Christmas Cards

By / December 15, 2015

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I love Christmas cards. They are a tradition that is waning as electronic communication takes over. I remember when my Christmas card wall would be covered with dozens of cards before December was over. These days I’m fortunate if we end up with ten.

Yet I know that Christmas cards are complicated. They seemed simple when I first got married. I just took a mailing list, printed out a cheerful letter, and dropped them all into the mail. I liked doing it. I liked reaching out an connecting with people whom I may have lost contact with during the prior year. I liked that each card carried an invisible message “I’m thinking of you.” Though at that younger age, I may have been less aware that the message was muted by my mass mailing approach.

Then I arrived in 1999. That was the year where I went through radiation therapy to kill a tumor in my neck that was not cancerous, but kept growing back. The radiation sapped my health and sent me into a depression. By fall things were better, but then in early December Howard took himself to the emergency room with chest pain and ended up in the cardiac ICU because he had myocarditis. I still hadn’t sent out my annual Christmas letter, and I couldn’t bear to write one. What would I say? “Merry Christmas from the hospital. Howard will probably be fine eventually, but we’re in crisis right now?” That was the first year I didn’t send a letter at all. I sat in Howard’s hospital room and signed the cards “Love The Taylers” then dropped them into the mail.

2000 was a better year for us, Howard and I both recovered fully and we’d launched Schlock Mercenary. 2004 was when I gave up mass mailing Christmas cards at all. We’d just quit Novell and money was very tight for the next few years. I let Christmas cards fall off my December to do list.

I miss them. I miss getting bright colored seasonally appropriate art in the mail. I loved the year that I got an Eid Al Fatr card. Yet I find that this year I feel about writing a Christmas letter approximately what I felt in 1999. I would have to choose between being appropriately upbeat for the holiday and being truthful about how this past year has felt for me. So I’ve compromised. I just spent an hour writing The Christmas Letter I Will Not Send. It tells of all the medical appointments and mental health issues. It talks about joy and bright spots that are all mixed up with stress and pain. It goes on for three pages with far more personal information than acquaintances are likely to want. Writing it was really good for me to do. It helped me see my year in summary, and I can see that it qualifies as a good year because we are all stronger and better than we were at the beginning. Most of it was not fun, but I’m not sorry for it. Writing the letter helped me see this in ways that I had not before. I suspect that most Christmas letters matter far more to the person who writes them than to anyone who reads them.

With that letter written and stored on my hard drive, I find that I still want to reach out to friends and family. So I will be sending out some Christmas cards. Each one will have a handwritten note. They aren’t trying to catch people up with all the events of my year. They just express love and gratitude to the recipient. I don’t know how many I’ll do, time and energy are in limited supply, but the ones I’ve done so far have made me happy. I’ll do a few more as I find time until I run out of December.

May you find the holiday traditions that bring you joy and let go of the ones that don’t.
–Sandra

The Story of A Wall Sconce

By / December 14, 2015 / 2 Comments

Almost three years ago I devoted a couple of weeks to repainting our front room. It was a project that required shoving all the furniture to one side, draping everything with plastic, painting and then repeating the process for the other side. I then had a lovely empty wall. I spent the next few weeks looking at that wall and planning what we should hang on it to finish making the room a beautiful place. I even went out and purchased a wrought iron wall sconce as part of my plans.

That January was the beginning of 2013, which was the year of massive transition in our family. Mental health issues emerged in not-to-be-ignored ways. I had kids transitioning schools, the oldest was headed for college, and there was a shift to be made in how our business was run. I wanted 2014 to be better, part of it was, most of it wasn’t. 2015 has been a rough ride as well, much of that because all the stress caught up to me and I’ve been trying to regain my balance. In all that time this wall sconce sat on the floor in my office. Sometimes it was tucked into a corner. Other times it got moved out into the middle of things because I was rearranging. It got knocked over. The glass cups went rolling on the floor and had to be recollected. I thought of getting rid of it more than once. My plans for the front room wall had changed anyway. I kept being annoyed by it, but not quite being willing to give it away.

A few weeks ago Howard saw it in my office and mentioned that it would look nice on the front entry wall where we’d recently removed a batik hanging. This was not the wall that I had nicely painted. This was the opposite wall that I’d meant to get around to painting, but never did. It sits there white, dingy, and waiting for me to decide if I really do want to knock open the front of the coat closet to turn it into a nook, or if I just want to paint and call it good. Howard was right, the sconce would fit there. Yesterday I decided I was done waiting. I didn’t have the energy to make big decisions about closets and nooks. I didn’t have time to undertake a big painting project. But I could grab a drill and drive in a few screws.

Two screws. Fifteen minutes. The sconce that has been underfoot in my life for three years is now in a place where it is lovely instead of annoying. Howard took it a step further and lit candles to go with it.

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It is beautiful, and in the light of its candles, the wall becomes beautiful too. My mind wants to make a parable of this story, to find a single meaning. Instead I found several. When things are out of place, I can’t see their true value. Sometimes something which spends a long time being a problem can turn out to be wonderful. If I am patient I will get through the hard time and back to where I can make things lovely instead of spending all my energy surviving. Howard sees things I don’t and makes my life brighter.

Or maybe I should stop trying to assign meaning and just be happy watching the candles flicker.

Celebrating in Small Ways

By / December 13, 2015 / 3 Comments

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When I was growing up December 13 was an important landmark during the Christmas holidays. It was the day when caroling began. Each year our family would pick a few friends or neighbors who we thought were having a particularly difficult holiday. Sometimes it was because their money was tight, sometimes they’d just experienced a death, sometimes they were facing an upcoming death, sometimes they struggled in other ways, sometimes we just wanted to express gratitude to a person. We picked two or three households then we would go and sing to them each night for twelve nights before Christmas. Each singing featured one of the verses from the song Twelve Days of Christmas only with our own words to match the small gift that we gave to them. I loved that tradition. I loved the singing. I loved the look on their faces when they realized we really were going to show up on their porch every single night. I loved the feeling that we were bringing joy to someone in a difficult season.

For various reasons this tradition did not work well in the family that I helped create when I got married. I tried it one year and discovered I do not have the gift for it that my mother has. (I wrote about it here.) It certainly isn’t something I would be willing to put into our lives now. I simply don’t have the emotional energy necessary to sustain that big production. But I would like to do something small that feels like giving. So I thought I might give a photo and a story about it for each of the next twelve days. They’ll mostly Christmas things, because that is what fills my house with beauty right now. Sometimes the stories will be small if I’m having a very full day.

I’ll begin with my advent candle. I wrote about it a little more than a week ago when I described what I hoped to do as an advent practice. Unfortunately I haven’t sustained the advent effort on a daily basis, but I still burn the candle and think careful thoughts when I find the time. Candles in December make me happy. This year’s candle is more decorated than most. I usually just paint numbers, but my sister-in-law offered this up as a Thanksgiving project. So I painted while visiting with people I love. In only twelve days the candle will burn down to a stub. Between now and then, I’ll watch it shine bright.

Finding a Dream

By / December 10, 2015 / 1 Comment

He was supposed to be in school, not in the car with me driving for six hours to fetch his sister from college. He had a 3d graphics class we’d put him in because I hoped that it would spark an interest in him. I’ve done that a lot in the past few years, had him try out various classes, throwing spaghetti against the wall to see if an interest would stick. If one stuck, then we could seek out mentors. We could parlay interest into ambition and into an adult career or job. At eighteen, finding something my son wants enough to reach for adulthood was the most important task we could face. More important than graduating with his peers. Either the teacher wasn’t right, or the classroom environment wasn’t right, or it was just the wrong direction. Despite his innate capabilities with the software, my son disliked the class. I’ve learned from experience that we were better off letting it go and trying something else rather than trying to fix it. So when he asked to come with me on the trip, I said yes. I’m very glad that I did. Without the two of us pinned in a car, it might have been months before we had the conversation.

The conversation unfolded as soon as we were in the car. It was like all the things that had been pinging around in his head had finally come together into a cohesive whole. Like many of my conversations with him, it started in the middle and I asked questions to gather the missing pieces until I understood the full concept. This conversational mode is so obviously autistic in nature that I wonder why it took me eighteen years to see it. But then I don’t have the pattern recognition skills that my son has. (Him looking at reflective road markers: “I see the pattern now. The yellow ones mark the places where the emergency vehicles can turn.” This dropped into the middle of our conversation just like I’ve dropped the parenthetical into the middle of my story. I never even noticed that the reflectors had different colors, let alone deduced what they were for. This sort of thing grabs at his attention constantly.) My son laid out the pattern before me: A job he would love to have, the things he needs to make it happen, the goals necessary to get the things he needs. Suddenly, click, it is all there. As soon as he told me, I could see it too. Just like the road reflectors. Now he can move forward. He’s been stopped for more than a year, balking at adulthood until he knew how to proceed.

I’m not allowed to say yet what the plan is. It feels too important and fragile to him for it to be public knowledge. I can say that I think it is a good plan and he has a real shot at making it work. I will not be giving him the things he needs for it. I will be giving him encouragement and showing him how to acquire the skills to get the tools to get the things. Triumphs can’t be gifts and I really want him to experience a triumph that is truly his own.

It is possible that the will to move forward won’t stick. It is possible that he’ll give up. But even having this dream at all will help him across some of the road bumps that he wasn’t willing to tackle. For now, I’ll take the hope.

And Then Gladness Shows Up

By / December 10, 2015

Maybe the doctor’s appointment made a difference, or maybe it was the extra three hours of sleep I claimed this morning. But this afternoon I was happy. It wasn’t big happy, just sing along with the music happy. It was the sort of happy that runs a couple extra errands and puts a few more things away because I can see that they need done and I can do them. Howard spent some time this morning putting up lights out in the yard. The tree is up and lit, though it still needs ornaments. We’ve lit candles which put holiday scents into the air and music plays. Christmas is successfully conjured in our house. I’m glad. And I’m even more glad that I can feel glad.

Finding Christmas

By / December 6, 2015

It is nearly a week into December and I’m trying to make space for Christmas. Some of this is physical. The front room furniture had to be shifted around to make space for the Christmas tree. This led to the discovery of hidden piles of dust and debris which we cleaned up. But more of the work is taking place in my head. I’m trying to rearrange my thoughts so that I can enjoy the approaching holiday, not just on the day itself, but also the approach to it. Creating a holiday mood in the house is a help, thus the need for a Christmas tree. I’ve also lit the candles with the holiday smells, which is unsurprisingly effective at invoking Christmas feelings.

As part of my effort to create holiday in my heart, I began a personal advent program. I have a candle with numbers on it. Each night I light the candle and let it burn down by one number. While it is burning I flip through my paper scriptures and glance through passages that I’ve marked through the years. Within a minute or two I’ll find one that speaks to me. I write it down in my journal and a few sentences about what that particular verse means to me at this time. Then I pick a specific fear that has been plaguing me, I write it down and deliberately try to let it go instead of carrying it around. Naming the fears has been interesting. It is also interesting that the scriptures are often related to the fear I choose to let go that evening. Twenty five scriptures and twenty five released fears will go a long way toward clearing my mind and heart. I hope.

I’ve already bungled it, of course. I missed my ritual for a few nights. Then when I remembered I had to decide whether to try to catch up or if I should just proceed forward by one per day. I ended up making up the missed days during church. Which left me burning down the candle with my scripture pondering already done for the day. At least the tree is up. It doesn’t have lights yet, but Link has said he’ll do them tomorrow. Then I’ll feel like I can pull out the boxes of ornaments and other decorations. On Wednesday I drive to fetch Kiki from school. In two weeks the other kids will be out for the holiday. Day by day we move forward and most of my Christmas efforts are about pausing and pondering so that the season can contain contemplation rather than just bustle.

Feeling Weary

By / December 1, 2015 / 2 Comments

I am not working fast enough. This is what my brain tells me. It is hard to argue with the statement when I can look around and see so much more to be done. Everything interferes with everything else. Time spent helping Link emotionally process is time not spent doing business administration. Time spent on business administration means time not spent on design work. Time spent on design work means time not spent making Patch do school work. Everywhere I look there is evidence of how I could have done things better.

I have a doctor appointment on Thursday. It is time for my annual blood test and thyroid check. While I’m there I’ll discuss the status of my anxiety/depression. I’ll describe what is going on in my body and in my head. Perhaps all of this will lead to additional blood tests, perhaps to adjusted prescriptions. If nothing else it will set my mind at ease a bit. Because anxiety can take any symptom and imagine it into dire illness. The result I would like from the appointment is to discover why I’m functioning at a reduced capacity. I have been for a while. There was a brief return to self for a week or two in October, but it vanished again.

I feel worn out and burdened more often than I feel joyful and energetic. I’m going to see what I can do to change that.

December Already

By / November 30, 2015

In just a few hours it will be December. I’m finding myself in something of an odd place with that fact. I’ve been shopping for Christmas gifts, but that has more to do with the end-of-year financial planning that I’ve been doing than holiday spirit. Thanksgiving weekend came and went without us pulling the decorations out of storage. Usually they’re up the day after Thanksgiving. I see lights going up all over town and I hear Christmas music in the stores, but somehow it hasn’t made it into my house yet. I should probably do something about that in the next few days. We should put up the Christmas tree at least. We will. At some point the holiday will seep in and I’ll be on board with it. I’ve just got so many other things I need to accomplish with my week.

I am looking forward to Kiki returning home for her winter break. I’m looking forward to the other kids also having time off from school. Rest is a good thing. I guess the trouble is that creating a holiday in the house is a big project and I’m full up on projects right now.

Moments I’m Grateful For

By / November 26, 2015 / 2 Comments

Last night I followed the sound of voices up to Gleek’s room where I found Howard, Kiki, and Gleek in a spirited conversation about a game they all love. This morning it happened again in the kitchen, only the topic was writing, language,the game, and storytelling. Kiki and Howard have long had conversations like this, but somewhere in the past few months Gleek passed a threshold and now she participates too. It makes me happy to hear them.

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Link will walk toward me and throw his arms wide indicating that he wants a hug. He is much larger than me these days, but never went through a stage where he didn’t want hugs. Neither of my boys have. I’m glad of that, because hugs are a good and healing thing.

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My two sons sit next to each other at their computers. Images on the screen move and jerk as they pilot their characters through imaginary worlds. They are playing a game together. From the other room I hear the rumble of their voices even when I can’t always hear what they are saying. It was so strange when Link’s voice dropped low, now Patch has joined him so that it takes me a moment to recognize which of them is speaking. Though if Patch keeps growing, his voice may go deeper than his older brother’s. They’re almost matched for height right now despite the six year difference in age. Periodically they erupt into shouts as something particularly exciting happens in the game. I listen and am glad that they’ve found ways to play together.

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The cat yells at me. It is a long yowling sound which demands attention. So I turn to her and try to figure out what she wants. Sometimes it is a door opened, other times it is food. Frequently she needs me to pet her before she eats. Since the weather has turned cold she has spent more time demanding that I sit down and provide a lap for her to sleep on. I bend over and dangle my hand where she can come rub herself against it. She does not like being picked up, but she loves scritches. She is soft under my hand and I think again about how I thought my allergies meant that we would never be able to have a cat. Then she came to us and my body adapted so that all I experience is occasional nasal congestion instead of massive, can’t-breathe asthma attacks I used to get around cats. This animal has twined her way into our lives and hearts more thoroughly than I would have expected. She is getting older, so I am grateful for every day we get to have.

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The kids were not thrilled to be in the car, they had other things they’d rather do than be hauled around on errands with their Mom. Yet they were there because they understood that these particular errands were for their benefit and they all needed to be present. It is hard to take passport photos of a person if they stayed at home. The photos happened at a Walgreens and while we were waiting the kids wandered the aisles picking out treats. It has been a long time since all four of my kids were at a store together. I watched as they called each other to look at things. We departed with them more cheerful than they’d arrived. I listened to them in the car as we drove to our next stop. They chattered about games they’d played and things that they’d seen on the internet. All four of them participated in the conversation.

I watched the kids pause for each other as we climbed out of the car and navigated our entrance to the furniture store. I led them through the maze of couches and tables to where they could flop themselves onto mattresses. We decided that our big Christmas gift for the year was to buy new ones for the kids. They were all excited by this because they’d been complaining about their old ones for a while now. I watched them play Goldilocks: too soft, to firm, just right. They all would have liked the super mattress that was out of my price range, but were happy with the nicest we could afford. As soon as we got home the kids scattered to their separate pursuits, but they’ll remember picking out mattresses together.

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“Are you okay?” Howard asked me. I wasn’t, so he stopped and sat down with me while I talked through some emotions I was processing. It’s been a tough year for me these past twelve months as we’ve been through diagnosis, therapy, and mental health management for several kids. Howard listened, said good things, and made me laugh. I am so fortunate to have him.

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.