life

It’s All About the Pronoun

Chris Irvine, Parent CoachLeave a comment

You know when your spouse says, “We should call the plumber” or “We should clean up the dog poop in the backyard” and you know what he really means is “YOU should call the plumber” and “YOU should clean up the dog poop”? The “we” is really “you,” and you both know it. A little pronoun sleight-of-hand to somehow both obscure and effectively communicate a message.

Last week I was having heart palpitations about the end of the school year, or more precisely, the end of school. Writing that sentence, I realize that might be a first for me. It’s always been the beginning of a new school year that sent my blood pressure through the roof as panic and fear of the unknown swirled in my head. The end of the school year meant a huge sigh of relief, and giant exhale, because for the next ten weeks I didn’t have to try to make Maddie do anything (well, except take the occasional shower). And yes, I still have that respite to look forward to. In fact, it might be the biggest exhale of my life when Maddie clicks “submit” on that last final exam. She never has to do school ever again if she doesn’t want to, and if she does want to, it’s all on her.  It’s completely optional! But in order to get to this particular ending, there is some work to do.

As an independent study student in her online school, she has no real deadlines except at the end of the semester. There are suggested deadlines for quizzes and assignments and tests, but the true deadline comes once. Luckily, with the help of Maddie’s tutor, we are usually somewhat on schedule (she’s always a good 10 or 12 assignments behind, which sounds worse than it is), but last week I looked and she had 23 overdue items (meaning the suggested deadline had passed), not to mention whatever had been or would become assigned but hadn’t yet become due. And then final exams.

Oh my god. How will Maddie ever get all this done? How will I get her to do all that work? I felt the wave of panic I’ve experienced so many times over the years. The insurmountable pile of responsibilities loomed dark in my psyche, the weight of it all sitting squarely on my shoulders.

Later that week, thankfully, I had therapy. I have been seeing a therapist for the last nine years, ever since I had a nervous breakdown from the sheer weight of, well, a lot of things. I am long past the part where you talk about your childhood or your traumas or whatever and figure out how to fix yourself. For years my therapist has been my coach and adviser, my cheerleader and guru. She brings me back to earth when I’m freaking out about, well, anything.

So this time we talked about Maddie and my anxiety over the mountain of work on Maddie’s plate. As I talked, I realized something. There was no way on Earth I was going to allow any outcome other than Maddie finishing and graduating. “She just has to pass,” I reminded myself out loud. “She doesn’t need A’s. She just needs to pass.” I continue to say that out loud to convince myself of the truth of it.

With equal parts realization and conviction, I said, “Oh, we’re gonna get this done.”

“I think you got your pronoun wrong,” she said wryly.

I thought for a moment. “Okay, I’M gonna get this done.” Not we. I.  “I don’t care if I do it all myself,” I said. And I meant it. At this point I would do just about anything to get that diploma in Maddie’s hands, to complete this mission on which we’ve both worked so hard.

What kind of mom announces she will actually do her kid’s last two weeks of school work? Who decides the easy route is the right route?

You know who? The kind of mom who for a solid year taught her child to speak by sounding out words using foam letters in the tub, that’s who. The kind of mom who heard only screaming for the first 25 months of her child’s life before finally hearing the word “mama,” the first recognizable speech ever uttered by her oldest child. The kind of mom who fought back tears through countless SST meetings and  IEP meetings, and changed her kid’s school three times, desperately trying to make the right choice for this puzzle of a kid. The kind of mom who braced herself for a fight–really a frustrating, defeating exercise in futility–every single morning for three years trying to get her kid to go to school. The kind of mom who for the last year has read the world history book out loud to her kid just to engage her in school, doing silly dances or making jokes to make it as much fun as I could–for both of us.

There is no way I would let all of the emotional roller coaster rides, all of the anxiety and worry and tears and confusion and countless hours of just plain old work end in a big fat nothing. So if she can’t make herself do this last little tidbit of work for herself, I’ll do it for her. I’ll do it for ME.

So this time the pronoun is clear: I WILL MAKE THIS HAPPEN. I hope Maddie will cooperate and do the work, but if not, I hope she’s at least along for the ride. In two weeks we can sign off from school forever. And I can pat myself on the back for a job well done.

Playing the Lottery

Chris Irvine, Parent CoachLeave a comment

Five days ago my family went down like dominoes. Within two days we went from four healthy people to four sick people, but as usual, Maddie feels better than any of us. I thought maybe I had pneumonia. I’ve had pneumonia. It was a six weeks of utter and total misery. If I decided to take a shower one day, well then I was done. I coughed and coughed until I vomited, over and over and over. I couldn’t breathe very well and I shook and trembled my way through the day, all the while just lying in my own misery. I certainly don’t feel anywhere near that sick now, but just the fear of even a touch of that experience is enough to send me straight to bed.

Maddie, on the other hand, is keenly aware of her strong constitution. We talk about it often. She either manages to avoid viruses altogether or if she is stricken, her experience is often short and relatively manageable. Lucky kid. Even when she had pertussis at ten years old, she wasn’t really that sick. I happened to be aware whooping cough was making a bit of a comeback in our neighborhood, in particular, so I took her to the doctor and voila! She had whooping cough. Other people who contracted the virus were the sickest they’d ever been, but Maddie just had a cough. She did have to be quarantined for two weeks, though, just to keep everyone else safe. But really it was nothing.

She is also freakishly strong. She’s the person I get to help me move furniture or bring big bags of dog food from the car down the two flights of stairs into our house. She loves that about herself. This is a person who mostly sits at her desk on her computer, or in bed watching TV, so that strength isn’t a function of exercise or conditioning. It’s just how she was born. She most certainly didn’t get it from me. My brain wants me to be strong, but I’m the person everyone tells to sit down and “Don’t hurt your back!” I hate that about myself, but that’s just how it is.

Since Maddie has been less affected the last few days than the rest of us, I’ve been asking her to help out a little bit. She is happy to deliver water to whoever needs it and would even cook somebody something if she knew how. The kitchen was piling up with dirty dishes, and, although I’m far from a neat freak, it’s the kitchen mess that irritates me the most. So this morning I asked her to empty the dishwasher. I thought I could muster the energy to fill it.

She immediately got to work and I was so thankful. Thankful she was up to the task and thankful she so cheerfully went for it.

“Thank you SO much, Maddie,” I said. “This helps me so much.”

“Well, I just can’t explain my strong constitution,” she said proudly.

“You won the genetic lottery,” I answered matter-of-factly.

Silence.

“Well, not totally,” she said.

My heart stopped. Was she going to say she wished she didn’t have Asperger’s? Was this conversation about to happen? I mean, I’m fully prepared for it because deep in my heart I really don’t think of her autism as a disability or anything to change. I don’t think that way at all. And as we all do for our children, I just want her to be happy with herself.  We love her as she is and there’s simply no reason for her not to as well.

“Bad ankles,” she explained.

My body relaxed. The ankles! She does have shitty ankles, just like her parents (we’ve both had the very same ankle surgery). And she has horrible flat feet, to be honest. But I could never have imagined being so happy to hear somebody complain about their ankles.

“Well, that was kind of inevitable,” I shrugged.

Before she resumed her kitchen task, I hugged her. Extra tightly and extra long.

I’m pretty sure I’m the one who won the lottery.

When a Mole Hill Really Is a Mountain

Chris Irvine, Parent CoachLeave a comment

This week I think Maddie grew up a little. Or maybe she was just acting crazy. We shall see.

Sunday my wonderful teenage son was apparently doing tricks with knives when his finger and a sharp blade had an unfortunate and unexpected meeting. My first clue was his voice coming from his room: “MOM! BLAH BLAH BLAH BANDAGE!” I’m sure what he actually said was, “Mom, get me a bandage!” or some such thing, but at least I heard the key word. I rifled through our always (unfortunately) disorganized box of first aid supplies and found a nice thick gauze square and ran downstairs. Sure enough, there was a rather bloody finger and a pretty upset guy.

After a minute or two of trying to gauge the situation, we decided a trip to urgent care was the best coarse of action. I ran downstairs to tell Maddie, who was in the shower (woohoo!) and the two of us took off.

After lots of waiting around and a rather uncomfortable session with a needle full of lidocaine and then five stitches, we returned home. All was well with the exception of a pretty sore finger.

What I didn’t know at the time was that my son had, in a fit of panic, left the water running in the kids’ bathroom. And the only reason I found out was because of what Maddie told me later.

“When you guys were gone,” she said, “I noticed the faucet was still on and then I noticed water everywhere. So I turned it off and cleaned up all the water and left the towels in the tub.”

Oh. My. God. She cleaned it up and then, like the genius she is, put the soaking wet towels in the tub so they wouldn’t ruin the floor. I’m not sure who else in my family besides me would have done as well. (No offense, guys, if you’re reading this.)

I was floored. That sounds like such a trivial thing, really, but in my house it’s not. Maddie is so capable of so many things, but she’s not always great at cleaning up (hilarious understatement) or following through. I was both surprised and gratified.

When she was young, she once decided to make the whole bathroom into a pool. She put a towel up against the door and flooded the tub until she got her wish. Unfortunately, that water eventually had to go somewhere, and I don’t know about you, but we don’t have a drain in the middle of any of our bathrooms, so the “somewhere” was basically “everywhere.” All over the wood floors in the hall and into the next room. Ugh. Actually I think she did that twice. At the time, and for years afterwards, her plans tended to be rather short-sighted. If something sounded like fun, that was really as far as she needed to think before she proceeded to make it happen. She used to dump out entire Costco-size $50-bottles of my fancy shampoo while she took a bath too. Those times provided my earliest data that no, in fact, my head would probably never ACTUALLY explode, because I’m sure it would have then.

Of course all our kids have done head-scratching things, as evidenced by all the photos I see on Facebook of kids smeared in diaper rash cream, or art-wearing babies and their toddler sisters standing next to them holding Sharpies. The problem was Maddie was no longer a toddler—not even close—when she was purposely flooding the bathroom without a thought as to how to dispose of the water.

But now she is seventeen. Things are bound to change. And they have. I still find myself having to coerce her into taking showers or brushing her teeth. The upcoming school year remains an empty page, too. I’m not especially confident that removing the “going to” part of attending school will be the solution, but we have to try something. Having ADHD (which is part of an Asperger’s diagnosis) doesn’t mean a person can’t focus on anything. In fact, if she comes up with a duct-tape project, I dare you to try and stop her. But writing a paper on a subject she doesn’t find interesting, or doing multiple math problems that seem to repeat themselves, just aren’t particularly motivating for her. I can’t remember a time when she announced, “I have homework” and then got it out and did it. Most years I had to sit next to her just to keep her focused. I didn’t necessarily have to help her, but rather just keep her on track.

So, here we go again, I keep thinking to myself. It’s still school, after all.

Yesterday her tutor Kim came to pick her up for lunch. Kind of a “reacquaint and start preparing for the new school” kind of a thing but without any work or expectations. I had to leave about 90 minutes before Kim’s arrival. The night before that Maddie and I had been in the hot tub when I suggested she just get straight into the shower after that since she was already wet. “My body is too tired,” she said. I tried to convince her of my genius idea, but she was adamant. Instead, we hunkered down to watch The Incredibles for the gazillionth time (it’s been years, though, to be fair). But before I gave up on the shower thing, I talked to her about making the decision. So often she promises to do something in the morning that she doesn’t feel up to at night, and then bails out in the morning as well. That can go on for days, as her hair gets greasier and rattier and her teeth yellow and her BO hits Code Red levels. But I also have noticed that when she’s really committed to something, she’s quite reliable. The problem is in the committing, and only she can know if she has truly committed. So I thought I’d talk to her about that.

“I believe in you,” I said. “When you decide to do something, when you set your mind to something, you always get it done. The key is in the deciding. You have to decide right now that you’re going to do it, I mean REALLY decide. And then I know you’ll do it.”

She nodded in agreement. “Oh yeah,” she agreed. “When I set my mind to something, you couldn’t stop me.”

And then finally, “I’ve decided,” she announced. Of course you can never really know what’s going on in somebody else’s mind, so I just had to accept her commitment and move on.

“Well, then I know you’ll do it,” I said.

The next morning just before I left for my morning appointment, I woke her up. “You’re going to take a shower, right? Kim’s coming at 11:20.”

“Yup,” she said, still under her covers. Oh, I’ve seen this many times. The insincere affirmative answer and then the predictable outcome.

There wasn’t much else I could do at that point, but I knew my appointment would be over by 11:00, so I told her I’d call her later. Honestly I wasn’t expecting much. Historically meetings with Kim go like this: Maddie doesn’t get out of bed, so Kim has to somehow talk her into getting up and getting dressed and it’s a whole long scenario from which I typically remove myself (as in, leave the house) mainly to preserve my sanity.

As planned I called just after 11:00. “I’m just calling to remind you to get up,” I said, clearly thinking she’d still be in bed.

“I showered and I’m dressed,” she announced.

I probably said, “WHAT?!” but hopefully I was more composed. If life were a musical (which I always wish it were), I would have broken into a song and dance for sure. Something glorious and uplifting.

These are the moments I feel tears of joy pooling in my eyes. My heart is full and I feel hope. The hope I felt when I saw those soaking wet towels in the tub. She got herself up and she took a freaking shower! Who IS this kid?

And then, She can do it, I thought to myself. And by it, I meant life.

All the thinking and effort and talking and more thinking I put into this parenting thing is having an effect. She is growing and maturing, and although she’s younger in most ways than other kids her age, there is progress.

So many parents I know have just taken their kids to college for the first time or have that next chapter of parenting in their sights. They’re nervous about how their kids will fare. Will they be able to care for themselves, the parents wonder. Will they feed themselves OK? Do they know how to do laundry? What happens when they get sick?

“Don’t worry,” I tell him. “They’ll figure it out. They always do.”

Will Maddie “figure it out?” I go back and forth on that one. But right now I’m feeling a bit more optimistic. She is figuring some things out. She might be 30 when it all clicks. She might stay with us forever. We don’t know. But moving forward sure feels good.

Ninety Percent Happy – A Camp Debrief

Chris Irvine, Parent Coach1 Comment

Today was camp pick-up day. After 24 days without Maddie, it was time for the family to reunite. Or at least three of us. My teenage son thought those three and a half weeks went by a little too quickly. “Does she get back next weekend?” he had asked. “No, tomorrow,” I clarified, and disappointment washed over his face.

Part of me didn’t want to do the pick-up simply because of the drive. I had recruited my husband to make the trek because of my hate-affair with long car trips, but since we could at least share the driving, I decided I couldn’t miss out. An excellent choice on my behalf as it turned out.

Pick-up day at this particular camp is also performance day. After having lunch together with the campers, parents can see what their kids have been working on for the last ten days. I always go to performances or games or whatever my kids are up to (and sometimes just to see their friends). I LIVE for this stuff. But the last few times Maddie went to camp she participated in workshops that didn’t end in a performance, so I wasn’t expecting to see her do anything this time. Typically we would have lunch and then listen to a brief talk by the camp director, then grab her luggage and split. So really the only reason to go would be to to give her a giant hug and dip my toe in the camp experience before summer was over and see her happy face.

I knew for sure she’d be happy. For one thing, camp is the highlight of her year. ALWAYS. Second, I was actually able to speak to her half way through. Campers can’t have phones, but Maddie stayed for a four-day between-session mini-sorta-camp thing and during that time was able to use a counselor’s phone.

I received this text:

“Hey, it’s Maddie, your daughter. Could you call me on this phone? Anytime.”

And then, before I could respond:

“Can you send me some stuff? My Bose speaker and the power cord. And my SIM card. And can you go on Amazon and order some Liquid Ass and send it here?”

I called her shortly thereafter. She was in good spirits, partly because she was in a bowling alley at the Santa Cruz Boardwalk at the time. She sounded happy and relaxed.

“Can you also send me a banana suit?” she asked.

“Did you say ‘banana suit’?”

“Yup.”

“Sure.”

After a brief conversation about camp, I handed the phone to my husband so he could chat with her, and brought up Amazon.com on my computer to order Liquid Ass and a banana suit.

I wrote a note to my husband, who was still on the phone with Maddie: “Ask her if it’s the fart spray.” Eventually he nodded and gave me a thumbs up. I placed the order as if it were for toilet paper and toothpaste. It did occur to me that perhaps a “for what?” might have been in order, but it hadn’t crossed my mind to ask until it was too late. Maddie gets ideas and she makes plans and sometimes they involved fart spray and a banana suit. Business as usual at our house!

So two weeks later, there we were to retrieve our happy camper. We hugged a giant, long bear hug. I noticed her hair was clean and brushed and I was so happy about that. Even if that was the only shower she had taken (although I was sure it wasn’t), at least she had the foresight to be clean for the parents. We had some surprisingly delicious barbecued chicken and grilled vegetables for lunch. Maddie had already eaten a turkey sandwich. A TURKEY SANDWICH. Mind. Blown. She likes turkey and she likes cheese and she likes bread, but she has never ever eaten a sandwich. Whenever meals weren’t to her liking, she asked the kitchen staff for a sandwich. A SANDWICH.

After the campers and staff gave an enthusiastic performance of this year’s theme song,* it was time for performances.

“Are you in anything?” I asked, expecting the answer to be, “No. Let’s go home. I’m tired.” But instead the answer was, “Yes, rock band and film.”

Alrighty then, we would be staying longer. We converged in the dining hall/performance room and first watched dance and  musical theater. But the big star of the camp is rock band. Probably half the camp participated in that workshop. The first act got on stage and Maddie was nowhere to be seen. It was a full rock band (maybe five instruments) and two singers. Maybe she comes in during the middle, I thought, and shakes a tambourine or something. But nope, the song was over and another group took the stage. Different kids, different song, but pretty much the same setup. Still no Maddie. By the third song, I was starting to wonder, and then she stepped up with a microphone in hand. The band got set up and Maddie belted out “The Way You Make Me Feel” by Michael Jackson. All alone up there, with occasional backup from the rock band coach. She looked pretty natural on stage, moving her body and holding the mic with confidence. She sang from her belly and her heart. She wasn’t the best vocalist, but she was certainly among the most convicted. I was in awe. She just blows my mind sometimes. I was so proud of her and happy for her.

And then, unfortunately, I started to think. Maddie was the only solo act, and I knew it wasn’t because she was the best. I also noticed that half the band was camp staff, unlike the other groups. Ugh. The sadness started to mingle with the joy. Did nobody want to sing with her? Did the staff step in where campers wouldn’t? Is this the “special ed” performance?  Even at this magical camp, is she on the fringe (a word her kindergarten teacher once used to describe her)?

She sure looked happy up there, though. This is a kid who loves to belt it out, and she got it do it with a band. If any of my worries were rooted in truth, she didn’t seem to notice. I was mostly happy, and a little bit sad, and then a little more sad because I wasn’t 100% happy as I thought I should have been.

A couple more groups performed, and then the entire “mega band” took the stage for a rousing rendition of “Burning Down the House,” a suitable song for the band and for the moment. Each singer had a few solo lines, and Maddie pulled hers off as well as anybody. Or at least I thought so.

Finally, it was time for film. Maddie’s film was a camp-ified version of Harry Potter with a few jabs at the Spiderman movie franchises. She had come prepared, somewhat unknowingly, with her sorceress costume, and ended up with a relatively big role. It was clever, funny, and well-edited. Whent the film ended, Maddie said her goodbyes, and I signed her up for next winter and summer.

And then it was time to pack up and go home, my heart full of gratitude for the camp, joy for the experience my kid gets to have, and yet a little conflicted inside.

But before we could actually embark on our two-hour return trek, there was a stop to be made, for in the tiny mountain town near the camp, there is, of all things, a costume store. There are maybe 15 businesses in that little strip of downtown, so the presence of a costume shop was more than surprising. Maddie directed us where to park, and we walked a half a block to the store. She had her eye on something from a visit during the in-between-camps excursions, but she hadn’t had enough money to buy it. It was a gold lame, pleated, wing-style cape of sorts. Of course her plan is to modify it somehow (that’s how she rolls) and give it some kind of flame effect at the bottom. And then she saw some lights for costumes and a plan was born.

Aggie, the proprietor, remembered Maddie from her prior visit. She could see how important costuming is to Maddie and searched high and low for a red dress she had that might complement Maddie’s fiery vision.

“She can come work for me anytime she wants,” Aggie offered. I could tell she had Maddie pretty well figured out. She said she has other girls who work there about two hours per week.

My first thought was, of course, I wish the store was closer to our home. My second thought was, “Hmm. Maybe I could drive her down here once a week for a couple hours.” Part of me thinks that’s crazy. The other, more correct part, thinks it would be totally worth it.

We purchased Maddie’s carefully chosen items and, although Maddie wasn’t sure she was finished, I talked her into concluding her visit by promising to bring her back.

So now w’ere back at home and everything is back to normal. Or whatever normal is to us. I am bugging her to take a shower. I have a fussy eater to cook for again. I’m fretting about embarking on the new online school program, which is still rather nebulous in my mind. I’m suddenly back to my usual stressors. And I’m pretty bummed about that.

All my emotions are back. The pride, the fear, the joy, the worry, the amusement, the frustration. It’s all back in the swirling vortex of motherhood. I feel like my brain is literally spinning in my head.

Camp was good for all of us. Back to reality.

My Life, The Roller Coaster Ride

Chris Irvine, Parent CoachLeave a comment

Whenever I hear the phrase “roller coaster ride,” I typically think of the highs and lows it represents. True, a thrilling roller coaster has its ups and downs, usually fraught with some amount of excitement and unpredictability (or even harrowing predictability), but a good one also has some twists and turns. Parts are fun, parts are exciting, and some parts make you wish you could just get off that thing. Like, now.

Such is today.

Last week I was tickled pink by the discovery that Maddie apparently has straight A’s. Woohoo! A thrilling surprise!

And today we are back in the “my kid won’t get out of bed” portion of the ride. Oh, boy, my favorite! This, I suppose, feels more like that slow climb at the beginning of a roller coaster, which I’ve always found uncomfortable. Something else is coming, whether exciting or terrifying, but it’s something. This part is the drudgery.

Or maybe it’s like the entirety of the Indiana Jones ride at Disneyland, which basically just makes my neck hurt. Too much jerking around. I have spent an awful lot of time at the chiropractor lately.

Today Maddie announced she doesn’t get enough sleep. Well, that is not at all true. She is 15 years old and we make her go to bed between 8:00 and 8:30. I wake her up at 6:30. So she’s getting in the neighborhood of 10 hours of sleep. Maybe nine and a half. But I get it. When my alarm goes off each day, it sends a wave of despair throughout my body. Ugh. Not only is it dark, but my first order of business is the most important and typically the most challenging. It’s not a great way to start the day. Dark in a couple ways, I guess.

This morning Maddie needed a few extra minutes for her morning routine. She didn’t shower last night, as scheduled, so in lieu of a shower she was supposed to spend a few minutes this morning doing some cleanup. You know, because of the smell. When I made this pronouncement last night, I wasn’t optimistic. She’s usually shoving a few bites of breakfast in her mouth when the cab pulls up in the morning, and I’m lifting her backpack onto her back and putting her sweatshirt in her hand while escorting her to the door. “Have fun! I love you!” I say, trying to be calm and encouraging. I really want to say, with my hands in fists and my jaw clenched, “Get your ass up there, Maddie!” but I don’t talk to her like that.

So this morning, she is lying in bed. Not moving. Not talking. Nothing. Finally, she says, “I need more sleep.” Finally. Words. 

I give in a little. I see the writing on the wall. Or some of it anyway. So I call the transportation guy and let him know the cab doesn’t need to make a stop here this morning, but Maddie will need a ride home. Oh, I am so hilarious! I am still thinking she’s going to school.

The problem is, I have things to do today. I have to be home by 9:30 to receive a furniture delivery. And then I have other plans. It is not workable for me to spend the 45-60 minutes driving her to school whenever she feels like it. Nor do I think that’s reasonable.

“You can sleep for an hour,” I tell her, “and then I have to drive you to school because I need to be home.”

“That’s not enough sleep,” she says.

“How much do you need? What time are you thinking?” I ask. Reality is beginning to sink in. She doesn’t answer.

“You’re not planning to go to school at all, are you?”

“No, not really.”

Well, at least I have an answer. I can stop the negotiating and finagling, but I’m very unhappy with the situation. It’s Tuesday. She doesn’t like Tuesdays, we have established. Well, now neither do I.

This makes me think of the very first time we took the kids to Disneyland. She was four, and my son was 2. It had been more than 20 years since my last visit. I was so happy! We entered the park, and in a fit of nostalgia, headed straight to the Pirates of the Caribbean ride. It’s slow and easy, but it’s dark in there. I had forgotten, also, about two small drops in the beginning of the ride. It’s so dark that they come as a surprise. After the first one, little Maddie said, in her deadpan delivery, “Oh. This isn’t good.”

No, it’s not good, but there we are, stuck on the ride, whether it’s good or not.

I turn off her light and exit the room. I’m trying to take some deep breaths and let it go. I feel the tension in my neck and, I swear, in my brain. I’m stretching and breathing. Whatever part of the ride this is, I hate it. It’s that one upside-down twist too many.

Actually it reminds me of a ride called the Hammerhead Shark at Discovery Kingdom in Vallejo. You just swing up one way and hang there for what feels like an eternity. Then you swing down the other way, and up again for another seventeen hours. The one and only time I rode that thing, I actually feared for my life. I wasn’t entirely convinced the bars that were clamped in front of me would continue to hold me, and then I’d fall face first into the ground. I clenched my teeth and closed my eyes and waited for it to be over. Luckily, I never ever have to get on that thing again.

I wouldn’t say that Maddie’s refusal to go to school feels especially dangerous, but it’s symbolic of the struggle we face, and of the uncertainty that comes with it. Also the lack of control I feel over the circumstances. Just as gravity would have taken over had the ride’s safety measures failed, so does, perhaps, the Asperger’s. I have no control over this situation. I want to have at least some feeling of control. But today I don’t. I don’t even seem to have any influence.

Then again, Maddie does have straight A’s (at least for the moment). Maybe an occasional day off isn’t the worst thing in the world. This is so confusing.

Today I’d like to stick to the carousel. It’s relaxing. It’s predictable. Pretty much anybody can enjoy it. Usually there are music and pretty colors, too! That sounds so pleasant. The ups and downs are really small, barely perceptible. Everybody’s smiling! It gradually slows down–no starts and stops, no jerks or squeaky breaks–and then everyone has plenty of time to get off. Or if you want, you can just stay put and ride it again.

I’m starting to relax. I’m heading toward acceptance. This is what today is. It just is. Whatever comes my way–and I realize nobody ever knows what’s coming–I will nod my head and think, bring it on. I can do this.

I can take the slow ride up and the fast ride down, the loops and twists and the hang-upside-downs. Eventually it will slow down. Eventually I will get off. And then I will get on another ride. And that’s okay. I might not enjoy an awful lot of it, but I will be alright.

Years ago, on that girls-only trip to Disneyland, we went (finally!) on California Screaming in California Adventure Park. That is an AWESOME roller coaster. Just the perfect blend of excitement and fun. Maddie screamed the entire time. I couldn’t see her face, so I became unsure of the intent behind her screams.

Finally I asked, “Are you OK?”

“I’M GREAT!” she yelled. She was taking in every curve and drop of that ride and living it to its fullest.

Maybe, like Maddie, I should scream just for the fun of it. I can’t get off this ride, but I can make the most of it! Or at least I can try.