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.