5 Questions for a Parent of a Child with a Rare Seizure Disorder

Hope for a Sea Change cover art

Sometimes Life in the Different Lane pushes you further than you ever thought you could go. I’m honored to interview my friend Elizabeth Aquino, author of the memoir Hope for a Sea Change and A Moon, Worn As If It Had Been a Shell, her blog. The exquisitely written Hope for a Sea Change chronicles the first year of her experience with her daughter’s life-long struggle with epilepsy. I am indebted to Elizabeth for her candor, openness, and generosity in doing this interview.

1. You had mentioned that you came to like people you “wouldn’t otherwise have dreamed of knowing or even liked.”  What other aspects of having a child with a disability have you experienced that you wouldn’t have if Sophie weren’t in your life?  

I honestly look on my life before I had Sophie as another one entirely, so everything that’s happened since seems marked by her presence. I know that I would never have made my home in California and discovered the part of the world where I am happiest despite however many hardships I face. I love the Pacific ocean and the temperate air and the easy access to desert, mountain and sea. I also love the accessibility of progressive ideas about health and natural medicine and acupuncture — alternative medicine in general — that I never would have learned about nor embraced had I not had Sophie and sought alternatives for her.

2.  What was it that caused you to feel “a strange sense of relief despite having handed my baby to a stranger,” especially since it sounds like you hadn’t gone into the room with her?

It’s difficult to articulate how powerful and life-changing Dr. Frymann was and became in our lives. She was old and very stooped and small, even then nearly twenty years ago, yet she exuded peace. I’ve very much learned to trust my instincts since meeting and entrusting Sophie to Dr. Frymann. I think she embodied all that was inarticulate inside of me, my dread at how Sophie was being treated, my intuition that she was being harmed and not helped, etc. When she took Sophie from me, I felt relieved somehow of the burden, that someone was finally going to help us.

3.  You had written if someone told you that you would eventually make California your home, and that you would have two more children there, you would have “shaken my head and laughed.” At what point did you decide to make the move?

I made three trips out to southern California for six weeks at a time over about two years when I was still living in New York City. The osteopath’s treatments were really helping Sophie, and I found going back to dark and cold New York harder and harder, even though I did love living there. Sophie seemed to thrive during her times in California, so my husband and I thought it might be good to just move out temporarily to give it a go and commit to treatments twice a week for as long as it took. When he got a transfer and promotion with his job, and his company actually paid for our move, it seemed destined. Still, we didn’t expect to stay forever, but one year turned into two and then three — and now we’re working on the seventeenth!

4.  Did Sophie’s disability affect your decision to have more children?

Yes, it did. I’ve written quite a bit about that, but deciding to have another child was both terrifying and entirely impulsive. I knew that I had to have more children. I wanted more children. When Henry was born and developed normally, I began to think that I should have at least another so that we weren’t always defined as the family with one disabled and one not — that sounds terrible to me now, but at the time I wanted Sophie to not only be a part of a larger family (more people to love her!) but also to give Henry support as we aged. That kind of thinking came much later, though, when it became more and more apparent that Sophie would be dependent on us for the rest of our and her life.

5.  If you could go back and tell your younger self anything to prepare her for the parenting experience ahead of her, what would you say?

Hell, I don’t know. Run away now to Bora Bora and don’t look back? In all seriousness, I’d probably advise my younger self to get marriage therapy and individual therapy sooner. I’d accept help — any kind — and I’d exercise more.

Thank you, Elizabeth!

5 Questions for a Sister Contributor

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I’m delighted to announce that one of my essays has been published in Sisters Born, Sisters Found, an anthology celebrating sisterhood, edited by Laura McHale Holland. It’s a lovely book about the love of sisters, biological or not. I recently had the honor of interviewing one of my fellow contributors, Catharine Bramkamp, a writing coach, professor, and author of many works of fiction, non-fiction, articles, essays, and poetry. For more info about her, please click here.

 

1. How would you describe the vision for your writing, present and future?

One of the reasons I chose to write Future Girls and focus the story as a YA – and Science Fiction is to influence my readers. I think YA readers think more, and understand more about both their own reality and better – the future, and sometimes the best way to convince a reader that the world needs to change is to offer the worst case scenario.  What I want to demonstrate is you can change the future;   It doesn’t take much, a word here, an invention there – and we can create a future that is  best for us, for both women and men. The theme of the book is that if society isn’t good for girls – it’s not good for anyone.    Oh, and my own future is tied up with Future Girls books:  the second Future Girls – Future Gold, will be out this next fall and I’m writing Future Run.  So the future is all about the future!

 

2. It sounds like being a Realtor/Broker inspired the Real Estate Diva Mystery Series. What inspired Future Girls?

Future Girls was inspired by a visit to Saudi Arabia. There wasn’t much to explore in the small town we were allowed to visit, so we ended up at a shopping mall. In the mall stood women’s stores, side by side.   The first store featured long burqas, coats, full head scarves available in every color ranging from black to navy.  The second store looked like Fredrick’s of Hollywood on steroids.  Brightly colored bras and negligees vied for attention in the store window, dresses fit for prom or Quinceanera in brilliant orange, purple and pink sequins, frills and tule spilled out of the shop doors and danced along the store front.  The male guide explained that their women liked to look beautiful for their men in the privacy of their home.

Which was bullshit.

Women don’t dress for men. Women dress for other women. And that was my trigger. If Saudi women were dressing up and showing off to their women friends in the privacy of their homes, and indeed, far away from the men in the family, what else are they doing in the privacy of their home? If the men of your society have marginalized you so completely that you are only able to communicate with other women, ever, what would you communicate?  What would you plot?  Once the women tired of dressing up, what was next?  In my mind, it was science, time travel, changing their situation in a way that circumvented the men in their lives.  The essential idea is:  if you can’t join the club, change all the rules for membership.

 

3. How do you create balance and engagement in your blog posts with having both fiction and non-fiction readers and clients?

Often the skills that we need to use for fiction, good story telling, also applies to non-fiction writing.  So my advice, and many of the subjects of my blogs, is to encourage my clients both working on fiction or nonfiction, to tell the story.  Tell the story about your business, or your clients (names changed) tell the story of your fictional characters.  It’s all about the story, and so the skills we need for fiction and non-fiction are often the same.

 

4. I love your poem in Sisters Born, Sisters Found. Did you ever “formulate the perfect transparent exit strategy”? What else can you tell us about your sisterly relationship?

I grew up with just one brother, so I have been delighted with my found sisters!

I wrote the poem after my Sorority (Chi Omega) big sister visited me in California, The poem summed up many years of friendship and sisterhood found.  We have been sisters now for longer than we’ve been wives or mothers.    I treasure this idea and I treasure her!  I sent her a copy of Sisters Born/Sisters Found and she loved it, and was very moved by the poem, it was a tribute to her and how important our found sisters really are.

Our exit strategy is all about eliminate the damn holiday fuss.  It’s been hard slog, I got out of decorating a live tree this year, but she didn’t!

 

5. In what way might you find yourself in the “Different Lane”?

I love what you do here on this blog, telling the story of how people find themselves, sometimes quite abruptly, in a different lane.

My lane change has been all about shifting out of the middle lane of self-improvement. I’ve been clutching the steering wheel, freaked out that the fast lane to the right is passing me by but the slow lane is not acceptable and so I’ve been traveling here in the middle, not relaxed, and not appreciating my life.  So I’m switching lanes and going on a self-improvement diet.

It’s so easy to default to fixing ourselves, taking another class, joining another Master Mind group, attending another self-improvement retreat.  And I thought, I’m switching lanes, I want to move forward without all the drag of self-help, without – dare I say it? – Making myself all that much better.  So I’m moving out of the know-yourself-better-take- this-test lane and into either the fast lane so I can reach my goals faster or maybe even the slow lane so I can enjoy the scenery. I’d let you know how it goes, but if I succeed, I will not have changed a bit!

 

The Journey: ABA and How I Feel about It Now

[This post is the first in a series about looking back on aspects of my journey as an autism parent and how I feel about it now that my son is 20 years old.]

One thing you’ll find with most parents of children who have autism is that they always remember D-Day. The day of their child’s diagnosis. The day everything changed.

Some parents are devastated; they grieve for the future they envisioned for their child, for the parenting experience they expected to have. How could this happen to me? To us? This is so wrong!

Some parents are filled with shock and fear – what does this mean? What are they supposed to do? What’s the next step? What does this mean for their child’s future? They feel a sense of dread and despair for the journey ahead of them.

Some are angry. Who does this doctor think she is? She doesn’t know my child. My child shows affection! He laughs! How dare this doctor say he has autism? I know my child better than any professional could.

Some, surprisingly, feel relief. They knew something was different about their child. They knew their child should have been talking by now. They knew he wasn’t just a “late bloomer.” They knew their child wouldn’t be shrieking at any outing in the community unless there was something going on with him.

And, of course, many parents feel a combination of these reactions and emotions. Me? I felt strangely relieved, but also shocked and fearful of the future. In 1997, the year of our D-Day, autism was still considered by some in the medical field to be the death sentence of developmental disabilities. There wasn’t much information out there. No internet, few books. Somehow I found out about ABA and learned that there was a local center that offered ABA-based therapy, without the use of aversives. At that time there were only four children in the program, and my son became one of them.

From the age of 3 to 6 years, he received approximately 25 hours a week of therapy, including two home visits every week. He was taught to communicate using PECS – Picture Exchange Communication System – with cue cards and schedules. He also received speech and occupational therapy. When he responded to the behavior therapy by following instructions and interacting with the therapist, he received a gummy bear or some other type of treat. And after over two years of this intensive therapy, he began stringing together three words of spontaneous speech. He was five and a half, and I had some hope.

Over the course of many years, he progressed more than I had ever dared to dream. I felt certain it was because of the early intervention therapy he had received. I recommended ABA-based therapy to other parents I met. I believed that it saved my son. He wasn’t cured, and I never expected that, or even hoped for it. But I had wanted him to be able to interact with us and navigate this world as comfortably as he could.

At some point, probably when I participated in the Partners in Policymaking program last year, I became aware of the concept that maybe he would have been okay on his own, without therapy. Maybe he hadn’t needed to lose 25 hours a week of his childhood and been made to feel like there was something wrong with him. Maybe he would have learned to speak on his own timeline, might have naturally developed a way to filter all the sensory input that agonized him. Maybe with time he would have been fine on his own, and he could have just been allowed to be a little kid, unfettered by sitting in a chair across from a therapist five days a week. Maybe he could have had a “normal” childhood.

And I started to feel bad about the therapy I had so exuberantly lauded. I started to think that my son, with all the gummy bears and goldfish crackers he was rewarded with, had been trained like a seal. Or a lab rat. How could I have thought that was how to teach him? How could I have thought that was beneficial for him?

Either way, there’s no way of knowing if it was the therapy or if it was just the passing of time. And instead of beating myself up over something I will never know, I have come to accept the belief that it was both. It was the therapy and it was the passing of time. But it was also my son’s determination, my belief and hope, our connection, and our love. It was not one thing; it was everything.

[Image courtesy of Keep Calm Studio]

Looking for Closure, Part 2

[If you have not read Part 1 of this post, I encourage you to do so as it provides the background story as to why I would be seeking closure on a mountain.]

For the second time in fifteen years, I was stuck on this mountain as the sun was going down. And then it set. The forest was completely dark, the trail was no longer visible, and there was another mile to go before getting back to the parking lot.

*

It’s amazing how long trauma can affect us, and in what ways. The memory of the event dictates our behavior, even if we’re not thinking about the event at that moment, and even in different circumstances.

At the age of 28, I had climbed a local 9-and-a-half-thousand-foot mountain alone.  I stayed too long at the summit, and got lost and mildly injured on the way back down. Relieved to finally find my way back to the trail, I then came across two men who chased me as I ran the remaining two miles back to the trailhead where my car was parked. I had narrowly escaped what would have been an assault or worse.

That was fifteen years ago. Not only have I not hiked or climbed alone, I find myself locking my doors immediately upon getting into my car. I get nervous when people walk closely behind me.  If I am alone outdoors when the sun sets, the experience still crops up in the back of my mind.

But it’s a beautiful mountain, and after ten years I decided that I wanted to climb it again, with someone else of course. Nigel had wanted to climb it too, and for two years my boyfriend and I had talked about climbing it. A couple of months ago, we finally did.

It was a warm early fall day, and I wore shorts anticipating that I would get hot while hiking. The three of us hit the trailhead a little bit later than we intended to, but we kept up a good pace. Nigel enjoyed listening for Bigfoot noises and potential signs of its presence. As we climbed a little higher, I was dismayed to discover that I was not getting hotter. I was getting colder, my legs were exposed, and I had only worn a light long sleeved shirt over a tank top. I came to the place where, all those years ago, I had rejoined the trail after being lost, where the men began chasing me. I felt no closure, only a sense of unease.

Still about an hour from the summit, we got off the trail (which is not clearly marked). My boyfriend was not feeling well and decided to wait for us as I continued on with Nigel, who insisted that he had to finish (“I must conquer this nemesis”). Soon the summit was shrouded in clouds, and it was getting late. We needed to turn back. Nigel vehemently resisted, and I explained to him that sometimes you have to “give up your summit” for weather and safety reasons. It took me at least twenty minutes to convince him.

We couldn’t find my boyfriend, of course, after going back and forth and spending about 45 minutes looking and calling for him. Finally I decided that we needed to head back down, and if he wasn’t at the car when we got there, I would call Search and Rescue.

He thought to leave our cloth bag at some point on the trail, and I found it, relieved that he was on the trail ahead of us. By the time we caught up to him, the sun was going down, and I was numb with cold.

We began jogging along the trail, trying to get as far as we could before we were in complete darkness, which came soon enough. Fortunately, my boyfriend and Nigel both had their cell phones, and we used one for light until its battery ran out, and then used the other. But the phone lights were dim, and it was very difficult not to trip over rocks, which we did several times, causing injuries.

We could tell we were nearing the parking lot, but then we came to an intersection with another trail and because it was dark we accidentally got on that trail, which led us south of the parking lot, out to the highway. We began walking along the highway to get back to the turn-off for the mountain’s trailhead, which we finally found in the darkness.

For the second time in my life, I got into my car, shaking, and drove off. I vowed that it would be the last.

*

I had wanted to climb the mountain again in an effort to find some closure for the terrifying, traumatic experience that had happened fifteen years ago. There is some emotional need for closure, especially when we feel we have been wronged in some way. We try to revisit the place or the person responsible, hoping to resolve the violation or distress that we still feel. But sometimes, there is no closure to be had. Sometimes the whys go unanswered and the fears aren’t conquered. And we must continue on, the passage of time our only easement.

(image credit: Harvest Ministry Teams)

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?

*

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.

*

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.

*

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