to say that society does seem to want to get to know people with disabilities after all those years of seclusion in institutions. Anytime I have experienced negative interactions with community members, it is really just because they are unaware. They don't know how to interact or they are afraid of the unknown, maybe.

Many years ago when I started going out with people, a woman at the gym we were attending commented to me, "Oh, you must have the inmates out today." I nicely explained to her that that was not the case and we went on to exercise. We continued to go to that same gym for a few years and this woman established a relationship with the individuals. She was able to see that they were not inmates but instead just really likeable people.

Another time, I brought some people to a hospital to do some volunteer work. A woman there greeted us and said to me (as if the others weren't there), "I see you have the kids out today, how cute." I told her gently they are adults and that they were there to do volunteer work. It is really important to interject (always politely) when someone says something that could be construed as negative. Many times the individuals don't have the voice to stand up for themselves and they internalize what is said about them in front of them. In those cases, as you are encouraging them to find their own voice, you have to be their voice. As we did our work at the hospital, when she saw that the individuals were capable adults able to volunteer their services efficiently, she gained respect for them.

In another case while at the mall, one of the individuals, M, signed that he would like a cup of coffee. Due to a misunderstanding, he thought he had money but he didn't and we did not have any, either. (Something I have since remedied. I always carry a little money, now, just in case). M got frustrated and had an emotional meltdown. He just could not regain control. He sat himself in the middle of the hallway in front of the store with the coffee and yelled or tried to kick anyone who tried to get near him. No amount of reassurance that he could have coffee as soon as we got back home helped. A nice gentleman appeared and respectfully asked if he could help. I said he could get us a cup of coffee. He went over and tried to purchase a cup of coffee but the store employee, having seen the event, gave it to him for free. The helpful man introduced himself, shook M's hand and gave him the coffee. My distressed friend calmed down, enjoyed his coffee, and the rest of the day went fine.

I have many more stories but my overall point is that when you happen to bump into someone with a disability, just treat them like you would anyone else.  If you happen to be a sociable type that talks to everyone, you can strike up a conversation with them. If you happen to run across someone who needs help, you could offer. If you just keep to yourself while you are out, that's ok, too. That's actually what I have experienced most often. Everyone just doing their thing. If you happen to be providing a service to an individual with intellectual disabilities, try to pretend the staff isn't there. Address the person and conduct the transaction primarily with them. Staff will hopefully stand back and assist only as needed.

Enjoy the opportunity to get to know people with intellectual disabilities. They have so much to offer the world and you personally.

Doors

Have you ever thought deeply about doors?

The other day I saw a staffer knock on an individual's door and then enter. Of course knocking before entering is a respectful practice. In this and many other cases, though, we don't wait for their response. Either we think they are not going to respond, or we have taught them not to respond by always walking in without waiting to be invited in. Remembering that individuals with cognitive impairments often have processing delays, try to knock and wait. And really wait. If they don't say 'come in' or 'go away' or come to the door after a few seconds, knock again. And wait. If they still don't respond, open the door a little and ask if you can come in. You still might not get an answer. The individual might not even have the ability to answer verbally, but do this anyway. If we have taught them not to be empowered to answer their own doors, we can re-teach them to answer their doors. This will give them just a little more power in their lives.

On another day (and almost every day), I saw a staffer and individual come upon a door together and they wanted to enter. In this and the majority of cases, the staffer opened the door for them both. This seems a very kind and respectful gesture. But are we taking something away from them by always opening and closing doors for individuals with disabilities? It's a possibility that they need help with the door, but in many cases, they can do it themselves (even if just to push the accessibility button to open the automatic door). And if you let them open the door, it gives them the opportunity to do something nice for you. How many ways to we encourage them to contribute something and to feel truly productive and important to others? I hope the answer is an incredible amount. If not, start by encouraging them to open their own doors and yours, too.

Last thing about doors. The doors you keep locked, the doors that allow you in and not the individuals, are symbols and reminders to them that they are not equal in status to you. In many, if not most buildings, including their own homes, there are doors that are locked. Some of them keep unsafe things locked up. Some doors lock the individuals in their own homes for safety. I have found that they understand why those are locked up and agree with the safety aspect. The doors they are really concerned about are the ones that keep the goodies behind them and keep the goodies from them. The candy jars are kept behind these doors and the individuals know this. If staff, clinicians, and supervisors need chocolate therapy, then the individuals do, too. Some doors hold important papers and meetings and therefore the individuals are discouraged from entering. These include offices in their own homes. And staff lounges in their day program buildings. (Could they have a lounge, too?) I don't have an answer to this as some doors are necessary. This is just to think about what message a locked door is sending to an individual you support. Is it a necessary boundary or another reminder of a relationship of inequality and lower status?

Good Job!

You probably think I am going to discuss the merits of praise. On the surface, it seems like a positive approach. If you praise someone for doing something good or accomplishing a task, they are likely to feel good and do this good thing again.

I hear the words, "Good job!" almost daily. Even though this occurs in positive environments, I still cringe a little when I hear them. Here's what it looks like: A staffer asks the individual to clean their room and when they check on their progress, they tell them, "Good job!" This is good, right?

I have an illustration as to why we should rethink this.

One day I was out shopping with a friend. The cashier who checked us out was sight-impaired. He used a scanner that told him the price of the item and another scanner that told him the denomination of the money we gave him. After he was done feeling for the tags in our clothes, the cash register told him how much we owed for purchase. He felt for our money and then felt through the cash drawer to get our change. When he was done with my transaction, I told him, "Thank you" as I do with every transaction with a cashier. When my friend's transaction was done, she told him, "Good job!" The cashier's face showed a hint of humiliation and he stopped talking to us. I was embarrassed for him.

So what happened?

The man who is blind but completely capable was just doing his daily job and nothing more. My well-intentioned and generally positive friend thought she was being nice in complimenting him on how well he does his job. But what really occurred was a moment of pity, condescension, and inequality. If we would not tell the cashier at the grocery store or fast food joint who seemingly has no disability, "Good job!" then we shouldn't say it to the person with the disability.

The sentiment under that "good job!" is: "Wow, that is so amazing you can do that trifling thing despite your disability."

So how do we proceed to praise people for their efforts and accomplishments without being condescending?

1. Don't tell them they did a good job for something they are proficient at that they do everyday. If they brought their plate to the sink from the dinner table, tell how them you appreciate what they did. If you don't tell your dad "good job" for clearing the dinner plates, don't say it to people with intellectual disabilities, either.

2. Find creative ways to show that you noticed their accomplishment. They might really have done a good job. So tell them exactly what they did that was good. This takes the form of feedback for how they are doing rather than a fairly meaningless, "Good job!"

3. Thank them instead.

4. Be sensitive to how people like to be praised and noticed for their efforts. Some people like big praise, some like understated, some like it in private, some like everyone to know and join in. It's not positive or a reward if they didn't like how the praise was given.

5. If you still must use the words, "good job," at least accompany them with why it was a good job and what they specifically did that was so good.

6. Think in terms of recognition and appreciation. Most people do like to be noticed for what they are doing exceptionally well.

Are Your Pants on Fire?

Last week, I  heard about three instances of people lying to staff. I'm sure there were many more, though. In one instance, the person said they didn't get their morning coffee when they already had. In another instance, another individual said they had completed their chores yet hadn't. And the third instance involved someone saying they didn't get to go shopping when they had gone earlier that day. The staff in each of the cases took it as an affront against them that someone would lie to them.

The first thing in my mind always when the individuals fib, is to inwardly cheer them on for their clever, non-intrusive effort to get what they want or need.

The next thing is to think about whether I would lie in the same situation. Sure I would. If I want a second cup of coffee or want to get out of my chores for the day and no one is listening to my respectful request, I'd have to think about my next step. I could yell, I could stomp, I could cry, or I could lie.

The third thing I'd be thinking is how many times do I lie in a day and get away with it. I assure you it is a lot. We all lie, everyday. Most of our lies are probably those of omission. Those lies where we just don't say anything when we should. Many of our lies are an effort to be polite. If someone comes to you with a new hairstyle and asks for your opinion, even if you don't like it, you might say you do. And other lies include trying to cover up for a mistake that you have made. In some cases, if you honestly admit you made the mistake, you get in more trouble than if you make an attempt to lie about it. I'd rather have a society that rewards honesty but that is not how the world works.

So, back to the individuals with intellectual disabilities who lie. It has been my experience that the people we support lie far less than the person with typical intellectual abilities. They are basically honest and it is refreshing. They will tell you that your shoes don't match your clothes. And they have a way of doing it that doesn't feel like it is being disrespectful. It's just their observation with no judgment intended.

Try not to worry about people with intellectual disabilities lying to you. It is just an effort to get what they need in a world where they can't get what they need by themselves. You would do the same thing if you were in their position.

Book Review: Seven Keys to Unlock Autism

I just finished Seven Keys to Unlock Autism: Making Miracles in the Classroom by Elaine Hall and Diane Isaacs. I don't actually do book reviews. What I do is to glean nuggets from what I read that I can apply to my daily life.

There were lots of positive approaches and sensitivity exercises in the book that help illustrate why and how we should accept others - despite their disabilities -  just for who they are. One theme of the book was to encourage and appreciate people for their capabilities.

One of the many things that I got out of this book is to set an intention rather than a goal when working with people with intellectual disabilities. The goals we set for others are arguably important and based on building necessary skills. But it is the intention that overrides the goal. Rather than focusing primarily on a goal for someone to learn to set the table, our intention could be that everyone is going to have fun today. So they can still achieve their goal but could do it while having fun.


Other intentions you could have as you work with others:

That everyone will learn something new today.

That you will remain calm despite the chaos and drama around you.

That you will celebrate everyone's success today with them in a big way.

That you will see the positive in everyone today.

That you will support someone to achieve what they want today.

That you will help someone to see their capabilities rather than their disabilities today.

You can still work on their specific goals with them but with the aim of seeing the bigger picture. To work on things far more important than the achievement of that goal. It's about the journey, not the end.

Unperson

Go to youtube to watch a short video called "Being and Unperson" and come back.

http://www.youtube.com/watch?v=4c5_3wqZ3Lk

The young woman who wrote and narrated the video expresses herself in a way that should make us all ashamed for all of the ways in which we treat people with intellectual disabilities. I hope we are just unaware of what we do rather than intentional.

Some of the points she brings up:

1. Individuals with intellectual disabilities are treated in a dehumanized manner, or as if they are less than human.

2. Individuals with intellectual disabilities have been "twisted" to be quiet and submissive.

3. If a person does something meaningful for themselves, others without intellectual disabilities think they are cute.

4. Others talk in front of people with disabilities as if they are not there. These people are considered so insignificant that it doesn't matter what you say in front of them.

5. She feels as if her existence makes people feel disgusted or afraid. Sometimes people glorify her existence as if she were an angel on earth.

6. She says people with intellectual disabilities are not respected for their various methods of communication. And that they are told what to communicate and how to communicate, further making them feel like people want to change them rather than accept them for who they are.

7. Others communicate with people with intellectual disabilities by using tone and inflection often used with children.

8. Society tries to make individuals into what society wants, which makes them feel as if they weren't a person to begin with.

9. She is not allowed to have or desire what all other people without disabilities want.

10. She says that people with intellectual disabilities are not asked where they want to live but are placed where other, more important people think is best.

11. She says she is an unperson or a real person based on who is around her.


I would say it would be best to strive to be that person who makes others feel like real persons.

Never Say Need

I have often heard the words, "You need to ________." These words are used to help motivate someone to get something accomplished. For example, a staffer might be trying to help someone get ready for work and they tell them, "You need to pick something light to wear because it will be hot out today." Another example: "You need to take your plate to the sink."

This is a hard habit to break. But you only have to try to think about how you feel when someone uses that word with you to see how important it is not to use it. If my partner were to say to me, "You need to go shopping for groceries," I would immediately be put on the defensive. I would want to do the opposite of what he was demanding. Even if you put the word, "please" after it, it still sounds like a demand.

If you use the word 'need' while supporting someone with an intellectual disability, you set up a relationship of inequality. It puts the staff in a position of power over the individual, which is not acceptable. The individual should have power over their own life. Staff are only present to support as needed, not take over.

Using the word 'need' could also be misconstrued in a literal way. So, if you tell someone, "You need to comb your hair," they may literally think, "I don't need to do anything." And they are right. In your effort to be motivating, though, you had the opposite effect.

There are many ways to motivate someone to do something. Even if it is really essential that they accomplish a task and in your eyes they 'need' to do it, find creative ways to ask. Be polite. Have fun creating positive ways to motivate. And always be working toward them having complete power over their own life. No one should ever automatically feel that someone else is in control of their life.

Burnout

If you are like most of the people I know who support people with disabilities, you want to accomplish a lot. You want to reach every person every day. You want them to have a phenomenal experience of life. You want them to achieve all their goals and be happy in their lives. You want to make sure everyone is treated well and with respect. You want to make a difference.

Since all of those goals are idealistic and difficult to achieve on a daily basis, you are set up for burning out. Any person who has chosen to work with other human beings is likely to burnout at least once in their career. Especially those who work as direct support. You want to change the world but find out soon enough how difficult it is to change anything for the better.

To protect yourself against burnout, reduce your stress, and enjoy your time working with others, you could change your own outlook.

Instead of feeling like you have to reach everyone today, just make sure to reach one. Help make one person's experience of life outstanding today in whatever that means to them. Do something with someone that you know would knock their socks off. Help them in their own quest to find joy. Even better if you can reach two people in the same manner. But don't stress about that. Make it your goal to at least reach one.

Simplify your own goals. Maybe instead of reaching one person, you could make a meaningful connection with everyone you work with today, including fellow staff members. Some little thing like really listening to how their day is going.


At the same time, try to let go of the other things that stand in your way. Whenever you work in a system where you have to follow so many rules that sometimes don't make sense, you are going to get frustrated. Find a way to let that insignificant stuff go while focusing on the one person you are going to make a difference for.

And about those rules that don't make sense: make sure you voice your opinion. Do it with respect and without blaming others and include a potential solution. That way, you will not feel powerless, which also leads to burnout.

No More Toothbrushing

Oh, not really.

Of course we all have to brush our teeth. It's important. What I am hoping is that we stop making toothbrushing a goal for people with intellectual disabilities to work on.

When a person with intellectual disabilities moves into a group home or attend day services for habilitation, they have to have goals to work on. These involve activities that the individual wants to do or a skill that they would benefit from. Data is collected on how well they are achieving their goal.

I don't think any adult has to have a formal goal to develop their toothbrushing skills. That doesn't mean that they shouldn't continue to brush their teeth. It means that they would be able to work on goals that really matter to them.

Some of the adults that I know have been working on learning to brush their teeth for over 30 years. If they haven't gotten it just right after a certain amount of time, accept that they have developed that skill to the best of their ability. Then work with them on achieving a goal that matters and increases the quality of their lives. You still have them brush their teeth everyday, preferably after every meal and before bed. You still help them in the areas that they need help while allowing them to do as much as they can for themselves. But you don't keep it as a formal goal that you have to report on.

Then you ask them what they want out of life and help them to establish goals toward their dreams. Maybe they'll want to cook a meal for their friends. Or learn how to use the computer. Or learn how to read. Or volunteer at a hospital. Or play an instrument.

It's Just About Being Happy

Is all behavior ultimately about being happy?

When someone is having an emotional crisis, we have tools to help figure out why they are having difficulty (in the case where they can't tell us).

These assessment tools lead us to four broad options:
1. Tangible. It could be because they want something, like a cookie or to go shopping.

2. Escape. It could be because they want to escape something, such as a loud room, or a staff request, or a work activity they don't like.

3. Sensory. It could be because they are trying to feel good or soothe themselves, such as rocking or taking a shower, or disrobing because they are hot.

4. Attention. It could be that they need or want someone's attention for something.

The purpose of the assessment is to quickly ascertain why the person is crying or yelling or pacing or lying on the ground, when they are unable to tell someone what they need. Although there are certainly many other reasons why problematic behavior occurs, the assessment is an effort to make things simple in the moment and effectively help someone to calm.

What if we made it even simpler and said all behavior is an effort to be happy? Well, it would be less clinical and more human to think that way. And it would be the great equalizer, meaning all humans strive to be happy, not just people with intellectual disabilities. It would be more respectful to think it's all about being happy rather than saying, "They're just attention-seeking."

In an effort to simplify, it ironically becomes complex, though. If I want to help someone who needs or wants attention when all they really want is to be happy, I have to figure out why they want attention in such manner as to hurt themselves or others in order to get it. Why couldn't they just ask for attention? What are the underlying feelings? How has this person's life experience set them up so that they need to do something drastic in order to get some attention and acknowledgment?

These questions then make it even more complex to figure out. They could be lonely, bored, feel inadequate, feel unsafe, want more status,want to make a contribution, want to experience more self-direction, love, and recognition. The underlying, deeper reasons for wanting attention go on and on. We have to remember that it is ok to want attention. We all want attention. And we all want to be happy.