Looking for Closure, Part 1

I scramble over boulders, some the size of small cars. My legs slip in between them; I twist my ankles. Trying to hurry, I trip multiple times and scrape my shins, knees, and hands. My backpack, now empty of food and water, slides around my back each time I pitch forward. I climb lower, entering the treeline, and make a futile attempt to use my cell phone one more time. I can’t stay on this mountain; the sun’s going down behind it. If I stumble into the trees and keep heading east, I should run into the trail again. But what if I don’t?

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Mt. McLoughlin, a nine-and-a-half thousand foot lava cone in the Cascade range and the Sky Lakes Wilderness, is about 45 miles from where I live. Being the amateur mountaineer I like to think that I am, I invite two friends to climb it with me. And when they call me, after I’m all ready to go, and tell me they won’t be able to make it, I decide to go anyway. Alone. Because I had planned to do it today, and I’ve wanted to do it ever since I moved here ten years ago. So I grab my backpack, already packed with water, a tuna sandwich, an apple, and granola bars. I get in my car and drive to the trailhead by myself. Because I’m under thirty and I tend to think that’s not a bad idea.

The last mile of the hike is a little strenuous, but I summit with about ten other people. I go to the front edge of it and gaze at the view of the Rogue Valley and beyond, all the way to majestic Mt. Shasta. McLoughlin itself is beautiful, almost a perfect cone shape, and I figure it’s the ideal place to do some journaling. When finished with my lunch, I pull out my notebook and get started.

After a while I realize I should probably head down. I look around and discover that I am the last person up here. I go back to where I think the trail is and can’t find it.  Hmm. I could have sworn it was on the back side. I decide to start down where I think the trail should be; I’ll probably find it soon enough.

It’s slow going as I pick my way down the steep rocky slope. I try to quicken my pace but don’t seem to be getting anywhere. I don’t recognize anything. I refuse to believe that I’m lost and continue scrambling over the boulders, descending the mountain as fast as I can.

Finally I have to admit to myself that I am nowhere near the trail. I am lost, and the sun is setting. The Sky Lakes Wilderness, a sea of trees, stretches before me. I can see a lake in the distance. All is quiet except for my rapidly beating heart.

I head east hoping to connect with the trail at some point. Even after I enter the treeline the large volcanic rocks still surround me, along with fallen trees. It takes forever to climb over and around them. My entire body is sore, and I am trying to remain calm as the light continues to fade.

After what could be a mile of boulders and trees, I hear talking. I see someone sitting on a rock along the side of the trail. I’ve made it! My idea of heading east worked! I climb over the last section of boulders and greet the two guys hanging out there. You get lost? one of them asks. Yeah, I was over that way quite a bit. I’m so glad I made it back to the trail.

I look at them then. They both appear to be in their late thirties. Strangely, neither one has a backpack. They look at me. A synapse fires in my brain, my heart skips a beat, and in a millisecond, I know without even thinking the words. They were waiting for me.

The “fight” part of Fight or Flight is not an option. I turn and immediately break into a full-out run. I don’t feel my rubbery legs and sore feet. I do not feel tired as I push my already battered body into a sprint for the next two miles back to the trailhead. But I don’t think about how long it is, or the fact that it’s getting dark, or whether or not I still have my backpack on. All I know is that I hear two sets of footfalls behind me, and I am running for my life.

At some point I think that I hear only one set still behind me, but it feels like the guy is breathing down my neck. From somewhere deep within myself I find my last reserve and take longer, faster strides. I keep going, propelled by adrenaline and the goal of outrunning my pursuer.

After some time, I think the only footfalls I hear are my own, pounding in my ear. I do not look back but continue on, slowing down a little to keep myself from vomiting. Finally I make it back to the parking lot and notice that there are only two cars in it – mine, and a beat-up brown sedan parked in the far corner of the lot. I look back at the trail and see no one. Fortunately I still have my backpack, and my keys are in it. Shaking uncontrollably, I get into my car and drive off. About a mile down the road, I choke back sobs, not daring to think of what my fate might have been.

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We hear news stories about people being lost in a forest or on a mountain.  Sometimes we think how scary that must be. And sometimes we find out just how scary it really is.

 

Action Is More Powerful Than Motivation

Nike’s “Just Do It” slogan was coined in 1988 at an advertising agency meeting. The founder of Wieden+Kennedy agency credits the inspiration for the slogan to the last words of Gary Gilmore (an American criminal who gained international notoriety for demanding the execution of his death sentence for two murders he committed).

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I have been a writer for most of my life. I loved the books my parents read to me as a young child, and I decided that I would write my own. At the age of five, I wrote and self-published (long before CreateSpace) my first book. I bound it and created a cardboard cover for it. It was a story about Snoopy and Charlie Brown going to the zoo, and I still have it. (These days, my sons tell me, it would be considered Fan Fiction.) Throughout grade school I wrote poetry and more stories, including a series of books about a mouse with a pink hat and her friends. In sixth grade, with the help of my parents, I self-published a novella, and wrote more poetry, short stories, and another novella in high school. I wrote my first novel as my capstone project my senior year of college.

Then real life happened, my sons were born, and I didn’t write much while raising them primarily by myself. I got back to writing when, out of desperation for information about autism in the teen years, I began writing TeenAustim.com. And several years ago, I wrote and self-published Slip, for which both my sons provided inspiration. Since then, I have been working on Enough to Go Around, which is in the editing process and should be published early next year.

But Enough to Go Around has been in the editing process for well over a year. In fact, the first draft was written during NaNoWriMo in 2008 – six years ago! I could come up with plenty of reasons why it was on the back burner so long; you can read about some of them here.

I had always been motivated to write this story. When I was eleven years old, I interviewed my father’s parents, who emigrated from Czechoslovakia almost a hundred years ago. They told amazing stories, and I knew even then that someday I would write a book about them. In 2007 I took a trip with my father and sister to Slovakia to do research for the novel. So why, if I was so motivated, has it been sitting for so long?

About three weeks ago, I was home on a Saturday and actually found myself with a little free time. And, without any thought, without any argument that I should be doing something else, I just picked it up and started working on it. Several hours later, I was still working on it and didn’t want to stop. I just did it, and that motivated me to do more. I could have spent the day cleaning the house (God, it needed it), I could have spent the day out wine tasting or relaxing (God, I deserved it), but I just sat down and turned on the computer, not thinking about the other things I “should” be doing. I picked up the printed manuscript with all my notes on it, and just did it.

My point in this post is that, yes, you have to have motivation to want to do something. You want it, you can visualize it, you can feel it within your grasp. Motivation comes first, that’s an undeniable truth. But without action, whatever you are motivated to do will sit there on the back burner. It becomes a “when” thing – when I’m finished with this work project I’ll do it, when the house is clean, when the holidays are over with, when my office is organized, when the kids are out of school, when I get back into a routine and can schedule it. There will always be a when. But taking action puts the whens on the back burner. And then we can do that thing we were always motivated to do but somehow didn’t.

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It makes perfect sense that an athletic shoe company would adopt “Just Do It” as their slogan. Not “Just Be Motivated.” Not “Just Try to Fit It In.” They chose something that is more powerful than motivation – they chose action. Works for me.

Awakening the Heart: Patience

011Part 3 in a series of posts about improving any type of relationship by practicing basic Buddhist teachings, based on a non-residential day retreat taught by the lamas at the Buddhist temple where I used to work. The six basic Paramitas (a word which means ‘going beyond’): generosity, ethics, patience, diligence, meditative concentration, and wisdom. For this series of posts, I have been writing about the first three Paramitas, which focus on our relationship with others (the second three Paramitas, equally important, have more to do with our inner selves). [Read Part 1, Generosity, here]

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If you thought the previous post, Ethics, was hard, brace yourself for patience. When we think of patience, the first thing that comes to mind is waiting in line at the grocery store or maintaining your composure when your young child asks “Why?” for the twenty-eighth time that day. But patience is much more than waiting or grinning and bearing.

It involves endurance and forbearance, and as such, is about strengthening ourselves. When I first heard this tenet, it resonated with me on a deep level. At the time, I was dealing with some very challenging behavior with my young adult son (who has autism, epilepsy, and bipolar), and I realized how important the concept of strengthening was for me. I wondered what on earth I could do to strengthen myself even further, since I figured I had already developed an excess amount of patience over the years. What more could I do? How could I continue to live with the emotional and verbal abuse?

I learned that I could start by “demilitarizing” myself on the inside. According to the Buddhist view, we are victims of our emotions unless we notice how we express them. We must be present, alert, and aware. And we should try not to aggravate the situation by thinking negatively.

For example, my son’s worst episodes of abuse (directed at me) occurred before his bipolar was diagnosed and managed by medication. Negative thinking caused me to lash out in my defense, and to take personally the ugly things he said. I wasn’t realizing that the malfunction of his neurotransmitters had caused it.

This, of course, doesn’t mean that we should just continue to take the abuse. We need to know when it is necessary to defend ourselves and to what degree. When we are in danger of being harmed physically, we should get out of the way. When we are at a point of lashing out, we should leave the room.

The hardest thing is to be patient with a being who causes hurt to ourselves or others. Patience is an antidote to anger, aggression, and aversion, which are obstacles to peace and harmony. Buddhism teaches that the anger is the enemy, not the person. We need to investigate the nature of the one causing harm before taking it personally. Perhaps a loved one had just died. Perhaps they just lost their job or their home. Perhaps they are in pain or have an untreated disorder. This doesn’t excuse or justify the behavior, but it could explain it and help us to find ways to alleviate it.

One of the central teachings of Buddhism is that suffering is a part of life – it’s a universal condition. “Be kind, for everyone you meet is fighting a hard battle,” (attributed to several different sources), is highly applicable here. In my case, my son’s behavior improved for a while, then became abusive again. It was a huge part of why I pursued having him receive supported living services while moving him into his own apartment. I was getting out of the way, strengthening myself. And it worked.

Transition Check-In: Something Between Us

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There’s a ride at Disneyland that most of us have probably been on – The Haunted Mansion. I loved it from beginning to end, even though the first few times I went on it I was scared (but, you know, in a fun way). I always loved the end of the ride when the projector ghost would show up in your carriage. “Beware of hitch-hiking ghosts!” the narrator would say. My siblings and friends (and later, my sons) and I would sit as far apart as we could to make room for the ghost. We’d lean into him or pat his head.

So, metaphorically, I like to think that we should always leave room for something between us (besides ghosts). Like fun memories. Shared dreams. Phone calls and texts. A strong connection. And love.

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I was 19 years old when I decided to move into my own apartment. I had a roommate, one of my coworkers at the restaurant where I waited tables, and we split the bills. I was also taking a full load of college classes. My parents did not exhibit much confidence in me when I moved out, and I’m sure they breathed a sigh of relief when a few months went by and I hadn’t asked them for any money, when it became apparent that I was swimming and not sinking.

Now, 24 years later, it has been six weeks since Nigel moved into a supported living apartment, and I am just beginning to exhale. Last year at this same time, he moved into a supported living home, a euphemism for group home, and within the first two weeks it was obvious that the move had been a huge mistake, that it was entirely the wrong placement for him for a multitude of reasons. He was back home within two months.

So when plans were being made for Nigel to move into the apartment, there was certainly some amount of concern on everyone’s part. His ever-expanding vocabulary belies him, as his emotional age has plateaued at around age 11 or 12, and he requires assistance.  He receives daily support from a local organization called Living Opportunities. They pick him up and take him grocery shopping with his food stamps, they take him to doctor appointments, help him do laundry, and remind him about hygiene and taking his meds. I pay all of his bills out of his Social Security money, for which I am the representative payee. He receives “walking around” money in cash every week, and in a couple of months, we may progress to a debit card. He rides his bike to and from his GED class at Goodwill a few times a week and is doing well with that. Once a week I go to his place to make dinner with him or take him to a restaurant, and on Saturdays he comes to the house to spend the night with his family.

Two weeks ago I discovered that he had used up a month’s worth of food stamps in two weeks. His support staff only take him to the grocery store and help him through the process, but they do not tell him what or how much to buy. It pained me to see the bottles of an 8-pack of red Gatorade strewn around the living room, along with the empty red Jell-O cups, Chips Ahoy! bags, popsicle wrappers, and yes, a box of Twinkies. God only knows what he bought and consumed that I didn’t see.

So after some by-no-means-gentle admonishments, I was relieved when I discovered that he still had some of the decent food that he had bought with me on his first grocery trip. He had plenty of bread and butter for toast. He had cereal and milk, eggs, carrots and apples. So I told him that he had to use his weekly cash amount to buy healthy food for dinner instead of craft supplies, Lego, parts of his Halloween costume that he has been planning for four months, and Slurpees.

He seemed to understand. The situation was not dire, and I was not going to bail him out. We are now six days away from his next food stamp payment, and he’s going to make it. Last week when I went to his place for our weekly visit, I asked him how he felt things were going being in his own place, and in his wonderful, inflection-less voice he said, “Well…I’m learning a lot.”

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Nigel and I don’t talk every day (per his request), but we do text. And I find that when I go to see him, there is this unspoken understanding between us. He is calmer, content with his autonomy. I am calmer, reclaiming mine for the first time in almost twenty years. There is of course the parent-child connection that will always be there. But there is something else between us. There’s a sense of joint validation that we have come through something together. And while we have a great deal more on this road ahead of us, and at the same time are obviously taking steps in our own directions, that shared experience keeps us connected as we move forward.

I’m sure there will be more debacles similar to the food stamp crisis, more stumbles as he forges his own path. More learning to do. But he will be all right, Twinkies and all.

 

Awakening the Heart: Ethics

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Part 2 in a series of posts about improving any type of relationship by practicing basic Buddhist teachings, based on a retreat taught by the lamas at the Buddhist temple where I work. The six basic Paramitas (a word which means ‘going beyond’): generosity, ethics, patience, diligence, meditative concentration, and wisdom. For this series of posts, I will be writing about the first three Paramitas, which focus on our relationship with others (the second three Paramitas, equally important, have more to do with our inner selves). [Read Part 1, Generosity, here]

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Merriam-Webster defines “ethics” as such:

ethics: an area of study that deals with ideas about what is good and bad behavior | a branch of philosophy dealing with what is morally right or wrong

That’s a pretty general description. How, then, does the topic of ethics apply to interpersonal relationships? Buddhism has a few things to say about that.

Ethics in this context is not about judgment between right and wrong, good and bad, and whether someone is or isn’t. In Buddhism, ethics is more about refining, sort of like editing a piece of writing. We take a closer look at our conduct, how we relate to others, and noticing both of these things. After that, ethics refers to what we do about it.

In doing so, we develop a vigilance about our behavior. This does not mean that we nit-pick or brow-beat ourselves for every mistake. Mistakes are useful for us because we learn from them! A rather obvious concept, one I’m sure you’ve heard before, but so difficult for us to embrace.

Of course there are different levels of “mistakes.” One could say that consuming caffeine before bedtime is a mistake. One could also say that driving drunk and causing someone’s death is a mistake. In that case, “mistake” is a tremendous understatement, but one would hope that those responsible for such a tragedy would learn from it, at the very least. There are unfortunately those who don’t seem to learn from their mistakes. Perhaps it is because they have not developed a vigilance about their behavior. Learning from mistakes usually requires changing our behavior, and some people (of those who have the ability to do so) choose not to.

When we take a closer look at our behavior, the refining part of ethics also teaches us to adopt what is beneficial and reject what is harmful. We let go of what doesn’t serve ourselves or others. It sounds lofty – “what doesn’t serve ourselves or others” – but how does that translate in the real world?  Certain emotions spring to mind – jealousy, anger, resentment. Gossiping fits the bill. Excess TV-watching. These are not “bad” or “wrong” things, as the dictionary defines ethics. But if we are refining our behavior, we might question how these things are serving us.

On the flipside, beneficial behavior would be acceptance, forgiveness, and motivation. Don’t be jealous because your co-worker bought a new car. Look at your behavior (spending vs. saving, industriousness to increase your income vs. excess TV-watching) and be motivated. If she can afford something she really wants, you can too. Refine your behavior. Adopt what is beneficial.

As there are different levels of mistakes, there are different levels of difficulty in letting go of what does not serve you. For example, if you had been abused as a child, of course you have the right to be angry and resentful. You have every right to feel that way. But, ultimately, how do those feelings affect you? Does continuing to be angry make the pain go away? If anything, it only adds to your pain to hold onto it. Letting go of this level of pain requires much work and/or professional help, but it is worth it for your well-being. Reject what is harmful.

Everything we do affects the world around us, including ourselves. Our lives are interdependent, which is why refining our behavior, adopting what is beneficial, and rejecting what is harmful are decisions worth making. And actions worth taking.

Transition Check-In: The Keys to Supported Independence

If I had written this post just one week ago, it would have been titled “Transition Check-In: The Waiting Game,” because that’s where we were, where we have been, where we thought we would be for at least year two years, waiting for Nigel’s HUD to go into effect. I thought we would have to wait for that to happen before we could set him up in his own apartment with support from Living Opportunities, a local nonprofit organization that helps adults with developmental disabilities to live their lives as independently as possible, while offering assistance in any form that is needed. They have already begun to provide services for Nigel while he is still living in my home, taking him to appointments, helping him to organize his living space and his time. They are very professional and specially trained to handle various needs, personalities, and preferences. They focus on presuming competence and facilitating independence. In fact, they even provide services for a few people who do not communicate with speech, but with supports in place are able to be in their own apartments. Without this support they would undoubtedly be placed in group homes, sharing a small room with another adult. It’s amazing and wonderful what Living Opportunities does. We are so blessed to have this organization in our area.

Last summer, when I moved Nigel back from the group home, I was advised to apply and get him on the waiting list for HUD, which I did. I didn’t realize that in doing so, he would also be on the waiting list for several apartment complexes in our area that offer certain units for low-income tenants who are waiting for their HUD approval. A couple of weeks ago, I received a letter in the mail that one of these units was available.

I called the Housing Authority office to let them know that we were interested, and they said that they had sent that letter out to about 20 people. With Nigel, I drove by the place anyway, just to see what the complex looked like. It was new, quiet, and definitely not Crackville. Nigel agreed that it looked like a nice place to live. Unfortunately I had a very busy week and was only able to call about the apartment the day before the end date for applications, so I figured the apartment would go to someone else, and we would wait for another one of these apartments to become available.

But a week later, the Housing Authority office called me. They said that Nigel was next in line. I asked if that meant there was one person ahead of him and they said, No, he’s it. He’s the next one eligible to apply if he still wants to. And the very next day we went down to that office and filled out the application with me as the co-signer.

Four days later, they called and said the apartment was his! We are going in next Monday to sign the lease and get the keys, the keys to Nigel’s autonomy that he needs and so rightly deserves. The keys to the space for his massive Lego collection, the privacy to act out (in costume) scenes from his favorite movies, and the satisfaction of not having his mother telling him when to shower or take his meds (the support providers will do that when they check in on him every day). (!!!!) And these same keys are also the keys to my relief, to being able to focus on Aidan’s last year of high school next year, and to regaining my sense of self that has been shelved for so long I don’t even know what that self was. These are the keys to rediscovering her.

It’s another big step, probably the biggest, in Nigel’s journey to and through adulthood, a journey to which I have devoted much time and energy. He will have all the support he needs through Living Opportunities, he will spend time with family members at least twice a week, and I am always a text or call away.

Moving Day is in three weeks, when the rubber really does meet the road. It’s the start of something that I would have thought impossible just a few short years ago. But if I look at his trajectory, the journey we’ve been on to get here, every challenge he’s faced or taken on, I shouldn’t be surprised. This is the boy who, at the age of five, could not say his name when a doctor asked. This is the boy who could not go into stores, movie theaters, and restaurants because his sensory issues overwhelmed him. This is the teen who needed a modified diploma because, although he understood the material, he could not handle the volume of work.

But he made it through high school, and he walked across the stage to receive that diploma while his classmates cheered. He was voted “Most Likely to Survive a Zombie Apocalypse” by his senior class. He spent time getting to know a girl and he asked her to prom and she said yes.

When he said, two weeks ago, I don’t think I’m ready for this, I told him, “You can do this, Nigel.” And with the supports in place, I know he will.

 

Image courtesy of Wikipedia

Awakening the Heart: Generosity

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Part 1 in a series of posts about improving any type of relationship by practicing basic Buddhist teachings

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After almost 15 years of managing accounts in the fast-paced, demanding office of an order fulfillment company, I landed a job at the complete opposite end of the stress meter. For almost a year now, I have been the Office Coordinator of a Buddhist temple.  I work with wonderful, compassionate people in a peaceful environment with two wise, funny, and amazing Tibetan Lamas. Last year they conducted a non-residential day retreat to teach the six basic Paramitas (a word which means ‘going beyond’): generosity, ethics, patience, diligence, meditative concentration, and wisdom. For this series of posts, I will be writing about the first three Paramitas, which focus on our relationship with others (the second three Paramitas, equally important, have more to do with our inner selves).

Generosity, the first Paramita, is more about how we give than how much. One of my favorite quotes of the whole teaching retreat is “We have a fondness for imagining that we are poor and occupied at all times.” How true is that?! When the lamas said this, everyone laughed with the recognition that we all do exactly that. How many times do we talk about how busy we are, as if it’s a contest? How many times do we complain about not being able to afford something?

But knowing this about ourselves, that we believe we are poor and occupied at all times, makes generosity that much more meaningful. Being generous is more than giving a gift, donating to a cause, or volunteering at a soup kitchen. It’s about the attitude we bring to it, the hold that we have on whatever we’re giving – money, objects, or time – or the expectations of how our generosity should be received.

We probably all know someone who gives things to people with conditions attached, usually along the lines of “take care of this in case someday you no longer want it and I’ll take it back.” If we’re going to give something to someone, whether old or new, we must release the hold we have on what we view as ours. Practice letting go of the object and give fully, without attachment.

Perhaps the most difficult thing of all to accept and practice is to give without expectation of the results. That means giving teenagers $75 for their birthday and expecting them to buy a jacket or something else they might need, and you’re bothered by the fact that they decide they want to invite their friends to have a pizza party and race go-karts. Or they give some to a poor friend who needs new shoes. It means helping someone by loaning them money and not expecting them to do something for you, like helping them to move or fix their computer, as thanks. It even means not expecting thanks – some people might have disorders that make it difficult for them to say thank you, or remember to say it, or they’re embarrassed.

And it’s logical to think, “Well, if I give them something and they can’t even say thank you, they should be embarrassed.” But the word generous means “free in giving,” and even if someone should say thanks, which is the socially expected thing to do, we are not being truly free in giving if what we give comes with conditions and expectations. If someone doesn’t thank you or reciprocate and this bothers you, you can simply choose to stop giving to that person if you want to.

The lesson here is that no one should feel forced to do anything. No one’s saying they should keep giving if they don’t receive anything in return. This is just food for thought about what it really means to give without expecting anything – keeping the object in good condition in case they can give it back to you at some point, giving money saying that it can only be spent how you want it to be, even receiving a thank you – in return. I know, I’m there with you – it’s a concept that is difficult to understand, let alone embrace, but that’s why it’s a Paramita – it’s ‘going beyond’ what we know, and what we believe. No one’s saying we have to do this. But what if we did?

 

Hope: Is It in You?

In the past week, I have met with a Vocational Rehab counselor, written a visual support social story about going to doctor appointments, created multiple visual support schedules, and contacted an agency that provides long-term in-home support for people who need assistance meeting their needs. Last week, I left work and picked up my 19-year-old son and took him to sign paperwork for his case manager – twice, because the first agency that was supposed to provide the in-home support fell through, so my son had to come in and sign another release authorization so that his Functional Assessment could be sent to the new agency. His previous case manager asked if we could go to her office to sign some other freaking paperwork. She offered to mail it and I said Yes, please. Next week, I go to our state capital for a six-month course I’m taking called Partners in Policymaking (more about that here). It’s a four-hour drive one way, and I do this every month, so that I can learn how to help my son have the most fulfilling adulthood possible.

This is some of what you do when you have a child with a disability and they are transitioning to adulthood. Other parents have to change their adult child’s diapers, or feed them by hand, brush their teeth, help them bathe, or carry them up the stairs. Others look at residential homes for their child, as I did last year. And when they’ve been there for two months and the caregiver calls you and says, “He’s not functioning here,” you have to move him again, back home, and then the process starts all over as you try to find something else.

I go out in the community and see my son’s previous classmates. They are also 19 years old and working their way through college. Some of them live at home still. But they register for classes themselves and take themselves to dental appointments and don’t have Functional Assessments and their parents don’t have to constantly leave work and pick them up and drive them to various agencies to sign release forms. If they have to sign anything they go and do it themselves.

I have been doing this – parenting a child who has had years of therapy appointments, IEP meetings, behavioral challenges, and other issues too numerous to list – by myself for 15 years. And it’s not over yet. It may never be over. I don’t think there is a word to describe how I feel. Exhausted doesn’t begin to cover it. Drained is part of it, but there’s more to it than that. And I have another child, so I know that when there’s no disability involved, you still have to do all the regular things that parents do for their kids, but it’s so much easier. Believe me, it is.

I’m guessing there are other parents out there who feel as I do. And I don’t like to write about it because the last thing I would want is for my son to feel that he’s been a burden to me. He has taught me many things, and I am a better person for it. It may not sound like it, but I’m very grateful. In fact, it’s not so much him and helping him to meet his needs as it is doing it by myself. If being a parent is “the toughest job you’ll ever love,” what is being a single parent? What do you call it when you’re still doing it and your child is an adult?

I realize that I’m not sounding very gracious, like I’m feeling sorry for myself. Maybe I’m venting. But something’s got to give. When you don’t see a light at the end of the tunnel because the tunnel never ends, how do you keep going? I meditate (when I can fit it in), I pray, I have a mantra that I say to myself throughout the day, I go to support group meetings, but I feel like I have nothing left, like this rodeo has kicked my sorry ass, and I have to keep getting up and getting back on that horse, over and over again.

And somehow I do. I push through it and keep going, with a little venting, a lot of patience, and the hope that I’ve got it in me to continue.

 

Image courtesy of www.http://fccowasso.com

Are Special Needs Actually Special?

spe·cial

adjective \ˈspe-shəl\

: of a particular kind

: peculiar to a particular person, thing, or purpose

: unusual, exceptional

: especially important or loved

-          New American Webster Dictionary

Back in the days when I had time to write more than one post a month and actually read other peoples’ blogs, I came across somebody’s post suggesting (boldly, I thought, and perhaps rashly) that special needs aren’t special. And I couldn’t figure out if I was offended or simply indignant, but I do remember thinking, That’s ridiculous. Of course special needs are special! My son needed full-time, one-on-one assistance in the classroom – that’s a special need! For years my son needed laminated cue cards in order to communicate – that’s a special need! At age 19, he needs me to keep track of all of his appointments, finances, medication, and hygiene – special needs, I tell you. I could not see how anyone would think otherwise.

But due to the fact that my son, who has autism, among other disorders, recently said this to me: “I don’t like it when you say ‘special needs’ or ‘developmental disabilities’ about me. It makes me feel like I’m incapable of doing things,” I have spent the last few months trying to find an acceptable alternative (since he vetoed ‘differently abled’ and asked, “Why is it so important to you?” when I pressed for his preference).

And so I refrained from saying “special needs” in his presence even though I continued to use it when he was not around. In all honesty, I’ve never really liked it. After all, “our” kids are not any more special than anyone else’s kids, or our other children who don’t have disabilities, for that matter. But some of our kids’ needs are special. Of that I was certain.

And then last month I started attending the Partners in Policymaking program. A 6-month leadership training program for adults with various types of disabilities and parents of children with disabilities, it exists in 46 states. Partners in Policymaking makes participants better advocates for themselves, their family members, and the greater disability community. I highly recommend that everyone should attend it at any point in their parenting journey. Why? It will rock your world. It will turn everything you ever thought about disabilities and “special needs” upside down, no matter how many rodeos you’ve been to.

So why aren’t special needs special? Because we all have the same needs. I know this is revolutionary, so bear with me. We all need to:

-Be loved and appreciated for who we are
-Be safe, well, and comfortable
-Communicate
-Get around
-Have autonomy
-Have friends
-Have a creative outlet

Some of us can meet these needs without any assistance. And some of us need support to have these needs met. But that doesn’t make them special – because they are the same for all of us. Some children (or adults) need assistance so that they are safe (tracking devices, locks and gates), comfortable (weighted blankets, sound protection, head support, etc.). Some need support with communicating (voice devices, iPads with apps, PECS cards). Some require a power chair, medical transportation, or other assistance with getting around. But the need is to get around, the need is to communicate, or be safe, and that is not special. We all need that, unless we want to say that we all have special needs.

My son requires support in meeting several different needs, but his needs are not special. I have the same needs! I just don’t need assistance in meeting them (most of the time). It may have taken me a while to get to this point, a point where I’m ready to embrace an idea that just a few years ago made no sense to me at all, but I’m here. And I’m here because my son told me, in no uncertain terms, that it was time to change my entire way of looking at his needs: “It makes me feel like I’m incapable of doing things.”

I’ve been in the parenting trenches a while now, feeling like I’ve earned some kind of a badge, like I’ve got this. But the old adage is true – I’m learning that I still have a lot to learn. And I probably have at least a few more rodeos, too.

 

Image courtesy of Wireandtwine.com

Roller Skating in the Different Lane

My first pair of roller skates, a gift for my eighth birthday, looked very similar to the ones in the picture except the toe clamps on mine were a bit larger and covered with red vinyl. I loved having roller skates. We lived at the top of a hill in a suburban residential neighborhood in L.A. County, and I would skate down the hill on the sidewalk, occasionally crashing on random front lawns when I got going too fast (notice the absence of toe brakes on these things). I would spray WD40 on the metal wheels when they got so gunky they wouldn’t turn evenly. But after a while that didn’t help much.

And then Xanadu came out when I was almost 10. I wanted nothing more than to have a pair of leather shoe skates, preferably white, like my friends had. I was as embarrassed by how my old metal skates looked as much as I was frustrated by how often the wheels got stuck. After a while a friend of mine received a new pair of skates for her birthday and offered to give me her old ones. They were white leather shoe skates with orange wheels and toe brakes! I was ecstatic and figured with these skates I would finally be able to learn to skate backwards (impossible to do when wheels get stuck).

I had to loosen the toe brakes and turn them around because my friend had worn them down to nearly nothing on the front. But for a girl who had managed for almost three years with no brakes at all, it wasn’t even an issue. They did, however, come in handy while learning to skate backwards. I would spray WD40 on the wheels and man, those skates were fast. They were a bit big, though. I had to stuff the toes with paper towels so that my feet didn’t slide around too much. By the time I grew into them, the toe brakes were completely gone and I had started using the sides of the wheels to brake, so the wheels were getting lopsided and I would thunk, thunk along instead of roll.

And finally, I think for my twelfth birthday, I had my own pair of new white leather shoe skates. They were beautiful, and they fit me for about a year. And when I grew up and had kids and my nine-year-old son indicated an interest in roller skating, I bought him inline skates that were adjustable (I specifically researched this). Because I had learned a few things from roller skating, and not just the need for them to be adjustable.

I learned that sometimes one skate is operating fine and the other skate becomes stuck. One skate is going along, functioning, and the other skate has some issues. The other skate is a long-term single parent. The other skate has a special needs child, or a spouse with a terminal illness, or a family member with an addiction. The other skate has lost its job or has a significant disorder. And so, gradually and over time, the other skate gets stickier and stickier, until you have no choice but to drag it along or to go in circles.

Sometimes you can trade off doing those things for years. For a while you keep dragging the stuck skate, trying to move forward. Then you get tired so you let the stuck skate stay put while you keep making half-circles around it, wishing that it would become unstuck. Finally you sit down and put a bunch of oil on the stuck skate. You’ve already done that, but you can’t think of anything else to do. So you get up and drag the stuck skate so you can keep inching forward.

But there’s something interesting about that. In order to keep moving forward, you have to push off using the stuck skate. You go forward a ways and then you have to position yourself so that the stuck skate can provide the leverage to propel you forward again. Yes. The stuck skate can actually help you move farther (and in a different direction) than you would have otherwise gone.

So accept that your stuck skate is the way it is. For however long it will remain in your life, learn to work with it. You are stronger because of it. And without it you wouldn’t be the person you are today.