The Dance That Almost Was

When I was a teenager in the 1980s, I loved my high school dances. I’m not sure why, but the kids at my school knew how to throw a good dance. Kids actually danced. One of my friends would sweat to much that her bangs would get wet, bringing out the cowlick she worked so hard to camouflage. We just danced with abandon.

I still love to dance although I don’t do it very much. Most of my dancing is relegated to the kitchen while I’m doing the dishes. Or maybe a silly move to entertain my kids (although I’m probably only entertaining myself). A couple weeks ago my husband and I caught a local 80s cover band at a local music venue, and I danced nonstop for two hours. That’s particularly remarkable because my back hurts if I walk around the block; somehow dancing must block the pain receptors in my brain, as evidenced by the fact that my neck only hurt the day after the head-banging that always goes along with an AC/DC song.

Maddie was born with my love of dancing. When the kids were little, we often spread couch cushions around the TV room for a family dance session. We’d crank up some B-52s and jump and dance on the couch and onto the cushion-covered floor. It was such a satisfying way to spend time together and wear out the kids at the same time. Genius!

You may also recall the talent show during her fifth grade year, when she delighted the crowd with her stage-side grooving. Clearly this kid loves to move her body.

So when I heard about the Winter Formal at her high school tonight, I really hoped she’d want to go. Her answer: a very quick and certain “No.”

I wasn’t really surprised. She loves to dance. But she tends to retreat to her room on the weekends. Also, an eight o-clock Friday start is rough. I’m kind of the same way. Once I settle in for the evening, I’m hard pressed to change gears. I can hardly imagine leaving my house after 7 p.m. to go somewhere. Once my pajama pants are on, forget it! I’m done. Thursday was Open House at school. She said she had something she wanted to show me, but I was absolutely certain that when the time came, she wouldn’t be able to motivate herself to leave the house again. I was right (and kind of happy after having made two round trip to her school already that day).

Yesterday a classmate’s mom sent out an email trying to round up a group of girls to go. I had been so short on sleep all week, my plan was to go to back to bed after I took Maddie to school. But of course I checked my email first, and that’s when I discovered this new plan. Maybe Maddie would want to go! But I had three problems. It was 9:30 and ticket sales would close at noon that same day. Also, Maddie needed to sign a dance contract, agreeing to certain standards of behavior. All kids are required to do that in order to attend a dance, and we hadn’t completed it yet. Finally, I didn’t even know if she wanted to go, so I had to somehow communicate with her.

Fortunately her special ed teacher is a huge help, so I was able to talk to Maddie around 10 a.m. I shared the new information and asked if she thought she might want to go. “Yeah!” she answered decisively. So my task was to make the 30-minute drive (one way) to her school for the second time that day, have her sign the contract, turn it in at the office, and then purchase the ticket. It was a little more complicated than that in the end, but by 11:00 I had done it all.

But there was still one more problem to address: what would she wear? Every single day of her life she wears jeggings, a tee shirt, a snap-back hat or a beanie, and either Uggs or sneakers. That is all. It’s a struggle to get her to dress up even a little bit, so I knew had another battle ahead. I remembered she had a black dress from last year’s prom, but I had to make sure it still fit. If it didn’t, I only had that evening to find something else, an especially difficult proposition when your kid won’t go shopping. I always have to buy several items and bring them home and hope they fit. I also had to get her to take a shower.

She got home from school around 4:00 p.m. and I managed to get her to shower right away. Then I asked her to try on her dress so I would have time to shop if it didn’t fit. And that’s when it happened.

“Yeah, I’m not going.”

I was upset. I shouldn’t have been, but I was. I knew from the beginning of this whole process that she might bail out. I really did. But I thought I’d rather give her the opportunity to go if she wanted, so I had spent the $50 on a ticket just to give her the choice. Apparently, though, deep down I was emotionally invested in her going.

“I really want you to go, Maddie.”

“But I’m worried I won’t have any energy for Saturday.” Tomorrow I’m taking her to my parents’ house for a get-together with my sisters and two of her cousins, including her best friend/cousin Maggie, whose company she pines for more than anything.

“You won’t have to DO anything. We’ll just be hanging out. I think you can do it.”

“I’d rather hang out with Mags,” she said. And she means it. She would rather play with her cousin than anything else. If they went to Disneyland together, she might die from happiness.

“Why don’t I pick you up early from the dance? Then you’ll be OK.”

After a few more back-and-forths, she finally asked, “Why do you care so much?”

Hmmmm…she had a point. I had to take a breath and dig deep into my psyche to remember something I’d learned in therapy, and that is that Maddie doesn’t have the same needs that I do or even that I think she ought to.

When the sixth grade dance was approaching last year, my son initially didn’t want to go. It was his first dance ever, and I’m sure the unknowns were intimidating. But he also recognized that if he didn’t, he would be on the outside when all the other kids talked about it afterwards. He could imagine a fun evening, too, and the possibility of regret. He ended up going and having a great time.

But I remembered that things are different for Maddie. First of all, her classmates don’t seem to rehash recent events. The day after the basketball game, for example, nobody even mentioned it. She never knows who’s going where during vacation or on the weekend, or what anybody did last night. They just don’t talk about that stuff.

And even if they did, she doesn’t have the same sensitivity to social situations, for better or worse. I can’t ever remember a time when she regretted not doing something because all the other kids apparently had a good time.

So I had to take a few more breaths and try to let it go. She truly doesn’t care about the dance. I needed to stop caring myself. She is not me. She’s not even her brother. Even though I’m confident she would have enjoyed dance, I can also see that she’s perfectly happy doing what’s she’s doing. She spent some time playing Minecraft, and now she’s having some quality time with her dad. And then tomorrow she’ll be up for a good time with her favorite person in the whole world. How can I argue with that?

The Basketball Game

“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.

A Normal Conversation

We have a sweet, dark gray tabby named Daisy who lives almost exclusively in Maddie’s bedroom. She used to roam the house more, but then we got Ginger, a cat-obsessed Labradoodle, and Daisy decided Maddie’s room, with the door closed, would be her safe room. She does go outside for brief periods, but does so almost always via a window in Maddie’s room.

Daisy has also come up with a couple different ways to make known her desire to come inside. Sometimes she stands on the back of the outdoor couch that sits outside the kids’ rooms and claws a screen. If that doesn’t work, she’ll peer into the tiny square pane in the bottom of the French doors leading into the master bedroom. I see her tiny face silently staring inside, or I might see one of the dogs sitting motionless inside, staring at something so enthralling outside that it could only be a cat.

Tonight I was about to let our dog Ginger out those French doors until I realized what the draw was. There was little Daisy and her sweet face peering in. I thought it was only fair to let Daisy in, rather then setting the dogs on her. So I knocked on Maddie’s door.

“Maddie,” I said. To my surprise, she answered right away.

“Please let Daisy in,” I said.

“Okay, give me a second,” she answered.

I could not believe my ears. Not only did I not have to say her name five times before she responded, but then she acknowledged my request AND let me know she needed a minute. What? Such a mundane exchange. Really. Who would think anything of that? Well, if you were Maddie’s mom, you would have been blown away too.

I returned to my room and waited. Not surprisingly, several minutes went by and Daisy was still looking longingly into the window. I fully expected that brief conversation to be the end of it. I was right. I had to remind her twice before she let the cat in. Eventually she did, of course, and I’m sure, as she does every night, Daisy settled down on the pillow right next to Maddie’s head.

These are the moments I hold onto. Tiny moments like this. Tiny but meaningful. Maybe only meaningful for that single moment, but that has to be enough for now. Inhale the joy, exhale the stress. Breathe in the good, exhale the difficult. Embrace the positive, and well, embrace the negative too, I guess.

 

 

 

 

 

 

 

Happy ****ing New Year

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.