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Month: December 2015
Winter Camp
It’s December 30th and Maddie is at winter camp. She loves this camp so much that as soon as she gets home she starts the countdown until next time. Last year was her first time doing the winter session, and after two years of balmy weather, a cold snap that particular week took us both by surprise a little bit. The whole time she was gone I worried that she would be warm enough. She managed, apparently, by wearing everything she could pile on. But she was cold.
It’s cold again this year, and although that didn’t come as a surprise, I didn’t help her pack that much because I wasn’t feeling well that day, so I have no idea if she packed gloves or a scarf. I know she has a down jacket, hats, and Uggs, though, so I think she’ll be OK. Still, I couldn’t help hunting down a pair of gloves and enclosing them in a box with some Cheetos, M&Ms, and glow sticks for New Year’s Eve. I hope she’s happy! Last year’s care package was a big pile of new wool socks. Not very exciting apparently, but I was in a panic about her survival, I guess, so I overnighted some directly from Amazon. I now imagine her delight at receiving a package followed by bewilderment upon seeing what was inside. Apparently the other kids got cookies and stuff. Oh, well. I try.
So today I’m thinking a lot about Maddie in her absence. I know she’s having fun. I hope she’s staying warm and dry. I hope she got her care package today and was delighted instead of deflated by the contents. I hug her in my mind. I tuck her in and kiss her at night. She’s not here, but I feel her anyway.
It’s pretty quiet around here. Mellow. Easy. Frankly either kid without the other is easier than both together, so I try to enjoy the quiet. I asked my son if he missed Maddie. I was joking. He just laughed. Fair enough.
But when Maddie is away, I really do miss her. I miss her in the sense that it’s weird for her not to be here, but I also miss her liveliness, her spirit, and her sense of humor. I imagine she’s yelling “CAMPFIRE! I LOVE CAMPFIRE!” as loudly as she yelled, “I GOT A CAT BAG!” when she opened the cat-tapestry duffel bag my mom made for her Christmas gift. Oprah-style yelling. Or “HOLY bleep!” when she opened the box of maybe 60 rolls of duct tape I gave her, which, incidentally, she packed in her CAT BAG! to take to camp. It was so heavy that I sneaked a few rolls out before she left. She had to carry that thing quite a distance to her cabin. She didn’t care when she packed the bag, but she might have cared halfway to her destination when a heavy bag, a rolling suitcase, a sleeping bag, and her backpack might have suddenly become too much. Hopefully, though, she didn’t look in the bag and think, “Hey! Who took out that fourth roll of blue I packed?” I wouldn’t put it past her.
Last summer on the last day of camp, I showed up for the usual end-of-week celebration. In the first 30 minutes, at least two people asked Maddie for duct tape. She had come prepared, and she had now become The Girl with the Duct Tape. It’s nice to have a recognized role in society, isn’t it? Especially when it’s a helpful or meaningful one. I’m so glad she discovered the importance of duct tape! I imagine her at camp now, rolls of duct tape around her arms as far up as she can comfortably wear them, always at the ready for a repair or prop construction, feeling like a queen because she really matters. I love that thought.
As this cold and wintry week continues, and the year 2015 is wrapping up, I anticipate Maddie’s return with somewhat mixed feelings. It feels right to have her home. The dogs will attest to that: when the pack is together, all is right in the world.
But two days after she gets back, school starts again and so does the stress that comes with it. I know it’s coming. I’m thinking about that knowing now. Knowing. Maybe I can find an ironic sense of comfort in the knowing, even though I’d prefer the truth to be otherwise. I know what’s coming, though. I do. Perhaps I can relax into the knowing, the predictability, and just let it go. At least for a day. And let 2016 start off in the best way possible, with a lot of love and appreciation for my kids, and a mixture of optimism and acceptance for whatever is to come.
And a lifetime supply of duct tape.
Star Wars Part 2
Friday was for me one of the biggest movie-going events of my lifetime, second only to seeing Star Wars in 1977 for my tenth birthday. Skipping school to see a movie was special enough (I NEVER missed school), and seeing any movie at a theater was a pretty big deal for a family who typically ran out of money at the end of the month. But this movie was special. I remember sitting in the domed theater watching those opening words move over our heads, my breath surely taken away for the first few moments.
Star Wars: The Force Awakens held a similar excitement for me. It was the first time my family would see a Star Wars movie together in the theater, since Episode 3 came out when my kids were too small. We’re all huge fans. Maddie even has a pink and black Mandalorian costume created for her Comicon visit last year, which of course she planned to wear for the big event. She also planned to wear it to school.
A problem arose the night before, however. In anticipation of the big event, Maddie stayed up late (the night before her last finals) repairing one of her lightsabers (hello again, duct tape!). I didn’t realize what she was doing until she had finished, and at that point I had just been reminded of the new rules of cinema-going: No masks, no face paint, and certainly nothing weapon-like, no matter how cartoonish or unreal. So, her cool helmut was out, as were her lightsabers and blasters. She was so sad–depressed really. I managed to snuggle the sadness away enough for her to get to sleep, though, and the next morning she was up and ready to go in record time. A big day such as Star Wars day gets her blood pumping, thankfully!
As I had promised earlier in the week, we had cancelled the cab in favor of a mom-drive to school. It’s a bit of a hike to go roundtrip during rush hour, but I enjoy the time with Maddie and getting even a glimpse of her school life makes me happy. Just seeing the other kids arriving at school gives me a small sense of what her days might be like. I’m not saying I want to drive her every day, but I make the most of the times when I do.
As we were getting into the car, in a mad rush as always, I noticed her blasters (i.e., storm trooper guns) nestled into her belt. “Maddie,” I said, “you won’t be able to take those to school. Schools have rules prohibiting anything looking like a weapon, even if it looks totally fake,” I explained. I even went into why that rule is now in effect.
“How do you KNOW?” she countered.
“Well, I just know that generally speaking schools no longer allow anything like that. You could get in REALLY BIG TROUBLE. Like you could get expelled.”
“Everybody knows me and knows I wouldn’t shoot anybody,” Maddie insisted.
“Unfortunately they can’t apply rules like that. The same rules apply to everybody.” I even told her about a couple of cases in which kids with toy guns were shot by police. I was really going for it.
“What if I just try?” She was not giving up. She had a whole costume to wear, and dammit, she was going to wear it at SOME point.
“The trying is what can get you into trouble. ‘Trying’ is showing up with the toy guns, and that’s what you can’t do. Plus,” I continued, “if you go to school with those and get into trouble, you will also get in trouble at home.”
“What exactly would happen?” She always likes to weigh her options.
“No computer time (i.e., Minecraft) for a month.”
She continued to ponder the consequences, questioning exactly how I know all this. She still wasn’t convinced anything would happen should she keep those blasters in her belt. Finally I suggested she look on the school’s website for a student handbook that might spell out the rules. She grabbed my phone and perused the website. Nothing jumped out. And then I had the best idea of the day: “Just call the office and ask. Say ‘I’m dressed up in a pink and black Star Wars costume that has pink and black blasters. Is it OK if I wear them?'”
So she dialed the number and explained her predicament to whomever answered the phone. She was transferred to somebody else, and she repeated her problem. “Okay,” she said right away. “Okay.” And then she hung up. Oh, thank goodness. She got the answer, and I could let it go. The blasters and her helmut stayed in the car when she hopped out to go to her last two finals. She was still happy and in the Star Wars spirit. In the end, she didn’t let the lightsaber/blaster/helmut exclusions get her down.
Crisis averted. Well, one crisis averted. When I asked her about the science and history finals she was about to take, she remarked, “There’s one problem. There is a study guide for history I was supposed to finish before Mr. L. will give me the test. I remembered last night, but it was too late.” Oh no. I hadn’t bugged her about studying because (1) that’s up to her teachers, (2) she won’t do it anyway, and (3) she does well without ever studying, so what’s the point? But I hadn’t anticipated this.
My heart sank. What in the world was going to happen now? What if she didn’t even get to take the final? I was trying to breathe deeply. It would all be okay, I tried to convince myself.
“You have to figure out a way to remember this stuff.”
“I know.”
“If you can’t remember things, you have to write them down. That’s the case for everybody!”
“But I never remember to write it down.” That’s definitely a problem. We talked about strategies for stirring her memory.
“Well,” I finally decided, “this is your first experience with finals. So this will be a learning experience, and you’ll know what to do next time.” Maddie nodded in agreement. She didn’t seem particularly stressed out. “I guess you’ll see what happens in a minute!” I said.
“Yup.”
When I picked her up a few hours later, just after she finished her science final, she was in great spirits. She thought her finals had gone well. Apparently had completed enough of the study guide that Mr. L. had mercy on her and let her take the final. Oh, phew! Thank goodness for compassionate, understanding teachers!
She was happy for vacation to start, and more immediately, to head off to the theater.
“Did anybody else dress up for Star Wars?” I asked.
“Nope!” She could not have cared less. She was rocking her own style and loving every minute of it.
I was talking to a friend the other day about Maddie and how I recognize the ironic gift of having her for a daughter. There are struggles, and they are daily, but there are some things I will never have to worry about. She will not have drug problems, she is unlikely every to drink or be promiscuous because she doesn’t care enough about what other people think to alter her behavior. And she is happy with herself. While other families are dealing with teens so overwhelmed by stress that even attempts at suicide have crept into their lives, I know I don’t have to consider that. I have one of the most easy-going, good-natured 15-year-olds you could ever meet.
Whatever happens with Maddie, she will be okay. She will be content. She will love and accept herself. And she has the confidence to fully express who she is.
We all loved the movie. I might even see it again. I never do that. But the feelings of joy and gratitude I had yesterday were just too good pass up if there’s another chance.
Friday, Star Wars opening day, the last day of Maddie’s first finals, was good day all around. A very good day.
Stars Wars Part 1
Sunday night I had a great idea. Or so I thought.
We had decided to see Star Wars as a family, along with my niece and her boyfriend, Friday afternoon. Opening day. That means picking Maddie up from school after her last final and grabbing her brother a couple hours early. And here was my brilliant idea: I told the kids they had to go to school every day this week in order for this to happen.
Maddie’s surprising response: “I have to go to school. I have finals.” She has to do something? Well, that’s new.
This baby’s in the bag, I thought. I bought tickets for us all. Everyone is going to school, and everyone is going to the movie. This is going to be a good week, I thought.
Right now, Maddie’s still in bed. The cab has come and gone. I will drive her to school now, if she’ll just get up.
My son keeps trying to convince her to go. “Just go for a little while,” he said. “Wouldn’t you rather go see Star Wars than stay home from school for one day?” “Oh, are you nervous about finals?” he is asking right now. “No? Just an old-fashioned stomachache, I guess,” he says. He’s really giving it his all. Despite years of what I would categorize as resentment towards her, he loves her. She is the biggest Star Wars fan in our family and now she might miss out. This could be tragic.
Last week I had a meeting with Maddie’s special ed teacher and the assistant principal. I had been trying to make things happen strictly via email with the teacher, Mr. L., but I haven’t been satisfied. Nothing beats face-to-face, so I called this meeting. I left there feeling very optimistic. Not necessarily optimistic about Maddie’s behavior changing, but optimistic about the school’s approach to handling her. Mr. S., the assistant principal, clearly understood the problem. He is going to be firm with her, but he also understands that many of the protocols applicable to truant kids aren’t appropriate for Maddie. This is part of her disability, and everybody at the table understood that.
Pause for a pointless drive to school
My son’s attempts to convince Maddie to go to school were effective. Sort of. Maddie had been crying at one point, a rare occurrence. When she cries, it means something. But somehow all of my son’s efforts had the desired effect.
“She’s up and even has her shoes on!” he announced proudly. There have been times in his thirteen years of life that he has driven me absolutely crazy, but there are times when he blows my mind with his insight, his thoughtfulness, his initiative, his kindness. This is one of those times. He really wants things to work out for everyone.
“Maybe you should bring Otter,” he suggested to Maddie once she had gotten up and dressed. Otter is a Beanie Baby who has been with us for the last 13 1/2 years. It has been a source of comfort since Maddie fell in love with it so many years ago on a trip to Carmel. I can’t believe we still have that thing. Maddie grabbed Otter, held it close, and walked upstairs. She was reluctant still, but she was moving in the right direction.
So I said goodbye to everyone, and Maddie and I set off for the 25-minute drive to school. We brought our puppy Banjo along for good measure. Puppy snuggles are always better than no puppy snuggles!
As we pulled into the drop-off zone, Maddie just sat there in her seat. Banjo was on her lap, and nobody was making a move. “I can’t do it,” she said sadly. Her stomach hurts too much, she had said. She did the best she could, she said. She had really tried. The tears welled up in her eyes again.
Well, now what do I do? I thought. I had tried to convince her to go to school for even a just part of the day. I would pick her up if she couldn’t do it. “Just go say hi to Mr. L.,” I had suggested. Her classroom was so close, but that didn’t matter. The distance from the car to the classroom was still too great for Maddie. This wasn’t happening.
And here I was again, having given a very clear reward offer for a very clear set of expectations, but still finding myself in the middle of a rather murky moment. Did this count as “going to school”? Have we already arrived at the no-Star Wars moment? That just didn’t feel right. She clearly wasn’t feeling well. She had done the best she could. But I didn’t know what to say, so I called my husband and explained the situation. I guess what I wanted was permission to give Maddie permission to go home. That was my inclination, but I am in a constant internal fight with myself about things like this. Another rational person sharing in decision was important. And my husband came through. “She did her best,” he said. Oh, thank goodness.
Thank goodness for two reasons: First, I really didn’t want to leave her out of the Star Wars viewing. When the first one came out in 1977, it was near my tenth birthday, and our parents took my sister and me out of school to go see it. I will never ever forget that day because of the movie itself and how special I felt getting to miss a little school to go see it. I had planned to take Maddie out early, too, but it turned out she was getting out early anyway. My son does get the special early pickup for the occasion–on pajama day, no less.
Secondly, it seems to me that when the carrot is no longer available so early in the game, there’s no point. If I say “you have to do this thing all week to get a reward,” and Maddie blows it on the first day, what in the world is going to motivate her the rest of the week? That’s a huge problem.
So my husband and I agreed to let her go home and still have a chance to see Star Wars Friday after school, and we turned around and came home. Nearly an hour trip for nothing. Well, I guess it was for something because Maddie got credit for going to school in a way.
Soon after I got home, I got an email from Mr. L., who wanted to know if Maddie was going to be at school. It turns out that the extra time she is allotted for test taking was front-loaded: she could start early in the week (i.e., today) and finish with the rest of the class. Well, now that’s out the window. He thought perhaps she had anxiety. My son had asked her about that as well, and she had denied any such thing, but I had to wonder. One of the defining aspects of autism is an inability–or diminished ability–to identify emotions. Maddie has always had difficulty with that although she’s made significant progress over the years. Still, it’s not uncommon for stress to result in stomach issues. And even I sometimes experience physical manifestations of stress before I can identify what’s going on in my mind. So the likelihood of that being the case with Maddie seemed high. After all, this is the first time she’s really had final exams. She’s most certainly feeling some pressure.
In fact yesterday she was given her history exam, and instead of making progress, she made a paper airplane. Yes, this is my child. I have the child who makes paper airplanes instead of taking a test. When I asked her about it, she said he had been bored. Bored. Hmm. I wonder if bored was really stressed.
So I asked her again this afternoon if she was nervous. “Maybe,” she admitted, probably just accepting the idea herself. I assured her that all she had to do was give it a good try, to do whatever her best work is, and that just doing it was more important than her grades. I also explained that she couldn’t make airplanes instead of doing her work. Even if she got an F on a final exam, I explained, maybe she’d get 50 points out of 100, which is so much better than a big fat zero. I think that made sense to her.
Maddie spent the day wearing her parka and hanging out in bed watching TV. Mostly she looked sad and pitiful when I checked on her or brought her food. The only thing I required of her was a shower. She didn’t argue, fortunately, although there was bargaining, as usual. I shampooed her hair, the promise of which seems to be a big relief to her . We blasted music (“Fergilicious,” “Another One Bites the Dust,” etc.) and danced, she in the shower, I on the other side of the shower door. We danced and laughed and made funny faces. That put us both in a good mood, after a stressful day for, apparently, both of us.
“I have to go to school tomorrow,” she says now. I nod in agreement. Today I think she had talked herself out of that idea. Today wasn’t an official final exam day. But tomorrow is. I am optimistic at the moment. We shall see. We shall see.
The Problem with Geometry
When I had geometry in high school, I loved it. Math came easily to me. Geometry was intuitive and satisfying, especially proofs. If this, then that, and then this, and then finally that. I think what I enjoyed about math was coming up with a solution that is objectively right. You know when you are done, too. It’s probably the only field of study that is so concrete. Science is as well, but even as we answer questions using science, there is always the possibility that those answers are wrong or just incomplete. Math is so much better in that way.
Unfortunately, I am finding my battle with geometry a bit less satisfying this time around. As I like to say, “School was so much easier the first time I did it!” I was in charge of myself, for one thing, and nobody else. I did my work and that was that. Now I’m coaxing and helping and struggling and sucking at it.
My husband and I were both excited for Maddie to have geometry this year. She’s very visual and spacial, so we thought it would be a good fit. Also proofs were alway satisfying to both of us, so we anticipated Maddie would find the same interest we had. Uh, nope.
What I hadn’t thought through was her difficultly anticipating the future and how it might affect her ability to do a proof. You have to have a vision of how to get from the beginning to the end, and all the steps in between. She is having trouble. They’ve just started on this particular section, so I’m certainly not throwing in the towel, but I can see already that proofs aren’t coming as easily to Maddie as the rest of geometry has. That mental follow-through just isn’t happening.
Furthermore, as you probably know, math has changed so much over the years. While premises and conclusions might be the same as they once were, the methods for getting to the end have changed dramatically. This has been a problem in our house for years. Do I remember algebra? Sure, but I’ve never seen it done that way. Proofs, it turns out, look different too. I could learn the new method–once I seriously reviewed the theorems involved–and then I could help Maddie. But for now I’m stuck.
Because math has historically come easily to Maddie, having trouble with a concept doesn’t sit well with her. She has little patience for going to battle with her homework. If she can’t do something right away, and do it easily, she gives up. She gets discouraged. She certainly has grit in other facets of her life (she has had to develop that), but homework isn’t one of them.
So over the weekend, when she had numerous missed days to make up for, geometry just didn’t go too well. We looked up a tutorial on the internet. That was potentially very helpful, but without the theorem knowledge in my head already, and without Maddie’s commitment to really trying, watching the video was pointless. I gave up. I got her through the homework she could do without much trouble, and hopefully she’ll seek out the help she needs at school.
The problem is, once again, she is not at school. She wanted more sleep, she said. She’d go later, she said. I knew she was tired. I also knew she wouldn’t go at all today. She has never once done that.
And so I accepted it. I knew she would never wake up, stretch and look outside, and think, “All right! I’m going to school! I’m ready for action!” She promises she will go the rest of the week. And for now, she means it. But she can’t really anticipate tomorrow, or what will happen if she doesn’t go yet another day. Just like the proofs, she can’t get from point A to point B to point C in her head. She’s living in point A. Always.
And unlike geometry, there is never a right answer with raising Maddie, or really any kid. You never know if you’re right or when you’re done. You can never write down that number and drop your pencil in a dramatic fashion as if announcing victory over your homework or your test. Problems aren’t solved. They morph into new ones. Or the answer you thought was right appears to be wrong now. This stuff is hard.
So we begin the week with Maddie behind severals days in her school work, and getting behind yet another day. Apparently the school’s current solution is to continue lunch detentions (Who cares? she says), and then bring in a truant officer. When? I want to know. And to do what exactly?
I don’t know what the solution to Maddie’s attendance issue is, but I’m pretty sure we are miles away. I guess the key is accepting that. Maybe even accepting the a solution or answer isn’t possible at all.
I have a friend on Facebook whom I knew in high school. He is a kindhearted, lovable and well-loved man who was in the special education class. He’s in his early 50s and still lives at home with his parents, who obviously adore him and fully participate in his life. His posts are typically upbeat and fun as he gets to do so many fun things with all of the people who love him. I don’t think he works. He’s very much like a kid in an adult body, and he gets to live out his childlike existence in such a lovely way. Nobody is forcing him to grow up, and nobody is pressuring him to be any different.
I was suddenly very struck by that yesterday. What if I discarded the idea of finding a solution? What if I went all the way, one hundred percent, to acceptance? What if I just focused solely on Maddie’s happiness and let her be the kid she seems to want to be?
The problem (if you want to call it that) is I know Maddie’s intellectual development is not an issue here, and she is quite capable in many ways, so I’m not sure at all when to give up the idea of her moving forward in life, living on her own, maybe going to college, maybe having some kind of job, maybe even having a family.
I think for now I’ll keep pushing forward, with the knowledge that at some point I’ll have to shift my expectations. And accepting that possibility.
For now I just have to get us through this day, and this week, and the next. At least at that point she’ll be on winter break, so I can relax a little. And maybe re-learn some geometry.
The Days are Long…and the Weeks Are Longer
Happy Friday, everyone! Especially Happy Friday to me. This has been an extra challenging week, and it’s finally over. A much needed break is upon me. I am so thankful.
As you know, Monday and Tuesday Maddie refused to get up and go to school. Without access to screens, she still managed to relax the days away while I fretted about her attendance problems. Last time I wrote it was Tuesday, the day of the play.
Mid-morning on Tuesday I managed to contact Maddie’s drama teacher about the attendance requirement for participating in after-school activities. He confirmed there is such a policy but that (1) the attendance officer would never know and (2) he really needed her at the play. Such good news!
With most kids, parents would probably want the opposite news. If you don’t do what’s required of you, we would want them to understand, then you can’t do the fun stuff. There are consequences. Truant students don’t get to be in a play after school, Maddie. I admit I was ambivalent about this at first. I do like the idea of attempting, at least, to reinforce this idea with her. But I also wanted her to have the experience of the play, to reinforce the positive experiences associated with school, and to help her feel more connected to it.
Miraculously I managed to get her to shower in the afternoon. I’m not sure how that occurred to be honest. She seemed resigned to it, which is unusual.
And then, as departure time became imminent, she said the most surprising thing: “I’m tired, but I must go.” I don’t know if she’d ever strung the words “I” and “must” together un-ironically in her entire life. I was full of hope and gratitude in that moment, but those feelings were tinged with a healthy dose of realism. Oh, sure, she says that now. That doesn’t mean she will ever say that again.
We were just ready to leave when I asked, “Do you need to bring anything?” I had a feeling she did.
“Yes, a sword,” she replied. Of course.
She headed downstairs to retrieve the desired duct-tape masterpiece and returned upstairs. Then she had another thought. So she exchanged her sword for sword-making supplies: two long sticks of bamboo and two rolls of duct tape.
“What’s up with that?” I inquired.
“Well, in the play I’m supposed to be making a sword,” she said. “Plus I have to make one for Nick anyway. I can just work on it during the play.”
“How long does that scene last?” I asked.
“Just a couple of minutes.”
“I think it would better to just bring a completed sword and some matching duct tape and you just add a couple of pieces. You need to focus on performing, not making a sword.” I imagined in her on stage, fumbling with her props, making all kinds of noise with the tape.
“But I need to make one anyway,” she insisted. She has a way of doing that: insisting.
I soon accepted that this line of reasoning wasn’t going to get us anywhere, so I ran to her room and grabbed the sword she’d chosen originally. “Just bring both, and then you can ask your teacher what he wants you to do.” There! No longer my problem. Man, that felt good.
One thing at a time, I thought to myself. Little hurdles all day long. Some big ones, too, but it seems like everything with Maddie is a hurdle. And unfortunately I’m not very tall nor athletic, plus the hurdles keep moving, so the race is particularly challenging, even if I’m not trying to win. I’m just trying to finish. With minimal injury to us both.
The play was great. Her teacher had written it especially for this class, which consists of five special ed students and seven kids from the general population. It began with a boy named Nathan, whom I hadn’t met before. Such an adorable boy, most certainly a freshman, but he looked about ten due to Downs Syndrome. His primary role was to start the show with a solo dance to “Thriller.” My heart was suddenly full. Full of adoration for this kid and for the teacher who so lovingly allowed him to shine doing what was very likely Nathan’s idea.
The teacher had decided some years ago that he wanted his classes not to only act, but also to learn something else in the process. He wanted his plays to have meaning. The play was about kindness and inclusion, an especially appropriate theme for this bunch of kids.
Maddie had the largest role of the special ed students, by far, mostly because she can remember all her dialogue. It was so interesting to see her up there, not only acting without fear (as usual) but also really as a leader of her peers. Towards the end of the play, Maddie showed up on stage with her completed sword and a roll of duct tape, as I had suggested. When she was getting out of the car, I said to her, “Let your director decide, and don’t argue.” She agreed and apparently stuck to her commitment. Apparently teachers have more influence. Thank goodness for that!
It’s a small theater, and it was mostly full. Of course everybody’s parents were there, but also a number of students there to support their friends. All the actors were kind and generous with each other, too. What a good night!
There was another play immediately following, but Maddie chose to skip it and go home and to bed. A wise choice, I thought.
The dreaded Tuesday was not only behind us now, but it ended on a high note, and the next day was Fun Wednesday (every Wednesday is fun), so I knew she would get up the next day and the rest of the week would be a success.
Wednesday came and I wasn’t particularly anxious when I got up. My husband has been suffering from insomnia the last few days so I’ve taken over wake-up duty again, and I dragged myself out of bed (also sleep-deprived) and woke Maddie up cheerfully.
You’d think after all these years I would know better than to count on Maddie doing anything in particular. But I was still surprised Wednesday when she did not get up. She did not go to school. I was infuriated. I got my husband up to help. He too was infuriated.
But I can see in times like this that such a response not only doesn’t work, it often backfires. I don’t think there was anything we could have done to change the outcome of that morning, and our boiling blood only makes her dig in deeper. Not wanting to go to school becomes Oh, yeah? You think that’s going to do anything? Watch me as I sit here forever.
And so it went. Another day of truancy. After all that.
That day, however, I had decided that no matter what Maddie did, I was going to go about my business. I could not put one more ounce of energy into that particular problem. And so I didn’t.
First I had to take my son to an early-morning dentist appointment, which dragged on and on. He was too loopy on laughing gas to return to school, so I brought him home.
And then, it was time for me. I met a friend for a pedicure and lunch, a much needed mini-vacation from my frustrating home life.
When I got home, Maddie wanted to glue herself to me. But I wasn’t interested. I needed distance. She wanted solace and I didn’t have any to give. I was still angry.
My son, however, had something to say to Maddie, apparently. I learned later that he had given her a bit of a pep talk. Maddie’s little brother told her how important it was that she go to school, and asked her to do her best to at least go the rest of the week. Two days, he suggested. Just start small.
And so she did. It’s Friday morning and the second day in a row that Maddie is where she is supposed to be. Last night I reminded her that she absolutely had to go to school today. “Oh, I will!” she promised. “I need to give Nick his sword.” I know a sword delivery isn’t going to be a motivator every single day, but I’ll take what I can get.
This morning was a mad rush with lots of frustration, a cab driver who knocked at the door and sent the dogs into a barking frenzy, and surely some heart palpitations on my part.
“Maddie, you have to get up and eat some breakfast!” I had finally spit about seven minutes before the cab was to arrive.
“Aren’t you happy that I at least got up?!” Maddie scolded. I shouldn’t get mad at her if she’s up, she thought, even if she’s just sitting there in her underwear staring at the wall or petting the dog instead of eating.
I guess she has a point, but getting up is only part of the equation. Pants are required, for example. As are shoes. As is walking upstairs to the cab. You can’t just sit up in bed and call it good.
When I started this entry I was going to savor the quietude of the upcoming weekend. I was looking forward to sleeping and relaxing and not having to push Maddie for a couple of days. And then I remembered she has three days of schoolwork and homework (well, four really) to get done. It’s all on me, as usual. There is much to do.
The long, agonizing week is over, but the struggle continues. At least we can all get some sleep. I hope.
How to Move the Unmovable
How do you move a concrete wall?
If only this were a riddle or there was some trick to it. The answer, I’m afraid, is you don’t. You can push and coax and cry and kick and scream, but the wall doesn’t care. The wall is stuck. The wall’s purpose is to be there, to stay there, to be firm and strong, no matter what forces oppose it.
And so it is with my child with autism.
The difference is with a wall, you would think, “Oh, well. It’s a wall, for Pete’s sake! Of course I can’t move it! What a good wall!”
With a kid, you think, “There has got to be a way.” There has got to be a way, even though there has never been a way. There has go to be a way because it’s not acceptable for there not to be a way. There has got to be a way because she’s a person, not a wall.
Unfortunately, when this particular person is short on sleep, the foundation digs even deeper into the soil. She is prepared for an earthquake after all, and no amount of earthshaking is going to rattle her even a little bit. She is bulletproof, earthquake proof, everything-proof. She is reward-proof, punishment-proof, logic-proof, emotion-proof.
That is how determined she is. I guess you have to admire her a little bit.
Unfortunately, Maddie stayed home all day yesterday and slept or just hung out in bed. I was kind of expecting it because she had been out of school for five whole days, and even a three-day weekend can make for a rough first morning back. So she was tired yesterday and behaved accordingly, which has a spiraling effect: If you lie around and sleep all day, you probably won’t sleep at night, which makes you sleepy the next day. And here we are. She needs to get up and suffer a little bit, but she won’t.
Yesterday she said she needed to sleep and would go to school later. But of course “later” never came. I asked her repeatedly about going to school, and finally asked her for a definitive answer to save myself some trouble. Did she intend to go? No. Yeah, I thought so.
She is saying the same thing now. She wants to sleep a little more and then I can drive her to school. But I have plans today. As happens many days, those plans may have to wait. I have a kid to deal with. I might have to spend the morning coaxing her up and driving her to school at the exact moment I hoped to be walking in the woods with a friend. I could really use some fresh air, some friend time, some nature. How therapeutic that would be!
Instead my chest is tight. My head is pounding. (Thank goodness for the funny Donald Trump post on Facebook today. It’s helping a little.)
I’m especially stressed out because Maddie’s drama class has a performance tonight. If she misses school today, can she participate? I’m not sure. Maybe she’ll go to school. Maybe she won’t.
Last year she completely bailed out on her drama class performance because once she got home after school, she decided she was too tired. I tried everything. Even her teacher talked to her on the phone. No movement. People were pretty mad at her the next day, but eventually it blew over. Then her report card came. Mostly A’s and then a D in drama. We agreed she had it coming. It didn’t feel good, but even if I remind her about that today, we all know she won’t care enough to change her behavior. She’s just not built that way.
Yesterday the only thing I had required of her was a shower. She has that performance tonight and she should at least be clean.
Guess what? No shower. Her scheme instead: her last period today is called Advisory. It’s a 90-minute block where the whole school is sort of on pause. Students are able to visit whatever teacher they choose for help, or just do homework, or whatever. Today, though, she planned to go to the gym and take a shower. What kid would ever opt for a school gym shower instead of one at home? Maddie, that’s who. We discussed this idea for awhile last night. I told her I wasn’t confident about her follow-through.
“Well, how can you know if I can do this if you don’t give me a chance?” she argued. Oh, she’s good. And to some degree she’s right. This particular plan hasn’t come into play before, so I can’t know if she’ll actually do it. But what she doesn’t understand is that her failure to get up in the morning, or take a shower at night, or do all the other things she’s supposed to do, is directly related to my faith in her follow-through on the gym/shower plan. I could tell my arguments weren’t going to get her in the shower last night, so I reluctantly conceded. She had to pack her shower stuff last night in preparation, and she dutifully did as I asked.
Here’s the thing: I have no doubt that in moments like that, Maddie fully intends to do what she plans. She can’t imagine that she won’t. She can’t imagine why she wouldn’t. So in her mind, it’s absurd of me to doubt her. Unfortunately, past behavior is the best predictor of future behavior. I need to throw those words out at her. Pointless, I’m sure, but maybe I’ll feel better.
It’s 8:07 a.m. I’m already burnt out for the day but I have so much more parenting to do, including–I hope–getting her to her performance tonight and enjoying the fruits of all our labor. I love to watch her perform. She’s a committed actor, fearless and funny. I could use some of that tonight, some of the fun parts of parenting. But I have a long way to go. Almost eleven hours.
I’m hopeful. Maybe stupidly, but still I’m hopeful. I am hopeful the play will be enough motivation to get her up and going. Just for today. And, for better or worse, tomorrow will be another day. But at least it won’t be a Tuesday.
So how do you move the unmovable? Beats me.
The Year of Living Hopefully 