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Creative Networks

By / May 29, 2016 / 2 Comments

I spent the day with an artist friend. She has mentored Kiki many times over the years and this trip she gave Kiki some advice which may put a significant dent in Kiki’s upcoming college tuition bill. She also added both Kiki and me to a Facebook group full of illustrators and graphic designers.

Recently I finished reading a book and, as is usual when I don’t quite want a book to end, I scanned my way through the acknowledgements. I was surprised to realize that I recognized almost half of the names in there. Many of them were people I’ve met in person. Which I guess shouldn’t have surprised me since I’ve spent time with the author on multiple occasions.

On Twitter I watch the conversations of other people. They laugh and share photos. Sometimes in the photos I see two or three friends standing together and smiling, but the thing is that I know them from very different areas of my life and I had no idea that they even knew each other.

This evening I finished reading Big Magic by Elizabeth Gilbert and (again) read the acknowledgements. They were full of people whom I have not met in person (Nor have I met Ms. Gilbert) but I was surprised at how many of the names I recognized as writers whose works have had critical acclaim.

In my high school and college Humanities classes I learned that renaissance painters communicated with each other. Impressionist painters gathered together both to paint and to hang in galleries. C.S. Lewis and J.R.R. Tolkien were friends.

There is this myth that creation is solitary, the lonely artist or the reclusive writer. Perhaps there are some people who create that way, but it is not what I see. I see tightly woven communities of mutual support. The communities may be somewhat detached from each other, a literary network is different than a genre fiction network, but within a network the connections weave tightly. Everyone who creates needs someone who will listen when the creation is going badly. They also need someone who will rejoice when things go well. They need someone who knocks them out of their comfort zone and helps them think new thoughts.

I remember a time when I did not yet have a creative network. In 2007 I attended a concert and had the first inkling of creative community. Now I have hundreds of connections. I spent a long time feeling outside and on the edges. I took a long time to learn how to grow an introduction into a professional contact and sometimes into a friendship. Back in 2007 Howard and I had barely begun attending conventions, social media was just beginning to alter the online landscape. I was soon to learn that the best connections I could possibly make weren’t with the established creators I could see in the distant center of the creative community. My best connections were made with the people next to me on the edges. Thread by thread I extended my network until I was not on the edge anymore.

I know creators whose networks of support are entirely online. I know others who connect in person because they avoid the internet. There are so many ways to support others and to gain support. This is how creators survive and succeed.

Mother’s Day Wishes

By / May 8, 2016 / 2 Comments

These are my Mother’s Day wishes for everyone out there in the world who needs them.

May you have less guilt today than usual. Less guilt about the job you feel you ought to be doing. Less guilt about feeling like you should have done more for the mother in your life (or the one who is no longer in your life). Less guilt about the planning you intended to do, but didn’t because other priorities took your attention. Less guilt about how you should do a better job teaching your children to honor their mother. Less of the accompanying guilt that you are selfish because you are the beneficiary of the reminders you give to your kids that they ought to be nice to their mother. That’s a recursive guilt, I hope you don’t have it in your life today or any other day.

May you have less stress. Particularly less stress that is associated with taking care of others. Even more particularly, may you not feel under pressure to have a wonderful day because if you don’t then everyone around you will feel like they failed and then you’ll all spiral into the recursive guilt which is unpleasant for everyone. I hope you can dismiss this stress, and any other pressure to present yourself as other than you are.

May you have fewer strings that tangle your choices. Most particularly strings that are attached to gifts. May all your gifts be stringless. May you be able to move through your obligations today without encountering any tangles. May you have a day where the needs of one person do not conflict with the needs of another, and where you are not called upon to be the arbiter of who is unhappy.

May you have a quiet moment of beauty. It can be a moment you created deliberately, or one you wander into. It may be as long as a soak in a hot tub, or as short as noticing a flower outside your window. I just hope you have a lovely thing in your day.

I hope all of these things for anyone who needs them, mothers, non-mothers, children, parents, grandparents, care-takers, and care receivers. And one last wish: May you extricate today from the weight of expectation and make it into the day you need it to be.

Late Night Thoughts on Parenting

By / April 18, 2016 / 2 Comments

It is late and instead of being asleep I am noodling around on the internet. I’m looking at articles talking about how helicopter parents need to back off, and lists of ways in which incoming freshman are not ready for college because their parents hovered too much. Then I think about parents who get prosecuted for letting their kids walk to the park, and about how my kid’s schools contact me every time one of my kids has an F. Or if my kids are marked absent for any of their classes. Or if my kid misses a flex session where they are supposed to make up work. The messages urge me to talk to my child about their choices. The unspoken message is clear: It is the parent’s job to make sure that their kids succeed. So parents get caught in this system that pushes them to hover, and then complains later because they hovered.

I’m thinking about all of this because, with one of my kids, we’re out in the weeds. There may be a path here, but it is hard to see and maybe it will only exist after we’ve trampled our way through to create it. I’m doing my best to step back, let him struggle, let him fail, let him learn. On the other hand I’m also doing what I can to make sure the path isn’t impossible, to help him keep moving, to make sure that the obstacles are surmountable with his current allotment of resources. At times it feels like the worst of both worlds. I have to explain to others why I’m letting him take a potentially failure laden path, and I’m having to explain why I step in and intervene in ways that look like I’m the one keeping him mired in childish dependence. I’m wending the best parenting path I can figure out, and I’m usually convinced that I’m getting it all wrong.

That “convinced I’m getting it all wrong” is a normal parenting experience. This is one of the reasons that society gets so focused on touchstones and check points. Semester grade reports and end-of-year testing are used as a way to know if the kid’s education is on track. High School graduation is a huge measure of success. Other touchstones are getting a job, getting a driver’s license, earning an award, college admission, picking a major, getting married, getting a job. Any success that the child has can qualify. When kids hit the checkpoints it is a small reassurance that maybe the parents aren’t completely failing. I read this behind many facebook statuses “Johnny won the spelling bee! (maybe I’m not completely failing at this parenting gig.)” Parents aren’t the only ones watching, grandparents, aunts, uncles, family friends, neighbors, they all take note and help to celebrate. Milestones let everyone relax because the kid appears to be on track.

“Appears,” note that word carefully, because sometimes the internal experience of the child does not match the external success. Sometimes a checkpoint reached is more a measure of parental management than child growth. This is why helicopter parenting is scolded, because child growth should be the goal, not the checkpoints. Eventually the missing growth is exposed when the child is not prepared. Conversely, sometimes a checkpoint missed can also indicate growth rather than failure. Sometimes the strongest thing an almost-adult can do is to head out into the weeds because the standard path isn’t working. But a missed checkpoint looks like a failure. It makes everyone anxious and uncomfortable, because there is no reassurance that all will be well. then there is enormous pressure to get the kid “back on track.” People like the comfortable answers, the solid and stable answers. They like to know which college and what major. They want the major to be one that they can picture leading to steady employment. They try to steer artists away from art majors. They try to push college as the sure path.

There is no sure path. All of the paths are made of struggle, failure, getting up again, and moving on. Parents may manage their kids into college, but then the new adults have to do the growing they missed out on before. Sometimes people are exactly on track for a very long time, until life takes an unexpected left turn. Then they have to figure out how to find a new path for themselves. All of us will, eventually, have to venture out when the way ahead is not clear.

So perhaps I should use this as reassurance, that in “allowing” my kid’s education to veer away from standard, I’m letting him grow in a way that most people don’t until much later, even while he is not growing in some of the ways that his peers are growing right now. Maybe I’m succeeding and failing all at once. And maybe that is just fine.

Taking the Train to the Writing for Charity conference

By / March 20, 2016 / 1 Comment

I got up before dawn to catch a train. This was not a thing I have ever done before, despite the fact that the commuter train has been here for years. Somehow I’d always defaulted to driving as more convenient. But today we only had one car, the other is still being repaired, and I had a conference 90 minutes away. When I realized that it was convenient to the commuter line, I decided to experiment with taking Front Runner.

It was quiet and chilly on the platform waiting for the train to arrive. I’d come twenty minutes early, so I had a while to sit and watch the sky lighten behind the mountains. A pair of ducks flew quacking through the sky. I breathed and felt peaceful. Driving was not peaceful like this. Driving is full of paying attention and making judgement calls. For this trip my only job was to wait. The train arrived and I boarded. I found a seat with a table and an outlet. My first thought as the train pulled away was how easy it had all been. Then I pulled out my laptop and began to work as landscape passed beside me.

Writing is a process of alternating typing and staring off into space to figure out what to type next. On the train there was something new to see every time I looked up. I got peeks into backyards and industrial compounds. The train follows a different route than the freeway, which meant seeing landmarks from a different perspective. We even traveled through a small canyon that I’d had no idea existed at the base of Point of the Mountain. The freeway is up on the benches while passing through there. The scenery outside my window alternated between beauty and junkyards, each interesting in its own way.

A person from the conference was shuttling people from the train stop, so in-town transport was simple. Then I was at the conference. Writing for Charity is a smaller event than many I attend, but I like it for that. All of the proceeds go to charity, which is also a lovely thing. Utah has an abundant supply of authors, so my schedule was not too busy. This left me with many pleasant hours to visit with people I knew and to become better acquainted with people who were only somewhat familiar. I even spent some time working.

It was nice to be at a conference where I was neither promoting nor selling anything. I had no table to run, no money to manage. I didn’t even bring copies of my books with me, which I probably should have done. There was a moment on my self publishing panel where being able to hold up one of my book covers would have been a useful example of how to get covers wrong and then hire a designer to get it right. But it was okay that I didn’t have it. Instead I had a dozen conversations, some short, some long. My mind pulls them out and considers them as I write this. They are each like a little treasure to be appreciated, a moment when I connected with someone else and they helped me or I helped them. Or sometimes we just laughed together, and that was good too.

The sun had begun to set when I sat on the platform to catch a train home. I wasn’t alone this time. A fellow conference attendee was also riding southward, though her exit was before mine. We talked together as we waited. I learned of her projects and, since she was an experienced commuter-by-train, I was able to ask her questions. I sat on the opposite side of the train for the trip home. There were more people out and about, and my mind began to wonder about the stories of the people I saw. What brought that disheveled man walking under and overpass? Why was there young man standing in the courtyard of an obviously abandoned building? Why were the buildings abandoned anyway? When had they been built? How long had they been slowly falling apart? The world is full of stories I’ll never be able to know. I didn’t need to know them, but it was pleasant to let my thoughts wander across them as the train carried me home.

My train friend and I had both lived in Utah for a very long time, so we talked about the quirks of what we saw. We speculated on the history of things and how they are shaped by local culture. She had written several historical non-fiction books and it was fascinating to hear about them. One thing did make me sad. Along the tracks where many lots which had obviously become dumping grounds for things that were no longer of use. It forced me to think how wasteful humans are, and how we need to do a better job of cleaning up after ourselves even when it takes extra effort and expense. Surely we can thing of something more useful to do with old cars than leave them parked in a field to rust.

It was dark when I exited the train. Howard was waiting for me, which might have been the best part of the day. On the short drive to our house, he told me about his day and I told him about mine. It was so good for me to get out of my house and see new things, think new thoughts, meet new people. I spend so much time contained by my usual locations and habits. Next week is Salt Lake Comic Con, where Howard and I will both participate. I may take the train to get there for at least some of the days.

Perseverance and Adversity

By / February 15, 2016 / 3 Comments

Yesterday at church we had a lesson on adversity. The major theme of the lesson was that we need adversity in our lives because overcoming it makes us better people. I believe this is true. The most self absorbed and least empathetic people I’ve known are those who have never had a hard thing happen to them. The older I get, the fewer of those people I know. We all get knocked flat eventually, hence the need to address this fact in a spiritual context. People of faith have to reconcile belief in a loving, all-powerful God with the fact that life is terrifyingly unfair. The lesson kept returning to the message everything happens for a reason. Many of the women around me seemed to find that very comforting. I sat there and thought how I don’t believe that God deliberately smites people with problems to make them grow, but that I do think he allows natural processes and choices of others to bring pain. I’m sometimes angry with Him about that. I also thought of dear friends who I knew were hurting right that moment and how hurtful it would be if I were to say such a thing to them. In fact just the day before I’d given one friend this card which reads “Please let me be the first to punch the next person who tells you everything happens for a reason.” (You should check out all the empathy cards at that link. They are the cards that cover the cases which are not covered by all the other cards. Brilliant.)

The thing is that when people are hit with something breathtakingly hard, they have to grieve. Part of that is being angry, really angry, often angry at God if they believe in one. Those of us who are bystanders to that pain want to be able to fix it. We want our loved ones to be at peace emotionally even if the hard thing continues. We say we want it for them, and we do, but we also want it for ourselves because watching pain reminds us that someday pain will come for us. And we have little control over what it will be or when it arrives. So we try to take the person who is in pain and jump them ahead to acceptance. We want to give them an answer. But that doesn’t work. Particularly if they are in the part of grieving where they need to be angry.

I don’t think I understood the value of anger in adversity until I read Rachel Naomi Remen’s My Grandfather’s Blessings. The book is a hundred small stories from her experiences counseling the dying, the recovering, the doctors who help the dying, and all those in the blast radius of cancer cases. In one of the stories, Ms. Remen says she is always glad when she sees anger in a patient. Anger comes from a vital will to live, to demand that the world be different and better. Angry sufferers are more likely to fight and to recover. Anger bestows strength and forward momentum. The gifts of anger can obviously be used in destructive ways as well as constructive, but the vital energy of it is critical to surviving hard things. I’ve recommended Ms. Remen’s book before, I do it again here. It is worth reading.

After listening for a time to the church lesson, I raised my hand and expressed the thoughts in the prior two paragraphs. I added that when we are close to someone who is wounded, stricken, injured, our job is to mourn with them, be angry with them, and walk along in their journey toward acceptance whatever peace is right for them. We can’t give them our answers, they must find their own. I’m pleased that many of the women who were saying everything happens for a reason, nodded along to this as well.

This morning a friend (who is mid-chemo therapy) posted a link to an article about Death and The Prosperity Gospel. My church is not the only one where “everything happens for a reason” is the party line. The article does a fantastic job of taking a look at the harmfulness of assuming that blessings and prosperity are rewards for good behavior. That doctrine is comforting because it provides the illusion of control. If we are good, then our lives will be blessed. I even think there is some truth to that. Our choices definitely affect our outcomes. This is an important lesson for people to understand: choosing well makes life better. Yet we also have to acknowledge that life is hideously unfair. We do not start on even ground. We are bequeathed unfair loads of challenges, economic status, and family situation at birth. This is compounded by societal unfairness that smooths the path for some people and smashes others. Our choices can make our lives better, but prosperity is not an accurate measure of goodness.

The paragraph in that article which hit me most was this one about grieving:

One of the most endearing and saddest things about being sick is watching people’s attempts to make sense of your problem. My academic friends did what researchers do and Googled the hell out of it. When did you start noticing pain? What exactly were the symptoms, again? Is it hereditary? I can out-know my cancer using the Mayo Clinic website. Buried in all their concern is the unspoken question: Do I have any control?

I’ve actually seen this happen. Years ago I was present when a friend of mine informed people that he had five years to live. I watched him bear the brunt of their reactions, person after person. He ended up comforting his friends about his impending death. I think of that, and I think of the article about How Not to Say the Wrong Thing. It can be so hard when a friend gives you bad news to not try to make it better. It is hard to not attempt to exert control over the situation. Yet what sufferers need is for us to meet them where they are and just be with them in acknowledging that what they’re going through sucks.

I wish I had better answers than this, but I don’t and that is the point. I would dearly love to be able to fix it when Howard has a depressed day or when my son is so lonely and isolated that he lays in bed crying. Instead I just have to be willing to stay in the pain with them and remind them that the pain will subside, that there are choices we can make which may help, that they are loved by me and by God, both of whom hurt for their hurting. And that if they listen carefully, God will help them turn this experience into future strength and usefulness. If they need to be mad at God for not fixing it, I stay with them for that too. So does He. It doesn’t feel like enough, but over and again it is what is needed. Mourn with those who mourn. Comfort those who stand in need of comfort.

Thinking on LTUE

By / February 15, 2016 / 1 Comment

The most wonderful and difficult thing about LTUE is that I get to have many emotional conversations which are necessarily brief. Sometimes a person will come to me with a problem that I may be able to answer and I have a few moments to give the best answer I can. Other times they come to me with thanks and a story about how something I did affected them. Or it may be a friend whom I haven’t seen in a long time and we have years of stories to share. Each of these conversations is worthy of an hour. Part of me wants sit with the person and ask about their lives, listen to their struggles, hear as they sort out answers. The convention does not allow for that. All the conversations are interrupted by schedule or by other conversations. So I get snippets. A string of shining moments, or hard moments, that I try to remember. Often I’m left with the ghost of words not said lingering in my mind. I can always think of something I wish I’d said better or something I forgot to say.

This year was more emotional than usual. I had a couple of dear friends who arrived at the show still in the shock portion of a major life upheaval. I had a panel turn into a solo presentation on a day’s notice and it went really well. My scheduled solo presentation went fine, but I can see a dozen ways I could have done it better. Perhaps someday I’ll get that chance. I got to laugh out loud many times. I had a few spaces with longer less interrupted conversations. And I had the moments when I was tired and worn, wishing for a place to hide so that my face could be tired without someone commenting on it or trying to cheer me up. I had my palm read and numerology math done on my birth date, both of which were fascinating. I’ll definitely take this year over the year I arrived at LTUE so emotionally distressed I could hardly remember how to run a booth. This was a really good event and I’m glad to have had it.

Not Like Me

By / January 20, 2016 / 1 Comment

Any time I go outside my house there is a subconscious portion of my brain that is devoted to threat assessment. It keeps watch on everything, asking the question “Am I safe?” If the answer is not a clear yes, the process jumps into my conscious thoughts and I start paying attention to the thing which tugged at my subconscious. Usually the thing is another person. I then have to look and evaluate how that person makes me uncomfortable. Sometimes I don’t like the answers because they are based on racist or classist assumptions that Not Like Me = Dangerous.

I was pushing my cart toward the exit of the grocery store, past the floral display. A man was there, he was a bit scruffy with skin much darker than mine. His clothes might have indicated homelessness, or perhaps just a very low paying manual labor job. His hand was reached out to touch one of the plants. It was an almost reverent touch. He caught my eye because that subconscious assessment said “Not Like Me. Possible Risk” My more conscious assessment reminded me I was in a public place, surrounded by people. There was no actual risk here. So I did a thing which I have been working on doing more often. I smiled at him in greeting. Treating him with human respect rather than allowing the “Not Like Me” fear to make me look away and pretend he was not there.

His face lit up in an answering smile. “They’re so pretty.” He said in heavily accented English.

“Yes.” I agreed, slowing my cart down. I love flowers and plants. This man did too. It was a small point of connection.

“I’m from Guam. There are so many flowers there. Big. Everywhere. My wife, she would make a” His hands gestured making a crown shape on his head while he searched for the word
“Leiei. She plant so many flowers everywhere. All around the house.”

My cart was fully stopped now. “How wonderful.” I answered.

“Yes.” He sighed. “I miss the flowers. I come here to think of them.”

In that moment I had a sense of how very far away this man was from the home of his heart. It also seemed like he’d been away a long time. His clothes did not indicate someone who had the income necessary for international travel. I also know that international travel is much more complicated for people who will be scrutinized by customs officials. I wondered if his wife was still in Guam far away from him.

We shared one more smile and parted, me to my car, him to stand in the floral section missing his home. I don’t know any more of his story than that brief piece. I don’t know what brought him here, his immigration status, or his life goals. Yet for a moment “Not Like Me” vanished and I could see a homesick fellow human who likely gets ignored and cold shouldered every day.

It is a small thing to meet a person’s eyes and smile or nod, but the accumulation of small things matters. Giving someone a moment of being seen, instead of being invisible, is important. Particularly for those among us who become invisible because they make others uncomfortable for reasons that they can’t control, whether it be skin color, disability, communication issues, or not being able to afford clean clothes. I can’t smile and nod everywhere. Sadly the world is filled with situations where doing so actually would increase my risk of being harassed in some way. But the places where I can out number the places where I can’t. I’m trying to be better about doing it and about re-training the risk filter in my brain to recognize that just because a person makes me uncomfortable does not give me leave to treat them as if they are less than human.

Foreigner

By / January 8, 2016 / 1 Comment

I was at the grocery store and the Asian couple in front of me spoke to the cashier in broken English. I watched as the gray haired lady said “I pay you with coin?” holding out a pile of coins in her hand. There was something about the way that she held out the money that made me realize that she didn’t fully comprehend American money. She was just handing over a pile and trusting the cashier to give her the correct change. She turned to me and nod smiled, an apology because she and her coins were taking a long time. I smiled back to let her know that I did not mind.

I’ve only visited foreign countries where the primary language is English, but even there I have felt baffled by local customs and currency. As the woman walked away with her husband I realized how brave they both are. I don’t know where they came from, nor what decisions caused them to leave their native home and come here. I do know that everywhere they go, they are different. Every conversation they have is a struggle to be understood. Often they must be met with anger, frustration, and offense from people who are impatient with broken English. Every time they are out in public, they are vulnerable, easily picked on, easily taken advantage of. Yet the woman smiled. She was friendly, even in her slight confusions over words and coins.

Courage comes in many forms. I saw bravery today and I should pause to recognize it.

Disorders in Hiding

By / January 26, 2016 / 6 Comments

Sometimes autism doesn’t flap arms or drone on forever on the infinitesimal details of one particular topic. Sometimes Autism can look like a friendly kid who calls his friends over and is the instigator of group play. Autism can be wearing the exact same outfit every single day because your clothes are part of who you are and you don’t feel like yourself in different clothes. Often this means duplicates of clothes. Autism can be standing in a group full of people who are all talking and laughing, wanting to be part of it, but they only talk about things you don’t care about. Autism can be refusing to go into the lunch room because it is too loud and ending up sitting in a hallway off by yourself feeling lonely. Autism can be feeling certain that you made an agreement with another person only to discover that they understood what you said completely differently from how you meant it. Autism can be being unable to do an assignment because you can’t wrap your head around how to begin. Then everyone gets angry with you because it looks simple to them. Autism can look like stubbornness and laziness.

OCD does not always flip light switches, count posts, or line things up in rows. Sometimes OCD is becoming actively uncomfortable and antsy if someone else is sitting in the spot where you expected to sit. This discomfort may cause you to lash out in anger. Then you have to face the consequences of your angry outburst. OCD can be carrying all of your books and school papers in your arms because that is the only way you can constantly be sure you have everything. OCD can be not throwing away any school papers and carrying them all in the ever-growing stack because it would be terrible to not be prepared should the teacher ask students to pull out an old assignment from three months ago. OCD can be wrapping every thought with a cloud of tangential and descriptive information which obscures the thing you want to tell other people. Only you can’t skip any of the information because it is all connected. And if anyone tries to interrupt the thing you’re saying, you get angry, because you weren’t finished, and the thing you were saying is important and must be completed. OCD can be correcting the pronunciations of the people around you because if a word is said wrong, your brain can not let go of that word until it is spoken correctly. One of these things is a quirk. All of these things together is a disorder that affects pretty much every hour of every day and every relationship in your life. OCD can look like disobedient defiance, rudeness, and disrespect.

Anxiety does not always worry about things. Sometimes anxiety is a heart that races and palpitates even though there is nothing going on and the person feels calm. Anxiety can be feeling antsy and agitated, like post-adrenaline shakes, even though nothing happened. Anxiety can be imagining a dozen possible futures and making plans to be prepared for all of them. Anxiety can be hyper-organization that other people praise, and which is actually useful, except that it never allows rest, vacation, or breaks. Preparation that never switches off. Anxiety can be needing to leave an event because there are too many people moving around and talking, making you unable to track everything. And you have to track everything, because if something goes wrong, you must be ready for it. Anxiety can be skipping work opportunities because they require face-to-face interaction. Anxiety can be checking up on other people’s work until they get annoyed with you, but you can’t not check because you have to be prepared if they didn’t do their job. Anxiety can look like a nagging and controlling personality.

ADHD is not always easily distracted. ADHD can be so focused on a project that suddenly you realize that people are standing over you angry because they’ve been trying to get your attention. ADHD can be the sound of pencils scratching on paper overpowering the thoughts in your head. ADHD can be deciding that today you will REALLY pay attention and make sure you get all your assignments, only to realize that you missed hearing an assignment because you were busy planning how not to miss assignments. ADHD is being lost in the thoughts in your head. ADHD can mean always feeling lost or out of step because everyone else knows what is going on, but you haven’t any idea what the instructions were. ADHD can be a jittery leg, all your pencils chewed to bits, and fingers that twist and play with whatever they touch, all without you intending to do any of it. ADHD can be lost items and missed appointments because at the important moment your thoughts were on something else. ADHD can look like chronic disorganization, negligence, and a person who doesn’t care enough to get things done.

Depression does not always stay at home lying in bed feeling in a pit of despair. It is not always dramatic or suicidal. Depression can be doing all the tasks that are required of you, but enjoying none of them. Depression can be feeling like things will never be better than they are now. Depression can be binge watching television shows on Netflix, because then you don’t have to listen to your own thoughts. Depression can be playing endless games of solitaire to fill the spaces between required activities. Depression can be deciding to stay home rather than go out with friends because being social sounds too exhausting. Depression can be having friends drift away because you’re not the person you used to be and you don’t have emotional energy to maintain the friendships. Depression can be crying at seemingly random times over things which wouldn’t normally cause tears, like a happy song playing, or the store being out of the cereal you like. Depression can be a messy house because you only have so much energy to do things and laundry didn’t make the list this week. Depression can be not bothering to brush your hair or change clothes because it is too much work. Depression can look like a person who is standoffish, slovenly, and unfriendly.

So if you have to deal with a person and they are awkward, rude, nagging, standoffish,or negligent, pause a moment before you condemn them. It may be that they do have the character flaw you perceive in them. Or it may be that the person is fighting a daily battle you can’t see, and they need your compassion instead of your anger.

Special Needs Scavenger Hunt

By / November 18, 2015 / 2 Comments

I’ve spent the last eighteen years participating in an educational scavenger hunt and I’ve only just now recognized that was what I was dealing with. By age three it was obvious that Link was a special needs kid. It was also obvious that he was friendly, happy, loving, and smart. With the first diagnosis of language delay, I began seeking for things that would help him. I made up games, bought games, and worked with Link regularly. All along the way we had teachers, psychologists, and administrators who were very helpful to us. They gave me pieces I needed and helped us find our way forward. Yet we still spent a lot of time stumbling around because for all the help we did get, there was other help that we didn’t get because we didn’t know the right keywords to unlock those options.

A year ago depression loomed large in Link. He was desperately lonely and overwhelmed with trying to manage a full load at public high school. It seemed like we were constantly readjusting his schedule, dropping classes, switching to different ones. We were trying to find a balance, a way that he could do homework before he left the school grounds so that home time could be free of school stress. When I finally was able to identify depression as the problem, I called for a meeting with his school counsellor. It was like the word “depression” was a key that opened up a cupboard in her brain. “We could put him in home health.” She said. Then she described to me a mode of schooling which was something I’d been trying to describe for at least two years. It wasn’t that she didn’t want to help me before, but until I said “depression” she didn’t make the connection I needed.

I know a lot of parents shy away from seeking diagnosis for their special needs kids. I’ve done it myself. There are so many fears attached to diagnosis and the worry that the child will be labelled or pigeonholed. That has not been my experience. Instead I’ve found that a diagnosis is a passcode that opens up options. It is a lever which pries open pathways. I thought that because everyone was so willing to help, that I was getting all the help I needed. But that became less and less true the further along we got in Link’s education. At the high school level, staff is compartmentalized and specialized. There are lots of options, but it falls to the parents to seek out the options and ask for them. Parents have to be advocates. This requires lots of work, and it is exhausting.

I really recognized the scavenger hunt when Link was diagnosed as having autism one week before his eighteenth birthday. The diagnosing doctor handed me a folder with the phone number of a parent advocate and information sheets on three different transitional programs which might help Link. At that moment I thought how naming depression had led me to scheduling an appointment with a psychiatrist. The psychiatrist had given me information about autism advocacy groups and had suggested that getting a definitive diagnosis regarding autism was probably worth the time and expense. He also referred me to NAMI, who runs education and support for mental illness. I went to a support group for the families of those with mental health issues and they suggested that I sign Link up for Voc Rehab and the WIA youth program. So we did that. Multiple places encouraged me to finally plunk down money with a diagnostician and say “Is he autistic? I’ve seen autistic things since he was little, but I’ve also seen distinctly non-autistic things. I’m tired of not being sure.” The answer was that yes, he definitely is, and the diagnostician was frustrated that it hadn’t been identified when Link had been in kindergarten.

This is how it goes. One piece of information leads to another. There is no central source that knows all the options. Or if there is, I somehow always manage to arrive there last instead of first. By the time I was in touch with the parent advocate, I’d already heard of all the options she mentioned. We’ve still got more hunting to do. At this moment we’re waiting on funding from Voc Rehab. I’m waiting for a call back from the school district about their transitional program. I’m also waiting for a call from an adult educational specialist who can explain the GED process to us, because maybe that is the way to go. We’ve accepted the fact that Link will not be graduating with his class, even though his school counsellor would really like for that to happen. Sorting it all is a huge burden in time and emotional energy. It always has been. I constantly feel like I could be doing more and simultaneously I worry that I’m over helping.

Last night I went to a Relief Society dinner. This is the women’s organization of my church. I spent quite a lot of time visiting with a woman in my neighborhood who also has an autistic son. We’ve known each other for years, but me speaking about Link’s recent diagnosis opened up a huge well of shared experiences that we spent an hour talking through. She listened to me and was frustrated on my behalf that I spent so long without access to autism-specific resources that would have made the journey easier. As part of the decorations for the dinner there were anonymous notes on the wall where people wrote about the kind things that others have done for them. One of the notes said that I’d pushed to get her daughter into early intervention. I feel like I should know who wrote that, but I don’t. It could have been one of a hundred different conversations that I’ve had with people about special needs resources.

Last week I got a message on facebook from a friend who had read my post on Finding the Right Therapist. She asked me questions about therapy and children. I gave her what answers I had, but mostly those answers were in the form of additional questions she should ask and some direction for whom she should be asking. Thus I become a stopping point on someone else’s scavenger hunt to figure out how to help a child who is struggling.

I must admit that I spent some time this morning looking back at my past struggle and grieving that no one thought to give me answers that would have helped. I went ahead and let myself feel that grief. I know that I don’t want to spend a lot of time and emotional energy looking back with regret, but I have to feel it before it can pass and I am able move on from it. Moving forward is what is necessary because the scavenger hunt continues. I suspect it will always continue for Link in one way or another as he tries to navigate a neurotypical world while being who he is. Though hopefully we can reach a point where the hunt is not a major feature of daily life, and the hunt is primarily Link’s quest, not mine. He needs to be empowered to find his own solutions.

Some days I can believe that we’ll reach an independent adulthood for him. Other days I can’t. This too is part of the hunt. I’m not just seeking resources, help, and answers. I’m seeking emotional balance, peace, acceptance, and maybe even joy. This year is better than last year. We’ll continue onward to see what comes next.