Tag Archives: Transitions

Dear Transition

Like I said a few weeks ago, I bought the 22-day life transitions journaling workbook. I didn’t use it consistently, so I only finished the first day’s exercise and read the one for day two. It sounded particularly hard to me, but today, I’m trying to take up the challenge. The assignment is to write a letter to the transition in your life, in my case, the move out of the institution. You should be as honest as possible and can rant all you want. Then, let the transition respond. Here goes.

Dear transition,

Screw you, why do you have to happen? Why can’t things just stay the same. I know that’s not ideal, but that’s all I’ve known for the past 8 1/2 years. This institution life feels safe. Call me dependent all you want, I don’t care. I don’t know what happens when I leave the institutio. I fear I’ll fall flat on my face and not be able to cope.

Besides, I never planned on living independently again. I never learned to cope in a less restrictive environment, because that wasn’t the goal. Even since it’s been the goal that I live with my husband for the past 1 1/2 years, I still never learned to cope. I tried an afternoon at home here and there, but I still feel utterly overwhelmed when I’m at home for longer than a few days.

I don’t know what you expect of me anyway. My husband wants me to live with him, but I don’t even know wha the expects out of me. He probably expects me to take care of some housekeeping, which I haven’t done i years. Evernything else is uncertain too. I haven’t found day activities, haven’t been accepted by the mental health agency. I know you will happen – I will move in with my husband -, but I don’t even know when. So stop bothering me.

Astrid

Dear Astrid,

You sound angry at me. I’m sorry about that, because I never meant to piss you off. I am uncertain, I know, and I know that scares you. I know your control has been taken away by the psychologist, who decided seemingly arbitrarily that this is the point at which you need to stick to your decision. Then again, she’s right. You can’t waste your life away in the institution, and i know you don’t want to either. It may feel safe now, but safety isn’t all you need. You want to develop yourself, too.

Try to be confident that your treatment team will put a safety net in place should you not be able to cope. Try also to focus on the opportunities I will award you. I know you have so many dreams that you sometimes don’t even want to write about. I know that I won’t guarantee you that you’ll be able to make your dreams come true, but sitting on your butt in the institution certainly won’t make them come true. Try to stop dreaming and fearing and start living. Good luck.

Your transition

Transitioning: The End of the Tunnel

On May 1, Mari L. McCarthy started the 22-day life transitions journaling challenge. I didn’t sign up, since I had just failed on committing to the whole health challenge in April. However, today I bought the challenge eBook – from KObo, not Mari’s own site, since it’s much cheaper on Kobo. Since I am about to start in what may be the most important transition of my life, I thought I’d try my hand at the challenge. For day one, we’re supposed to meditate on where we are right now and where we want to be headed.

I visualize the point where I’m now as being at the beginning of a tunnel. It’s not necessarily a dark tunnel, but I can’t see the end of it as I look into it. Nonetheless, i know it will end somewhere in the tiny village, in my husband’s and my home. I can only head this way, but since I can’t see what’s inside the tunnel, I cannot see what’s going to come onto my path as I head into the tunnel. I know where this will end, but I don’t know how or when. After all, no definite date has been set for my discharge from the institution. Though I will have the “kitchen table talk” with the social consultant on Monday, right now I have no idea how I will cross this tunnel and what I’ll find at the end of it.

I can however hear my husban calling me from the other end. I can hear him cheer me up that it’d be so great and utterly exciting to be together at last. I can hear my psychologist and social worker on my current end of the tunnel telling me that I wanted to go into it and come out at home. Even as I sit here, more than a year into the process of arranging for my transition out of the institution, I still am not sure that this is really what I want.

Sometimes, I idealize the end of the tunnel, what it’ll be like to be home. I see my husband lovingly embracing me. As he takes me into his arms, I know that I’m happy being with him and this was the best decision I could’ve made. I go to day activities. My psychologist already shot the snoezelen idea I came up with a few months ago, so I’ll go swimming and doing yoga and going for walks instead. I will meet some nice people at day activities or through the community. I’ll be much more independent than I am now, being able to do some cooking and cleaning on my own. I’ll eventually take up some classes again. My husband loves me when he comes home from work and we’re both happy.

At other times, such as right now, I devalue the end of the tunnel. I look at it as one dark pit in which I’ll fall. My husband and I constantly step on each other’s toes. When he’s home, I’m annoyed by him and he’s annoyed by me. When he’s at work, I’m at home alone sleeping the day away or daydreaming of harming myself. I don’t even have my blog anymore, since my husband doesn’t want me to write about my life at home and I can’t think of anything else to write about. I have nothing left except myself.

However, I will get through. I say this so that even if I don’t believe in it now, I won’t leave a bad omen by being all negative. I will make this transition and it may be hard, but it’s also good. No matter what, my husband loves me.

Transitions: Moving Out of Student Housing

One of today’s prompts for Friday Reflections is about moving out of your last home. I have not truly lived in a home since being institutionalized nearly eight years ago. Before then, I lived on my own for three months in a student housing apartment. For this post, I am going to write about moving out of that home.

I was admitted to the psychiatric hospital suddenly in the middle of the night on NOvember 3, 2007. I also couldn’t be sure then that I would never return to the student housing apartment, although the psychiatrist admitting me did say so more or less. The apartment, like I said, was from student housing. This meant you needed to be in college in that city to be allowed to live there. I formally quit college three months into my stay at the psychiatric unit, but persuaded the student housing corporation to let me keep the apartment for a while, then was never given an eviction notice. I held on to the apartment until I could no longer afford it, which came when my long-term care copay was increased in May of 2010.

I was by now relatively stable and had moved from the acute unit to the resocialization unit. I was sure however that I’d not return to this home. I formally left the student housing accommodation on May 3, 2010. It wasn’t a coincidence that this was exactly 2 1/2 years after my admission to the hospital, as long-term care copay started at one year in a facility, you pay the low copay for another year and my social worker applied for an extra six months of the low copay for “resocialization into the community”.

Interestingly, I don’t remember much about letting go of my student housing apartment. I remember the packing. Because we packed rather inefficiently, some boxes were over 10kg and others were just five. I sent them to my parents, so this matters, because you pay extra for sending boxes over 10kg. I remember the argument with my parents (and especially my sister) because I wanted to get rid of my old keyboards that I’d gotten from my grandma. I also remember getting a friend of a nurse to take the stuff I no longer wanted to the garbage collection place. (I can’t believe I trusted that man, whom I had never met, in my home even with the nurse accompanying him.) I didn’t want my husband (who was still my boyfriend then) to help me much, so he did some packing and lots of cleaning. We probably left the apartment cleaner than I’d gotten into it.

Moving out was a bit emotional of course, because it meant, or so I thought, letting go of the idea of living independently. Roughly at the same time that I handed in the keys to my student housing apartment, I handed my parents my key to their old home, which they were selling. This signified my letting go of the home in which I’d grown up. It also signified my letting go of the idea that my parents would always be there for me. Not that they were. After all, since I’d moved into the student housing apartment and especially since I’d been institutionalized, they felt I had now grown up and should take care of myself. I almost said it signified that my parents were no longer the most important people in my life. This is true in a way, because a month after this, my boyfriend proposed to me.

In many ways, moving out of student housing was bittersweet. It was freeing, because it helped me let go of the requirement that I be in full-time college. It also in some ways made me sad, having to let go of the hope of being in full-time college again. The same goes, to a lesser degree now, for living independently. Of course, I plan to go live with my husband, but I didn’t know this back then. Moving out helped me let go of the requirement of living independently, but it also sort of crushed the hope of my living independently again, at least until my husband and I got our current apartment.

As you can see, my moving out of student housing was in many ways a transitional point in my life. It helped me make the transition from daughter to girlfriend and eventually wife, but more so it helped me become my own, independent self. This seems a bit paradoxical, but what I mean is, I no longer held my parents respnsible for making my decisions, and I didn’t hold my boyfriend responsible for making my decisions either. At least not yet. Unfortunately, now that I’m married, I have fallen a bit for the habit of holding my husband responsible for my decisions. I don’t believe in the submissive wife type of bullcrap, so I need to let go of this habit.

Reflections From Me
Everyday Gyaan

Parents’ Dreams and Expectations for Their Disabled Children

Today, Ellen from Love That Max wrote about wondering what her disabled son would do when he grows up. I wrote about this last week. As I said then, I knew early on that I’d become a normal or even above-average college student and later employee when I grew up. Up till age eighteen at least I didn’t show any inkling of thinking I’d not meet this expectation. I know that I had worries at night about burning out at my first job (as a teacher) and returning to the workforce several years later at an entry-level administrative position. I didn’t share these thoughts. I shared my dreams of going to the United States on a college exchange student visa and never returning. Cause, you know, with affirmative action and all my minority statuses, I’d surely get a green card. Sure!

Ellen shares her son’s similarly big dreams. Max will become a fireman when he grows up, and not only that, but he’ll live at the fire station. Ellen knows this is an unrealistic dream, but then again, maybe not. She refers to a news story about a man with an intellectual disability practically living at a firehouse. In similar ways, my parents probably knew the moving to the U.S. dream was unrealistic, but they tried to keep a positive attitude. I appreciate that

What I also want to say I appreciate, is that Ellen doesn’t turn Max’s big dreams into expectatiosn for him. I don’t know whether my parents truly believed I could go to the U.S., but they made it seem lke they did and they were half-expecting me to actually pursue this path.

With disabled children, more so than with non-disabled children, you need to walk the fine line between not encouraging them enough to dreaam and follow their dreams, and turning their biggest dreams into your lowest expectations. I like it that my parents looked up the subsequent cities I was obsessed with living in once in the United States and encouraged me to learn about these places. That is encouraging a child to dream. However, I’d have liked it if my parents helped me do some realistic planning. This doesn’t mean saying: “Girl, you’ll go live in an institution and do day activities there.” I’m pretty sure that, with the right transition planning from me, my parents and the staff at the training home I lived in for eighteen months, I could’ve come far closer to my dreams than I’m now. Then again, I’m relatively happy now – happier than I was when dreaming of the United States.

One last thought, which I’m struggling with. Your idea of success as a parent is not the only conceivable norm. I know that as parents, you have limits too, and, particularly if your child is above eighteen (or 21), you have a right to these limits. You don’t have an obligation to care for your child past this age. In this sense, I can only hope that parents of disabled children have an appropriate transition plan in place before their child turns eighteen. I can only hope they accept their children no matter their path to success, but I still understand that this is not something a child, disabled or not, can enforce.

Worrying About Your Disabled Child’s Future

Today, I came across a post by the mother of an adult with Down Syndrome on the topic of birthdays and more specifically, crying on your child’s birthday because you’re worried about their future. I left a lengthy comment, on which I want to expand here.

My parents probably cried on my birthdays too. At least they were usually emotional. I don’t know whether they worried about my future, but they sure thought about it a lot. I survived the neonatal intensive care unit with several disabilities, some of which wouldn’t be diagnosed until many years, decades even, later. I had had a brain bleed, retinopathy of prematurity, and a few other complications. My parents knew soon that I would be severely visually impaired, possibly blind. I don’t know whether they knew or cared about my other disabilities.

My parents started thinking about my future early on. They started communicating to me about my future early on. At age nine, I knew that I was college-bound and had to move out of the house by age eighteen. I don’t know whether it’s normal to plan so far ahead for a non-disabled child. My parents didn’t do this with my younger sister as far as I know.

It is understandable. With non-disabled children, independent living and college or employment are the default. Positive parents, we’re told by the disability community, keep the bar of expectations high, so they expect the same from their disabled children that they do from their non-disabled children. To be honest, I hate this attitude, which sends the message that to be successful is to meet up to non-disabled standards. We aren’t non-disabled, for goodness’ sake.

Let disabled children be children please. I understand it if parents worry about their child’s future, especially in societies that don’t have socialized health care and if the child is severely disabled. I understand that these worries get somehow communicated to the child. There’s no way of preventing this. What you can do, is minimize the worrying as much as posoible and turn it into positive but also unconditionally accepting encouragement.