parenting

Swimming Upstream

Chris Irvine, Parent Coach1 Comment

I don’t know if I’ve mentioned this before, but I love to shop. I know it’s stereotypical and not necessarily admirable, but it’s the truth. I love clothes, I love shoes, I love jewelry, I love purses. I also love to decorate my house. I love to buy gifts. If you mention you’re looking for a particular dress, I will take it upon myself to search to the end of Google to find it.

It’s satisfying. It’s a way that I express myself. And even if I’m not buying, it gives me pleasure to look at and feel pretty things. I can visit the Prada department at Neiman Marcus (just because my friend works in the department next door), and enjoy the beautiful fabrics and stunning details and superb craftsmanship without feeling sad for one second that Prada clothes are out of reach. That’s OK! It’s like art to me. Do I got to a museum and lament the lack of a Monet or Rodin in my house? Of course not!

I remember when I got pregnant that I wished so much for a girl. Having grown up with two sisters and no brothers, girls were what I knew and understood. And then at that 20-week sonogram, my wish came true. There was a little tiny girl growing inside me. Boy, we were going to have a good time, mother and daughter, doing all that fun girly stuff together.

And then I had Maddie. Sure she’s a girl, but she’s not especially girly. Which is perfectly fine. I absolutely love her the way she is and wouldn’t dream of changing her, but there has been a little bit of mourning over the loss of some dreams. She’s a lot of fun, but we don’t share many interests. She loves to craft. To me crafting is like getting whacked in the head with a hammer: I’m just glad when it’s over. She loves comic books. I actually do like superhero movies, but that’s about the extent of it. She doesn’t care about her hair or her clothes or her shoes or getting her nails done. At least she likes to color her hair. That’s kind of fun.

The real problem with her disdain for shopping, though, really comes into play when she actually needs something. Like bras. Or shoes. Or swimsuits. Or a graduation dress. I do all the legwork, trying to find something that will fit her rather short but curvy body and meet all her sensory requirements as well. It’s not easy. But I do it. I scour online shops and Target and Old Navy and whatever else I can think of for jeggings with a short rise, swimsuits that cover her up in all the right places, shoes that fit her terrible feet, and most challenging of all, bras that meet her many particular needs. It’s a chore. It could be fun, actually. And today it kind of was.

Saturday we leave for our spring break trip, this year to Mexico. Our week will be spent swimming and reading and playing games together. It’s a week of relaxation and quality family time (I hope). And suddenly, a couple days ago, it occurred to me that the kids have probably grown since last year and might not be properly outfitted for a tropical vacation. So yesterday I somehow got Maddie to try on the few things we could find that would be suitable for warm weather. And I was glad I did. We found two swimsuits that were way too small and a few dresses, only two of which fit. And one pair of shorts.

So here I was, six days before we leave, with a bit of a problem. A hard-to-fit teenager who refuses to shop in need of, all things, a swimsuit. Or two. Or three. Plus some clothes. So my wonderful niece, Rachel, who’s living with us right now, helped me pick out eleven swimsuits on Amazon for Maddie to try on when they arrive in the next couple of days. I have no idea what size she is, so it’s a bit of a gamble. But with a girl who won’t shop and few places nearby that offer full-coverage suits, Amazon was the answer for sure. That’s what I did last year.

And then we spent some time in Target looking for sundresses. I found some great stuff, including a Batman night shirt and a tee shirt with a Dia de los Muertos-style Darth Vader and the words “Yo soy tu padre” on it. Genius. Perfect. Also some comfortable tee-shirt dresses. I was so happy. I felt like we nailed it. I even declared our outing a success on our way home.

And then I presented the dresses and shorts to Maddie. She was not impressed. She was not interested. In fact, she was pretty rude about it.

“I don’t need any dresses,” she said flatly, not looking up from her computer screen.

“Well, you do need a couple things for Mexico,” I said. “Plus I got you a couple other things I think you’ll really enjoy.” I showed her the Batman and Star Wars items. Those got quiet approval. But she refused to even acknowledge the other stuff. Or the effort I had put into it. No gratitude, no sensitivity to my feelings, no real acknowledgement that I had done anything for her.

“I’m not trying anything on,” she announced.

I grabbed her stuff. “Well, then I’ll take it all back,” I said.

“No!” she spat, and grabbed the whole pile of clothes.

“Well, you don’t have to try everything on, but anything you are interested in keeping you have to try on. That’s just the way it is.”

No response. So I left. I don’t know why this particular exchange affected me so much, but in that moment I felt the wind just leave my body. I went from feeling so pleased to feeling utterly deflated in the matter of moments.

I also don’t know why I expected that to go any other way. She doesn’t care about clothes, unless it’s a really cool tee shirt. So not only does she not get particularly excited when I buy clothes or shoes for her, she sometimes actually gets angry. Yes, angry. As if I have wasted whatever time and money on picking out that rather than something she’d really enjoy. Okay, I get that. But this time she actually needed some clothes. (Fingers crossed at least one of those swimsuits works out!) And I took it upon myself to get her what she needs and she couldn’t have cared less.

I realize that’s probably not unusual for a teenager, the lack of gratitude and grace. But perhaps it’s the relentless feeling of swimming upstream that I experience on a daily basis that has left me feeling so deflated after this particular exchange. Deflated. Demoralized. Depressed.

The truth is, she may never develop the gratitude and grace I wished for in that moment. That would require a level of perspective taking that is not necessarily natural for people with autism. She will probably never think to herself, “Gee, Mom is so nice to me I ought to reciprocate, and go to school/try on clothes/clean my room.”

Why do I try so hard? I wonder sometimes. It’s the same old battle inside me: how do I both accept my child and refuse to give up? If you wanted to learn how to ride a bike, but knew the chances were slim that you would ever succeed, how long would you keep trying? Eventually, I suspect, a person would accept their fate and give up. And, frankly, that would be the logical thing to do. How much effort do you put into something that’s unlikely ever to come to fruition? There has to be a limit, right?

But when it’s your kid, there is no limit. How can there be? You just keep going, even if you are swimming upstream. You have to come up for air once in awhile, but you dive back in and swim harder. You accept that it’s going to be a struggle, you accept that you may never ever reach your destination, but you have to believe, at least some of the time, that the swim is worth it.

But sometimes you just get tired. Today is one of those days. My fins need a rest. I need to breathe freely. And I’ll be back in the stream tomorrow. After all, we will have swimsuits to try on.

Another Spectrum

Chris Irvine, Parent CoachLeave a comment

Spectrum:

1. A band of colors, as seen in a rainbow, produced by separation of the components of light by their different degrees of refraction according to wavelength.

2. Used to classify something, or suggest that it can be classified, in terms of its position on a scale between two extreme or opposite points.

How I felt the true meaning of that word this last week!

One moment I was holding Maddie’s hand while she struggled to tolerate the miserable sensation of “buzzing” in her face, begging me to somehow help her. In another moment I engaged in conversation with Maddie and her cousin about how one of them wished she knew herself better and the other had learned in the last couple of years how to feel more comfortable presenting her true self. From helpless young child to self-aware, philosophical teenager all in the matter of a weekend. A spectrum, indeed!

Yesterday I drove about an hour to have Easter with my parents. Maddie had spent the night with my sister who lives near my parents, so we all met for a casual afternoon celebration including lunch and multiple eggs hunts. And, as is always the case when my niece is involved, board games. We struggled through a few rounds of Apples to Apples (if you don’t have it, get it!) because we just couldn’t stay on topic for some reason. Suddenly, Maddie announced, holding her belly, “Ugh. My stomach hurts.”

“Do you need to lie down?” I asked.

Much to my surprise, she nodded quietly and started heading toward the nearest bedroom.

“Do you need anything?” I called.

She nodded. And pointed. At me. Of course. Just like last week, when she wasn’t feeling well, she just wanted her mom.

Hey, I get it. I’m 48 years old and it wasn’t so long ago that I felt like the one person who could take care of me was my own mom.

When Maddie was born my mom came to live with us for the first week. When I was eight months pregnant with my son, and Maddie had just turned two, I had complications that made it very difficult for me to get around, so Mom stayed with us for the entire last month of my pregnancy. She did everything. She cooked and cleaned and dug up stumps in our backyard and cleaned the tops of our kitchen cabinets. She did laundry and took care of Maddie. I was so grateful to have her there.

And then, after both visits, she unceremoniously began to pack up to go home. She had certainly done so much more than I ever could have imagined. But I wasn’t quite ready to be without her, even though I was 33 and 35, and so I cried. The first time, when suddenly there I was with a newborn baby and a lot of raging hormones, I was scared. How would Jake and I manage this new life? The second time, when my son was born, I was certainly more ready, but after a number of complications (including a systemic rash and a rib cracked during my c-section) I was still pretty miserable. Maybe I was scared. Now I had TWO babies. If I thought one was challenging, how on earth would I manage two? And post-c-section with my still-cracked rib and a rash that was getting worse before it got better.

And so I cried. With Maddie I cried for two days. With my son, it was brief, but I still cried. I still wanted my mom.

And here was Maddie feeling sick to her stomach, wanting her mom. But now she wanted me for something I really couldn’t help. I finally talked her into going into the bathroom, where I thought her problems might eventually be solved. She sat there, suffering with cramping intestines, reaching out for my hand. Again. “Help me,” she begged.

“Well, I can’t really help you with this.” She’s nearly 16. I really can’t help her in the bathroom. Nor do I necessarily want to.

“Uh, I’ll sit out here and you can leave the door open,” I offered. We were in my parents’ room, so I could just close the bedroom door and we could have privacy. I sat on the couch, looking at the spines of my mom’s books for something to read. I didn’t have my reading glasses nor was there anything I was particularly interested in. (I eventually picked up a book and handed it to Maddie. Painted Crafts. The operative word: crafts. Maddie loves them. I’m allergic to them.) So I just sat and sat and waited. And tried not to listen or breathe through my nose.

“OOOOOH, help me, Mom!” she cried again. She must have had food poisoning. She was in pain and sweating and uncertain of how long this feeling was going to last.

I sighed, “Maddie!” I’m sure I was exasperated by this point. “There’s really nothing I can do for you.” Deep breaths. Of course my heart went out to my suffering child, but I was also feeling exhausted from the demands upon me over the last several days.

Eventually she was alright and we were able to make the hour drive home.

But I couldn’t help but notice how sometimes Maddie is very fifteen, and sometimes she’s very four. Teenager-y and toddler-y. And there is not a lot of in between.

And this morning there was a lot of teenager-iness.

Mondays are always hard for Maddie. Mondays are hard for most people, I suspect, and I tell her that all the time. Everybody is tired! Even your teachers! But they get up anyway!

Despite her promise that a sleepover on Saturday wouldn’t negatively impact her school week, she was unmoved this morning. I tried all the usual tricks, and eventually I managed to get her up. I wasn’t sure how I did that although some threats were involved, as was a little bit of yelling and even some counting (toddler-iness!). I had taken her electronics out of her room and promised to return them once she got up. I even let her wear the shirt and pants she slept in (just add some deodorant, please), so all she had to do was put on her socks and sneakers, grab and hat and glove, throw her backpack over her shoulder and head up the stairs.

I took the dogs and her French toast wrapped in a napkin and headed to the door. Maddie asked, “Where’s my phone?”

“In my purse. You can have it in the car.”

Shortly after getting the dogs into the backseat and settling in myself, Maddie appeared with her backpack. I looked at the clock. 7:35. We might be on time today! I thought cheerfully. It was a stressful morning but not only we were on our way to school, for once she might not be late.

Maddie opened the door, threw her backpack in, sat down, and reached for my purse. I buckled my seatbelt. And then…

She grabbed her phone and got back out of the car.

Are. You. Kidding. Me.

She did all of that in order to get her phone without having any intention of going to school. It was all a big ruse. Or at least it became a ruse. I suspect the more insistent I had gotten about school, and the fact that I had removed her phone, had somehow inspired her to dig in her heels. She was going to win this. 

I hopped out of the car but there was clearly no way for me to win this, if winning meant getting her phone back. Even if I had tried, I’m not strong enough (or willful enough) to physically extract the phone from that grip of hers. I could stand in front of her all day, keeping her in the driveway, I guess, but that’s just ridiculous.

“If you don’t get back in the car or give me your phone,” I said sternly, “when I do get my hands on that phone, you’re losing it for a month.”

“You don’t mean that,” she challenged.

“Oh I certainly do.”

Unfortunately that month includes a trip to Mexico. Oh crap. What have I done?

Seriously. What. Have. I. Done.

I fell into the trap again. She was so determined to keep her phone that even if I had promised to destroy it during the night, she wouldn’t have done anything differently. I could take away her allowance for a year. I could even take away sleepovers for a year, and she absolutely lives for sleepovers with her cousin. I could have done any and all of those things and she would have stuck to her guns because in a moment like that, her “guns” are the only things that matter.

Actually, now that I think about it, this morning’s behavior seem both toddler-y and teenager-y. Rebellious like a teenager. Unable to anticipate the future like a toddler. Stubborn like Maddie.

I guess ultimately that’s who I’m dealing with. Not an age or a phase, but just a Maddie. She’s complicated and confusing and maddening and surprising. She is a whole spectrum unto herself! And it’s very challenging.

Some people might be grateful for the challenge. Or at least they might think they would be. I’m not grateful–at least not today. It’s damn hard. Today I feel like I’m losing my mind.

But I do accept it. That’s a gift, I suppose, of having a special needs child. You learn a whole lot of acceptance. You learn to see a person for her whole self, and you love and accept all those parts. You embrace every color of the rainbow and learn to see all the colors in between.

And somehow you just keep going. You get up every day hoping for a pretty indigo or gold but knowing today might be kind of a muddy brown or a swamp green. And today the spectrum wasn’t pretty. But maybe tomorrow will be that soothing, beautiful blue or something even better.

Finding Peace in Acceptance

Chris Irvine, Parent CoachLeave a comment

Dear readers, you may have noticed I haven’t blogged in a few weeks. I have had occasional dry spells when I’ve started a bunch of posts but couldn’t seem to develop them properly. Or maybe I’ve been busy. Or tired. Or maybe I just couldn’t write one more “I couldn’t get Maddie to school” story. How boring it would be if my blog were a daily account of Maddie’s attendance, which is predictably unpredictable if that makes any sense.

A few days ago I started thinking about my blog, and I realized what my “roadblock” has been. The reason I put quotes around “roadblock” is because that word tends to indicate something negative, something in the way of a goal. In this case, though, I think the “roadblock” has been my attitude of acceptance. I have spent so much less energy swimming upstream. I just hopped on board the raft for the ride, I guess. The ride might be tranquil and relaxing, predictably smooth. Or I might hit some Class 3 rapids, which require a bit of attention if you want to stay on the raft. Or maybe a Class 5 comes into focus, and I have to hold on for dear life despite the fear and lack of control over the outcome.

I went whitewater rafting some years ago, and, not being an especially strong swimmer, my approach was to spend the ride leaning slightly toward the middle of the raft. That way, if I lost my balance, I would (I hoped) fall into the safety of the raft, not the wildness of the river. It worked that time. Maybe that’s what I’m doing now. I didn’t fight the waters; I just tried to manage what was coming my way in the best way possible, accepting that the unknown might be around the corner.

Having a thirteen-year-old and a fifteen-year-old, I see an awful lot of orthodontic work among their peers. Braces have come and gone over the years. Many kids are on their second round. Some have even completed that.

Maddie could use braces. Her jaw is slightly off center, and although her teeth are generally straight, her canines have come in slightly above of the rest of her teeth. Braces would straighten her jaw and give her adorable face a dynamite smile. But something has been holding me back.

A couple of years ago we visited a holistic dentist for this purpose. Instead of traditional braces, the protocol involves a series of appliances that you wear on your teeth that slowly move your teeth into place. The appeal is in the outcome, which would theoretically help breathing by moving the teeth outward for a wider smile rather than inward as has been somewhat more traditional (or so I am told). I absolutely loved the idea, but I was skeptical about Maddie’s ability to manage something that was, realistically, optional. And I was right. Two years later the first appliance still sits in her nightstand, barely used. I guess I gave up. She just couldn’t manage it, and neither could I. A long and uncomfortable process that involved compliance, for an outcome Maddie didn’t even care about, was ill-advised, but I had paid the $4,000 anyway. A poor choice in every aspect.

And yet I’ve felt guilty about my failure to take care of Maddie’s smile, as if I have failed her in a measurable way. Everybody else is out there getting their perfect smiles, and every time I thought of even meeting with an orthodontist, something stopped me. After Maddie’s most recent trip to the dentist, I was determined to move ahead, but this time with braces because once they’re installed, they’re not going anywhere until the job is done. But the “call orthodontist” item on my to-do list remained untouched as the days went by. I couldn’t even make the phone call.

And then my niece Rachel, who is living with us, said something magical. She described how painful and miserable having braces was for her. I never had any orthodontics, so what did I know? I see other kids struggling on days when their braces are adjusted, but I didn’t realize how painful it could be. Nor did I realize how much tedious care was required, like frequent tooth-brushing and flossing above the braces. As I pondered the unlikelihood of braces being a successful endeavor anytime soon, Rachel said, “Maybe she’s not ready.”

YES! Maybe she isn’t ready. Maybe not now. Suddenly a weight was lifted that I hadn’t fully realized was there. She’s not ready. She’s not ready and that’s okay. She doesn’t have to be ready now. At all. Even if she’s not ever ready, so what?

And so I let it go. Perhaps in a few years we can make it happen, but the truth is it might never be worth the suffering. Maddie certainly doesn’t care if she has a perfect smile. I hope she doesn’t end up with jaw problems, but if she does, we can help her then.

Those words have sunk in and settled in my brain. Maddie isn’t ready. Maybe she’s not ready for full-time school. Maybe she’s not ready to handle homework. Maybe she’s not ready for a lot of things. And what’s wrong with that? What is the hurry, after all?

I have long realized the interesting dichotomy that resides in my daughter. She is at once 15 (“He’s hot!”) and four (“I need help shampooing!”). Right now she’s in her onesie cat pajamas, lounging in her cave-like room, playing Minecraft. I’m not sure which parts of that are four and which parts are 15, but it doesn’t matter. She’s just Maddie.

And–at least for the moment–I’m okay with that. I am trying to meet Maddie where she is. And for now it’s working. Of course it’s day eight of a nine-day vacation, during which I have required virtually nothing from Maddie, so perhaps I’m in denial. Come Monday morning, who knows how I feel?

I just take it as it comes, and there is certainly some peace in that.

The Basketball Game

Chris Irvine, Parent CoachLeave a comment

“I told Mr. L I would be at a basketball game tonight at 7.”

That was the text I received from Maddie around 10 a.m. today. I had seen emails about a basketball team for the special ed (“Bridge”) class, but Maddie hadn’t indicated she was involved so I had ignored them. I get so many emails I have to pick and choose what I read, right?

“Cool,” I replied. “Sounds fun!”

“Will you take me?”

“Of course!”

That conversation led to some of the best ten minutes of my entire life. Ten minutes because that’s how long the game was.

Maddie is not an athlete by any stretch of the imagination. Much like her mom, she has lead in her feet, and worse than that, she has bad feet. They’re flat and supernate so badly that she can’t exactly break into a full run. It’s more of a lumbering fast walk. She never really mastered catching or throwing, either. She did, however, learn to love basketball at her previous school, where she usually played during lunch with two very tall teachers and a bunch of high school boys. She’s short and slow, but she is fierce and determined. She also prides herself on being able to “take a hit,” and she most certainly did during those games, more than once resulting in a very broken pair of glasses and a pretty nice lump on her head. I wouldn’t say she enjoyed the experience, exactly, but she felt like a bad-ass for having not only survived it, but actually picking herself up and carrying on as if nothing had happened.

Most of the kids in her class aren’t athletically gifted. Lots of kids probably had motor skills delays like Maddie did, some just can’t manage the whole game concept, and many of them have probably never played basketball at all. But Maddie has quite a bit of experience, even if it was only lunchtime play.

Still, apparently she was hesitant to join until today. Somebody at the district level organized a series of basketball games between the special ed classes at the different high schools. Tonight was the first game. And it was amazing.

About twenty kids from Maddie’s school had signed up, an awfully big team for a ten minute game. The rules indicate that a non-IEP student would be on the court with four teammates to help pass and set up plays and generally keep things moving.

Before the game started, the kids were lined up for shooting drills. Maddie was on the court talking to her teacher and then suddenly disappeared. My niece Rachel looked for her after securing a t-shirt for her (the student council brought free high school shirts for anyone who wanted one), but she had disappeared. Finally the girls found each other, and Rachel learned that Maddie had avoided the drill because she can’t shoot baskets. Moments later, there was Maddie at the front of the line anyway. She had somehow mustered the courage to face her perceived shortcomings. She stepped forward tentatively and threw the ball toward the backboard. It ricocheted right into the basket as if Maddie had done that a thousands times. Instead of jumping for joy or pumping her fist, she did a double thumb-and-forefinger point. “Yep. That just happened.” And I knew we were in for something special.

A young-looking sweet-faced boy named Nathan turned out to be a pretty good shooter. Each time he made a shot during the drill, his face lit up as the crowd cheered and he soaked up that moment with so much joy and pride. He stood there smiling, not quite knowing what to do besides enjoy his achievement.

Already I could feel the tears welling up. I came for a good time, not at all expecting the emotions that would come, too.

When Maddie’s teammate Nick dribbled down the court and made the first basket of the game, I was overwhelmed. I suddenly understood why this was happening. This was an opportunity for the kids to feel the joy of playing in front of a crowd, to be cheered when they made a basket, or just took a shot, or stole the ball. Not only that, each player was announced at the beginning of the night. Stars for an evening.

The opposing team’s “ringer” looked like a varsity player, a very tall young man with some real skills, who had to downplay his level of play and never ever take a shot. Several times he passed the ball to a very short, round girl, who ducked and flinched whenever the ball came her way. Another girl with a multi-colored braid took many shots, and missed every single one, but she just kept plugging away. I was dying for her to make a basket. She never did, but I hoped she’d felt the satisfaction of being so aggressive out there, and that she’d gained some confidence for next time. One kid one that team kept trying to steal the ball from his teammate. I guess they could use a little bit of coaching.

Primarily because of her poor shooting skills, Maddie focuses on defense. So when it was time for her to sub in, I eagerly awaited the other team’s possession of the ball so Maddie could do her thing. She was alert. She played what I would Maddie-to-Man defense, basically attempting to block any opposing team member who had the ball. I think she had the ball in her hands once, and I cheered for her to make a pass. She did, and that was the end of her ball-handling career this evening. I wondered how she would feel about her performance. She didn’t play as aggressively as I had expected. I hoped she’d feel proud of herself and want to play again, but I would have to wait until the car ride home to get her feedback.

The game was over far too soon. I guess it really only was a 10-minute game. I could have used anther 20 at least, but this was the first game for all those kids and apparently they needed to start slowly.

“I know that was only a 10-minute game,” remarked Maddie as we stood in the middle of the court, “but it was quite enough.” It turns out two or three trips up and down the court had been plenty for this evening. Clearly she needs to build some stamina. We’ll work on that.

But for tonight, it was indeed enough. Maddie’s teachers, lots of parents, the district coordinator, an assistant principal, student council representatives, varsity players and more all showed up for these kids. The gym was loud as the whole crowd cheered for both teams.

And I was elated.

For the last couple of weeks I have had trouble writing. I started and stopped several times. Parenting has mostly been a huge struggle. Maddie refused to go to school the first three days after the break ended, and then she was sick for a week, and then the struggle returned in full force. She made it to school for a half day, then most of a day, then a little more of a day, and then finally a full day.

That first successful half day only happened because I did something pretty dramatic. She had refused to go in the morning, but finally after Mr. L’s suggestion, she agreed to go to the two classes after lunch. I clinched the deal by offering to get her some fast food (a rare treat) on the way there. We had a pleasant ride. Our dogs sat in the backseat for the long round trip as well. When I parked near the office, she opened her door, and then she reconsidered.

“I can’t do it,” she said.

I went from calm and optimistic to steamed and panicked in a millisecond.

And then the shit really hit the fan. Our dog Ginger jumped out and began running around the parking lot, sniffing frantically in this new, formerly un-smelled location. My frustration doubled. Maddie rounded up Ginger and got her back into the car, and she and I resumed our conversation. Then somehow Ginger escaped again. I was simultaneously trying to manage my kid and my dog, and I thought my head would explode.

And then I realized I had an opportunity. Maddie was outside the car. So was her backpack. I coaxed Ginger into the car on the driver’s side, hopped in and shut the door. And then I hit “lock.” There I was with the dogs in the car, and Maddie was locked out. She put her hand on the window.

Boy, was she surprised. I waved at her and shook my head. “Go to class!” I yelled through the window. I wasn’t angry. I was just being loud so she could hear me.

She backed away from the car as I slowly began to pull away. I waved. She stood there.

And then I watched her in my rearview mirror. She pulled out her phone. I thought for sure she was trying to call me. But she didn’t.

I circled back through the parking lot and saw she was headed for the office, where she was to drop off a doctor’s note excusing her from the previous week. And then I went home.

I felt terrible. I had just locked my kid out of the car and driven away. Who does that? I wondered. Seriously. Who does that?

The answer, apparently, is a desperate parent who is trying to do the right thing without ever really knowing what the right thing is.

All day I felt exhausted and sad and guilty. Not for a moment did I feel especially victorious or even right about my decision.

And then Maddie got home from school. I heard the door open and close, the scramble of dogs on the wood floors and the high-pitched greetings from Maddie to Ginger and Banjo. A moment later she came to my room. I was nervous. I knew she’s be upset or mad or traumatized or questioning or something.

“How was school?” I asked.

“Good!” she answered. Not a word about the morning. Not even a “why?” I couldn’t believe it. I had felt nauseous for hours, and Maddie had turned from the car and accepted her fate. And then she had a pretty good day.

Each day has been a little more successful since then, culminating today in a on-time arrival. Mr. L assured me tonight that he doesn’t care about tardies at all. He just wants her to get there. Indeed. I don’t even really care about homework at this point. Some reasonable attempt at attendance sounds like a lofty enough goal.

Last week I was ready to give up. I began to question whether all this mental and physical effort was worth the stress if it wasn’t even helping. Why kill myself trying to get Maddie to school every day? My mornings feel almost heart-attack inducing. I’m on blood pressure medication for a reason, I guess.

After the game tonight, my niece Rachel and Maddie and I stopped for ice cream. It seemed like a good night for a special treat. “How do you feel about your performance?” I asked over ice cream.

“Good!”

“It seemed like you weren’t being as aggressive as you usually are,” I observed. I wanted to encourage her to really go for it.

“Well, I looked at the other players and thought I should go easy on them. I didn’t want to block them too hard.”

“Yeah, that’s probably the way to go,” I agreed. God, I love that kid.

At home tonight, Maddie donned a brand new costume that had arrived in the mail, to surprise her dad. She stood there holding her swords in a threatening manner, enjoying yet another special moment, and then we told him about the game.

“I feel happy,” she finally said. She loved playing basketball and was excited about her costume. It was a good day.

And there you have it. Maddie had a great day.

I had a great day, too.

And it was all because of basketball.

Happy ****ing New Year

Chris Irvine, Parent Coach1 Comment

Two thousand sixteen started out great! We went to a lively party at my BFF’s house just up the street for New Year’s Eve, and thanks to celebrating East Coast New Year’s in California, I was home before midnight. We celebrated the following night by dancing to a highly entertaining 80s cover band at a nearby music venue. I haven’t had such a fun-filled two hours in a very long time. I danced so hard I kind of injured my permanently fragile neck, but after about three days I was recovered. And it was totally worth it.

And then, on January 2nd, Maddie came home from camp. I am both sad and embarrassed to report that although I was certainly happy to see my sweetie-pie, life got more challenging in that instant. What followed was four unsuccessful days of badgering her to take a shower along with the anticipation of the impending school week. I was temporarily relieved when I learned she had Monday and Tuesday off, so we had a couple extra days of camp recovery time.

I was optimistic. I’m not sure why. There was no reason to believe that a new year would bring new behaviors. In fact, I have never put much importance on the change in years. So, one day it’s 2015 and the next day it’s 2016? One day it’s Thursday and the next day it’s Friday. So what? It’s just another day. Not very romantic or sentimental, I know. I have just never had that feeling that the first day of a new calendar year was particularly significant. So why for even a second did I think otherwise?

As it turns out, my first and usual instinct was right. We are right back where we started. In hell.

Tuesday Maddie was in a good mood. She woke up around 8:00, very early for a teenager on vacation. She had energy and was perky and when I asked her if she was ready for school the following day, she gave me an enthusiastic affirmative response. All right! I thought. Tomorrow is going to happen! 

Well, “tomorrow” did happen. Oh, yeah, it happened all right. It happened like all those other miserable days of 2015 when my tired kid just dug in her heels and said, “No.” How quickly my optimism turned into anxiety and a sense of defeat. Those feelings are so close to the surface for me all the time. Frankly it’s a wonder that I ever feel otherwise. But I guess it’s all that darn hope I try to grasp onto with my fingernails (or whatever substitutes for fingernails when your stressful life meets with a bad habit and you’re left with nails torn down to the nubs).

Maddie, too, was at least superficially optimistic about today. She chalked up her inability to (or refusal to) get up yesterday to a rough night with a cat who kept clawing at her face all night. She felt justified in the afternoon after sleeping an additional five hours. “See, M0m?” she pointed out. “It wasn’t really a choice to stay home. I needed to. I slept for five hours.”

“You could probably do that any day,” I replied. Seriously, what teenager couldn’t?

“Well, I’m better now. And I’ll put Daisy out tonight.”

“You promise you’ll go to school tomorrow?”

“Yes,” she insisted. And at the moment she really meant it. At least I think she did.

But promises don’t mean much to Maddie if breaking the promise behooves her in some way. Don’t get me wrong: if you tell her a secret, she’s a vault. If she promises you a sword, she’d rather skip her homework and/or sleep to make it. But if she’s promising to do something that’s going to be difficult, don’t count on much.

So as you guessed, this morning, day two, didn’t go so well. She did get up. She got dressed with a lot of coaxing and even some actual help from me. She even came upstairs and put on her backpack, but she stopped in her tracks when she stepped outside the front door.

Clearly she was stressed. She was so stressed, in fact, that she reverted to something she did long ago to soothe herself: she dampened a wash cloth to suck on. That’s a bad sign, I know, but I was hoping that a little self-soothing would help her cope with what was to come. And honestly I believe once she was on her way, everything would have been fine. But the anticipation of a challenging day was apparently too much.

And things went downhill from there.

I’m sick with a terrible cold, reminiscent of, but certainly not as terrible as, the case of pneumonia I had last year. My husband is sick, too.

“There’s some dog poop over there,” said my son. “It looks weird.” Our puppy hasn’t been 100% well the last few days, as evidenced by the varying levels of weirdness of what’s coming out of him. So I picked up what I could with some toilet paper and flushed it down the toilet, only to see water gurgle up and actually over flow. Luckily (or not so luckily) I have an inordinate amount of experience with clogged toilets, thanks mostly to Maddie’s historically dramatic overuse of toilet paper, so I went straight for the water supply and turned it off before too much water escaped.

Then it was time to take my son to school. We left just a few minutes later than normal, and then I forgot to make a particular left turn that helps us avoid traffic, so I got stuck in the usual frustrating line. I was thankful that he was willing to hop out of the car early so I could avoid the worst of it and turn around and go home. It’s the little things, you know.

I still have a little water to clean up. And I don’t think I have the right rug cleaner to do a great job on the dog poop. But those are little things too.

The big thing is Maddie. My son had a thousand ideas to share with me in the car on the way to school. He had tried several approaches to get Maddie motivated this morning, and while I marvel at his wisdom and thoughtfulness, he can’t really help me. I figured I’d let him try, though. Why not? After all, when one member of your family is acting out, the whole family suffers.

Maybe there’s an ALANON-type thing for families like ours. I recall hearing this somewhere: “When one member of the family has autism, the WHOLE family has autism.” No, that doesn’t make us all autistic, but we all suffer from it, or benefit from it, or are in some other ways immensely impacted by it.

And today the impact isn’t good. I’m exhausted from being sick and having a sick husband.

I’m pessimistic at the moment, although perhaps I shouldn’t be now that I think about it. For some people the start of a new year brings hope and a new outlook. For Maddie newness isn’t good. New starts aren’t good. She does better when she’s in the swing of things. We just need to get her there.

Forget the new year, then. Forget starting over. Forget change. Just keep going. Keep plugging away.

The January question of the month: “Did you make any resolutions?”

No, I did not. I never do. Maybe, in the end, that’s a good thing. My resolutions aren’t annual; they’re daily. My resolution is always to do the best I can and try to forgive myself. My resolution is to survive the day and then start over the next day. My resolution is to try to keep my cool the best that I can in the face of some extraordinarily challenging circumstances.

Happy New Year? Sure, I guess. Happy New Day? Maybe. Just New Day? Always.

 

Winter Camp

Chris Irvine, Parent CoachLeave a comment

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

Chris Irvine, Parent CoachLeave a comment

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.

The Problem with Geometry

Chris Irvine, Parent CoachLeave a comment

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

Chris Irvine, Parent CoachLeave a comment

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.