parenting

Progress Report

Chris Irvine, Parent Coach4 Comments

I find myself often out of the loop on things. Over the years, I have come to the conclusion that it’s my own doing. I must not pay attention to some of the information coming my way.

For example, on the last day of school when Maddie was in first grade, I was sitting at home while my son napped, watching the clock and waiting for the right moment to wake him up so we could pick Maddie up for the last time that year.

At 1:00 p.m. the phone rang. It was Maddie’s teacher.

“Did you know that school got out at 12:30?” she asked.

And my reaction was one of utter and complete surprise. I didn’t think “Oh, right! I forgot!” I thought, “Well, that’s news to me!” Apparently it was not news to a single other parent at that school. I imagine that little tidbit of information had been delivered to me via emails and handouts, but somehow or other I never received it. Or my brain never processed it.

It’s now two months into the school year, and I was thinking the other night about how, apparently, there is some way to log on to the school website and view your student’s grades. I wasn’t sure how that was done, at all. I’m not sure that I have ever seen any information about this account, but I had heard rumors.

Luckily, it turned out I had set up the account when I registered Maddie for school, so I was able to log on pretty quickly once I decided to do it. Phew! That was easy.

And then, to my amazement, I saw it. A list of her classes on the left, and a column of A’s to the right. Not even an A minus. A, A, A, A, A, A, A, A, A. Or however many there were. A couple of comments, too: “A pleasure to have in class.” “Does excellent work.”

Okay, I knew she was probably a pleasure to have in class, but the rest of it just blew my mind. So much so that I literally couldn’t believe it.

So I texted my friend Laura, who knows things. She is one of the people I call to get the straight story. Or advice.

“Do you know if the grade defaults to an A if the teacher hasn’t entered it yet?” was my question. She was embarrassed to say she didn’t know. Of course she didn’t know. Why would anybody even think that? What parent would look at this fabulous report card, and think, This must be a mistake?

Well, I would think that because in all of Maddie’s 10 1/2 years of school, she has never gotten straight A’s. As you must know by now, she has the intellectual capability to do that, she just has other challenges (like ADD and a general lack of motivation) that have gotten in her way. I’ve never even made a big deal about grades because that’s always been a secondary (or even tertiary) issue with her. My first order of business is to get her to school, and if she goes, well, let the chips fall where they may, I guess.

My son’s progress report came in the mail the next day. So I knew it was time for mid-term grades. I called another friend. “Did you get your daughter’s progress report grades?” I asked. “Well, it IS time for them,” she answered.

I thought about it some more. Obviously there had been direct input into the system, or there wouldn’t have been comments.

So here we are. So far, in Maddie’s first year at a public high school, where she is taking geometry and science in the regular classes, she is acing it.

“Maddie, I just looked up your grades online. It looks like you have all A’s. Is that possible?” I asked.

“Yep,” she shrugged. No big deal, apparently.

The day before I had looked up Maddie’s grades, there was a shortened school day to accommodate the special PSAT that was being offered to sophomores. Maddie was not signed up. Once again, I didn’t even know about it. I’m not sure if that was my oversight, or if we were not included because of Maddie’s special ed status. I couldn’t say whether or not I would have signed her up–I was thinking probably not–but I wished I’d had the choice.

I feel so un-anchored when it comes to Maddie’s future. While everybody else is talking about college, my picture of Maddie after high school is so murky. She has the brains to go to college, but does she have the motivation and self-discipline? Can she get enough help in that regard? Before the progress report, I was so skeptical about the likelihood of her going to college.

Now I don’t know what to think! She spends very little time at home doing school work, but she is clearly making the most of her time at school, and she hasn’t actually studied anything in her life but manages to ace tests anyway.

Next year I will have her take the PSAT. She usually does well on standardized tests. So she might as well try.

Because with this kid, there are plenty of surprises. I don’t know (or particularly care) what she’s going to do with herself, but I want her to have every opportunity to make choices. I don’t want to underestimate her. I also don’t want to expect so much that I set her up for failure. So I guess my challenge is to put expectations aside, and just support Maddie in her endeavors. Give her opportunities, and see what happens.

For who knows what tomorrow will bring?

The Comparison Trap

Chris Irvine, Parent CoachLeave a comment

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

Chris Irvine, Parent CoachLeave a comment

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

Chris Irvine, Parent CoachLeave a comment

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!

One Step Forward, One Step Back, Then Maybe Sideways

Chris Irvine, Parent CoachLeave a comment

This Tuesday I wanted to give up.

Every weekday morning, when my alarm goes off, my initial reaction is dread. I never know how it’s going to go. How many times will I have to try to get Maddie out of bed? Will she finally get up? Will yelling be required? What if she decides she’s not going? How much patience and creativity will I have to conjure up? Will anything I say or do make a difference? Will this be the day when I finally crack?

And Tuesday my dread was fully justified. What a terrible morning we had. Sure, I finally got her off to school, but not until I’d just run out of gas. The rest of the day I felt deflated. Picture that literally: a flat tire, a deflated ball, a shriveled up balloon. I had nothing left. I didn’t want to talk to anybody. I couldn’t do housework. I didn’t even want to see Maddie when she got home from school. I guess I was depressed. It’s a challenging way to be, getting out of bed each day, knowing your efforts will likely be unsuccessful, but not knowing what to do differently to change the outcome.

It’s a frustrating experience. And it’s not as linear as parenting a neuro-typical child might be. There is no real direction. One day Maddie will step up, and then she may not the next day or the next week or the next month. Then she might be agreeable and motivated for a week. One day I might say something magical that seems to penetrate her often impregnable system. And that magical something may never have an impact again. It’s a constant struggle to be creative and patient, to maintain hope when I’ve run out of ideas and Maddie seems stuck.

So tomorrow is Friday. I’m pretty sure she’ll go to school because Fridays are her favorite days. All her favorite classes occur on Fridays. And, I just learned, she has chess club. I had no idea she was into chess until she mentioned it last week, explaining why she skipped a lunch time rally. I will try to start the day with optimism because Fridays tend to be more successful days overall.

But even on a successful day, there is a period of panic. Maddie just cannot get herself out of bed. So as I’m juggling breakfasts and lunches and helping my son with whatever he needs, I’m making multiple trips to her room. Often I think she has gotten up only to discover five minutes before the cab is to arrive that she is still in bed. Then, in a panic, I raise my voice a little say things like, “Pretend there’s a fire!” or even “Act like you’re in a hurry.”

Then she’ll say, “Don’t rush me.” That absolutely kills me. “Well, then give yourself more time in the morning,” I’ll reply. She doesn’t seem to get the connection. She can’t help that she moves slowly, she’ll say. And I’ll tell her that’s fine, but then she needs to give herself more time. She either needs to be faster or have more time. That’s just logic, isn’t it? But all she can think of is “Don’t rush me.” How I would love to not rush anybody! It makes for a stressful morning for both of us, and sometimes I have a hard time shaking that morning experience.

Today I haven’t felt well. I’m sleep-deprived and exhausted, probably a bit depressed. I’m definitely at the end of my rope. This evening I asked her about homework. She says she doesn’t have any. I don’t know if that’s true. Oh, well. I don’t even care right now.

Then I tell her she does need to shower. That’s the one single think I ask her to do. She says she’s busy but she’ll definitely do it. Later, I remind her, and it’s getting close to bed time so time is of the essence.

“Oh,” she says, “I’m not going to do that.” She has decided.

She smelled my defeat earlier, I think. She knew I didn’t have the fight in me. She has that ability, I’ve noticed. Whatever. I can’t even do this. I ask her to please brush her teeth and wash up before bed. I’m pretty sure she’s completed those things. I don’t know why she decided they mattered when nothing else I’ve said today has had much of an impact.

I also noticed this morning when I was absurdly applying deodorant to the appropriate place on Maddie’s body that she had shaved her underarms. That was a shocker. She never does anything like that unless I make her. And she had actually thought of it herself and then done it.

And yet, by contrast, there I was spraying deodorant on my 15-year-old daughter’s armpits.

She is full of surprises!

So before I go to bed, I am taking some deep breaths. I will try to be optimistic for tomorrow because it’ll be Friday. I’m so happy it’s Friday, even if I have about 28 loads of laundry to do. The next morning I get to sleep in! I don’t have to dread the day ahead. It’s like a vacation from frustration, aggravation, depression and sadness all wrapped up into two days!

Well, not really. There will be things to accomplish. We shall see how it goes. That’s just how it is every day over here: We shall see how it goes. We shall see.

Tuesdays and Thursdays

Chris Irvine, Parent Coach2 Comments

And here we are again. The cab driver has come and gone and Maddie’s still in bed. She went to sleep on time. I even thought she had an incentive: She wants to stay up to watch The Flash tonight, and I said she could as long as she did a great job today. Her very first opportunity to prove herself has passed. And she failed.

I woke her up in the usual manner, stayed there and chatted for a few minutes, put everything she needed to get dressed on her bed, and went upstairs to make her breakfast and lunch. On my second visit to her room, I told her it was my last warning for her to get up. She would need to get going or the deal was off. She nodded and said, “Don’t close the door.” I assumed that meant she was heading to the bathroom shortly.

Just before pickup time, I returned to her room after packing her lunch and water bottle into her backpack. She was still cocoon-wrapped in her blanket.

And then it happened. I lost it. I couldn’t be nice and patient anymore. I’m done. I’m out. I grabbed her blanket, yanked it off her, and yelled, “Maddie! What are you doing?!”

“Lying in bed,” she answered dryly. Duh.

I don’t remember what I said after that, but I know I was yelling. My patience and kindness aren’t readily available today. For some reason I haven’t been sleeping well for a few weeks, and I’m feeling it. Last night I took melatonin, which usually works, and slept on the couch where nobody would disturb me, but somehow our puppy ended up in my space and, although he’s normally a good sleeper, last night he woke me up a couple times. I’m desperate for a good night’s sleep. It’s like the days of having an infant.

Especially today. Except that my child is almost as big as I am. And she can talk back.

When Maddie was a baby, I thought, “How could I ever be mad at her?” It was unfathomable. She was so sweet and innocent and helpless. Then when she was about two, I realized I could get plenty angry at this kid. It takes me awhile to build up to that, but the frustration your child can cause is probably equal to the love you feel.

And that’s where I am this morning. I am at my wit’s end. I don’t have a solution. Just when everything seems to be going great, there’s a major stumble. A roadblock. An insurmountable problem that comes seemingly out of nowhere. Like Mount Shasta. Except Mount Shasta’s pretty to look at.

She was doing something on her phone, so I tried to take it away from her, but it was turning into a wrestling match, something I can’t win anyway. Maddie is a lot stronger than she looks. Plus, it’s not really healthy to have a physical altercation with your kid, so I gave up. Maddie would never give up, and I realized that, too.  She would be good under interrogation. Oh, yeah? You think that’s going to work? Think again, mister!

The boarding school idea popped into my head. How many times can I bring that up without actually doing anything about it? It’s meaningless at this point, I think. She doesn’t believe we will send her away. And I don’t want to send her away. It’s not a punishment. It’s a white flag. I give up. I give in. I am not capable to fighting this battle anymore. And today it feels like a battle.

“Why are you doing this?” I plead.

“I don’t like Tuesdays and Thursdays,” she declares.

“Well, you can’t just skip them. That’s forty percent of school!”

Huh, good point, apparently. But it doesn’t matter how good of a point I make; Maddie has decided. 

Is there such a thing as a stress aneurism? Because I’m about to have one. I tell her again about the boarding school thing. “I’m serious,” I say. “I wouldn’t be giving up on you. I’d be giving up on me. Apparently I can’t teach you what you need.”

“Well, if I go to boarding school,” she counters, “I won’t get up and go to school there either, and they’ll just send me back.”

“Maddie, there are schools where people specialize in this kind of thing.”

“Huh,” she says. She is digging in her heels at this point. “They haven’t dealt with me before.”

This apparently has turned into a battle, and she is going to win no matter what.

“Really, Maddie? What are you going for here?” I ask. “You want everyone to just pass you off to somebody else? Really?”

This probably isn’t a good road to take, this particular line of questioning. But I’m just out of ideas. It seems to me she doesn’t take skipping school seriously, so I feel obligated to change her attitude. Somehow or other I need her to see that school isn’t optional, and that there will be consequences for her choices.

My body is tense and my brain is shorting out. I can’t do this for one more minute. I get my husband up to help me. I’m out of ideas. I’m out of patience. I feel powerless. I am powerless.

——————-

Fast forward 30 minutes.

My son has a broken finger and has a cast. He usually rides his bike to school but for now I’m driving him. Just as we are about to depart, I hear my husband shout, “She’s almost ready!” A miracle has occurred. The one thing that sometimes works in times like this is role playing, using characters from whatever Maddie is into at the moment. Right now it’s that anime show she loves so much. I suck at role playing. My husband doesn’t love it, but he’s better at it. And sometimes it works. It’s absolutely absurd that we should have to take on other characters to motivate Maddie, but we do the absurd all the time if that’s what’s required.

So now we run out the door, up two flights of stairs to the car, and high-tail it to the middle school. Henry leaps out at his first opportunity, and to my relief, we are on our way to high school. Maddie will be a bit late, but that’s okay.

About three minutes later Maddie announces, “Just so we’re clear, I’m not getting of the car when we get there.” You have got to be kidding me.

It’s 8:15 and I want to go back to bed until today is over. I can’t do this for one more minute. I consider just turning around and going home. What’s the point? I wonder. Seems like a waste of time to drive halfway across the county for a disappointing and frustrating outcome. But I’m not quite ready to give up. Oh hell no. She’s going to school.

So I tell her we are going, and if necessary I will go to the office and get someone to help me. I’m serious. I will wait there and talk to whomever I can until this matter is sorted out. I am not leaving until Maddie is out of the car and checked in at the office.

It’s her phone that finally saves the day. I have left my own cell phone at home. So a number of times Maddie has called home to talk to her dad. As we are arriving at school, I ask for her phone so I can talk to him. I thank him and hang up. Then I take her phone and slide it into my purse as I’m getting out of the car.

“My phone!” she panics. “Can I have it? I need to write my story for school!”

“Is it due today?” I ask. I am wondering now if late homework is factoring into today’s events.

“I don’t know.”

“Well, you can finish it at school. It’s better to turn in homework late and be at school.”

“Can I have my phone back?”

“Once you have checked in at the office and are leaving for class, I’ll give it to you.”

And that’s how it goes. I walk her to the office, and she checks in, having to admit she is late because she “slept in,” although that’s not really the truth.

Can I quit now? On days like this, I feel like I’ve done a full day’s work by 9:00 in the morning. I’ve been up for 2 1/2 hours. A very long 2 1/2 hours. And I’m tired.

Now, as I’m writing this, one thing becomes clear. Words aren’t going to solve this problem. I could talk about this for a week straight and it’s not going to change her mind. She needs concrete information, and that is going to come in real-life consequences. So for now, I need to see what I can accomplish with the administration at her school. Somebody over there needs to make a point. Maybe it’ll work, and maybe it won’t. But I can’t do this alone.

Today will be about communicating with the school and doing a lot of deep breathing. Maybe a nap. I need to figure out how to relax now. My head hurts. I feel like crying, but I can’t. It would be such a relief, but the tears aren’t there. I just feel heavy and tired. Stressed out and defeated. I’m not sure what the appropriate way is to express all that.

Tomorrow should be easier. It’s a shorter day, and on this particular Wednesday, there is a series of entertaining events scheduled. I hope she sees that as a reason to go to school, not another reason to stay home. I hope I get some sleep. I hope I am better equipped to handle whatever comes my way.

A Little Time Off

Chris Irvine, Parent Coach1 Comment

You may have noticed I haven’t blogged for several days. It’s kind of a good news/bad news thing.

The good news is I had the company of my sister and her adult niece for the past few days, and nothing fills me up like spending time with those ladies. It was just days of the kind of girly fun I don’t get to have with Maddie, who would rather do just about anything than shop and get her nails done. Plus, I’m very close to my sister and her kids, so I was in heaven. I even went out for the evening with them once, having some true time off while my husband was home getting everyone to bed.

The bad news is I was just too tired to write. Tired of parenting. Tired as in “I-can’t-do-it-one-more-day-so-I-give-up-for-now” tired.

And that is because Maddie hasn’t been going to school this week. Well, okay, she missed two days, went one day, and is now in bed again. She’s not one hundred percent healthy, that’s for sure. Maybe she has a mild cold, maybe allergies, but something is going on in the sinus area. Nothing dramatic, but she is not completely well.

Nor has she appeared especially sick.

But this week I just didn’t have the fight in me. I tried some gentle encouragement and even, today, a reminder about the purpose of this year. But that was it. Once I was convinced she had made her up mind, I quit. I just can’t do it. I can’t fight with her, or wrestle her pants on her, or even make that big of a deal about it. I am depleted and temporarily defeated.

So I guess we’re both taking some time off this week. For me, it’s time off from the emotional and mental struggle, and even some time off from thinking about it all. So everything took a back seat, including my writing. As much as I love writing this blog, and as gratifying as it is, it does force me to spend some serious time pontificating about my situation and focusing a bit on my daily struggles, and this week I just needed to forget about it. Yesterday, when my moment of victory arrived after getting both my kids to school (the other one just broke his finger, so both of them were home the day before yesterday), I was happy. I was triumphant. When both my kids have gone to school, I figure everything else I accomplish that day is a bonus. Laundry? Bonus! Dinner? Bonus! Making my bed? Bonus! I deserve a brownie!

So today, there is no bonus in play. I will take my son to the orthopedist for his fractured finger, and then take him to school. Then I have my weekly therapy, which has been on hiaitus for a few weeks. Seems like a good time for that. Apparently I have some things to discuss. And then I do get a bonus – a movie with a new friend. The trick will be enjoying myself, not because of the company (which will be excellent!), and not because of the movie choice (rave reviews!), but because I’ll be sitting there feeling like I failed today. Okay, maybe not failed, but didn’t accomplish the single most important thing I needed to today. My number one job: getting my kids to school. Okay, maybe it’s number three after keeping them alive and loving them. But those are easy. The whole school thing is hard, and I never know how it’s going to go.

I also blew it by forgetting about this morning’s agenda and waking up my son at the normal time instead of letting him sleep in. We’re going to his doctor appointment first, so we had a good 45 minutes extra this morning. So I got up at 6:30 for nothing. That stinks too. I really could have used a bit more sleep.

So in the absence of school attendance success, I have now decided on my goal for today: to be happy. To be grateful. To be proud of all that we do accomplish around here. To recognize Maddie’s strengths and not focus on her challenges. To be positive about the future. To accept the different circumstances we have as a family and embrace the good that comes of them.

And honestly, that gratitude is not hard to come by for me. I am a lucky, lucky person. I know it every day. I have a loving family, both in the one I have created and in the one I come from. I live in a beautiful place. We have everything we need, and then some. We have the resources to get all the help we can think of for Maddie. I even get a weekly therapy session to help me cope. Talk about a luxury!

As for my gratitude for Maddie, that’s easy too. Most of the time I’m in awe of her.

Yesterday a friend stopped by to borrow something, and she’d had a challenging day. I don’t know if Maddie sensed my friend’s emotional state, but she offered my friend a hug. And Maddie is a world-champion hugger. Big, tight, meaningful, long hugs. Often just at the right moment. My friend’s face and body relaxed. “I needed that,” she said. And she really had needed that.

So even though Maddie isn’t going to school today, I am still grateful for her. She’s a remarkable human being, full of compassion and love, empathy and intuition.

I will give her the day off and I will take one too. A day of from worrying, a day off from guilt, a day off from fear. I will enjoy my day, knowing I have raised a kid who may not be a devoted student, but who is a wonderful human being. I will give her a big, tight, meaningful, long hug and tell her that I love her.

That One Time I Really Screwed Up

Chris Irvine, Parent CoachLeave a comment

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.

Five Beautiful Words

Chris Irvine, Parent Coach2 Comments

The first time Maddie said anything (okay, the second, after the “light” incident), she said “Mama.” It was a long time coming, so even though all moms cherish the moment their child says that magic word, it was especially sweet for me. Twenty-five months of waiting and working finally paid off.

And today, Maddie is incredibly articulate. She’s not a huge talker necessarily, but she’s always on point; when she says something, it’s worth your attention.

But today she said something so magical, it was almost as exciting as when she said her first word.

Today’s memorable quote? “I’m gonna take a shower.”

If you’ve been following my blog, you know that personal care has been a huge issue for her. To be more accurate, her lack of personal hygiene has been a problem for me. We’ve had some terrible conflicts over her refusal to bathe herself. I can’t stand the teenage B.O., for one thing. But more than my own sensory torture, I’m concerned with how her failure to keep clean will affect her socially. NOBODY likes a stinky person. Well, maybe other stinky individuals, but we live in a society of good-smelling people who bathe regularly, so greasy hair and smelly pits just don’t do a person who’s already struggling socially any good.

So when she appeared in the kitchen with a towel, her phone, and her bluetooth speaker in hand, I couldn’t even fathom what she was up to. “Whatcha doing?” I asked.

And then she said those beautiful five words, “I’m gonna take a shower.”

When you have a child with delayed development, each minute achievement feels huge. I remember the entire year that followed “Mama.” Each sound was so slow to come. She would try and try to figure out what her lips and tongue were supposed to do to make a new sounds. “Nnnnn,” she would finally say, and it was cause for great celebration. A new sound! Woohoo!

It wasn’t like typical language development, which we often take for granted. Somehow babies absorb everything they hear, and their brains are able to make sense of it all. For Maddie, the words made sense; she just couldn’t move her mouth properly to make the sounds that form the words.

So, “mama” was first. She was 25 months and 2 days old. “Dada” came a little later. And that’s when we started calling her Maddie instead of Madeline. Making sounds was so difficult, and putting them together into a word was nearly impossible, so we thought the least we could do put her own name within reach. At first she referred to herself as “Ma-Da.” I separated those syllables because that’s how it sounded. “Ma. Da.” It wasn’t long before she could say that. What a relief that must have been for her! Instead of pointing to herself, she could actually say her own name!

The way I helped her learn words was really teaching her to read. We spent a lot of time with foam letters in the bath tub. I would stick them on the side of the tub, and we would sound out words. For a long time she said “wot” for water. Adding another syllable was too much. She said “c-at,” and just “hh” for her brother’s name.

By the time she was two and a half, she could read a few words. I would write the names of our two cats on a white board, plus “mom,” “dad,” and her brother’s name. She could identify them with ease. Whether or not she could actually say them was a different story, but by that time she knew the sounds associated with all the letters purely out of necessity. I didn’t set out to teach her to read; it was just a way to practice speaking, and especially combining sounds.

When you have a typical kid, you just can’t fathom the miracle that speech acquisition is. But when you have a kid whose every tiny forward movement is the result of hard work, it suddenly becomes miraculous.

And so it continues. I would bet that if you don’t have a special needs kid, you don’t remember your kid announcing they’re going to take a shower. Big deal. People take showers.

This isn’t the first time she’s ever said that, but it’s such a challenging issue here at our house that even one crisis averted is momentous. Those words might not be magical necessarily, but I feel like a million bucks. I’ve had a hard day. That one moment just made it all better.

And then something else happened. I had put a pot of water on the stove, intending to make pasta for my son. I then went to my room and started to write. Sometimes I lose track of time when I write. I get on a roll and everything else fades into the background. And so it was tonight. About 15 minutes into my session, I remembered the pasta. My son was waiting for it, and he’d been in kind of a bad mood all day. I knew I was going to hear about the delay.

I raced to the kitchen to toss the pasta into the boiling water, and right away I noticed the timer said 5:17 and was descending. Maddie was sitting in the kitchen texting her cousin. I realized she had seen the water boiling and taken the initiative to get the pasta going. For me. For her brother. It wasn’t for her at all. But she was observant enough to notice, and thoughtful enough to do something about it. To her it was no big deal. To me, it means the world. I am raising a good person. All the work I have put into parenting her is paying off.

And she continues to amaze me. Some days are so hard. Sometimes she gets stuck in her own head and can’t see beyond herself and the moment. And other times she is thoughtful and engaged and motivated. Sometimes she announces, “I’m gonna take a shower,” and notices I need help and does something about it.

Those are the breakthroughs. Those are the times I want to hold onto. Those are the things that define the person she really is. And she is awesome.

Terrible Morning Turns Into Okay Day

Chris Irvine, Parent CoachLeave a comment

A brief update for you all:

Sometime shortly after I posted Monday morning’s blog, Maddie decided to go to school. It was about 11:00. She had missed half the day, but on the other hand, she would be GOING for half the day, so I was all for it.

After four and a half hours of struggling with her, I wasn’t exactly ecstatic, though. I was just exhausted by that point. I guess I was relieved, though.

So we got into the car and drove the 25 minutes to school. She expressed concern about what was going to happen when she arrived. “Is someone going to talk to me?” she wondered. I didn’t know the answer to that. I knew she had to check in at the office, but I really didn’t know anything beyond that. I suspect a discussion about her attendance is impending. She’s had enough unexcused absences to warrant concern. But I’m letting the cards fall where they may. That’s the main reason we moved her out of the private school, after all. I’m not going to interfere.

We had a pleasant ride to school. Might as well make the best of the remainder of our day, I figured.

We finally arrived, and when Maddie was just about to get out of the car, I had a realization.

“Maddie, I wish this morning had gone better,” I said, “but I’m proud of you for turning it around. I know that’s hard for you.”

I was so glad I both thought of that and said it out loud. She needed to hear it. Small victories, you know. Maybe the morning sucked, but the typical story is that she decides she’s not going to do something, and she’s stuck in that mindset. It’s frustrating as all get-out, but transitions are probably the most commonly difficult challenges for autistic kids. And she somehow transcended that challenge.

Maddie got it. She thanked me. She looked relieved. I knew she was probably nervous for what awaited her when she got to the office, but she picked up her backpack and held her head high as she said goodbye.

It really was a terrible morning, but sometimes it’s those challenging times that bring about the best moments. I remembered to praise her for what she did right (yay for me!), and she was proud of herself, too (yay for Maddie!). She did something almost impossible for her. And now we both know it’s not, in fact, impossible. It will still be hard for her to redirect herself, but as I always say to my kids, “It might be hard, but hard is okay. Is it impossible?” I ask that knowing, of course, that whatever is in question is NOT impossible.

I don’t know what’s in store for tomorrow, but I hope that whatever it is, I can find something to be thankful for.