teenagers

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.

Swimming Upstream

Chris Irvine, Parent Coach1 Comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Days are Long…and the Weeks Are Longer

Chris Irvine, Parent CoachLeave a comment

Happy Friday, everyone! Especially Happy Friday to me. This has been an extra challenging week, and it’s finally over. A much needed break is upon me. I am so thankful.

As you know, Monday and Tuesday Maddie refused to get up and go to school. Without access to screens, she still managed to relax the days away while I fretted about her attendance problems. Last time I wrote it was Tuesday, the day of the play.

Mid-morning on Tuesday I managed to contact Maddie’s drama teacher about the attendance requirement for participating in after-school activities. He confirmed there is such a policy but that (1) the attendance officer would never know and (2) he really needed her at the play. Such good news!

With most kids, parents would probably want the opposite news. If you don’t do what’s required of you, we would want them to understand, then you can’t do the fun stuff. There are consequences. Truant students don’t get to be in a play after school, Maddie. I admit I was ambivalent about this at first. I do like the idea of attempting, at least, to reinforce this idea with her. But I also wanted her to have the experience of the play, to reinforce the positive experiences associated with school, and to help her feel more connected to it.

Miraculously I managed to get her to shower in the afternoon. I’m not sure how that occurred to be honest. She seemed resigned to it, which is unusual.

And then, as departure time became imminent, she said the most surprising thing: “I’m tired, but I must go.” I don’t know if she’d ever strung the words “I” and “must” together un-ironically in her entire life. I was full of hope and gratitude in that moment, but those feelings were tinged with a healthy dose of realism. Oh, sure, she says that now. That doesn’t mean she will ever say that again.

We were just ready to leave when I asked, “Do you need to bring anything?” I had a feeling she did.

“Yes, a sword,” she replied. Of course.

She headed downstairs to retrieve the desired duct-tape masterpiece and returned upstairs. Then she had another thought. So she exchanged her sword for sword-making supplies: two long sticks of bamboo and two rolls of duct tape.

“What’s up with that?” I inquired.

“Well, in the play I’m supposed to be making a sword,” she said. “Plus I have to make one for Nick anyway. I can just work on it during the play.”

“How long does that scene last?” I asked.

“Just a couple of minutes.”

“I think it would better to just bring a completed sword and some matching duct tape and you just add a couple of pieces. You  need to focus on performing, not making a sword.” I imagined in her on stage, fumbling with her props, making all kinds of noise with the tape.

“But I need to make one anyway,” she insisted. She has a way of doing that: insisting.

I soon accepted that this line of reasoning wasn’t going to get us anywhere, so I ran to her room and grabbed the sword she’d chosen originally. “Just bring both, and then you can ask your teacher what he wants you to do.” There! No longer my problem. Man, that felt good.

One thing at a time, I thought to myself. Little hurdles all day long. Some big ones, too, but it seems like everything with Maddie is a hurdle. And unfortunately I’m not very tall nor athletic, plus the hurdles keep moving, so the race is particularly challenging, even if I’m not trying to win. I’m just trying to finish. With minimal injury to us both.

The play was great. Her teacher had written it especially for this class, which consists of five special ed students and seven kids from the general population. It began with a boy named Nathan, whom I hadn’t met before. Such an adorable boy, most certainly a freshman, but he looked about ten due to Downs Syndrome. His primary role was to start the show with a solo dance to “Thriller.” My heart was suddenly full. Full of adoration for this kid and for the teacher who so lovingly allowed him to shine doing what was very likely Nathan’s idea.

The teacher had decided some years ago that he wanted his classes not to only act, but also to learn something else in the process. He wanted his plays to have meaning. The play was about kindness and inclusion, an especially appropriate theme for this bunch of kids.

Maddie had the largest role of the special ed students, by far, mostly because she can remember all her dialogue. It was so interesting to see her up there, not only acting without fear (as usual) but also really as a leader of her peers. Towards the end of the play, Maddie showed up on stage with her completed sword and a roll of duct tape, as I had suggested. When she was getting out of the car, I said to her, “Let your director decide, and don’t argue.” She agreed and apparently stuck to her commitment. Apparently teachers have more influence. Thank goodness for that!

It’s a small theater, and it was mostly full. Of course everybody’s parents were there, but also a number of students there to support their friends. All the actors were kind and generous with each other, too. What a good night!

There was another play immediately following, but Maddie chose to skip it and go home and to bed. A wise choice, I thought.

The dreaded Tuesday was not only behind us now, but it ended on a high note, and the next day was Fun Wednesday (every Wednesday is fun), so I knew she would get up the next day and the rest of the week would be a success.

Wednesday came and I wasn’t particularly anxious when I got up. My husband has been suffering from insomnia the last few days so I’ve taken over wake-up duty again, and I dragged myself out of bed (also sleep-deprived) and woke Maddie up cheerfully.

You’d think after all these years I would know better than to count on Maddie doing anything in particular. But I was still surprised Wednesday when she did not get up. She did not go to school. I was infuriated. I got my husband up to help. He too was infuriated.

But I can see in times like this that such a response not only doesn’t work, it often backfires. I don’t think there was anything we could have done to change the outcome of that morning, and our boiling blood only makes her dig in deeper. Not wanting to go to school becomes Oh, yeah? You think that’s going to do anything? Watch me as I sit here forever. 

And so it went. Another day of truancy. After all that.

That day, however, I had decided that no matter what Maddie did, I was going to go about my business. I could not put one more ounce of energy into that particular problem. And so I didn’t.

First I had to take my son to an early-morning dentist appointment, which dragged on and on. He was too loopy on laughing gas to return to school, so I brought him home.

And then, it was time for me. I met a friend for a pedicure and lunch, a much needed mini-vacation from my frustrating home life.

When I got home, Maddie wanted to glue herself to me. But I wasn’t interested. I needed distance. She wanted solace and I didn’t have any to give. I was still angry.

My son, however, had something to say to Maddie, apparently. I learned later that he had given her a bit of a pep talk. Maddie’s little brother told her how important it was that she go to school, and asked her to do her best to at least go the rest of the week. Two days, he suggested. Just start small.

And so she did. It’s Friday morning and the second day in a row that Maddie is where she is supposed to be. Last night I reminded her that she absolutely had to go to school today. “Oh, I will!” she promised. “I need to give Nick his sword.” I know a sword delivery isn’t going to be a motivator every single day, but I’ll take what I can get.

This morning was a mad rush with lots of frustration, a cab driver who knocked at the door and sent the dogs into a barking frenzy, and surely some heart palpitations on my part.

“Maddie, you have to get up and eat some breakfast!” I had finally spit about seven minutes before the cab was to arrive.

“Aren’t you happy that I at least got up?!” Maddie scolded. I shouldn’t get mad at her if she’s up, she thought, even if she’s just sitting there in her underwear staring at the wall or petting the dog instead of eating.

I guess she has a point, but getting up is only part of the equation. Pants are required, for example. As are shoes. As is walking upstairs to the cab. You can’t just sit up in bed and call it good.

When I started this entry I was going to savor the quietude of the upcoming weekend. I was looking forward to sleeping and relaxing and not having to push Maddie for a couple of days. And then I remembered she has three days of schoolwork and homework (well, four really) to get done. It’s all on me, as usual. There is much to do.

The long, agonizing week is over, but the struggle continues. At least we can all get some sleep. I hope.

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.

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.

Hoping and Knowing

Chris Irvine, Parent Coach9 Comments

This is the year I have been waiting for. And by year, I mean school year, because as a mom that’s how many of us view the calendar. The “year” starts in August and ends in June, and the months in between, AKA summer, somehow find their own way of existing outside of The Year.

This is the year my daughter turned 15. She is about to start her sophomore year at a public high school after spending three years in a private school for kids with special needs. Maddie has Asperger’s Syndrome, what is now no longer considered a separate diagnosis from Autism. My fingers are crossed so hard it hurts. I want her to make friends, find her passion, somehow become more organized and motivated so that she lives up to her great potential. Mostly, though, I want her to get up in the morning even when she’s tired, and take showers at a reasonable interval so she doesn’t stink.
I lied before. This hasn’t been “the year that I’ve been waiting for.” Not really. I don’t think in years. Not until just now. Because life as the mother of a special needs child is best taken day by day.
I get up in the morning, hopeful but knowing exactly how it’s going to start. I will wake Maddie up gently, with a loving hug and a back rub, and now perhaps a tail-wagging puppy. I will tell her what time it is, place an outfit on her bed with a can of deodorant right on top so she’ll remember to use it. I leave, hoping but knowing this isn’t the end. I go to the kitchen and make her breakfast and then return to her room for another wakeup. She is unmoved, wrapped in her blanket like a caterpillar in a cocoon.
“Maddie,” I say gently, “it’s time to get up now.” Silence. “Maddie, it’s getting late, you need to get up.” Silence. “Maddie, please just make a sound so I know you’re awake.”
“Mmmm….” she finally utters.
“I made you some eggs. I have to go work on your lunch now,” I say, trying to hide the frustration in my voice. Maybe successfully, maybe not. “Please get up. Everything is on your bed. Don’t forget deodorant.”
I leave again, once again hoping and knowing. This goes on until a panic starts to set in. Most days my husband takes her to the van stop on his way to work. The van will be full of kids, waiting for Maddie to arrive because everybody else was on time. Maddie will be late. Again.
The scene almost always dissolves into mass chaos, with me running around, yelling at Maddie, often hastily shoving her shoes on her feet and tying them for her. Even though she’s a teenager and perfectly capable.
Her hair is unbrushed AGAIN. Most likely greasy because I couldn’t get her to shower the day before. Her dandruff is getting really bad. She isn’t wearing the pants I put out, but instead has chosen a pair she likes better that are smeared with dried avocado. Maybe she did her homework. Maybe she didn’t. Maybe she did it and it’s now under her bed somewhere. I am yelling, my husband is yelling. Somehow they get out the door, her breakfast in her hand. By 7:45 a.m. I feel emotionally depleted, defeated. Again. I didn’t cry, though. I don’t cry much anymore.
At least this is the story up until now. Tomorrow is the first day of her sophomore year, and this is the year I am determined to help her become more self-reliant, self-motivated, even a little more organized. I am counting on her school to hold her accountable in a way her sweet little private school did not. I also know that if we can’t achieve some success, the last resort is a therapeutic boarding school. I will have actually been defeated as a mom, now willing to give her to somebody else more qualified to teach her how to be a grownup. I don’t want to send my child away, but we have to do what’s best for her. For now, we are counting on this new environment to be successful.
So tomorrow is a new day. It’s a big day. But it is still just another day. I am hoping, but not knowing. Not yet.