Family

Diagnosis Again

By / April 21, 2014 / 4 Comments

“Link is a patient of mine, his diagnosis is Attention Deficit Hyperactivity Disorder…” The handwritten note continues with details of medication, but the words are blurred by the tears in my eyes. It is so small this piece of paper, handwritten on a prescription pad. I wipe away the tears with an angry swipe of my hand. Nothing the paper says is news. Link was diagnosed years ago and has taken medication ever since. The only reason I hold this paper is because Link’s current IEP team mentioned that his official diagnosis is not documented in their paperwork. They have a two-inch thick binder full of papers about Link –skill test results, IQ test results, language test results, nine years worth of specialized educational plans, psychological reports–but none of them include this diagnosis. I’m told that if I add this little paper to their stack, it may open up additional support options for Link. So I called the Doctor’s office and he mailed me the paper. It changes nothing. I can’t explain why seeing it written down should make everything feel more real. It just does.

Infants have incompletely formed brains. There are many things that they are incapable of comprehending until their brains develop further. The remainder of childhood is one long biological trade-off, alternating body growth and brain development in a careful dance to optimize the probability of survival. This means that children experience periodic bursts of new comprehension. Suddenly they see the world in new ways and have to re-evaluate everything based on their new comprehension of it. This is why a five-year-old who has never drawn on the walls before suddenly begins to treat the entire house as a huge canvas. The teenage years are hugely important brain development time. Teens are nearing adult comprehension and begin to look forward toward fending for themselves. They desperately need to have an identity and a goal. Link is fourteen, his childhood comprehension of himself is no longer adequate. He has outgrown many of the childhood tools he used to manage his cognitive differences, but has yet to acquire comparable adult tools. He was left with an awareness of being different and little vocabulary for explaining why. He struggled. His struggles drew the attention of myself, his teacher, Howard, and the school psychologist. It was time for a new round of testing. We needed to assess what changes brain development has made and then based on that information we needed to create a plan. We’re mid-testing now. I don’t know what the plan is going to look like except that a huge part of it is sitting down with Link, showing him the test results, and explaining to him what they mean. Link is old enough to be included in the planning. This is part of the process of turning his life over to him.

Link is not the only child for whom I have a prescription pad diagnosis. I have participated in counseling and management of issues for all of my four children, for children of neighbors and friends, for relatives, even for acquaintances. I’ve helped people with ADHD, Autism, Aspergers, Bipolar Disorder, Multiple Personality Disorder, PTSD, Psychotic episodes, Anxiety, and Depression. Psychology fascinates me and I study it everywhere. I’ve learned enough vocabulary that people ask me about my credentials. I have none, only experience. Yet I am not an expert by any means. And even those who are experts are regularly baffled by the intricacies of human minds and needs. So I study my son. I read the reports until my brain is tired. I gather a team of credentialed experts to help him. Or rather, they gather themselves because, once again, exactly the right people are in place to help with this process. The elementary school psychologist who sat me down all those years ago and told me I might want to consider ADHD is now working at the junior high school. Once again she is here to help Howard, Link, and I as we gather information and plan for what comes next.

Most of what comes next is exactly what we’ve already been doing; small adjustments in classrooms and at home. The necessary changes are so small that it is hard to believe that they are necessary. We make the changes so that Link can learn without floundering. This time one of the small necessary things is including Link in the process so that he will understand himself better. He will be informed and thus able to act upon information rather than stewing in fear and ignorance. I take the prescription paper and I put it on the stack of things to deliver to the school psychologist. Perhaps this declaration of diagnosis will help open a door which Link will need to walk through. My feelings about it are for me to work through without troubling Link.

Thoughts on Avengers — Spoiler Free Version

By / May 7, 2012

“What was your favorite part?” Howard asked Patch.
“Do I have to pick just one?” Patch answered with a concerned look on his face.
No son, you do not.
We spent a good hour this afternoon just talking about all our favorite bits. I’m not a fan of the Avengers comic, nor was I particularly attached to any of the Avenger characters prior to seeing the recent spate of Marvel films. This movie made me fall a little bit in love with all of them. I’m looking forward to seeing it again so that I can hear those funny lines in the non-action-y scenes when Patch and Gleek wiggled, asked for more treats, or otherwise unfocused my attention. During the action-y bits we were all enthralled.

Storymakers Day 2, the Whitney Awards, Retiring a Dress, and the Day After

By / May 6, 2012 / 2 Comments

Howard is out of his element at the Storymakers conference. It is an event full of women, many of whom read and write stories that are essentially romantic. I’m not precisely in my element, but in many ways it is a better fit for me than the average Science Fiction convention. On the whole these are readers of Austen, not Niven, though there are definitely individual exceptions. Not that “fitting” matters because we always find wonderful people at these events. I guess the difference is that I’ve walked away from Storymakers with a long list of follow-up items–people to contact, things to do–where Howard is spending today switching gears. Tomorrow I’ll be following up and he’ll be moving on. Although that may have more to do with me being the business manager and him being the artist. Perhaps the whole perception is entirely imaginary, a result of me being very tired.

The extreme fatigue hit me right after I finished my last teaching hour. The cover design class went very well. We covered the important material and were able to give intelligent answers to all the questions. I’d love to co-teach with Crystal again anytime. I’d love to teach that class again. In fact I have a whole list of classes that I want to be able to teach. I’m going to blog that list (possibly tomorrow) so that I can reference it as necessary. Often I’m invited to participate in programming only to draw a complete memory blank when they ask what I’d like to teach. If I file the list intelligently, in an easy-to-find location, then perhaps it will someday be useful to someone who is considering inviting me to an event. If nothing else, making the list will convince the back part of my brain that we really are allowed to think about something else now. On the same theory, I’ve made a list of things-to-blog. In making that list, I realized that I still have thoughts left over from our trip to Moab. It has been an exceedingly brain-busy three weeks.

At the end of the Storymakers conference, I attended the Whitney Award banquet with my mom. Howard volunteered to go home and be with the kids so that we could stay. I wore my orange dress, the one I last wore to the Hugo award ceremony in August. I was a little worried about wearing the dress, the night of the Hugos was not my best night. I knew that wearing the dress might trigger somatic memory, particularly since I was wearing it to another award ceremony. I did not want another panic attack like the one at the Hugos, but I needed to wear the dress again. I needed to see if I could disconnect the panic from the dress. The Whitneys were a good practice event because they are much less emotionally fraught for me than the Hugos, we were not eligible for any of the awards. Also, I had a change of clothes in my car, so in the very worst case I could duck out and change. The trouble with the dress is that it fits tightly across my ribs. It does not actually constrict my breathing, I can fill my lungs completely, but it feels like it constricts. Constrictive clothing can magnify or trigger a panic attack. Additionally, the fabric of the dress does not breathe at all and so in a warm room I can easily feel over heated. Over heating can magnify or trigger a panic attack. It turns out that this lovely dress is at least partially at fault for my Hugo experience. I put on the dress and was fine. I walked down to dinner and felt completely relaxed. I sat down to dinner and I had to arrange my thoughts carefully and breathe cautiously for about 30 minutes while my body toyed with the first edges of a panic attack. I prevailed. I wore the dress all evening, had a lovely dinner conversation, hugged all my friends in the post-ceremony mingling, and went home feeling triumphant. However it is time for me to retire that dress. The things I love about it do not outweigh the drawbacks. Fortunately I have something much more comfortable that I can wear to the Nebula award dinner.

My mother reports that she thoroughly enjoyed the Storymakers conference. She has dozens of ideas about how to improve her book and an invitation to submit directly to one of the editors who also attended. I’m so glad that she was able to come. I get to have her for three more days before she returns home to care for my grandma, who will be released from the hospital soon. This is mom’s last vacation for awhile because grandma will need lots of loving attention as she continues to mend. Once again I wish I could be more help. I live so far away from them. But at the least I can give my mom this vacation she has earned.

Tomorrow, after I scramble to catch up on all my work, I’m headed to The Avengers with my kids. I’ve heard it is quite good. Howard has already seen it twice. Today I rest.

The Thoughts I Think at 3:30 A.M. When I am not Asleep

By / April 26, 2012 / 3 Comments

It is 3:30 a.m. and I lie in bed worrying that I bought the wrong table at IKEA. It is an irrational worry. I know this, but in the drifting space between waking and sleeping logic is disconnected. I got a table to be my new work desk, but when I got it here I realized it was not the right shape. This is obviously the first minor collapse in my decision making skills which will make everything fall apart. Last night I had similar emotions about the light fixture I chose, which Howard assures me is fine. In this case the desk will have to be returned. It is a minor setback in a project that is mostly going well. Except that it delays the time when I’m settled back in my office instead of cramped up at an awkward desk in Howard’s office. Half awake it seems like I’ll never be able to get any focused work done again.

I wanted to start this next paragraph by saying “the real problem, of course is…” Only I can’t. The trouble is multitudinous. The construction work on my office is done, the moving in is yet to be accomplished. If I could get that done, it would greatly help to settle my mind. Only I’ve got orders waiting for me to ship. I should do those first. And the accounting. I haven’t sat down with the finances since before I took my office apart. Since that date I have spent thousands of dollars on remodeling costs, a trip to California to see my sick Grandma, and some new furniture for the new space. In theory I’ve budgeted and mental math says I’m still inside budget, but I don’t quite trust my mental math or decision making skills right now. So, I ought to do accounting and settle my mind. But Kiki got a last minute invitation to Prom. It is on Saturday. I have to make several minor alterations on her dress. It is a fairly small task except that my sewing things are in the big stack of things which used to be in my office. I’ll have to dig them out. The dress has to be done. I should do that first. Except tomorrow I have a meeting scheduled with Link’s teacher. It turns out that he has not been doing his homework or school work of late. There is a pile of things for him to catch up on. I need to conference with the teacher to figure out how best to help him accomplish this. We also need an ongoing plan because he shut down after feeling overwhelmed. Link has earned a spot center stage in the “focused parenting” category. It is nothing that can’t be handled. I can do it easily when I’m on top of my game. Which I’m not, as evidenced by my horrible poor decision making regarding the selection of an office table. Tomorrow also has to feature the construction of a milk carton catapult so that Patch can give a presentation on catapults to his class. I need to buy Marshmallows for that. Only the van is almost out of gas, so I need to buy gas before I drive anywhere. While I’m buying gas I need to get gas for the lawnmower. The lawn is nearly to the point where it can be measured in feet. So I should make the kids do their lawn mowing. I should also call my Mom, because the last update on Grandma was two days ago and she was weaker then. I should be doing more to support Mom and Dad. I should at least be keeping up with how things are going there. Except that I keep burying that thought, or getting distracted, because it hurts. So many things hurt and I’ve got no time to break down and cry until at least Saturday. Tomorrow Gleek begins a time swap activity in which she spends a week living as her Grandma did in 5th grade. This means altering our family patterns to accommodate the fact that she’ll not be using any electronic entertainment, we get bonus points if she makes it all week without using a microwave or driving faster that 50 miles per hour. I love the idea of this assignment. I want to do it right, make it a positive experience. But we’ve got to get it done early because next weekend I have a conference and the kids will be babysitting each other while Howard and I are presenting. This will work best if they can watch movies while we’re gone. So time swap has to start late tomorrow night. I still need to work on two presentations for the conference. I have notes. It shouldn’t be too hard, but it isn’t done yet. Perhaps I should get that done first thing tomorrow so that I don’t have to worry about it anymore. After the conference we’ve got company coming. At least I’ll have a sofa bed for them to sleep on. It’ll be delivered tomorrow evening and will be placed into my newly remodeled office. Hopefully it will be delivered before writer’s group, but likely in the middle of it. I need to do the reading for writer’s group. I should do that first thing tomorrow so that it is done. I really hope that the sofa is delivered and is exactly right. After the table debacle I’m afraid that I chose wrong for that too. Then there are the advance copies of Sharp End of the Stick that arrived today. I should be focused on setting up for pre-orders. I should be testing our fulfillment system and learning how it works with the new software I installed last week. But doing that work is really hard when I’m intruding in Howard’s space. He really needs me out of his office. He hasn’t been able to get his work done this week either, not the way he needs to. So I really should focus on getting my office arranged and set up. If only I had my office put back together, maybe I could prioritize everything else. Except, it really is the wrong table. I need to take it apart and return it to the store. I’ve spent so much money lately and I can’t stand the thought of spending more on a table I’ll regret for years. I just need to go get a different table…

Thus my thoughts circle themselves, sometimes drifting to sleep, sometimes snapping awake. There are too many things in my head. Time to eat food since I’m not sure if I really ate dinner. Then perhaps typing over a thousand words about all the dumb stuff in my head will help it clear so that I can sleep. If I fall asleep right now, I could sleep for two hours before I need to get up and start doing all my things.

In My Absense

By / April 21, 2012 / 2 Comments

The fear is that when I step out of my regular life, stop doing all the things I do daily, that everything will fall apart. Sometimes it does happen that way. I go out for an evening and get endless calls on my cell phone to mediate conflicts between siblings. After the fourth call I begin to wonder why I bothered to leave. Lately this has not happened. Lately, I go out for an evening and no one calls me. I’m not sure if this is because the kids are getting older or if the careful shifts I’ve made in the last year have helped the kids learn self sufficiency. All I know is that I’ve been gone for two days and my family back home is drawing together instead of falling apart.

Howard helped Kiki draft a bill for her Gov and Cit class. Link hauled out his Pokemon cards and has been teaching Gleek and Patch how to play. Kiki got herself up at 6 am this morning, cleaned the kitchen, then drove herself over to the school to matte pictures with her art teacher. Howard finished all his work despite being time-restricted by carpool duties and space restricted because my computer is currently residing on his drawing table. They all have a plan for today which involves an outing together. All of them are learning and growing as the cooperate to fill the gap I left. All of us will be really glad to have me return again on Sunday

It shows me, once again, that sometimes the most important thing I can do for my kids is to get out of the way and let them overcome by themselves. I’m certain there have been conflicts and crankiness. I know that the longer I’m gone, the more chances there will be for everything to fall apart. Things fall apart often enough when I’m there. I’m glad that I get to hear the happy stories and that all the conflicts are already resolved. Being in California continues to be hard. Hospitals always are and I spent nine hours with Grandma yesterday. Coming home to my parents house is not the same as going home to mine. But after talking with Howard and the kids this morning I begin to see that spending time with Grandma is not the only good thing which will come from this trip.

Grandma in the Hospital

By / April 20, 2012 / 2 Comments

If you’ve ever seen the movie Driving Miss Daisy, that’s a good place to start for picturing my grandma. She’s a feisty, cranky, southern lady who is accustomed to giving orders and having them obeyed. Only now she’s ninety-two years old and in a hospital where decisions are made for her all day long. She doesn’t have the physical strength to resist anything. We’re all glad to see her crankiness resurface. It means she is feeling better. For five minutes at a time she’ll tell us that hospitals make people sick and we should just take her home, there is nothing wrong with her. My mother repeats what she’s said multiple times per day, that we’ll take her home as soon as the doctor allows. Then Grandma’s gaze sharpens for a moment and she says. “He’s just a little doctor. Beat him up and take me home.” Then the sharpness fades, her head drops back to the pillow and she is asleep again, exhausted by her own wilfulness.

Mother and I sit in silence while Grandma sleeps. We don’t want to talk and wake her up. If she does hear us talking, she’ll want to know what we’re saying. Then we have to speak loudly and in short sentences so she can hear. Even then, most things are too complicated for Grandma to retain. I tried to show her a flooring sample from my office and she seemed to think I was telling her that it was a toy building block, that I was going to be making and selling toys now. The conversation about my book went better. I gave her a copy of Cobble Stones, fresh from the printer. She petted it with her hands, so pleased to hold a book that I wrote. Grandma was my first paying market for writing; a penny per word for any story I wrote. Grandma opened the pages and looked over the words, running her fingers along them. “I’ll read it later.” she said, “When my eyes are working better.”

Grandma argues with my Mom. My mother is the caretaker, the one who is constantly trying to get Grandma to take pills, do physical therapy, telling her she has to stay in the hospital. Grandma doesn’t argue with me. I am a grandchild and thus cherished. My coaxing to get Grandma to eat results in her eating, one wobbly spoonful at a time. The worst argument she gives me is an eye roll. We’re pleased that I get her to eat three quarters of a pudding cup and six bites of mashed potatoes. Later, Grandma tells the nurse about how I badgered her into eating, but she’s doing it happily; bragging about her granddaughter who can make a cranky old lady eat. Grandma calls herself a cranky old lady sometimes. Other times she is convinced that her hair is still brown, that she is completely well, and that there is just a conspiracy to keep her in the hospital so that the hospital employees can have jobs. Toward the end of the evening Grandma starts noticing my yawns. “You need to take that girl home and put her to bed.” She tells my mom, as if I’m still four-years-old and needing tending. “Then come back and get me out.” Grandma adds.

“Have you had breakfast?” Grandma asked at six p.m. Her long afternoon nap had confused her into thinking it was morning. I assured her it was dinner time and that I would go eat soon. We had the same conversation many times over the next hour. The late afternoon light from the window seemed like morning sunlight to her. We also told her what day it was and how long I would be staying. Once she counted the days from Thursday until Sunday on her fingers and I promised to come and visit her every day. Hospitals are time vortexes. She’s been in one for 18 days now, this particular confusion is completely understandable. Most of our conversations are five minutes or less before Grandma drifts to sleep again. But twice during my time there Grandma was alert and focused for ten minutes. I told her about my kids, showed her pictures. I gave her the painting that Kiki made for her and the colorful hat that Gleek made. We took pictures of her wearing the hat. Grandma smiled and asked questions about how old they are and how tall. I held her hand and we talked for awhile. Then the nurse arrived to give Grandma a breathing treatment. Hopefully the treatments will help stop the rattling rasp Grandma makes with every breath.

Being here is very hard. It is also good. Three more days to go.

A Trip, A River, and Painting Wood Trim

By / April 18, 2012

I’m getting on a plane tomorrow. This was not in my plans for the week, but my plans don’t matter so much when my Grandma goes back to the hospital. My brain is a mess of simultaneous thoughts.

I want to go hug my grandma. I want to be there for my parents and offer emotional support because they’ve been helping Grandma with medical stuff for years and the last two weeks have been particularly draining.

I don’t want to go anywhere. I want to be here at my house with my people. I want my office put back together and life to be nicely routine.

I wish the plane ticket were not so expensive, particularly in a month when our finances are in a lull and I’ve just spent piles of money on an unfinished office remodel.

I feel like I’m over reacting. Perhaps hopping on a plane to go visit is more than this particular medical adventure calls for.

I’m aware that even if there is no hurry, this trip has value. Seeing loved ones is always a good thing, because time is short and Grandma is ninety-two.

I keep looking at the calendar and wondering if I’ll need to shoehorn a funeral into it somewhere. Then I feel guilty that the auto-scheduler in my brain instantly calculates when such an event would be most convenient.

I wander upstairs to look at my sleeping kids who don’t know yet that I’ll be leaving while they’re at school. I feel guilty that all my usual carpool, homework, and bedtime responsibilities will be dumped on Howard. Part of my brain frets that he won’t handle it right, because that part of my brain is convinced that my way is “right” while another part of my brain knows full well that he can manage anything.

I don’t want to go. I expect the trip to be emotionally grueling. I’ll spend most of it in a hospital with Grandma and I don’t like hospitals.

I know that going is really important. I knew it this morning when the thought rolled over me like a wave. I knew it even more when Howard said that he felt the same. No matter how I feel about all of it, going is the right choice.

Over and through all the other thoughts, I’m aware of a deep river of emotion that I can sense only vaguely. I’m pretty sure the river is grief. I’m grieving for a death which has not happened yet, but that I know will come. Along with it I’m grieving the impermanence of life and the fact that normal is a fragile state. Grief is big, unmanageable, unpredictable. I don’t want it. Sometime that river is going to rise up and flood me. I don’t know when. I don’t know what debris I’ll find when the flood has passed. All day long my internal mental topography has shaped itself around that river trying to avoid the flood. I have things to do, decisions to make. Wood trim to paint.

Yes. I spent most of today painting wood trim for my office. It needed to be done so that the trim can be hung on Friday. Of all the things on my list it is probably the easiest thing to delay. But it was a manual task with no emotional baggage whatsoever. I could focus all my mental energy on moving my brush smoothly across the wood. And after fifteen or thirty minutes the piece of trim would be done. Piece after piece I could track my progress, visual evidence of tasks completed. In contrast, packing is more important and urgent, but littered with emotional landmines that could blast holes for the river to flood through. I will leave tomorrow with six pieces of incomplete trim. Kiki will finish them in my absence, or she won’t, and either way the result will be fine.

For now I need to go to bed and try not to think to much, because even my most insistent thoughts can’t make the impending flood disappear, not even by telling me I ought to feel differently. Tomorrow I will get up and I will use my to do list to navigate my way onto a plane. Somehow the doing of things is less difficult than anticipating them.

Returning Home

By / April 14, 2012

The house feels large after the coziness of a condo. The six of us can scatter one to a room and we’d still have rooms empty. The condo forced us into togetherness–four kids to one bedroom with a single room for cooking eating and relaxing. Over the long haul that small space would create all sorts of stress and friction, but for a vacation it was perfect. In the last moments before we locked the condo and left, I looked around the spaces where we’d spent four days. Partly I was looking for stray items, but I was also committing the place to memory. I was sad to leave, which is probably a sign that we’d found a good vacationing place. It is one we’ll be glad to return to next year. We’re trying a several-year-long experiment of returning to the same vacation location. This was year two. The familiarity of the location reduced several vacation stressors. We’ll see if repeat visits create a comforting vacation fabric or if we’ll need to change destinations in order to attain the same stepping-out-of-regular-life quality which is essential for vacationing.

Perhaps the house feeling large has to do with the quantity of responsibilities contained inside as much as the spaces. Cooking in the condo felt a bit like playing house. I got to open cupboards and discover resources. It was a bit like a scavenger hunt. I need to make scrambled eggs and pancakes, what available tools can I turn to that purpose? Here at home my eyes are always snagging on things to do. Every room has associated tasks. On Monday our regular lives will return in full force. I view that approach with neither dread nor anticipation. For now I am content to coast on the last edges of vacationing.

The Next Seven Weeks

By / April 9, 2012 / 1 Comment

In the next seven weeks we have:
re-building the shipping system
all the end-of-school activities of which I’ve not yet been notified
advance copies of Sharp End of the Stick (SEOS)
a school art gala
opening pre-orders for SEOS
Kiki’s AP art portfolio
receiving the SEOS shipment
teaching at LDS Storymakers conference
sending me to the Nebula weekend in DC
a time-swap week during which Gleek will pretend to be living in a pre-computer era
sending Howard to World Steam Expo in Ann Arbor
a dance festival
a week long visit from my mom
office remodeling
unspecified child crises which will pop up randomly and inconveniently
field day
preparations for Deep South Con in June

All of those things are important, as are preparations for GenCon and WorldCon. But this week contains the most important event of the entire year. This is when Howard and I gather the kids and flee our work to go do nothing in particular in southern Utah. The only agenda is to be together. Hopefully fun will be had, but even if crankiness is had, that is fine. Uninterrupted time together is the point.

As for the other stuff, I’m not particularly stressed about it all. I can see where everything fits. It is going to be busy, but not crazy. I hope.

Brief updates

By / April 7, 2012 / 1 Comment

Copy edits for Cobble Stones are done. I’ve got a cover draft done. Schlock book layout is done. Up ahead are Cobble Stones back cover copy, Cobble Stones page layout, preparation and packing for a family trip. This next week is spring break. It is going to be an internet light week for me. I’ve got to meet deadlines and then spend focused time with family. Our trip location does have internet, but I’ll have to access it via my phone, which doesn’t allow blogging, or via my little laptop, which is currently limping along. When I get back from the trip I’ll probably have lots to say and some lovely pictures to go with the words.

In other news: my grandma is doing well. She’s been moved from the hospital into a rehabilitation facility where they’ll be helping her practice walking on her newly-pinned and healing leg. She’ll probably be back at my parent’s house in two weeks. The customs issue is completely resolved and the packages delivered. Patch’s book project is complete and turned in. The kid drama has also calmed down considerably. Having a week off from school is going to be really good for everyone.