Making Up My Mind: Why I Want to Live in an Institution

Last week, the behavior specialist for my care home came by for a visit to discuss my housing profile. This is the thing with my wants and needs with respect to a new prospective care home on it. I initially wasn’t too picky, saying for example that I would most like to live on institution grounds but if that isn’t possible, a quiet neighborhood home would do too. Then when I talked to my husband, he said that an integrated neighborhood doesn’t get much quieter than my current neighborhood in Raalte. He also told me I don’t need to make compromises about where I want to live as of yet, since I will be looking to stay in my prospective new home for the rest of my life.

The reason I initially compromised about living on institution grounds, is that my current care agency has only one such institution and that one at least wasn’t admitting new clients back in 2019. I’m not sure about right now or whether not admitting new clients means they aren’t keeping a wait list either. However, I was wary of contacting other agencies due to the bureaucracies involved. Then my husband said though that this shouldn’t be something for me to worry about.

Eventually, after talking about it with my assigned home staff, my husband and my mother-in-law, I decided to make up my mind about my wishes for the housing profile. I said I’d really like to be looking at institutions.

This does mean I had to drop my objection against contacting external agencies. I offered two agencies we could contact other than my current one. One has an institution in Apeldoorn, the city I grew up in, and another in a small town elsewhere in Gelderland, about a 45-minute drive from Lobith, where my husband lives. For reference: Raalte is about a 75-minute drive from Lobith and I did agree with my husband that I won’t be looking at care homes that are farther away. The other agency has an institution near Apeldoorn and one near Nijmegen. I’m not sure the one near Nijmegen was acceptable distance-wise to my husband, but the one near Apeldoorn certainly was.

Both agencies are unlikely to refuse to consider me based on my IQ alone, even though both primarily serve people with intellectual disability. The reason I think so is that both also serve other populations and I have some experience with both agencies.

I do feel all kinds of feelings about the fact that I’ve made up my mind. For one thing, I do feel some form of shame about wishing to live on institution grounds. Back in 2006 and 2007, I wrote agitated articles about the fact that deinstitutionalization was said not to be working by some non-disabled advocates for the disabled, claiming it was poor care, not community living, that was at fault. I meant, for example, the fact that people in the community need more support to go outside if, for example, they aren’t safe in traffic, than they would need in institutions. Then, if that support isn’t provided, it’s no wonder they’d rather go back to living in the woods.

Now one of the reasons I want to go into an institution is the fact that I don’t feel safe leaving my home and the only way of preventing me from leaving it anyway is locking me up. Now tell me again you want the least restrictive environment.

Another feeling has to do with the institution in Apeldoorn specifically. My family home was quite close by that institution. So close in fact that I remember one day when I was eighteen, having an encounter with the police and being asked whether I’d run away from there. I know my parents would feel intense shame if I moved there. Then again, they probably feel intense shame at the fact that I live with people with intellectual disabilities already. Besides, who cares what my parents think?

I do have a few things I need to consider when looking at external agencies. For example, my current agency provides free, pretty much unrestricted WiFi in all rooms of all its homes and it’s available to clients if they wish to use it, which I do. I am not sure the other agencies do, but I will inquire about this when the need arises.

#WeekendCoffeeShare (April 10, 2022)

Hi everyone! I’m joining #WeekendCoffeeShare today. I just had a soft drink and a glass of water, but if you’d like a cup of coffee or tea, I’m pretty sure my staff can make you one too. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that a fellow client passed away on Wednesday. He had had COVID back in February, like most of us, but he didn’t fully recover. This client had been hospitalized several times during December and January because of seizures, but these finally seemed to be well under control. Unfortunately, COVID was the last straw. He had been on a feeding pump ever since he’d had COVID, but because he became increasingly uncomfortable and unresponsive, the doctor and staff decided to discontinue his feedings on Monday. I last saw him alive Monday evening. He actually lifted up his body, smiled and squealed with delight upon hearing my voice. I made the conscious decision, having already been informed that he’d be dying soon, to keep this memory as my last memory of him while alive.

If we were having coffee, I’d share that I finally managed to craft another butterfly with the silicone mold I’d gotten for Christmas last December. I badly wanted to create a butterfly to go with the fellow client’s coffin, but wasn’t sure whether I could use the mold. However, other tutorials seemed even more complicated, so I eventually decided to give it a try. I did the wings in Fimo Effect color blue ice quartz. The body is pacific blue and the antennae are black.

If we were having coffee, I would also tell you that I have finally given in to the polymer clay color mixing thing and bought a precision kitchen scale. That plus a collection of 60 Fimo soft color recipes. Of course, I haven’t tried Fimo professional yet, but if I have to believe my staff, the colors I’ve mixed so far turn out gorgeous despite not being done with the true primary colors.

If we were having coffee, I’d tell you about the nationwide cerebral palsy day I went to yesterday. Of course, because the ParaTransit taxi had arrived at 8AM and we didn’t have to pick up any other passengers along the way, I was in Apeldoorn, where the day would be held, by 9AM. Thankfully, I had called my mother-in-law when I entered the taxi and she’d made sure to be there on time too.

The day started with a live-streamed lecture by Erik Scherder, a neuroscientist from Amsterdam. The message was quite similar to the one he’d conveyed in 2018 when I’d attended the cerebral palsy day too: that exerting yourself physically is needed to stimulate your overall neurological wellbeing. In 2018, the lecture had mostly been geared towards (young) adults, while yesterday it was more focused on children and their parents.

I attended two workshops during the day. One was on aging with cerebral palsy, mostly geared towards those age 40+, so I was a little outside of the scope, but I could relate (sad as it may be) to some of the increasing discomfort that older adults with CP face. The other was a yoga class.

As regular readers of my blog might know, I am not 100% sure I even have cerebral palsy, in that my parents never told me and, by the time I was an adult, things got so overshadowed with other diagnoses it’s unclear. For this reason, I felt validated knowing that I appeared not to be the most mildly affected person, strange as this may seem. In fact, during the yoga class, we had to loosen up our muscles and my mother-in-law told me to loosen up. Someone else half-joked: “That’s about the hardest thing to tell a spastic.” That made me feel good.

How have you been?

A Sunday With the Theme of Self-Esteem

Hi all. The past 24 hours have truly been a mixed bag of emotions. I started obsessing over wanting to start another new craft. Yes, another! Somehow, I decided on macrame and got all obsessed about learning its techniques before even having any cords. Then I decided to ask in a Facebook group whether you need to be coordinated in both hands in order to be able to do macrame. The first commenter basically said not only that, but you also most likely won’t be able to feel your way around the knots.

This was late last night, past midnight actually. I went to bed feeling awful about myself. After all, the reason I wanted a new craft is not that there’s nothing more to learn about polymer clay, but that I’m somehow convinced that I’ve reached my full potential.

By morning, I found that other people had been more encouraging of me trying macrame or even card making. You know, remember I’d said I tried that back in 2013? These people said so what if my work doesn’t look good, if I enjoyed the craft. That’s not entirely my kind of attitude, since I do want to be able to share what I make here or on my personal Facebook page at least without feeling like I have to be ashamed of myself.

I have been trying to work on some polymer clay projects in progress again later today by sanding some beads and charms. It felt kind of okay. I also watched some more YouTube videos on polymer clay, but they made me feel like I’ll be taking forever to understand the concepts. Then again, this is even more the case if I start another craft entirely. Guess I’ll just stick with polymer clay and try to be more patient with myself.

As a side note, one person did say that, if I can tie my shoelaces, I can do macrame. That kind of discouraged me at first, since I can’t tie my shoes. Make that couldn’t. At least, after three tries, I was successful at tying my shoelaces while my shoes were in front of me on the table. Then I tried several more times, more or less successfully. I don’t think I want to really be able to tie my own shoes, but it was an interesting boost to my self-confidence.

Mentors and Role Models

Today’s topic for Throwback Thursday is mentors and role models. Of course, last week, I already shared about my high school tutor, who was a mentor when I was a teen. Today, I’m going to share about other role models.

One of my first role models was my paternal grandmother. She was a fiercely independent, self-determined woman. In 1973, a year after women were legally equal to men here in the Netherlands, she divorced my grandpa. She went to college to become a social worker, eventually becoming the head of social work at the psychiatric institution in her area. In the mid-1990s, in her early 70s, she founded a senior citizens’ living complex, where she lived for nearly 20 years until she needed to go into a care home. She died in 2018 at the age of 94.

One clear memory I have of my grandmother that has stuck with me throughout life and which perhaps unintentionally inspired me, is her comment about her work as a social worker with troubled young people. She told me that, when some young people don’t want to go home to their parents, she had to sometimes honor the teens’ wishes rather than the parents’. Even though I was 19 when first going against my parents’ wishes, and their wish wasn’t for me to live with them, the point was that my opinion mattered even if I was “crazy”.

Later, when I was a teen and young adult, I sought out role models who shared some of my experiences. One of my first role models in this category was someone I met through an E-mail list for my eye condition. She was in her early thirties when we first met online and I was seventeen. Besides blindness, we had some other experiences in common. We eagerly read each other’s online diaries back in the day. She is still a Facebook friend of mine, but, because she has moved on to become more or less successful at life and work and I haven’t, we don’t share the same life experiences anymore.

Some people I considered inspiring, I never even talked to, such as Cal Montgomery, a disability activist whose article, “Critic of the Dawn”, I first read in like 2006.

Currently, indeed, what I look for in an inspiring person or role model is shared experience. That being the case, I consider many of the people I’m on E-mail lists or in Facebook groups with to be inspiring. Then though, our interactions are more based on equality, where any of us can be the inspiration for the others.

I don’t think that I quite have what it takes to be a mentor myself. Though I can provide people with inspiration and information, I don’t really have my life together enough to be a role model. This saddens me, thinking about the fact that I’m older now than the woman I met at seventeen was when we first met.

What do you look for in a role model?

This Is “Profound Autism”?: Reframing the Discussion Around Complex Care Needs

A few days ago, there was a discussion on the Autism Science Foundation’s Facebook page in which parents of autistic adults with complex care needs were describing their children with the hasthag #ThisIsProfoundAutism. I asked to reframe the discussion to include people with multiple disabilities including autism in general, because it is rarely (but not never!) autism, no matter how severe, alone that causes a person to be completely dependent on caretakers. I then explained that due to the combination of my disabilities, I need 24-hour care, including one-on-one for most of the day.

Not surprisingly, I was quickly met with the question whether I was saying I needed 24-hour help with basic tasks such as eating, bathing, dressing myself, etc. Well, the Autism Science Foundation page is a public Facebook page and I didn’t want the people on my friends list (including immediate family) who don’t know this, to judge me for it, but the short answer is yes. While I, like presumably most “profoundly autistic” people who don’t have physical disabilities, am physically capable of eating and dressing myself for the most part with some difficulty, my executive dysfunction means I still need help with them. As for bathing, well, I basically need someone to wash me, because, while I can physically hold a washcloth in my hand, I don’t have the organizational skills to actually work out the ritual without a ton of supervision and even then it’d lead to a lot of meltdowns.

I did, incidentally, point out that I recognize intellectual disability as a valid additional disability that needs to be taken into account when I asked to reframe the discussion. After all, that’s most likely what’s causing these autistic adults to be unable to understand instruction and to be completely dependent. For me, it’s a combination of executive dysfunction, which is a direct autism symptom, blindness, mild cerebral palsy, and other things.

I also do recognize that the need for support with severe challenging behavior is not the same as the need for help with basic personal care. One does not exclude or necessarily include the other and one is not more valid than the other. I, for one, am somewhat more independent in terms of eating, dressing and bathing than my severely intellectually disabled fellow clients. I am a lot more dependent where it comes to the effects of my challenging behavior.

I also do not mean to say that autism on its own cannot possibly cause a person to need a lot of care. It can. I am reminded of a girl I read about on Dutch social media many years ago, who indeed had hardly any functional communication skills but did have an IQ above 85. She, unlike me, didn’t have any additional disabilities. She was completely left behind in the care system: she was too severely disabled for traditional child and adolescent mental health services, but her IQ was too high for intellectual disability services. Really, I should not have called for reframing the discussion to include those with multiple disabilities, but those with complex care needs in general.

That being said, I strongly disagree with those people who say that just because I can write, means I should have ignored the conversation, since it clearly wasn’t meant for me. The fact that I can write, does not make me not dependent on care providers and does not mean policy or lack thereof won’t affect me. I am autistic and that, along with my blindness and other disabilities, causes me to need the extensive care I get now.

Life Skills I Struggle With As a Multiply-Disabled Person

Earlier today, Ann Hickman wrote an interesting list of ten life skills she is teaching her autistic teenager. As a teen, I missed out on most of these lessons she mentioned, leading to a big gap in my skills as well as my awareness of them.

Of course, lack of education isn’t the only reason autistics and otherwise disabled people may struggle with life skills. I struggle with many of them due to lack of energy, executive functioning issues and other things.

Today, I am sharing life skills I struggle with and why.

1. Personal hygiene. I remember vividly my sister gave me a deodorant for my fourteenth birthday as a hint. I didn’t get it. I wasn’t taught about hygiene much beyond childhood, but even if I were, I didn’t grasp the concept.

Similarly, because we had a bath at my parents’ house, I didn’t learn to properly shower. I didn’t know until a few years back that you’re supposed to use body wash when showering each time.

Other personal care tasks, I simply cannot do due to my physical limitations. I cannot clip my nails, for instance. I know some other blind people (presumably without physical disabilities) can, but other blind people I know go to the pedicurist for this.

2. Meal preparation. While in the training home, I tried for weeks to learn to put peanut butter or jelly on my bread without success. My mother can’t do it blindfolded either. My father can, but he assembles all his supplies around him in a very structured manner.

To be honest, I never had to prepare my breakfast or lunch before going into the training home, as we didn’t eat breakfast at my parents’ home and my lunch was always packaged by my mother (or I’d eat a sausage roll at the cafeteria).

There are probably ways I could prepare my own meals if I really need to. I mean, when living on my own, I just ate plain bread without toppings. However, I prefer my staff prepare it for me.

3. Cleaning. This is a difficult task for most blind people, but it can be done. I can dust my desk and table with minimal help if I’m reminded to do so. However, I can’t vacuum or mop the floors. I learned both, but with each house having a different way it’s set up, it’s very hard to find my way around it with a mop or vacuum cleaner.

What I struggle with most with respect to cleaning, is remembering how often each task needs to be done and actually organizing them. For example, in the training home, I’d clean the top of the doors each week despite no-one ever touching them. On the other hand, I’d procrastinate about changing my bed sheets, sometimes leaving them on for months.

4. Getting around. Ann mentions navigation for a reason: regardless of high-tech solutions to help people navigate, they still need to learn to use maps or to use public transportation. For me as a blind person, mobility was always more important, as it additionally involved safe white cane travel. I never mastered this, even with seven years of mobility training in special education and many more lessons once out of special ed. I only recently learned that more blind, neurodivergent people struggle with white cane usage.

Currently, I can for the most part move around inside the care home by myself, but I cannot at all get around outside without a sighted guide. My parents used to blame this on lack of motivation. While I am pretty sure this, as well as anxiety, does play a part, it is also about other things. Besides, lack of motivation is not the same as laziness. In my case, it feels as though the activity of independent travel overloads me cognitively to the point where I feel incapacitated.

I am assuming Ann’s son is “just” autistic, whereas I am multiply-disabled: autistic, blind and mildly physically impaired. However, with this article, I want to make it clear that there are many reasons a disabled teen or young adult might struggle with life skills and, for this reason, many different approaches to supporting them.

Keep Calm and Carry On Linking Sunday
loopyloulaura

How I Cope With Stress

Today in her Sunday Poser, Sadje asks how we cope with stress. We all face stress in our lives, yes, even the most laid-back people out there. Maybe they’ve just found better ways of coping with it.

I for one find that a major stressor for me is frustration with my disabilities. For this reason, it may be that my parents thought I was very laid-back until I became aware of my blindness when I was around seven. Now, frustration in general, such as with failing technology, can set me off, but really so can frustrations when trying to accomplish something.

So how do I cope? Over the years, I’ve found several ways to ride the waves of frustration. Dialectical behavior therapy and in particular the ACCEPTS skill set has helped.

I find that distracting myself by focusing on something other than the frustrating situation or thing helps. This is hard with my autistic tendency to perseverate. For example, when I get frustrated with a polymer clay project, it’s currently hard to let go and focus on something else. But it is necessary. This is why my staff encourage me to take regular breaks and also do other activities, such as walking, besides polymer clay.

I also find that talking through my problems sometimes helps. Then, I may realize I’m catastrophizing or using other cognitive distortions. Often though, to get rid of a stressor, I need someone to take over part of the problem, or all of it, from me. After all, my problem-solving skills are practically nonexistent.

Other things I do to cope with stress include finding relaxing activities, such as diffusing an essential oil blend or lying under my weighted blanket. Lastly, writing about my stressors, problems or frustrations also helps.

What helps you cope with stress?

I’d Rather Not Ask

This week’s prompt for #LifeThisWeek is “Questions”. Denyse writes in her original post that she tended to be a question-asker until she was faced with a cancer diagnosis, when she felt too overwhelmed to ask questions. And maybe, I’m assuming here, also a little too self-conscious. She was able to ask some of her questions eventually but even still encounters things she didn’t even know she wanted to know.

I am not a huge question-asker. Like, over the past week, I’ve been asking lots of polymer clay-related questions, but I’ve felt self-conscious each time. I’d rather solve my own problems than ask for help.

Unfortunately, with me being multiply-disabled, that’s often hard. Even when my only recognized disability was blindness, I struggled with asking for help for those things that those who are just blind usually get help with. I’d rather figure things out on my own, only to get frustrated and distressed when things didn’t work out. I considered myself fiercely independent, but I really wasn’t.

As my father at one point said: “You have an issue with only saying when you think people should have helped you.” I realize that’s rather disrespectful indeed, because, well, other people are not mind readers and cannot have guessed that I wanted to ask for help. Then again, I didn’t necessarily want to ask for help.

I’m trying to learn to ask for both explanations and assistance when I need it now, but I often still feel very self-conscious. This happens especially online, where people can’t tell right away that I’m disabled. For example, people in the polymer clay Facebook groups often suggest I watch YouTube videos, so then I feel kind of obligated to say that those won’t work for me as I’m blind. I do tend to say that I’ll ask my support staff for help, because of course I can’t expect a random person online to explain everything in plain text. Each time I feel I have to mention my disabilities though, I feel some of my self-esteem go. I’m not sure that’s justified, but it’s the way it is.

I Am Not a Calculation Mistake

Like I mentioned last week, I have been doing a Bible study plan on YouVersion called Hope Heals in the Midst of Suffering. I finished it yesterday and it was awesome. It was written by Katherine, a woman who survived a severe stroke shortly after becoming a mother, as well as her husband.

The plan follows Joseph’s story, the part of Genesis I had gotten stuck on in my Bible in a Year plan. I was glad to read it now.

At one point, Katherine shares that, about a year after her stroke, she is still unable to perform many basic functions. She is still in adult diapers, unable to eat, unable to even lift up her head. Her family is having Thanksgiving dinner with her son, then a toddler. As the family are playing with her son, she wonders if there was a mistake. Should she have died from her stroke?

It was at this point that a lightbulb went off in my head. I, too, have often wondered whether my life is a mistake. A calculation mistake, to be exact.

You see, I was born over three months premature. Officially, I was born at 26 weeks 4 days gestation. However, it is quite probable given the circumstances of my conception that my mother really wasn’t yet 26 weeks along. At the time, 26 weeks gestation was the cutoff for active, life-saving treatment in the NICU.

My parents weren’t even sure I should be treated actively. At one point, when I’d suffered a brain bleed, my father asked the neonatologist what he was doing with regards to my treatment. “We’re just keeping her alive,” he said. He (or his nurse) added that my father shouldn’t interfere in my treatment or he’d lose custody of me.

In 2004, when I was eighteen, this same doctor was quoted in a newspaper as saying that he sometimes meets preemies he’s kept alive back in his early days as a doctor, about whom he wonders: “What have we done?!” I at the time tried to reassure myself that he wouldn’t have meant me. Or would he? I, after all, am multiply-disabled and in long-term care.

The devotional in the Bible plan I was reading continued. Katherine at this point heard God clearly speak: “I am God. I do not make mistakes.”

This was what I needed to hear! I have tried to find my neonatologist on Google several times since that newspaper article. However, I don’t need his opinion. I have talked to my father about his views on my quality of life several times, but it hasn’t helped. I don’t need my father’s opinion either. God chose for me to be kept alive and that’s what matters.

Grace and Truth

Also joining Friendship Friday this week.

Independence

In last week’s Sunday Poser, Sadje asked what independence means to you. Her question was related to Independence Day in the United States. Of course, one can view independence and freedom in light of one’s national political situation. For example, the Netherlands is a pretty stable democracy. The country has been independent in its current form ever since 1815, though Wikipedia even lists 1648 as the Netherlands’ independence year.

I for one, however, tend to apply independence and freedom much more personally. By independence, I refer to the skills I can do by myself, ie. self-reliance. This includes eating, toileting, dressing myself, writing my blog, etc. But it also includes the skills of self-determination.

I think self-determination is particularly important. By this I mean the ability to know what you want and make it clear in some way or another. Everyone, the disability rights movement assumes, has this capacity. Yes, even people who can’t talk and are labeled as profoundly intellectually disabled. However, it is so commonly overridden by well-meaning family or “helping” professionals.

I remember a client at the first day center with my current care agency for people with intellectual disability I attended. This client had severe cerebral palsy, was profoundly intellectually disabled, couldn’t speak, had epilepsy and was blind. However, somehow, the staff had figured out that bergamot essential oil was her favorite scent.

The same client was also sometimes called “spoiled” when she cried and then was quiet once the staff put a vibrating hose around her body. I’d say she was making known what she wanted. She was using her independence!

With respect to independence as freedom, I, for one, think that self-determination is more important than self-reliance. For example, I get help with my personal care. I myself asked for this after I noticed that it cost me a lot of energy to do it myself. Even though I could, with a lot of verbal instruction, take care of my personal hygiene independently if I really needed to, I decided this isn’t a priority for me. My staff, thankfully, agree.

What is important to you where it comes to independence?

I am also joining MMA StoryTime’s Word of the Day.