discipline

Back on the Horse

Chris Irvine, Parent CoachLeave a comment

It’s been several months since I’ve written. I’m not completely certain why I’ve had such a dry spell. Certainly life has continued to provide challenges, failures, successes, more questions–with or without answers–and even some adventure.

I have my suspicions, though.

This blog has been primarily about raising Maddie. And in the last several months, although she has provided many an interesting moment, there have been some other serious issues on my mind, and I didn’t want to necessarily write about them.

One is my health. I’m one of those people who always has an issue. Or two. Or three. It’s my back. And migraines. And terrible allergies. And unexplained and ongoing gut issues. And my ankles are messed up. And I have an allergy-related sleep apnea that makes me so tired all the time. I might sleep for ten hours and still feel exhausted all day. It sucks. I’m slowly trying to address all of those things, but I’ve found it hard to say, stick to a Pilates schedule when my stomach hurts so bad all the time. I’m finally figuring that one out, so maybe it’s time for those Pilates classes again. And yes, I have to do something like Pilates where I’m less likely to aggravate my ankle or back or hip or whatever. I have one of those bodies.

Second is my marriage. It’s a struggle sometimes. Statistics show a greater risk of divorce among couples with special needs children. Boy, ain’t that the truth. As if being parents isn’t hard enough, you throw in some extra challenges that nobody’s really equipped to deal with, and you’re rolling the dice.

Third is the other kid. Our son. He’s almost 14. He’s such a cool human being. I’ve been challenged with two completely opposite children, so parenting each one is an adventure, to put it nicely. H is intelligent, thoughtful, philosophical, and deep. Sounds awesome, right? Well, those qualities are admirable and desirable and all that good stuff, but parenting a kid like that is hard. He can argue you into a corner, for one thing. And he never ever gives up. While I admire his persistence, sometimes it’s just exhausting. More on him later, though.

Also my parents. I love my mom and dad. They live about 45 minutes from us. I wish they were closer. So I could help them. On the other hand, they’re not super great at accepting help (like mother, like daughter, I’m afraid). My dad has suffered from debilitating depression and anxiety for many years. My therapist thinks he’s agoraphobic, among other things. The word “bipolar” has reared its ugly head of late. I suspect he has some PTSD from a few episodes from his younger life. Whatever the diagnosis, and whatever the cause, he is severely disabled. He rarely leaves the house. It’s too stressful. Just riding in the car is often more than he can bear. He hasn’t driven for years even though he is only just turning 70. So I worry about my dad. But even more so, I worry for my mom. She is a doer. A worker. A creator. She likes to make things, so for several years she has been sewing items to sell at a local consignment store. Or two. Or three. She also refinishes furniture and makes things like framed chalkboards for kids’ rooms. She cooks up a storm, too. She recently completely re-landscaped their front yard so it’s more drought-friendly. She likes to be industrious. She has also spent her life without a lot of extra money, so when something needs doing, she does it, for the most part, rather than paying somebody else to do it. Every once in awhile, there is something beyond her scope (particularly since becoming permanently partially disabled some years ago because of chronic wrist pain in both arms) and she’ll have to hire somebody. But her go-to is “just do it.” How do a person who can’t do anything and a person who only wants to do things live together? Guess what? The doer, my mom, adjusts her life to suit the other. There is a lot of going nowhere. Particularly because Mom worries about what might happen when she’s gone. Dad’s just not reliably level-headed anymore. I want to help them so desperately, but it seems to be out of my hands. I want my dad to be well and, even if he can’t be well, I want my mom to have a life.

So I’ve been distracted, I guess. And I haven’t felt compelled, or maybe just comfortable, putting all this in writing. I don’t want to “expose” anyone. I also don’t want to make this blog a tribute to all my problems, and most of all I think some of this stuff is kind of private. At least the other parties involved might think so.

And then there’s Maddie. She’s still exactly Maddie. She’s at camp right now, the camp she absolutely lives for the rest of the year. When we were anticipating a New York-London trip we took last month, I asked her if she was excited. “Meh,” she said. “CAMP!” That pretty much sums up her experience of our trip (another blog or two will cover that). She just wanted to get it over with and go to camp. So right now I can rest easy knowing she’s in her happy place. She’s probably filthy and she probably has terrible B.O., but it’s out of my hands, and isn’t that a beautiful thing!

And before that, of course, the infamous school year (the actual “Year of Living Hopefully”) came to a close. More on that in another entry, too.

So today I’m back. I remember now that I can write and I like to write and I have something to say. A lot of somethings to say.

The story continues.

Stars Wars Part 1

Chris Irvine, Parent CoachLeave a comment

Sunday night I had a great idea. Or so I thought.

We had decided to see Star Wars as a family, along with my niece and her boyfriend, Friday afternoon. Opening day. That means picking Maddie up from school after her last final and grabbing her brother a couple hours early. And here was my brilliant idea: I told the kids they had to go to school every day this week in order for this to happen.

Maddie’s surprising response: “I have to go to school. I have finals.” She has to do something? Well, that’s new.

This baby’s in the bag, I thought. I bought tickets for us all. Everyone is going to school, and everyone is going to the movie. This is going to be a good week, I thought.

Right now, Maddie’s still in bed. The cab has come and gone. I will drive her to school now, if she’ll just get up.

My son keeps trying to convince her to go. “Just go for a little while,” he said. “Wouldn’t you rather go see Star Wars than stay home from school for one day?” “Oh, are you nervous about finals?” he is asking right now. “No? Just an old-fashioned stomachache, I guess,” he says. He’s really giving it his all. Despite years of what I would categorize as resentment towards her, he loves her. She is the biggest Star Wars fan in our family and now she might miss out. This could be tragic.

Last week I had a meeting with Maddie’s special ed teacher and the assistant principal. I had been trying to make things happen strictly via email with the teacher, Mr. L., but I haven’t been satisfied. Nothing beats face-to-face, so I called this meeting. I left there feeling very optimistic. Not necessarily optimistic about Maddie’s behavior changing, but optimistic about the school’s approach to handling her. Mr. S., the assistant principal, clearly understood the problem. He is going to be firm with her, but he also understands that many of the protocols applicable to truant kids aren’t appropriate for Maddie. This is part of her disability, and everybody at the table understood that.

Pause for a pointless drive to school

My son’s attempts to convince Maddie to go to school were effective. Sort of. Maddie had been crying at one point, a rare occurrence. When she cries, it means something. But somehow all of my son’s efforts had the desired effect.

“She’s up and even has her shoes on!” he announced proudly. There have been times in his thirteen years of life that he has driven me absolutely crazy, but there are times when he blows my mind with his insight, his thoughtfulness, his initiative, his kindness. This is one of those times. He really wants things to work out for everyone.

“Maybe you should bring Otter,” he suggested to Maddie once she had gotten up and dressed. Otter is a Beanie Baby who has been with us for the last 13 1/2 years. It has been a source of comfort since Maddie fell in love with it so many years ago on a trip to Carmel. I can’t believe we still have that thing. Maddie grabbed Otter, held it close, and walked upstairs. She was reluctant still, but she was moving in the right direction.

So I said goodbye to everyone, and Maddie and I set off for the 25-minute drive to school. We brought our puppy Banjo along for good measure. Puppy snuggles are always better than no puppy snuggles!

As we pulled into the drop-off zone, Maddie just sat there in her seat. Banjo was on her lap, and nobody was making a move. “I can’t do it,” she said sadly. Her stomach hurts too much, she had said. She did the best she could, she said. She had really tried. The tears welled up in her eyes again.

Well, now what do I do? I thought. I had tried to convince her to go to school for even a just part of the day. I would pick her up if she couldn’t do it. “Just go say hi to Mr. L.,” I had suggested. Her classroom was so close, but that didn’t matter. The distance from the car to the classroom was still too great for Maddie. This wasn’t happening.

And here I was again, having given a very clear reward offer for a very clear set of expectations, but still finding myself in the middle of a rather murky moment. Did this count as “going to school”? Have we already arrived at the no-Star Wars moment? That just didn’t feel right. She clearly wasn’t feeling well. She had done the best she could. But I didn’t know what to say, so I called my husband and explained the situation. I guess what I wanted was permission to give Maddie permission to go home. That was my inclination, but I am in a constant internal fight with myself about things like this. Another rational person sharing in decision was important. And my husband came through. “She did her best,” he said. Oh, thank goodness.

Thank goodness for two reasons: First, I really didn’t want to leave her out of the Star Wars viewing. When the first one came out in 1977, it was near my tenth birthday, and our parents took my sister and me out of school to go see it. I will never ever forget that day because of the movie itself and how special I felt getting to miss a little school to go see it. I had planned to take Maddie out early, too, but it turned out she was getting out early anyway. My son does get the special early pickup for the occasion–on pajama day, no less.

Secondly, it seems to me that when the carrot is no longer available so early in the game, there’s no point. If I say “you have to do this thing all week to get a reward,” and Maddie blows it on the first day, what in the world is going to motivate her the rest of the week? That’s a huge problem.

So my husband and I agreed to let her go home and still have a chance to see Star Wars Friday after school, and we turned around and came home. Nearly an hour trip for nothing. Well, I guess it was for something because Maddie got credit for going to school in a way.

Soon after I got home, I got an email from Mr. L., who wanted to know if Maddie was going to be at school. It turns out that the extra time she is allotted for test taking was front-loaded: she could start early in the week (i.e., today) and finish with the rest of the class. Well, now that’s out the window. He thought perhaps she had anxiety. My son had asked her about that as well, and she had denied any such thing, but I had to wonder. One of the defining aspects of autism is an inability–or diminished ability–to identify emotions. Maddie has always had difficulty with that although she’s made significant progress over the years. Still, it’s not uncommon for stress to result in stomach issues. And even I sometimes experience physical manifestations of stress before I can identify what’s going on in my mind. So the likelihood of that being the case with Maddie seemed high. After all, this is the first time she’s really had final exams. She’s most certainly feeling some pressure.

In fact yesterday she was given her history exam, and instead of making progress, she made a paper airplane. Yes, this is my child. I have the child who makes paper airplanes instead of taking a test. When I asked her about it, she said he had been bored. Bored. Hmm. I wonder if bored was really stressed.

So I asked her again this afternoon if she was nervous. “Maybe,” she admitted, probably just accepting the idea herself. I assured her that all she had to do was give it a good try, to do whatever her best work is, and that just doing it was more important than her grades. I also explained that she couldn’t make airplanes instead of doing her work. Even if she got an F on a final exam, I explained, maybe she’d get 50 points out of 100, which is so much better than a big fat zero. I think that made sense to her.

Maddie spent the day wearing her parka and hanging out in bed watching TV.  Mostly she looked sad and pitiful when I checked on her or brought her food. The only thing I required of her was a shower. She didn’t argue, fortunately, although there was bargaining, as usual. I shampooed her hair, the promise of which seems to be a big relief to her . We blasted music (“Fergilicious,” “Another One Bites the Dust,” etc.) and danced, she in the shower, I on the other side of the shower door. We danced and laughed and made funny faces. That put us both in a good mood, after a stressful day for, apparently, both of us.

“I have to go to school tomorrow,” she says now. I nod in agreement. Today I think she had talked herself out of that idea. Today wasn’t an official final exam day. But tomorrow is. I am optimistic at the moment. We shall see. We shall see.

 

Life As I Know It

Chris Irvine, Parent CoachLeave a comment

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

Chris Irvine, Parent CoachLeave a comment

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.