Cleaning Sister's room

Sometimes mothers blog about cleaning their houses. I'll admit to feeling perplexed and slightly jealous when I read these entries. We have lived in three houses since we started farming, none particularly tidy (except maybe the one we were borrowing and could only bring a few boxes' worth of possessions to). Though putting away our suitcases last month was a triumph, it didn't result in that room actually being clean for more than a day. I can't blame the special needs parenting, because farming and other things come into it too.

I have a grandma who makes it sound like cleaning your house is the most noble, enjoyable thing in the world. In her eighties she was still telling me how good she felt because she still scrubbed her kitchen floor on her knees every time (I do too, for the record). At her house, the dishes are always done. Mealtimes are the framework for the rest of the schedule. She knows everything that needs to be cleaned, organized, and erranded. She watched neighbor babies or children when needed for 60 years. All the kids around there would come and knock on her door for a cookie. And she seemed, as far as I could tell, absolutely proud and satisfied of her work in a way that I have never seen in someone without wrinkles. Most times when I talk to her by phone, I still hear something about her housekeeping and how it is going with her current health. I hold up her stories and sniff them, hoping that the essence will go into me and make a slight internal change. It does.

On Sunday, it was 80 degrees, and the kids had the most wonderful afternoon. John and Sister painted with tempera paint on the porch. They painted on fingerpainting paper and cardboard boxes. Sister earned two dollars for helping John with the paint, while I worked in the kitchen just off the porch. Do you know how long a little non-walking kid can occupy themselves painting a cardboard box and then lifting it on and off of a bench and studying it from every angle, including crawling up and down the front ramp between each viewing? I didn't either.

After painting, we put last year's wading pool at the bottom of the ramp. With duct tape, we made it useable one more time. Sister had the honor of holding the running hose (and thus the power to annoy and startle John in infinite ways). They spent a long time in the pool, and suddenly I realized that John had missed his resting period. It was so nice to see them absorbed in playing outside.

On Monday, John had a fever again, just a little one. I couldn't take him out, but he was still playing. We started to work on Sister's room. I told John that we would look for the red ball, an important ball from his hammer-ball toy that has never been lost until last week. John watched as I separated trash from toys, going through the room with two big bags. We rotated slowly around the perimeter of the room. Layers of papers, markers, crayons, plastic pieces from toy sets, and clothes had settled geologically onto every surface, somehow all held in their inertia by five flattened pieces of (!) bubble gum that I finally discovered on the wood floor. The bubble gum must have exercised an unintentionally-evil, downward force, causing it to be impossible to pick anything up in that room. When I got three of the lumps up, the spell lifted and the room almost looked like a room again.

We had to stop for the day before we reached the red 40 gallon bucket by the closet.

The next day, John's teacher was sick, and he still felt hot, so back into Sister's room we went with fresh bags. I took anything that was not trash but not easy to put away, and put it in a bag to hide and tackle on another day. The bucket was emptied and shooed outside, and we cleared the closet floor. Outgrown clothes were hid in another bag, for me to wash and give away on another sisterless fever day. I washed the closet floor and John played hiding-in-the-closet.

In about two more days, the room could have be really clean, with a trip for plastic containers and a long book and toy weeding. Instead, with another plan cancellation the next day, we moved on to the living room. I took the Santa, snowman, and nativity scene down. Because the nativity scene is fun to play with, the windowsill where it sat had turned into a surface to coat with other small toys. We came up with more places to look for the red ball, and in doing so put away John's toys. I scrubbed the fly spots off the fan pulls. I took all the little taped cutout toy pictures off the windows that Sister had put up to show Santa, and washed the window where she had written in window marker: "It is almost Christmas! My Christmas spirit is so merry and light!" and more words to Santa. The only thing on the windowsill that would stay was a ceramic pot with a small semi-succulent trailing plant that I received at the baby shower before Sister was born. When she was two or so, I had told the giver by email that the plant was still doing well and the pot hadn't yet been broken. She replied: That the plant and [sister] are doing well is a testament to your loving care of them both. I was surprised. Almost six years later, I remember but don't know if I understand those words.

When Sister came home from school one of those days, she not only found her clean room, but a package from the mail with a few new clothes that actually fit. I turned John over to his dad and invited her to the coffee shop. She must have either been relieved that she was finally getting the right amount of attention, or wondered if her real mom had been abducted by aliens and replaced. We found that the coffee shop was out of business, probably because of the economy. We went to the downtown of our little farm town to find an alternative. The bookstore and ice cream shop had also closed, so we went to a beer-heavy corner grocery to buy a packaged ice cream and we went to the park. Sister played on all the equipment and even came when I told her it was time to go.

Everything was cancelled for three days, and I temporarily pretended to be a normal mother, to both kids. No therapies. No paperwork day. I just cleaned the house, changed John's diapers, fed him, and cooked dinners. I only made four or five bureaucratic phone calls the whole time.

It's funny, because on Sunday, while the kids were still at church and I was home, I called a friend who is a mix of angel and a firm procedure-and-paper support. Not only does she say a lot of funny stuff, she's nice enough to laugh at many of the stories I tell too. I said: "I need someone's permission to discharge John from OT." I explained the situation and why it would benefit our family to take John out of one more therapy, just for a few months. This would mean we would be down to three therapies per week, from six last fall. She listened and gave her blessing. I told her I was almost ready to consider the possibility that there was a way to get caught up with my life constructively, instead of being enraged and underwater about not being caught up. It's funny, because I thought going down to three therapies a week was going to be so good, but instead, the very next morning, I got a taste of what it would be to have no therapies. Don't get me wrong, I find therapy and development fascinating, and I was vigilant in trying to find the right therapists for John--but I'm sorry to say how much I loved it. I'm so tired of fucking fixing everything.

I'm curious what will happen with this trend. Don't ask how much more there is to do around here. It is, or seems, about Mount Denali sized. Comparing supposed obligations to supposed resources, it seems like threading a mountain through the eye of a needle. Lots of people climb Denali and love it. Some don't make it. Would I climb that mountain voluntarily? No, absolutely not. Would I do it if I was set in the middle of it and there was no going down?

I think one of these days something is going to click, and the mountain is going to change. After all, first you see a mountain. Then you see there is no mountain. Then you see it really is just a mountain.

What do special needs moms do all day?

Which of these things did NOT happen in the actual day of one mom to a child with special needs?
Not all events in day are included.
You may mark more than one answer.

A. Meditate

B. Send children to school and Mother's Day Out.

C. Wash breakfast dishes.

D. Read new entry in Hopeful Parents blog and cry. Link to more entries, cry more. Realize that valuable paperwork time is being lost. Realize that crying is equally valuable. Oh well.

E. Go for short walk, contemplate carrying three year old abandoned chunk of moldy hay home.

F. Receive call from husband reporting that officials are attempting to conduct an armed raid of the business of a family friend and he is going there to provide moral support.

G. Remove bubble gum, three types of paper, four red trucks, dishes, cause and effect toy, crumbs, more art supplies and large pile of unfinished valentines from kitchen table in attempt to mentally transition between F and H.

H. Conduct a race to see how much paper can be cleared from desk in a responsible fashion. Score 20 pieces of paper, 3 phone calls regarding SN child, and 1 large unit of paperwork regarding SN child.

I. While driving, see husband driving his truck going the other way from you on highway, a normal part of his workday. Call husband to say hi. Listen to husband report that moments before, while he was inside a convenience store, his truck slipped out of gear, rolled down a hill, crossed both sides of a large state highway, went over an embankment, and landed in a hole in a golf course, soon to be swarmed by sheriffs and police. Listen to husband report that truck is fine and no one was hurt or arrested.

J. Pick up SN child from MDO. Drive home in peace. Remember yesterday telling speech therapist that child (who has "secondary" PDD) does not seem to grasp social concepts, use social language, or have interest in peers. Drive. Hear child from back seat suddenly say, "I like playing with Daniel."
Try not to have an accident while clapping and cheering. Not an accident like our kids have, well, that kind too, but you know, a driving one. Hear child say, "I wike pwaying with Daniel at schooow. Daniel, is NICE, toMEEEEEE!"

K. Hear SN child, same one who does not use social language, say IN CONTEXT in the span of one hour, both "Thank you" and "You're welcome."

L. Facilitate rest period for SN child. Deliberately sit down to be with typical child. To keep butt glued to chair, stay busy by cutting out a lot of paper hearts in the spirit of helping.

M. Moderate fighting, playing, feeding and bathing.

N. Wash dinner dishes.

O. Experience shock when SN child, upon being picked up to be carried to bed, gives you a huge hug, the first conventional one in memory, and says "Mommy Mommy!" with glee.

P. Watch more rain fall, third time in two days, during conditions of exceptional drought (D4).

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Answer: Only two choices did not happen. They are letters in the name of a large cable news channel. (But I did all the dishes, yesterday.)
I still don't believe some of the others. What is going on around here?

writing

It's been a week since I posted, a week filled with managing things related to my first ever trip to the ER (unless you count the time when I was seven and didn't know this: if you are on a sled, and about to hit a tree, you can jump off the sled before you hit the tree). It's a little like being with John because it is a mix of bureaucracy, surprisingly inconclusive Western medical treatment, and surprisingly effective alternative/complementary medicine. Even though I have (usually) enjoyed using alternative medicine for 15 years, sometimes I am still taken by surprise when it works, and yes, it probably has something to do with hitting the tree.

Thankfully, John did fine with being out of the spotlight for a week. He is busy copying words he hears us say and using material that must have been held in storage in him, like "Doe do dat!" and "Wha a big biw-di!" One of my favorites is what he says in anticipation when he is about to receive some dry Cheerios to eat: "I may a big meff!"*

During this time I've been stuck as this writing is at a small crossroads. I've set the scene now, and there are any number of directions to go next. It would seem obvious to go forward, but that's not actually why I started writing. I need to describe the gifts that came in the past 4 years, not just a varied line of future. I honestly don't know how, or where, to do that. And there's more - all the other questions that initially stopped me from writing, made me attempt to think, and finally seemed to disappear? They didn't disappear. To whom am I speaking? Knowing that I will always be presenting an angle, what will it be? How can I say a single thing that I really want to say, without offending someone or inciting argument and criticism? What if my family reads all this stuff? All the professionals who I will no doubt appear to myself criticize at some point, and the bureaucracies? How can this come out to more good than bad?

I remember two things from long ago, scenes that, fortunately, I didn't fully digest at the time, because I will need bits of them for a long time to come.

The first: I was in a meditation group many years ago. We sat, and then there was a time for questions. Someone had been at a retreat with Zen Master Seung Sahn and they were unsure about what he had advised them. After recounting the original story requiring the advice, they said, "Zen Master Seung Sahn said, 'kill your parents.' What does that mean?" The answer and discussion filled the question period.

The other: I was at a meditation retreat. It was a silent retreat, but every few days we would have a short interview with one of the teachers. Without telling the whole story, I found the assigned meditation nearly impossible, and the teacher was most calm and gracious with my questions. One of the last things she said was to tell me the completely new-to-me story of Buddha meeting all of the temptations of Mara, ending with (as she presented it) doubt, and the Buddha's final statement, "The earth is my witness." I didn't understand it, I didn't understand it one bit, but I was blown away, and it somehow made it possible for me to settle into the retreat.

Practical questions are good, but doubt is doubt. Not being at the end of lots of maidens and waves of fire being thrown at me, I'm going to assume that the doubt and the accompanying questions are going to continue for a long time, and I'm going to have to find a way to sit there while they go on.

My favorite blogger is my favorite because they are so completely unapologetic.

I'm not sure why all these people are out there blogging as parents of children with special needs. I mean, don't answer that. It is a category, but within that, I'm just starting to learn what's out there and seeing what there is that I can feel between two fingers. We are trying to meet it, and there seem to be many whys for the different people who are meeting each different "it" of each child in what seems to be an epidemic of kids who didn't come out as one would expect. If the blogging is only a social thing, then I don't understand, and probably have a corresponding diagnosis pending, not caused by the tree.

When I was in graduate school (only briefly, but it was prestigious while it lasted), we reviewed the practice of ethnography, and in one book there was a mildly disparaging reference to something called "confessional ethnography," which as described, sure sounded better than some of the alternatives. As I recalled this in the context of thinking of special needs blogging, I went and read the ethnography entry in Wikipedia. I'm probably wrong, and I'm not going to go and take three classes to find out, but it seems first that ethnography is not as special as it thinks it is, because it sounds a lot like other things I've heard of, "writing" being one; and second that we are many just confessional-self-ethnographers out here who were thrown into an unknown situation and are writing about it. Maybe it's ethnography when we talk about new worlds in medical care practices or insurance/doctor/etc outrages, and just plain writing many other times.

We are writing about it and not just living it. In many, in most places there is no or was no writing about it. Writing is a luxury. We would find other ways without it. You know the bumper sticker with the Audre Lorde quote: "Your silence will not protect you."? We can be out of silence without writing, and we can stay in silence while writing. The fact that I am writing about the writing questions swimming around me doesn't mean I am facing them. That is a moment to moment thing.

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*Don't do that, What a big building, and I made a big mess.