Life As I Know It

Yesterday was such a long day. I think I might have aged a year in 14 hours. I’m certain a few gray hairs have appeared and my frown lines have become more pronounced since yesterday morning. It was just one of those days that needed to END. I needed a fresh start today. Fortunately every day is an opportunity for a fresh start, and every day I take it.

After I got Maddie off to school yesterday, after several hours of dealing with her opposition to that idea, I was exhausted in ever way. I was immobile for most of the afternoon, lacking the energy and desire to see anybody or do anything. For a moment I thought a little retail therapy sounded good, but I was too depressed to go anywhere. So I went home and did nothing. Well, I wrote a blog entry and watched an episode of The Voice. Good choice on my part for a number of reasons, including the fact that writing and watching On Demand didn’t cost anything.

Soon it was time to pick up my son, and not long after that Maddie arrived home in the cab. I was dreading the afternoon all day. I knew she would have quite a bit to accomplish because she hadn’t finished some of her work from the night before. And I was right. She had a pretty hefty math assignment and science to complete. Plus a shower.

Ever since homework became part of our lives when Maddie was in first grade, I have spent some of the day dreading it. And the moment I see her after school, it is on my mind. I always give her a warm welcome home and ask her about her day, but then I dive into the homework questions. And we make a plan. Or rather, I make a plan.

So we dove in around 4:00 and nearly three hours later I was still sitting with her while she did her math. She needed a little help with a couple problems, but mostly she needed help staying on track. She’s been better about that lately, but yesterday everything was a challenge for her, so I just gave in to the idea of sitting with her to ensure success.

I did not, however, anticipate how long it would take her. There were an awful lot of problems to do, She was also very unfocused. I spent a lot of energy helping her be productive. It was hard. I was patient. It was long. I got tired. When she finally finished her math, it was time for a little science work, but she also had a long overdue shower to take, and I sent her off to do that.

And then the shit hit the fan. She decided she wanted to watch the newest episode of The Flash. But it was too late to both take a shower and watch the show. By that time I had given up on the science; she could do it the following day during Academic Workshop (study hall). She would have to stay up late in order to watch the show.

“Absolutely not,” I said.

“Why not?”

“Well, you skipped school yesterday and missed half the day today. You do not get special privileges unless you earn them. You don’t even have your usual privileges,” I explained calmly.

And then I saw it. Her body stiffened, and the expression on her face changed. Her eyes looked determined and her lips smirked. Everything about her said, “Oh YEAH?”

“I really want to watch The Flash,” she insisted.

“I’m sorry, but the answer is not tonight.

“Why not?”

“I already told you why not,” I said, and then repeated my explanation from a moment before.

Maddie was not giving up, but instead becoming increasingly determined. She would not budge. She looked me straight in the eye, challenging me to defy her wishes. How I wanted to just say, “Oh, forget it, go ahead.” That would have been so easy and relaxing. She could go do her thing and I could do mine, and everybody wins!

Except everybody doesn’t win. She has to understand that her choices have natural consequences. If you haven’t finished the things you are required to do, you will not have time for fun. That’s just the way it is. I have said that a thousand times. But as we’ve learned, her mind doesn’t work that way.

“But why?” she asked over and over. I explained that special privileges are earned, and staying up late is a special privilege that she had definitely not earned.

She was desperate. She wanted to watch The Flash so badly. “How about if I stay up late tonight and then get up in the morning? Then you’ll see I can do it.”

Stupidly I have fallen for this logic more than once. It sounds wonderful, but it’s a trap. It NEVER happens that way. Why do the work when the reward is already in your pocket? I got my reward, so see ya!

But last night I remained strong. I would not give in. But she’s a tough nut to crack. She wouldn’t give in either, and she is the most determined person you could ever meet in a moment like that. She followed me around the house, looking me in the eye, challenging me. She wouldn’t let me out of my room, blocking each door as I tried to exit. She announced she would do it all night if need be. And you know what? She is perfectly capable of that. I could feel panic start to set in (What am I supposed to do now?) but I worked to retain my calm exterior. I was not going to give up or give in or be upset. I would stay firm and strong and calm.

“I’m done with this conversation,” I announced. “I’m not going to answer you anymore if you talk to me about it.” I had to do my part to put this issue to rest.

But the conversation wouldn’t stop. I kept repeating that I was done, and she kept going. She was going to WIN.

Finally, Rachel (my niece) said, “I’m going to the store. Wanna come with me?”

Oh thank you, my dear Rachel! Something had to give here. Somehow this needed to stop. I was trying to extricate myself, but Maddie wouldn’t allow it until that moment.

We were only gone 15 minutes, but it was a very valuable 15 minutes. I had been trying to leave, but wasn’t able. It was a good instinct. When I got home, Maddie was calm and remorseful.

I looked at the clock. We had spent an hour and 15 minutes in this cycle of questions and explanations. I pointed that out. She could have accomplished so much during that time or even gotten some sleep. She announced she was now ready to shower, but then it was late, so I suggested she just get into bed.

“I just want to sit here and mope,” she said.

“What are you feeling right now?” I asked.

“Guilt. Regret. Sadness,” she answered. Well, that’s something. Emotions identified and communicated! Nicely done.

“Do you know what you do when you have feelings like that?”

“No.”

“Well, when you have guilt and regret, you think about what you did. You think I don’t want to feel like that again, so I won’t do that again.”

“Oh.” News to her, as usual.

“Let’s start fresh tomorrow,” I suggested. “We’ll just start over. If you’re awesome all day, starting right now, and you get up in the morning on time and do your homework and shower without any arguing, you can stay up a little late to watch The Flash.”

I have learned that if she has already lost any chance at a reward, there is no more leverage. I try to keep that in mind. There has got to be something fairly immediate at stake, and even then, as we know, the outcome is not guaranteed. Not even a little bit.

“Okay,” she said. I hugged her and we talked and I said goodnight.

It was a hell of a day. I am glad it’s was over. I wish I could be optimistic that tomorrow will be a better day, but reality and experience tell me it’s a crap shoot. It seems to me that a third morning in a row like this can’t possibly happen. I’m not sure I could take it. Maybe I would give up. I can’t do this forever. I can’t even do it the rest of the year. And I’m not sure even another day would be survivable. I might need to take my puppy and run away, as I sometimes think to myself.

But I won’t. I’ll be here. I will get up in the morning and give it a try. And hope for the best, or at least something better than the worst.

A Miracle Has Occurred, But I Still Feel Terrible

Somehow or other Maddie changed her mind and went to school. I was about to say “I got her to go to school” but we all know ultimately Maddie is the one in charge. It was three hours into the school day by the time we left, but a half day is better than no day at all.

After a day of trying to be zen about this whole thing yesterday, today I just didn’t have it in me. So I played hardball with Maddie. After I sent the cab driver on his way, I took away access to all electronics. She didn’t like that. I wouldn’t engage in light conversation. “I’m not talking to you,” I said when she initiated small talk, trying to smooth things over. I even emailed the educational consultant to follow up on boarding schools, and she watched me do it. Today I’m feeling like I can’t do this anymore. Maybe somebody else can instead.

“Can I have my stuff back?” Maddie asked.

“No,” I laughed, incredulously. “You didn’t go to school.”

“Well, when can I get it back?”

“When you have gone to school.”

“What if I go to school today?” she queried.

“Well, then I’ll give you something back. I’m leaving in three minutes,” I said, “to go to the chiropractor. If you’re ready to go in three minutes, I’ll take you to school instead. I’ll put your lunch together and then I’m leaving.” I was very matter-of-fact. I meant it. I wanted her to go to school so much, but I was done lobbying. Plus, even though I was perfectly willing to skip my appointment, it had to be for something as big as driving her to school.

So when she said she was almost ready, I sent off a quick text to Dr. Marc, canceling my appointment.

I love my chiropractor. He’s not your usual “crack, crack, see ya” kind of guy. An appointment with Dr. Marc lasts a whole hour and involves only deep massage along the spine (or whatever you need) and a few pops with that triangular adjusty thing. If you have jaw problems, like I did a few years ago after taking a baseball to the temple, he’ll press some points inside your mouth that make you want to run through the door like in a quick cartoon escape, but it works. He’s gentle and kind and has so much sympathy. Seeing Dr. Marc is a form of therapy in a way. I could have really used a visit today. But I gave it up for Maddie.

A couple weeks ago I was in a bad way. My upper right side, including my neck and shoulder, was in so much pain. I thought maybe I had a pinched nerve from sleeping wrong. When I gave Dr. Marc my explanation, he looked at me uncertainly, as if waiting for more information. “I’ve been under a lot of stress, too,” I added.

“That would explain it,” he said, nodding sympathetically. “You carry the world up here,” he observed as he manipulated the area above my shoulder blades. Boy, is that the truth. There is everything I experience, right up there on my shoulders. I’m hunched forward at the shoulders all of the time. Apparently it’s from a fight or flight response to stressors. That makes so much sense to me.

Some years ago I had the sensation of a knife going from my chest straight through to my back. “Stress,” diagnosed my doctor. But his only suggestion was, “You’ve got to find a way to deal with this.”

I still haven’t figured that out. Wouldn’t that be magical if I could just “deal with it”? Every day I try to “deal with it.”

So this morning when I was pulling out of the high school parking lot after watching Maddie stroll toward the office to check in, I didn’t feel some huge sense of relief. I was glad she was at school for half the day, but the weight of it all is still with me.  I wish the chiropractor could remove that weight permanently, but all he can do is try to relieve the pain from the weight I can’t seem to shake. He is not the magic answer. I don’t know what is.

I also don’t know why Maddie changed her mind today. I’m glad she did. All the moms I know hate making lunches for their kids. I hate making lunches for my kids. I’m tired of it. But I would make 100 lunches a day rather than deal with this in the morning. I woke Maddie up at 6:30 and spent the next 3 1/2 hours trying to get her to school. This afternoon we’ll embark on homework and the shower that was supposed to happen yesterday. I hope she’s more cooperative, but I can’t count on that.

Deep breaths. Deep breaths. Life goes on. Deep breaths.

I Hate This Morning

Remember that roller coaster ride I described in great detail last week? Well, I’m back on it. Big time. And not the fun part.

Last night as I was getting all philosophical about Maddie and parenting and life in general, I felt a great sense of peace. And a tiny sense of accomplishment. That feeling is hard to come by as a parent. How did I do today? Am I doing a decent job of raising a human? Beats me! I guess I’ll find out eventually.

Still, last night I felt so good about what I would oddly call a successful day. Normally I would say a successful day involves everybody going to school. At 7:45 in the morning, when both kids have departed, I feel both triumphant and completely relieved. It’s time for a huge exhale.

Yesterday, though, I redefined success, I suppose. I remained calm. I kept my cool. I retained my perspective. Yes, yesterday was all about perspective.

And then there was the clock thing. Even though Maddie didn’t finish most of what I’d asked her to do, I delighted in her sudden awareness of the clock. Small victories.

Today? Forget it. Maddie said no again. For no reason. I’m not going to school, she decided. And there you have it.

I could feel the tension rising in my chest. Both tears of frustration and a sense of rage started boiling up inside me. Deep breaths have been required this morning. Lots of them. It is so hard not to feel defeated in the most literal sense of the word. Defeated and deflated: those are the words that come to mind in moments like this.

I brought up the boarding school thing again. It’s definitely not on Maddie’s mind on a morning like this. She hugged her cat and pretended not to hear me. But I know she did. Her message was basically “talk to the hand.” I guess her idea is that if she doesn’t make eye contact, I must assume the message isn’t getting through. But I know she heard me.

It was all I could do to refrain from yelling. I’m that mad. Again with the deep breaths.

But then I had a little epiphany. I keep bringing up boarding school as if I’ll be making the choice for her. I will be making that choice in a way. But really it’s her choices that are leading the way.

“Maddie, every time you cut school, you are getting one step closer to boarding school,” I said. “If you can’t get up and go to school, you will have to live at school. And each time you stay home without permission, you are making a choice.”

I want her to know she’s in control of this situation. She has the power to stay here and continue at what is really a lovely school. Or she can send the message that she’s willing to give that up and move away.

I reluctantly admit I’m somewhat ambivalent about this prospect. I feel a knife in my heart when I think of Maddie not living here. Who will take care of her when she’s sick? Who will hug her every night and every morning and throughout the day and tell her how wonderful she is? That’s my job, and I’m good at it!

But the truth is, it would be such a relief. My mornings wouldn’t begin with a deep feeling of anxiety and dread. I could spend more of my energy on things I enjoy. Parenting Maddie is exhausting and stressful. What if I handed that off to somebody who’s both more qualified for this and less emotionally invested? The deep breathing might involve more inhaling joy than exhaling pain.

There is hope, though, at least for the immediate future.

“I want Dad to wake me up,” Maddie suggested.

“Every morning?”

“Yes.”

That would be the gift of a lifetime: handing off this relentlessly stressful task to somebody else. Maddie’s dynamic with Jake is so different. She loves to take on a character, and he magically knows how to interact with her that way. I’m baffled by this scenario, and she knows it.

Also, he doesn’t get up each morning with 15 years of frustration with her on his shoulders and in his brain, waiting to spring forth at the first hint that she might refuse to cooperate. For me, each moment is fraught with the pain of all those years of experience. She has been, after all, my 24/7 job since the day she was born.

At my request, he has made an attempt to get her moving. Better late than not at all. She wasn’t responsive. We have passed the point of decision, and it’s nearly impossible to redirect now. Even for Jake. I’m not optimistic.

So what do I do? I haven’t cried today. You know I don’t cry much at all. There aren’t any tears, but my eyes have that burning, heavy feeling you get when you cry. My head hurts. I feel the heaviness in my face, too, my mouth turned down in a sad frown. Maybe I really am crying–on the inside. It feels like that.

I am working on letting this go, as I so graciously and effortlessly (well, not really) did yesterday. The idea that Maddie is making the choice, and removing the burden from myself, sounds so smart and wise and evolved. I want to hold onto that. I’m not sure how to do it, though.

Because the truth is, at some point I have to decide that she has made her choice. I will have to find the school for her. I will have to make that happen. It’s not quite as easy as it sounds, this letting go. Because I’m still the mom. And she’s still the child.

I’m breathing deeply. I’m waiting. I’m hoping, but I’m not really that hopeful in the moment. This is going to be a long day.

A New Addition

The big news around here these days is that we have an additional member of the household. And, yes, she is human. (Two dogs and two cats is enough, don’t you think?) It’s been a few months in the making, and the day has finally arrived. Our lives are enhanced with the fifth member of our family!

My niece, Rachel, has to come live with us while she transitions from the Central Coast to the Bay Area. She’s a fabulous 22-year-old young lady whom I have adored since the moment it was announced that she was coming to this earth. Of course I’d love her to stay here forever, but I know this is just stopping point on her way to bigger and better things.

Among all the many benefits of having Rachel here, it has occurred to me that this might have a positive effect on our kids’ behavior. My son probably won’t want her to think he’s a jerk, so maybe his teenager-y behavior will drop a notch or two. A friend mentioned Maddie might respond the same way. After all, Rachel and her two siblings have long been the object of my kids’ admiration. They are a trio of fun, lively, loving people. Excellent choices of people to emulate.

But I know better. Maddie loves Rachel and is so happy to have her here. “It’ll be like having a sister!” she recently told me. “And I’ve always wanted a sister.”

Well, I guess that’s truer than I might have originally thought. Do sisters try change their behavior to impress each other? Not in my experience. I have two sisters and don’t ever remember thinking about that!

While Maddie is interested in spending time with Rachel, and wants to share her imaginative costumes and other things that interest her, changing her own behavior just isn’t something that would occur to Maddie. She’s very much a “take-it-or-leave-it” kind of person, for better or for worse.

Rachel arrived yesterday afternoon. Instead of retreating to her room, Maddie accompanied Rachel, me, and the dogs to my friend’s house around the corner for puppy play time. That’s new. She also elected to hang out with us, eat dinner, and help Rachel with a project, all instead of her usual Minecraft time. What a wonderful change! Maddie was engaged and happy, and still cooperative at bed time.

But today we are back to normal. I’m not one bit surprised that Maddie is in bed instead of in the cab on her way to school. I sort of expected this yesterday because of the Halloween festivities. One big night and she can be wiped out for days to follow. So here we are again on a Tuesday (I now hate Tuesdays too), and Maddie simply said “No” when it came time to get up. No “I’m tired” or “I need some more sleep.” Just a flat refusal with no explanation. She has chosen to stay home. The pronouncement has been made. End of story.

Does Maddie care what Rachel will think about that? Apparently not. Of course, Rachel doesn’t actually have a judgment about Maddie. She loves Maddie just as she is. Maybe Maddie knows that. But really I think that whole concept of how she’s perceived by other people isn’t part of her make-up, again for better or for worse.

Maybe next time I should point this out. “Don’t you want Rachel to see what a good kid you are?” I could say. Now that I see those words typed out, I see how ridiculous the concept is. Maddie really just won’t care. Maddie’s initials are MEH. Who knew how prophetic those letters would become? If “meh” isn’t her motto, I don’t know what is. (Okay, once she said it was “Toast is life,” but I think “meh” covers more territory.)

I still have a tiny bit of hope that somehow Rachel will have a positive influence on Maddie. Maybe it won’t be quite so calculated. Maybe Maddie will simply rise up. Maybe there will be something in Rachel that Maddie wants to emulate. Or, more likely, Maddie’s interest in spending time with Rachel will bring her out of her room a bit more. And maybe more social time will somehow help Maddie develop. Who knows.

Maybe Rachel just being her wonderful self will give Maddie some extra confidence, some inspiration, and most certainly a bit more love.

One of the great things about family is how (if you’re lucky, as I am) they get you. That has certainly been true for my kids. Nobody has treated my kids with more compassion and a deep understanding and appreciation than our family.

What somebody else might see as a quirk or a challenge, they see as a gift, something to be celebrated.

So maybe that’s what we’ll all get out of having Rachel around! Just another layer of love and appreciation.

I can’t say with a straight face that I’m not a little excited about shopping with my niece, getting our nails done, planning and preparing meals together, etc. She’s going to be a great pal to have around, although my wish for her is to build a group of friends her age–even though I like to consider myself young (i.e. immature) for my age.

However this all turns out, I know that having Rachel around for awhile is a privilege. We will make the most of it!

Today I Chose to Be Happy

Today Maddie wouldn’t go to school. And this time I didn’t care. I really didn’t.

Well, at first I was kind of miffed, and then I decided to let it go. It’s amazing what letting things go can do for you!

I was in a good mood all day. I wasn’t mad at Maddie. She wasn’t mad at me. I wasn’t mad at myself.

Maddie even did all the things I asked of her with little prodding. She did her homework while I was out, made herself dinner, and took a shower on her own. She even remembered to brush her hair afterwards. That’s new!

I played a card game with my kids tonight. We hugged and laughed and were happy together. I enjoyed my children. Isn’t that nice?

Tomorrow is likely to be fine in the school department. It’ll be Wednesday, so Maddie has something to look forward to. I expect a relatively easy (for us, anyway) morning.

It’s one of those times that I feel good about my parenting. I definitely had a choice to make this morning. I could have pushed Maddie to go to school, an effort that most likely would have been futile. And I would have ended up frustrated and angry and exhausted and stressed out. But I chose the zen approach–go with the flow. And guess what! It turns out the flow is kind of pleasant.

And really that’s not a surprise. I’m generally a go-with-the-flow kind of person. I often say I’m flexible to a fault. But when it comes to parenting, there are times when you have to stick to your guns. It’s harder than giving in, but it must be done.

On the other hand, sometimes it’s okay to give in. Not just okay, but the right thing to do. I wasn’t giving in to Maddie, though. I was giving in to the situation. Giving over to my life as it is. Accepting things, really.

And it was liberating.

Life Lesson #27, I guess.

My Life, The Roller Coaster Ride

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

Such is today.

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

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

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

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

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

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

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

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

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

“That’s not enough sleep,” she says.

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

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

“No, not really.”

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

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

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

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

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

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

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

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

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

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

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

Finally I asked, “Are you OK?”

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

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

The Comparison Trap

Recently I learned of another blog by the mother of not one, but two autistic children. I believe they are both in the Asperger’s realm. The particular entry I came upon addressed the problem of comparing our children with others.

My first reaction was, “Oh, no! This blog is better than mine!”

Ironic, no?

Once I got over the ideas that (1) it’s not surprising that I’m not the best blogger in the universe, (2) I might learn something from this woman, and (3) she is right, I began to percolate on the original premise: Comparing our kids is counterproductive.

And this doesn’t apply only to those of us with special needs kids. Nor does it apply only to our kids or our parenting. Comparing is a bumpy road fraught with dangerous pitfalls, but it sure is an easy path to embark upon for some reason. Human nature, I guess. And, I suppose, American culture, which puts the utmost emphasis on working and achieving.

What do you do?” Isn’t that the question everybody asks when shaking the hand of a new acquaintance? I dumped that question a long time ago, preferring to get to that topic down the road a bit. But I have to admit, it IS still the first thing that crosses my mind. I just made a conscious choice to stifle it. But I practically have to stuff a sock in my mouth to suppress the urge.

I don’t know about you, but where I live (and, since many of you are my friends, where you live too), kids are always doing, doing, doing. They’re playing competitive soccer, taking voice lessons, learning Spanish on the side, going to a math tutor not to stay caught up, but to get ahead. It’s a constant state of go. Who you are is largely defined by what you do.

So when you have a kid who’s behind everyone else in many ways, who’d rather sit around and play Minecraft with her online friends, whose only sport developed in middle school in the form of lunchtime basketball (defense only! no shooting!), who is bright but doesn’t especially care about school, who isn’t likely headed to Cal or Stanford and maybe not college at all, how do you define your child? How do you rank your parenting?

It’s really quite simple. You don’t define or rank or compare. You appreciate your children for their unique attributes. You guide your children toward kindness and compassion above all else. You allow your kids to flourish in whatever way they wish, whether it’s on the field, in the classroom, or in a sea of specialty duct tape.

If I were to define Maddie, it would be by her kindhearted nature, her ability to approach anybody with full confidence and no fear, her intense interests, her compassion. What is Maddie? She’s not an athlete, a scholar, an artist. She’s a wonderful human being, that’s what she is. What she chooses to do in her spare time now, and whatever she chooses to do with herself in the future, she will still be a wonderful human being. She will be a wonderful human being who happens to garden, or teach, or write, or do research. She is a person who is, and happens to do.

I can say that now because even thought it’s simple to make this choice, simple doesn’t always mean easy.

It was especially challenging not to compare Maddie to the other kids when she was young. My mothers’ group got together weekly, beginning when Maddie was about six weeks old, and within a few months it became clear that other kids were following the anticipated milestone schedule and she just wasn’t. I wasn’t alarmed at all, but it wasn’t super fun to participate in the conversations about all the cute things the other babies were saying while Maddie was only screaming. The others were sitting up or crawling, and Maddie was toppling over, blank-faced. I would joke about it, as is my way, but it didn’t feel very good to be left out of that conversation in a meaningful way.

I still suffer from that feeling of isolation in a way, often because of the comparison trap. I’ve written about this before: When everybody is talking about what’s going on at our local high school, or the dating thing, or the sports teams their kids are on, and (soon, I’m sure) where everybody will be applying to college, I can’t help but think to myself, Maddie is different, and feel a little sad about it. Sad for myself, I guess, because I’m missing out on certain aspects of life with her, and sad about how disconnected I feel in that moment. When the conversation begins to veer into that territory, and all the women begin contributing enthusiastically, I envision myself shrinking away from them all. That’s how it feels. And it’s all because in my head, I’m comparing our experiences, comparing our children. My child is different. My experience is different. And for a moment that difference is painful.

But that’s my own problem.

And I know it’s my problem because I have another kid with whom my parenting experience is quite the opposite. He was exceedingly verbal at a young age, and he walked before he was 11 months old. He has played on a few sports teams and done fine, although he is not a committed athlete. He’d rather bike around with his friends and play pick-up games of soccer and basketball. He’s very organized, self-motivated, and bright. He once got a perfect math score on the annual achievement test, something I ended up being kind of bummed about because from then on he would always expect himself to live up to that achievement, and be disappointed in his performance even if he only missed a single question. And that has been his experience. He also was the last third-grader standing in the annual school spelling bee, just short of making the next round.

So even though he doesn’t play competitive sports and he only took drum lessons for a year, he’s an achiever. And sometimes I get caught up in that. When he quit playing soccer the first time around and gave up on drum lessons, I was disappointed and maybe even a little worried. Would he ever stick with anything? Why didn’t he want to play soccer and play an instrument, when all his friends are athletes and/or musicians? When he signed up for Little League for the first time at the age of 10, it felt like a lost cause because all the other boys had been playing since t-ball days. He was so far behind! How could he compete?

That first season had a rough beginning to be sure, but it reminded me of something very important, that who he is, is more important than what he does. He didn’t get a single hit until the last game of the season (mainly because he wasn’t swinging), but he kept on trying. He was a good sport. He made friends. He had grit. He had a good time and was willing to learn. The coaches liked his attitude. It wasn’t about his achievement–or lack thereof–but the kind of person he was and is becoming through all of these experiences.

And the same goes for me as a parent. There are so many occasions when I feel like a failure. I have met other parents along the way who chart like there’s no tomorrow, who work for hours each day with their young children doing the prescribed OT exercises that I was too tired to do, who religiously work new foods into their choosy kid’s repertoire, and whose kids are organized, well-behaved, and well-dressed because of those efforts. Do I do what they do? And do my kids measure up, and if not, is it my fault?

In the immortal words of Maddie, who cares?

My adult life, my parenting experience, is also a journey during which I am still becoming. I’m changing and evolving and learning and growing. I am figuring out what’s important to me. I’m discovering my own gifts, and dismissing, over time, an ideal that isn’t worth pursuing.

I, too, was an achiever as a child. What I accomplished was important to me.

But having any child, and most especially a special needs child, turns that idea upside down because you suddenly have so little control over anything quantifiable. How do you judge your achievement as a parent? How do you know if you’ve done well when you aren’t so focused on the doing, but rather on the being?

I guess that’s the good news: You really can’t measure that. So I stop. I stop worrying about what the other kids are doing, what the other parents are doing and how they’re doing it. Or at least I try. I am striving to be a better person, to focus on what matters, to be an example to my kids. I hope I am teaching them kindness and compassion, both for themselves and others. I hope I am showing them how to be a devoted and generous friend. I hope they are learning that who they are matters more than what they do. Actually, I think I’ve been learning that from Maddie all along.

Why I Love Weekends

This seems like kind of a stupid topic. I mean, everybody loves the weekend. Don’t some of us live for it? No school, no work. Time to sleep in, get some rest, maybe catch a ball game or a movie, spend time with your kids, go on a date with your spouse, clean out the garage, whatever! All the things you want to do during the week but don’t have time for.

I love all that stuff, but the best part for me is not having to get mad at or frustrated with Maddie. I’m sure I’ve said this before, but she’s a really lovely person. She’s happy, fun, optimistic, engaging, and sweet. There is none of the typical teenage angst so many of my friends talk about these days. No drama for the sake of drama, no slamming doors, no “I hate you, Mom!”

The hard part with Maddie is getting her to do something she doesn’t want to do. That’s really the most pressing problem with her. What I dislike most about weekdays is the proportion of time I spend in conflict with her. I don’t want arguing over what she’s supposed to be doing–and her refusing to do it–to be the primary way in which we relate to each other.

So on the weekends, I just let her be for the most part. There might be homework and most certainly a shower, and I might have to fight her over those, but at least the sense of urgency isn’t there as long as we don’t wait until Sunday night to address them. Then she’s happy as can be, and so am I. It is so relaxing to wake up in the morning without dread about the day to come.

A few years ago, my son had been talking for some time about making a trip to Washington, DC. I don’t know why an eight-year-old boy would choose a historical, educational sight-seeing trip for a vacation spot, but he did. And this wasn’t a trip that Maddie would have found remotely interesting. A whole lot of walking around museums and historical sights, forget it! She likes Disneyland.

So we decided to split up for spring break. The guys went to DC and Maddie and I went to Disneyland for what ended up being some of the best five days of my life.

We had five days with no agenda except for whatever Maddie wanted to do. I didn’t care what time we got up, how long we spent in the park, what time we came back, which rides we went on and how many times. And with no other kid involved, there really was no negotiation of any kind required. It was all about Maddie. And it was GREAT. I got to enjoy all the wonderful aspects of my child without a single issue. Not one.

And one of the wonderful aspects of Maddie is she knows how to have a good time. It’s kind of hard not to have a good time at Disneyland, but there she is in her element.

We went to Disneyland a number of times when the kids were little. The last time we all went as a family, the kids were six and eight and it was kind of a disaster. It was February, and it was cold and pouring down rain, for one thing. It’s never cold and rainy in Southern California, is it? Well, it was. Just for that week.

And our son had the flu.

And, it turns out, he really doesn’t like rides. When he was really young and only able to go on the kiddie rides, it was great. But then he got to the age where the kiddie rides are lame and anything else is too scary. So amusement parks are out.

Back then we would stay in the Grand Californian, a bit of a splurge but the perfect place to stay when nap times are required because it’s actually connected to California Adventure Park. But this time, with just two of us, when I went to make the reservation, the cost seemed unjustified, so I settled on a nearby hotel called the Candy Cane Inn. It’s charming but very plain. Clean and uncluttered. No frills but perfectly comfortable.

And naturally, they have bowls of candy canes sitting around for their patrons. Those tiny ones that come in a long strip, all held together by the packaging. Maddie decided she ought to share them with the other kids at Disneyland, so the first morning she loaded up her pockets with tiny candy canes, and we headed to the park.

People are funny. There was Maddie, an 11-year-old girl in goofy clothes and glasses, offering candy canes to random kids she saw. She would bend down to their level, reach into her pocket, and sweetly offer the candy. The kids were mostly excited, and some parents were grateful if not a bit confused, but others looked suspicious and walked away. Maddie’s spirit was undeterred. She found so much joy in handing out the candy canes she’d swiped from the hotel lobby. And in the spirit of the trip, I just let her do it. I just stood back and watched my wonderful kid being her wonderful self without restriction.

We also enjoyed a lot of churros. Disneyland has the best churros.

And so, this weekend, a three-day one this time, I am content to let my kid be her awesome kid self. She can make duct tape swords, or work on her Halloween costume, or watch anime, or play Minecraft, or whatever. It would probably serve her well if I made her do some chores or something. I might ask her to unload the dishwasher later. She doesn’t mind that too much. But for now I am going to enjoy the days when I don’t have to freak out in the morning over a late rise, or a refusal to get up, or, if I’m really lucky, the mad dash to meet the cab.

I hug her a lot and tell her how awesome she is. I throw that word awesome around pretty loosely, having grown up in the 80s and gone to college among a lot of surfers, but “awesome” really fits here. She does inspire awe with her optimistic and generous spirit and her good nature. Everyone should be so lucky to know, and be in awe of, somebody like Maddie.

She Remembers

One of Maddie’s gifts is her nearly infallible memory. It was evident when she was a toddler and would wipe the floor with me playing that game where you turn over cards to find matches. I never beat her, not once. Occasionally I would come close to a tie, but mostly the scores would be so lopsided it was ridiculous. Thirty-two pairs to four, perhaps. And I was trying! I really was!

And then there was the USA map puzzle, which she mastered before she could really talk.

When we were in the car, she would recognize the neighborhood we were in. “Lily’s house!” she would shout, even though were a couple streets away. She was only two.

This weekend I decided to bite the bullet and drive her to my sister’s house. I love being there, and I’m so happy to get the cousins/best friends together, but traffic can be a bear. A 45-minute drive might be twice that. Each way. You never know. Sure enough, about half way there, traffic came to a dead stop.

“I know Grammy takes a different way sometimes, but I don’t know the way,” I thought aloud.

“Take San Antonio Road,” said Maddie. “It’s by the dump. You’ll be on a road parallel to the freeway for a few miles and then get back on.”

“That’s what Grammy does?” I asked.

“Well, she did it once.”

“How do you remember that, Maddie?” I asked in amazement. “Most people wouldn’t even notice.”

“Well, other people aren’t as curious as I am,” she said.

So true. She’s remarkably observant, and those observations permanently reside in that brain of hers. It’s astonishing.

She continued giving me back-street directions. If only she could drive, she would know her way around two counties. Maybe someday.

Recently she had a science test. Her teacher had sent out an email to all the parents, letting us know that he had provided a 3X5 card to each student on which they could take notes for the upcoming test. I asked Maddie if she needed help preparing her notes.

“I’m not doing that,” she replied. “I don’t need to.”

“Well, Maddie, as you get further along in school, there will be more and more information and it’ll become increasingly complicated. I think you should do it.”

“I’ll remember. I’m not doing it.”

The conversation fizzled out, and in my usual way, I forgot about it. A few days later, I remembered, but it was too late for the test.

“How did your science test go?” I asked.

“Fine,” she answered. She hadn’t gotten the results yet.

A couple weeks later, I inquired about the results.

Calmly Maddie reported, “Well there were 40 points. I got 38.”

“Okay,” I laughed. “I guess you were right.”

So what could I say then? She has never studied for a test. Ever. She gets A’s on math and science tests. Always. She might not get an A in the class, but that’s because she isn’t consistent with her homework. She just doesn’t necessarily do it. I don’t know if she’s doing her homework from one night to the next. Maybe her grades will be good. Maybe they won’t.

But I know for sure she’s learning. I remember memorizing facts for tests and then two days later I couldn’t remember much, and today I can’t remember any of it. She doesn’t study and she remembers everything! She knows all kinds of plants and trees and related facts. She knows about the weather and space. She has an encyclopedic knowledge of the complicated anime show she watches.

She’s incredible.

As challenging as she can be at times, she is so much more than her diagnosis. She has some wonderful gifts. Her memory is one of them. And thank goodness for that!

That One Time I Really Screwed Up

I try not to have regrets. My philosophy is I am grateful for the life I have, and everything that has ever happened to me has led me here, so I shouldn’t regret any of it. All my successes and failures, all the joy and all the sadness, have led me here to this moment. So why would I change anything?

But here’s something I really wish I had done differently, very very differently. And that’s because my mistake cost us probably three years of services at school. I pass this on to any of you with a special needs child. Please learn from my mistake.

Each and every year, from kindergarten to through fifth grade, I would be called in for an SST meeting for Maddie. SST stands for Student Study Team. The child’s teacher is the one who calls for this meeting, and the participants are everyone who would be involved in an IEP or Individualized Education Plan meeting (that’s an official meeting to discuss the goals for the student for the year and what services will be provided and which accommodations will be made). The participants typically include the current teacher, the principal, the school psychologist, the school counselor, maybe the speech teacher and even the school’s occupational therapist. If there is an issue with academics or behavior that is not being properly addressed through other avenues, this is an opportunity for everyone at school who can help (and the parents) to brainstorm and make a plan.

Parents are invited, but if they don’t attend, the meeting will happen anyway. And each and every year I went. And each and every year we had the same discussion: why does Maddie have trouble getting work done and what are we going to do about it? Often everyone would look at me as if I had some magical answer. I looked at them an shrugged. As if! Aren’t they the experts? Had they not, in all their combined years of teaching children, ever encountered a kid like Maddie? Much to my frustration, it sure seemed as though they hadn’t.

And each and every year I left that meeting having done a heroic job of holding in the tears. I usually made it to my car before I let them flow. And they weren’t tears of joy. One particularly difficult meeting took place when Maddie was in second grade. The head of the special ed department, a very experienced and well-respected German woman who had actually started the program at this school decades before, used words like “odd” and “stubborn” to describe my child. It was terrible. Isn’t she supposed to have a special knowledge of and compassion for kids like mine? Didn’t she realize that this stubbornness, while undeniable, was a symptom of a larger problem and not just the behavior of a defiant child? I pointed that out every year, but nobody seemed to get it.

And this is at a school that’s known for its special services. It’s a public school, though, and even thought it’s exceptional in many ways, it has limited resources for kids like mine. The kids who receive services are typically either struggling terribly in math or reading, or have more severe cognitive delays. Maddie always tested very well and was clearly bright. But her varying performance day to day was actually a detriment to our cause: because on some days she was so capable, it seemed to everyone that she ought to be just as capable every other day as well. She must just be stubborn. She was stubborn, indeed, but at least I could recognize the source of her inflexibility at that time was the stress she experienced just trying to cope with a normal school day. She was unequipped for the rapid transitions that occurred each day, and the social requirements were far beyond her development.

In third grade, Maddie had a teacher that was new to the school. She had been teaching for over a decade, however, and was the first teacher to say, “Let’s get this kid assessed. She needs help.” She might have even used the word “ridiculous” in reference to the lack of services Maddie was receiving.

So after that year’s SST, the school began the assessment process. The school psychologist performed a number of tests to make her own evaluation, and she gave questionnaires to the parents and the teacher that covered a wide variety of behaviors. The goal was to identify a particular problem area that might qualify the child for services.

After several weeks, we reconvened to go over the results. (Keep in mind, this was a year before we had an autism diagnosis from her psychologist.)

The big reveal: She did not qualify for services. Her speech was fine (and a speech issue is usually a requirement for most services). And there was no diagnosis of autism. And that was because of me and me alone.

It turns out the questionnaires given to the psychologist, the teacher, and parents all have to match up reasonably well. If one person reports a very different set of behaviors, the other two questionnaires don’t hold up. And I was that one person.

I was heartbroken. We walked out of that meeting with no more help, no more answers, no more anything than we had when we walked in, and it was all my fault. Talk about regrets.

I think I was just so used to my own kid that some of the behaviors that others saw as outside of the norm seemed kind of normal to me. What did I know? She was just Maddie. I don’t think I was misreporting anything on purpose. I don’t think I was trying to paint a picture of Maddie that was rosier than reality. But that’s exactly what I did. And so we continued on the same path for the next three years, with Maddie struggling to live up to her potential at school, and with teachers who wanted to help her but didn’t know how.

When Maddie started flailing terribly in sixth grade, I had another chance, and I took it. Maddie was going to be the neediest kid they’d ever seen. Well, that’s an exaggeration, but I most certainly made sure that if I was on the fence about something, I erred on the side of “problematic.” I was honest. Brutally honest. Honest with the school and honest with myself. And no way was I going to let that travesty happen again. Remarkably (haha, not really), this time my reporting was more on par with that of the teacher and psychologist.

As a result, she finally got what she had needed all along. And after a disastrous entry into middle school, Maddie began to flourish, or at least cope better than she had been. We ended up moving her to private school the following year, ironically only after we had finally got her situated properly at the public school. But I guess at that point I saw more clearly what she needed.

If there’s one thing I learned from our experience, it’s that any time I’m revealing any of Maddie’s challenges at school, my goal has to be to get her services. I’m not worried about how she comes off on paper, except when it comes to getting her services. I wish I had undersold her abilities rather than the opposite. It didn’t help anybody.

Perhaps I was in denial that first time. I don’t know. But because of what I consider to be one of my biggest failures as her mother, it is my mission to tell everybody I ever meet who has a young kid struggling at school, and who may be a candidate for extra help:

Do not overstate your kid’s abilities. Do not worry about the picture you are painting of your child. Your goal is to get the help they need. Forget trying to impress anybody. Forget making excuses in your head for why your kid is a certain way. And don’t be in denial yourself. Face the reality of your child, and fight fight fight for help. Expect and demand everything that could help your child.

I know I recently said I wasn’t in the business of giving advice. Look at this not so much as advice but wisdom gained from my own mistakes. I hope somebody else can learn from mine and save themselves some time.

Here’s another regret of mine: I wish I had been a squeaker wheel. That’s a topic for another time.