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.
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.
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.
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.
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.
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.
“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.
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.
I have been waylaid by many things in the past few weeks. I am still processing grief from my Grandma’s passing. That emotion is not particularly heavy, I did much of my grieving in advance, but it is still present. More difficult to manage are the emotions I’m having over parenting decisions I must make. I’ve got a kid in a diagnostic cycle, another for whom it seems like we’re wandering around hoping that a pathway becomes clear. On top of that are the things of the internet and the world at large. There are causes for grief both among my local people and tragedy on the world-wide stage. And then there is the sinus and ear infection which showed up without permission. All of these have filled my head with thoughts. I’m still sorting, which is why a week later I realized that I never posted the blog entry I wrote during my visit to the World Fantasy Convention. The first part I wrote last Saturday. The final part this morning.
I am at the World Fantasy Convention in Saratoga Springs New York. It is a show that is full of writers, editors, and agents. I arrived by myself, knowing that my most familiar convention friends would not be in attendance. I have met new people who are becoming new friends. Yet I find myself alone during the spaces between conversations. Some of this aloneness I want. I need time to process and think. Unfortunately some of what surfaces in my brain are guilty or anxious thoughts. This is when I miss having familiar friends, because they know about my challenges and are able to reassure me quickly. Friends help each other put the self-doubting thoughts into perspective.
I also make sure to step away from the convention sometimes. Today I’m down the street in a coffee shop called Uncommon Grounds. There are many other convention attendees here, but we all have our laptops and don’t feel obligated to socialize. Yesterday I went walking in Congress Park. It was lovely fall weather. I didn’t even need a jacket. That walk is where I took the pictures.
This convention has some different social dynamics than other shows I’ve been to. Most people have scheduled all their meals in advance as business meetings. I’m more accustomed to dinner groups forming up spontaneously as people congregate around dinner time. Conversations are harder to join because more of them are either business meetings or long time friends who are catching up. But there are still the large group hang-out times where new people are welcomed.
I have no agenda for this show other than to talk to people and get some work done. I’ve met quite a few people who are far more focused. They have specific agents or editors that they want to meet. They have panels to be on and meetings to prepare for. I’m enjoying being responsible to no one. It is a nice break. Though I know in the long term I’m much happier with people who need me and miss me.
Written this morning:
It is interesting to note that the last part of the convention felt different to me than the first part. Lately I’ve only been to shows where I have an established group of friends that I’m excited to seek out. I’d forgotten that the first half of a convention is meeting the people that you’ll spend the rest of the show bonding with. In the second half of the show I easily found groups of people to join for meals. I’m glad I went to World Fantasy. I connected with new people. I experienced some beautiful fall weather. I got the feel for what upstate New York is like in the fall. I saw the most beautiful dogs any time I went outside. There were many people walking their dogs and every single one looked purebred and like it had returned from the groomer only moments before. I didn’t take any photos of the dogs and I kind of wish I had. I got to see the wind blow clouds of leaves high into the air and carry them far distances. It was a good trip.
I have no more trips scheduled for months. This is a good thing. I really need time for steady work both on the business front and for emotional processing of the things in my head.
Yesterday I did quite a bit of running around for my son Link. He needed a non-driving state ID since acquiring the driver’s license does not seem to be in the near future. This task became urgent because he’s now 18 and I realized that he would no longer be allowed to fly on airplanes unless he had an official ID. We also went to look at a transitional program that may be of use to him after high school. Then we dropped off some paperwork at Vocational Rehabilitation where we were told that people are finally being pulled off of the waiting list where Link has been at the top for the last six months. So maybe things will get moving for him soon. That would be good. He’s been very discouraged in the past week or so. When I wasn’t helping Link, I was sleeping. Conventions always create a sleep debt.
Today I pick up where I left off. The trouble is that there are many different categories of things that I put down in order to go to World Fantasy. I have business administration to do in the form of accounting and shipping. I have design work to do on this year’s thank you postcard, Planet Mercenary, and Force Multiplication. There are decisions to be made about how to mitigate our taxes for the kickstarter money. I need to sign up for next year’s healthcare coverage, which requires lots of cross checking and thinking because I can’t just sign up for the same coverage we had this year. I have appointments to schedule. Unpacking to do. House maintenance. It is on days like today where my life feels a bit overwhelming.
I spent the weekend in my hometown of Livermore California so I could attend my Grandma’s funeral. I have thoughts about that experience that I’d like to write, but I have been too busy to find the words for them. All last week was about triaging my tasks. I took care of the critical things, canceled some appointments, and let many things slide while I attempted to make space for me to leave and grieve. Unfortunately the world did not pause out of respect for my emotional event.
We had a DNS issue with the main schlock site that Howard and I had to figure out via phone call. This caused many many people to email us, and buried the schlock mailbox. I’ve still got to get in there and find out what emails I have to answer and which I can just file. There are business critical emails mixed in there, people waiting for answers since the middle of last week. I believe that I’ve caught the truly urgent ones, but I won’t know for certain until I clear the mailbox.
Last Friday was the final day of term one for the schools. This means it was the day that grades were finalized. The end of a term always means a flurry of communication and last minute assignments. This is particularly true when a child’s grades are low, as Patch’s have been. His grades reflect the panic attacks and general malaise that he’s been experiencing since school started. Several of his teachers reached out to me with willingness to help bring his grades up before that Friday deadline arrived. I finally answered them late Monday night after I arrived back home. There have been a multitude of emails since then as we hammer out plans for how to proceed.
Yes Patch has real anxiety and panic attacks, but at least half of what we’re seeing is him using those to get out of work that he doesn’t like. Much credit goes to Howard who had a really unpleasant school morning while I was gone. Howard’s approach differed from mine in ways that showed Patch has more control over his panic attacks than he’d been leading us to believe. That unpleasant morning gave me a framework around which I’m building a new plan. So I have to step up my parenting game. I have to pay more attention and be more strict about play time and homework time. I have to make sure there are consequences at home if he’s failing to try at school. All of this has an ongoing impact on my daily schedule during a period when I’d really like to double down and clear away accumulated work things.
Naturally last week was also when I finally got the phone call from the UofU psych clinic to schedule an evaluation. I’d originally put us on that waiting list last January when I was seeking guidance for Link. At this point I feel like Link has all the diagnosis he needs. Fortunately they were happy to switch the appointment over to Patch, for whom I DO need diagnosis. The first appointment for that will happen tomorrow and full assessment next week. At the same time I’ve been communicating with Patch’s school counselor to put in place a 504 plan for him at school. We’ve made some adjustments to his schedule for term 2, and have plans for the school psychologist to observe Patch in the classroom. It is all pretty complicated, but necessary at this time. I need additional opinions and observations to inform my plan for how to proceed.
I’ve also spent time talking with Patch himself. In the wake of the unpleasant school morning, he is much more willing to admit that he’s been using panic as a crutch. He’s on board with the new structure we intend and the diagnostics we plan to do. His head is full of swirling thoughts and emotions. We’ve agreed to have a talking time each day during which he speaks whatever comes to mind and we find out what is in there. Of course what Patch is willing to do when he is calm is different than what happens when he’s under stress. I hope that he continues to work with us and tries to be a partner in quelling anxiety rather than diving into it as a shield against things he wants to avoid.
And then there are the more usual parenting tasks. Gleek needed to go swimming on the day I came back because her mermaid tail (which she saved money all summer to buy) arrived the day that I left. Patch needed to be taken to the archery range to practice because I’m glad for him to be doing an activity that isn’t attached to an electronic screen. Link needed an adjustment to his schedule for term 2, so I had to contact his school counselor. I went to the bank to deposit some money in Kiki’s account so she has funds to pay for an upcoming trip. I also checked in with Kiki via phone to see if she’s doing better. She seems to be. The medicine is making depression back off. And then there is the ever-present guilt that I should be enforcing better eating habits on my kids as they forage the kitchen.
Later today I plan to call my parents and check in on them. I expect this week to be harder on them than last week was. Last week they had a huge list of overwhelming chores related to Grandma’s funeral. This week everyone has gone home and they are left with daily, hourly reminders of the fact that Grandma no longer needs their regular care. This is a huge shift in their patterns of living. They’ve been tending Grandma extensively for the last decade. My daily life is not impacted by her absence, and I can’t let that make me forget that theirs is.
And then there are the business tasks. I spent my work hours yesterday doing the accounting. I had two week’s worth to do since I didn’t have brain for it last week. I also had to prep for the tax appointment I have scheduled tomorrow. I’ll be meeting with our accountant and discussing the impact of Kickstarter funds carried across the end of the calendar year. I’ve got a couple of contracts to read and sign, one for book printing, another for renewing the lease on our warehouse space. I’m also mid negotiations for hiring an editor for the Planet Mercenary project. We’ve found someone with the expertise we need, now we just have to hammer out schedule and work methods. There are packages to ship, writing to do, and layout work that is necessary.
Next week I travel again. We have tickets and reservations for me to attend the World Fantasy Convention in Saratoga Springs, New York. There is part of me that is very tired and willing to consider cancelling that trip. There are lots of solid reasons for sending me, but I’m still scrambling to catch up after my trip last weekend.
For now, it is time for me to go do some work and save the rest of the thinking for later.
Writing about grief is hard because grief is never singular. It comes as a flood, a single mass that breaks and flows filling up spaces. Yet the mass is made up of a hundred million parts that all must be managed. It is also not singular in that rarely is only one person affected.
My Grandma died on Monday. The fact of her death is an impact crater with those closest most affected, first my Father, then my mother, Grandma’s brothers and sisters, me and my siblings, then further out to my children and their cousins. So many people with so many raw feelings. My head is full of thoughts, yet my writing of them is constrained by the need to not add hurt. When feelings are all on the surface it is best to tread lightly.
Death brings with it a list of chores a mile long. My parents are having to dismantle the care systems that they had in place for Grandma. All of us are scrambling and rearranging our schedules so we can gather for a funeral. There is legal paperwork, flowers, an obituary, rides from the airport, housing for extended family, and a program to plan. Decision after decision is to be made, all while rational functions are impaired by grief. I don’t know a way to do it better, all of it feels necessary. And there is some comfort in the list of chores. They provide a focus, a way to move forward and rearrange life without Grandma in it. Though I worry about the space after, when chores are complete and all that is left is an absence.
I’ll admit that I dove into the chores. I tried to involve myself and make myself useful. I’d hoped to alleviate burden by managing some communications for my parents. But it is possible that my attempts only increased the number of phone calls and confusion. I know I wore out by the end of today. I have my itinerary. I know when I leave, where to pick up my rental car, and the hotel where I will stay. Tomorrow I have to dive into work and prepare things so that Howard will be able to manage school and work while I am gone.
I have crying to do. I haven’t done most of it yet. I’ve been too busy arranging things. But there is space for it this weekend. I will go be in that space and see what feelings join me there.
For now I reread Grandma on her 90th Birthday which I wrote five years ago.
Perhaps it is because this is the month of October. Maybe the rain and falling leaves have affected my mood. Or it could be that I soon expect a phone call which will tell me that I need to fly out for my Grandma’s funeral, thus I needed a distraction. For whatever reason, the movie Crimson Peak drew my attention and I found myself wanting to go see it even though I generally don’t like horror films. Or rather, I don’t enjoy gore-fest, jump-scare movies that are about murder and death. I do enjoy spooky thriller movies with mysteries to solve. Crimson Peak does have blood, death, and other dark things, but it is more a gothic love story than a horror movie. Gothic heroines do not get happy endings, but they do have beautiful scenery and mysteries to unravel. Crimson Peak has all the dark mystery of Wuthering Heights and matches it for mood. The opening lines say that it is not a ghost story, but rather a story with ghosts in it. I found that to be true and I liked that about it. I liked that the supernatural world entwined with the material and affected it, but the plot did not revolve around the existence of ghosts. The movie was beautiful and dark. I enjoyed it for what it was though it is not a happy story.
Far away my Grandma lays in a hospital bed, tiny and weak. The latest report is that she is eighty four pounds and has forgotten how to swallow or speak intelligibly. There are not many days left. Her room is antiseptic and hallowed, a place where she is getting ready to leave the body she’s inhabited for ninety five years. That room is about love and letting go.
I suppose it makes sense that I’m attracted to a story about loss just now. I’m able to follow the emotion, but all the images are romanticized, beautiful, and clearly fiction. So I sit here in the evening and think of the movie I just saw. I imagine the hospital room where my parents are sitting lovingly nearby so Grandma won’t be alone. And I am glad to live in my world that is more prosaic and less vivid than the one on the screen. I’ll take death as a granter of peace and passage over howling ghosts and crumbling mansions. I’ll take my warm bright home full of video games and laughing. My life is a good place and sometimes I can best see that when I have something for contrast.
It is not often that Howard and I get a chance to put on our nicest clothes. Usually it is in connection with an award ceremony and thus is an inherently stressful situation. On the cruise we got to dress up without stress and we quite enjoyed it.
I’m quite pleased with the dress. I found it at a thrift store. It had been overlooked because at the time it was a pants suit. I altered it to be a dress and made the shrug to match. One of the nicest things is that the base fabric is polyester knit, so I can wad it into a ball in my suitcase and it will still come out wrinkle-free and ready to wear.
Got out of bed before the sun was up and discovered one of my kids was awake before me.
Researched the causes of night terrors.
Hammered away at layout and felt excited for how some of the pages are shaping up. I ran out of brain before I ran out of enthusiasm.
Answered some email.
Made an appointment with a podiatrist.
Made an appointment for a psychiatrist check up.
Called to excuse a school absence.
Researched transitional programs for kids with autism who are struggling with becoming independent adults.
Left a message for a parent advocate who I’m told has inside information on resources available to parents of special needs kids.
Took my son to his first appointment with a tutor.
Met my two junior high kids as they came in the door and double checked to see what sort of day they’d had.
Looked at the front lawn and remembered (again) that I keep forgetting to make one of the kids mow it.
Did some brainstorming on a plot problem in my novel.
Began wrapping my head around the structure I’ll need as a framework for the picture book story I want to tell.
Took a quick nap with a purring kitty.
Sent emails to collaborators and potential editors on the Planet Mercenary project.
Answered the phone to discover that my son’s Eagle Scout certificate has come through.
Picked up the mail from the mailbox.
When I said that my brain was coming back up to speed. This is what I meant. Until I started listing things I hadn’t really been aware of how many things I’d accomplished today, nor how scattered they all are across my various life roles. I shall not list all the things I would have liked to do, but didn’t get done. That list is even longer. But if I can just keep doing the things, then bit by bit all the big projects will get done.