The Hope For a Happy Life

It is so simple. All we parents want for our adult children is for them to be happy. We think we know what will make our children happy - career, success, money, home, car, friends, marriage, kids. When we have children with disabilities, we learn to change our goals because our children may not enter the typical success pathway. Or maybe we come to realize that it's not our goal to begin with. Can we let go of our goals for our children, whether disabled or not, and let them be whatever makes them happy? Can we stop feeling guilty about who we thought our children would be and let them just be? All I want for S is that she live a happy life based on her own goals. I went through some grieving when I realized she would not be living the life I had hoped for her. And then I let go.

Existential Crisis ?

S is now 35 years old. She's been living in her group home geared toward adults with various developmental disabilities for about 4 years now. Everything has been great up until just recently and now S would prefer to spend her life in bed. Everyone is sad for her and her support team is trying to figure out why she is trapped in this malaise. Rather than looking at the easiest, simplest answer, I tend to make things complex. One of my first thoughts is to wonder if S is leading a fulfilling, meaningful life. Can a person with an intellectual disability have an existential crisis? Well, I think so. I know there is a common misconception that people with intellectual disabilities are eternal children, eternally happy, but they are human beings with the same human needs for belonging, productivity, and meaningful activities as the rest of us. When we want to figure out why S wants to spend sometimes 24 hours straight in bed, not eating, not taking care of basic needs, there could be a number of things going on. She could be physically ill, depressed, anxious, bored, overwhelmed, tired or mentally preoccupied and she has not been able to tell any of us why she won't get out of bed.  We are all trying to support S to live a great life but it is on our terms, thinking we know what is best for her. Maybe she is starting to understand that she is not going to have an intimate relationship with another, that she is not going to be a mother. Maybe she sees that she is not going to own her own home, get married, go to college, drive a car. She did have those dreams years ago and other things to look forward to.  If all of the rest of us have the ability and right to design a life that is meaningful, how do we help S and others like her to do the same? Will that be enough to get her out of bed?

A (Group) Home of Her Own

S is 31 years old now and in September 2014, she moved out into a home of her own. She did not move out into a typical home for her age but instead she moved into a group home with 11 other people with intellectual disabilities. It was not our dream for S to move into a large group home especially since there are so many other alternatives, now. But we all got to the point of realizing that S needed friends her own age, more social opportunities, and a life of her own.  Of all the houses we visited for about 9 years, this is the home she chose.

After a period of tears and trauma when she first moved out, we have all settled down into a layered life of greater fulfillment. S has good friends who she talks about and who really seem to like her. She goes shopping for her own groceries, goes to parties and dances, decides how she wants her hair and nails done, and goes to church. These might sound like little things but she didn't have these opportunities with us. We gave her as good of a life as we could, but it wasn't her life. We didn't go to church, so she didn't. Now she has found out on her own that this is important to her.

With us, she did what we did. Now, she does what she wants.

Abuse of the Disabled

Today in the local newspaper there was an article about how many people with intellectual disabilities were abused by their paid caregivers in the past year in New York state. There were 571 confirmed cases of abuse or neglect this year. That is a relatively small number, unless you are the one being abused, of course. There were many more allegations of abuse but there was not enough evidence to prove them.

I have found that there is abuse occurring but it is so hard to prove it. The individual with the intellectual disability is often not considered a reliable source of information. The staff members lie and there are no witnesses. Two staff members differ in their reports and so the allegation is unsubstantiated, yet may have occurred.

Some examples of abuse are: yelling at them, belittling them, stealing their money, punishing them, teasing them, punching or hitting them, not keeping them safe with proper supervision, not changing their soiled clothes or bedding, keeping them in a secluded area, and the list goes on and can be quite disturbing.

It is tragic that the people paid to care for others are abusive to people who cannot defend themselves, mentally or physically. We are in fact, paid to protect them.  It has been my experience that we don't hire evil people but that good people get affected by the system they work in and often don't even realize they are being abusive in their frustration. That's not an excuse for bad behavior; just an observation. And I don't have any answers.

No No's

Can you imagine what it would be like if you had to ask for most of things you want and most of the time you were told 'no'? Or that you were told 'no' throughout the day because you were being corrected for your actions on a regular basis? As staff or parents supporting others with disabilities, we try to find clever, positive ways to not say 'no' even when we have to. But they are still smart enough to know we are saying 'no' and smart enough to know that we are trying to positively direct them toward another choice - our choice, not theirs.

"Can I stay home from work today?" Why don't you plan a day off next week?
"Can I have some candy when we go to the store?" Didn't you say you wanted to lose some weight?
"Can I wear shorts today?" Let's check the weather report because I think it might be too cold today.


One difference between my life and that of a person with intellectual disabilities is that I can get what I want or need without asking anybody. And that means that most of the time,  no one tells me 'no'. I can stay home from work occasionally, I can buy candy when I want, and I can wear shorts even if is cool out.

I am not saying that we shouldn't be guiding others toward healthier, better choices if they are unable to make good choices. I am just trying to imagine how I would feel if people around me were regularly correcting me, guiding me, teaching me, and telling me 'no'.

So for S's 30th birthday yesterday, I tried to not guide, suggest, teach, or say 'no' to her. When she woke up, she got to do whatever she wanted all day long with no censoring from me. We have done this for years on her birthday. This is what we did yesterday:

She woke up and said she wanted to put her friend who uses a wheelchair on his van so he could go to work. She loves wheelchair vans. She also gets a high-five from the nice man who drives the van. We drove 44 miles round trip to do that. Then she wanted to go to McDonald's to get an egg, sausage, cheese bagel sandwich. Next she wanted to go to the Strong Museum of Play. The activities there are really meant for kids but we go anyway. I followed her around and let her initiate everything without censoring, or reminding her that she is an adult, or suggesting other activities she might be missing. I never realized how much I hustle her around places. As I watched her looking at the exhibits, she really spent a lot of time carefully looking at details and commenting. She also spent a lot of time watching other people. She spoke more, too, because I wasn't doing all the blabbing and suggesting. Next we met the grandma's for lunch at Olive Garden. She brought her stuffed floppy dog in the restaurant (the one I tell her to keep in the car when we are out). She asked for her drink in a kid cup and ordered off the kids' menu. She wanted to go home and take a nap. When she got up, I waited for her to tell me what she wanted to do next. She wanted to go to the mall to buy a movie and then wanted to go home to order Domino's pizza with pepperoni. We sang to her over her chosen Spiderman cake. This made her agitated and she put her hands over her ears and left the room. She came back when we stopped singing. She opened her gifts and walked away again. She still doesn't understand the social expectations regarding gifts - smile, looked interested, say thank you. Then she decompressed in her bedroom while watching YouTube, playing a computer game, and watching Roseanne on dvd.

Not your typical birthday, I suppose. I just wanted her to have one day where no one tells her what to do, no one tells her 'no', we trust her choice-making, we don't try to teach her something, and we accept her and her choices. These are things I get in my life everyday (and take for granted).

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.