Back on the Horse

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.

Step One

I decided some time ago that I wouldn’t chronicle in my blog the minute details of when Maddie does and does not go to school. Too much of the same thing day after day. She went to school, yay! She wouldn’t budge, boo.

Today, however, the travails of school attendance leaped onto the forefront of my parenting life as my husband Jake and I met with the educational consultant to discuss the possibilities for Maddie. Or really to discuss how to determine what the possibilities are. At this point, we don’t have a clue.

There are many challenges in choosing a path. As with every fork in the road, where the paths lead is uncertain. What if we…? Who knows? Who knows whether each decision we make is the right one or the wrong one? Nobody. So we do the best we can we the information we have (and whatever information we are still to get), and hope for the best.

When the topic of boarding school comes up, people are generally sympathetic. Often they see how this challenge takes a toll on me. Well, they are right: the effort I expend parenting Maddie as a teenager and the general feeling of futility put an awful lot of stress on me.

But if we do in fact send her away, it will be for one reason and one reason only: it’s the best thing for Maddie. It will not be to save me any stress. In fact, the thought of not being there for Maddie when she comes home from school with a problem, or when she wakes up sick, is heartbreaking. But what we want for her is to live up to at least some modicum of her potential. She is a clever, creative, lovable, warm, interesting person. She is passionate about the things that interest her. She is resourceful and enthusiastic. She’s also hilarious. For her, a meaningful life should include friendships and some way of contributing to society, whether paid or not. She is fully capable of accomplishing things, whether she’s gardening or teaching or working with animals or writing or making things with duct tape. Plus, people love her. She’s so fun to be around. She should feel the rewards of friendships and feel appreciated for her gifts.

At the moment, those things seem so far away. At least once a week she decides she’s not going to school. We don’t know why, exactly, but we’re pretty sure the problem lies not in the school Maddie attends, and not in Maddie’s performance when she’s there. A day at school is typically pretty successful across the board. She’s productive, happy, and well-liked.

The problem is getting her there consistently. And getting her to do her homework when she’d rather not. It’s a daily struggle. The point, though, isn’t necessarily her academic success. For right now, it’s learning to do it anyway. Learning to get up when she’s tired, to do the things that are boring or laborious or challenging anyway. I don’t care if she gets straight A’s or straight C’s as much as I care about her finding something inside of herself to motivate her. I realize she’s only 15 and anyone that age has a lot of growing up to do, but her future is so uncertain, I’m afraid to just wait around for her to figure this out on her own.

Today the question arose: What if she can never find motivation? What if that never happens?

My response: I can’t go there. I have to have hope. I have to believe in Maddie. I have to believe that she will be able to be a contributing member of society, to have friends, to get out in the world and share her tremendous gifts. At the moment it seems that, if given the choice, Maddie would spend her days in her cave of a room playing Minecraft. Uh, no. She’s too awesome for that.

And because she’s so awesome, it remains my job to try and try and try to help her live her best life. We just want her to be happy, and to be happy, I think she needs to feel valuable, important, appreciated and loved. And so I continue to fight for her, to ponder the possibilities, to investigate possible avenues to bring that to fruition, to make the most of the resources we have, and to find new resources, whatever they may be, to push her as much as I can without pushing her too far, to encourage her without berating her, to love her and cherish her and figure out how much, exactly, to expect and demand from her.

The result of the meeting today was this: I am going to get additional evaluations of Maddie so that we can be better informed about her strengths and challenges (not academic–it’s called a personality screening), for ourselves and for any potential educators. The consultant will go to the high school and observe Maddie to help round out the picture. Then we will consider the options. It may be leaving her at her current school with additional help; it may be moving her to another local school that’s more compelling to her; it may be sending her to a mildly therapeutic boarding school. That’s the order of my preference, with the first being WAY out in front. We don’t even know if there’s a boarding school that would be a good fit. We don’t know if there are resources here that can help us. It’s all very much up in the air.

So there we have it. We are nowhere closer, really, to knowing what the plan is than we were yesterday. But we have, at least, begun the process of making a plan. And we know that plan could change, or we could take a path and it might fail and we might have to redirect. Such is the nature of parenting. Such is the nature of life.

At best, we make informed choices and hope for the best. And then we remain open to making a different choice. When a change of course is necessary, it’s just information. So we take that information and try again.

And hope for the best.

Tuesdays and Thursdays

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.

Hoping and Knowing

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.