In a matter of about two days, I have been all over the emotional map, from relief to despair to resignation to devastation to relief and hope again. At the time of this writing, I’m somewhere between resignation and hope.

Three nights ago, Maddie informed me she did not plan to return to school. At all. Ever. Despite the plan for her to return on half-time schedule, she wasn’t “feeling it,” she declared. She had tried for over a year, and it just wasn’t working.

Well, that’s certainly true.

Relief. Acceptance. A weight lifted.

I suggested online school. Maddie said, “That’s what I’ve wanted for a long time.” And I immediately (literally, with her sitting next time) began researching online schools.

I had heard of two: Khan Academy and K12 (the California state public option). After reaching out to my community, I learned of two more: Apex and Laurel Springs.

The first school I have eliminated is Apex. Apex sounds wonderful for some kids but they offer absolutely no flexibility with regard to the curriculum and assignments. Maddie needs shorter assignments in some classes. As we figured out years ago, the focus with her must be in quality rather than quantity. So, for example, she might do only the odd problems on a math assignment or some other subset of the regular homework. Or perhaps an essay’s length requirement can be cut in half. At Apex, the only accommodation they can offer is additional time since the whole idea of online school is the flexibility of time. The single last thing that’s going to happen is Maddie spending MORE time doing her work. So that’s a resounding nope.

Then I spoke to somebody at K12. They do work with kids with IEPs so there is a little more hope there. However, I cannot speak to anybody there about how they might accommodate her until I’ve gone through the entire application process, which includes procuring and providing a huge pile of documentation. I’d really like to have a conversation first, but OK whatever. The big road block, though, is once again the time involved. A high school student’s typical day is 5-7 hours of school, with 80% online and 20% offline (i.e. homework). So best case scenario is 4 hours of her watching online live or video lectures and then doing homework. Maybe less if she could reduce her schedule. Still, somebody has to be at home making sure she sits there and does the most boring thing possible to somebody like her. I haven’t completely ruled it out, but I’m not sure why. I know that won’t work.

I read reviews of Khan, and while it may be OK for supplemental instruction, what I gathered is that the videos available online are just not very good. Boring and/or ineffective online lecturing? Not a good solution for us.

So half way through my day yesterday, I was feeling really discouraged. What is going to work? I started to come to the conclusion that nothing was going to work, that there was no school-related scenario that we could come up with that would be the right fit for Maddie.

I talked to her in the afternoon about the choices we had.

1. Resume high school as prescribed. Cross that off now.
2. Online school. Not looking good.
3. Boarding school. You should have seen her face when I mentioned that. We both agreed that’s not a good plan.
4. Homeschooling. Ugh. Maybe.
5. Sign her up for the High School Proficiency Exam and be done with school for her. Set her up in some other activities like volunteering with animals and maybe taking a fun class or two. She lit up. That sounds more her speed.

Then I felt this wave of relief wash over me. We had given it a hell of a good try over the years. We have struggled since she was in kindergarten to figure out how to fit her special self into this fairly standard box. We have changed the box. We have try to massage the box into a different shape, just the right size and shape for her with a cushy interior and free lunch. But it just hasn’t been working. So perhaps it’s time to throw in the towel for good.

I know a lovely man who runs an animal rescue and research facility nearby, so I reached out to him about volunteer opportunities. Might as well get started on that.

I was feeling so good. I have accepted the situation and am now making progress (or at least expending positive energy) to make this all happen.

We looked online at Proficiency Exam sample questions and gave them a try. We agreed she would need to work on her writing skills so she would be well-prepared for the persuasive essay portion of the test. It’s in spring, so we would have plenty of time. And she agreed she could take instruction from me peacefully. Neither one of us wants to fight.

The other thing that happened yesterday is I learned I may need my very first root canal! And you know what I said when the dentist uttered those words? “Meh. I have way bigger problems than a root canal.” I was serious. It was if he said my jeans needed hemming or something equally trivial. Nowadays I notice when I have a problem and a solution is right at hand, I barely even register it in my brain because most problems are nebulous and their solutions seemingly impossible to determine. Like Maddie and school. And my chronic migraines. Nobody knows what to do about those either. So, a root canal? Small potatoes, people.

This morning I woke up to the sound of my alarm, which seemingly shocked me out of a coma. I pulled up my laptop and for some reason decided I’d better look up the California laws regarding school attendance. And there it was: A child under the age of 18 must go to school unless they’ve earned a diploma or passed the Proficiency Exam. FUUUUUUUDGE.

Could it have been that easy? Haha. Nope. I guess not.

So here we are on day three after the “I officially quit high school” declaration. I have been all over the freaking map. I guess it’s best to power through the ups and downs quickly and find that soothing plateau (if there is one) sooner rather than later.

Not that I’m there yet. I’m now thinking maybe I could homeschool her until that magical exam. We could work on preparing for the exam, mainly, and add in some fun activities. I have never in a million years thought homeschooling would be in my vocabulary, really, much less in my actual future.

So now I embark on that mission. How do I do it? I have no idea. But I’m working on it, which for me is always the best antidote to being overwhelmed and anxious. I pull up my boot straps and buckle up my tool belt and put on my thinking cap and all those other metaphors for getting to work, and I just do it. And, once again, hope for the best.

Also I get ready for my root canal.

About the time I gave up trying to get Maddie to school last month, I had a great discussion with my therapist. As usual, I was lamenting my dilemma and my inability to figure out what to do because, you know, no manual and such.

“I like to look at it like this,” she said. “If this were an academic study, do you think at this point you would get additional funding?” The point being the experiment had reached a pretty obvious conclusion, and that’s that my attempts to solve the problem weren’t working. You might even say failing.

I laughed out loud and gave an emphatic, “No.” Or maybe I said, “Hell, no.”

The data is in and regular high school isn’t working. That was the point. We tried it and it didn’t work and now it was time to move on and begin a new experiment. Or change the parameters. Or whatever.

And that was a hard pill to swallow. So I guess I just put that pill in my mouth and swirled it around for awhile and eventually spit it out. I didn’t intend to spit it out but when we met with the school last week, the new part-time schedule seemed to have potential, and then she liked the idea of prom and I thought, OK, let’s just get a few more bucks for funding and try this again.

But the experiment has now been shut down officially for lack of potential. Reality slapped me in the face (it’s soooo mean!) and we’re back to square one. And I’m both relieved (I can stop dreading next week) and disappointed. Now I have to start all over, knowing only what doesn’t work, and that is trying to get Maddie up and to school. Any school. At any time. I have a headache just thinking about sorting through all the information and making the best choice. Or, rather, the best choice we can figure out in the moment. It’s more of a guess, really.

When she declared her intention never to return to high school,  I informed her, “You can’t just stay inside and use technology all day. If you don’t go to school, you will have to learn some other way and get up and go somewhere on a regular basis. You will have to volunteer or get a job or something.” Naturally, that all sounds wonderful to her right now. For one, the conversation got her out of going to bed at a reasonable hour on a Saturday night, which she was complaining about already this evening. And she can stop dreading Monday, her proposed return date to school. She’s off the hook while we do our research, and that’s go to be a relief for her.

My reaction is less enthusiastic although truthfully I don’t know why I had been expecting anything different. Why in the world would she suddenly start going to school? I guess I thought since she went sometimes, if I only asked her to go sometimes, maybe it would work. I don’t believe my hope was rooted in logic, though. It was just a whole bunch of wishful thinking.

So now we’re faced with yet another unknown. Maybe she’ll do online school. Or maybe she’ll take the high school proficiency exam and we’ll all just be done with it. I’m not ready for that yet. She is too bright to quit school. Or maybe that’s not even relevant. Maybe her make-up is antithetical to school at this point, and she’d be better suited to some kind of work. Beats me.

So we keep trying, at least for now. We’ll see if we can figure out a Plan B and maybe a Plan C and then at some point we’ll have to re-evaluate what in the world we’re doing. Not that I don’t do that on a regular basis already.

I’m tired just thinking about it.

 

 

Something about writing makes me unusually philosophical. My tendency is to be very grounded in the here and now, although people tell me I must be more optimistic than I think I am or I wouldn’t get up day after day with even a glimmer of hope that things might go better that morning. Well, I suppose that’s true. But to be honest I don’t normally sit around and wax poetically about the gift of pain or blah blah blah whatever I said yesterday.

I really meant all that about appreciating the struggle. I really did. But then here’s what happened. I read over the blog post a couple times, made a few small edits, and closed my laptop feeling pretty darned good about myself. I mean, I can look at all the crap life deals me and focus on the good stuff! I can even find beauty in the actual crap! I hope I inspire all of you readers to do the same, even a little!

After I closed my laptop, I got on with the work of the day, making the surprisingly complicated salad I had volunteered to bring to Thanksgiving dinner with the in-laws, and getting everybody else up and showered and ready to go at a reasonable time. We were shooting for a 2:00 departure, so we all got to sleep in and have a leisurely morning. Around noon I started to get serious, though. The salad was under way, but Maddie hadn’t gotten up yet and even though we still had two hours before departure, I know how things go, so I paused mid-salad and went to her room. With my sunniest and silliest disposition, I hugged her and said, “Hey, time to get up and take a shower!” All smiles and enthusiasm. That’s how I always approach these things. Let’s have fun! I am trying to say every single time.

No reaction. Possibly a grunt. Maddie grabbed the blanket I had pulled down, and re-coccooned herself for the day. Oh boy, here we go.

Earlier in the morning I had a flashback to last Thanksgiving and the detour the Party City we had to take in order to get Maddie into the car. She wanted to go to that store so badly, and it’s sort of on the way to my in-laws’ house, so even though we INSISTED it would be closed on Thanksgiving, she really wanted to make sure (even though there was no answer when I called the store), so we said, “OK, we’ll stop there.” And of course we drove all the way through the huge, empty Costco-Target parking lot up to the front door before we confirmed it was in fact closed, and off we went to a really nice dinner with only about a 20-minute detour. It wasn’t easy, but we got it done. You do what you gotta do, right?

So even before my first attempt to get Maddie going yesterday, I was taken a bit back down to earth. This wasn’t going to be easy, I knew. The word impossible hadn’t entered my thoughts–yet.

After my first failed attempt to get her up, I realized I needed help. I still had work to do, including getting myself together, so I recruited my husband for the job. Even my son pitched in, actually telling her she was the only person he wanted to hang out with at Thanksgiving. I thought she might respond to that–after all, that’s a huge statement from your younger brother–but she had decided. And, as we know, when she has DECIDED, it’s done.

In that moment, though, I suddenly wasn’t willing to accept that. She had been at home doing absolutely nothing for weeks. I hadn’t asked her to get up for school. I hadn’t told her when to go to bed. She mostly didn’t get dressed. I don’t even know if she’s been brushing her teeth (doubtful). I mean, I really just took a vacation.

And after my husband had a discussion with her (of unknown substance), she still hadn’t budged.

So, I though to myself, I am sick and tired of her not doing a damned thing when she’s perfectly capable of more. And I resolved myself to making this thing happen. All she had to go was go hang out at another house. We even got to bring our dogs, so if all else failed, she (or I, for that matter), could just go out in the backyard and play with them.

So I insisted. And I insisted HARD. Give me that phone, I said. As if that ever works. I decided I was going to have that phone even if it killed me. I grabbed it. She pulled it away. I grabbed it again, and after a fair bit of wrestling, I emerged the victor. A glass of water somehow got involved and we both got wet. Something snapped in my neck and I had an instant migraine. But I had the phone.

Yay.

And then magically she appeared resigned to her fate. She headed to the bathroom for a shower. I volunteered to help her shampoo because she has a massive head of long hair and she’s just still not very good at it. I brought her a full set of clean clothes, too. This was happening! I will just give her the phone back once we’re in the car, and everything will be OK!

A little while later she turned up in my bedroom wrapped only in a towel.

“I brought you some clean clothes. Did you see them?”

“Oh, you did?” she replied meekly. And then her face scrunched up suddenly and tears began to flow. “I am not up for this!” she cried.

I didn’t know what to say exactly, but I could see she was in distress. “Go put some clothes on and we’ll talk about it,” I offered, trying to figure out what to do now.

And then, as she was at my bedroom door, she turned to me and now fully crying, she said, “I’m ashamed of myself for one thing. I haven’t taken my medicine in two weeks.”

My heart sank. Her medicine is Prozac, and she needs it. Obviously. A couple days without it is OK, but two weeks and you’re headed back to whatever brain chemistry made it necessary in the first place (side note: anxiety and depression are common in kids with Asperger’s).

And then I knew what I needed to do. I needed to let her be. I know what it feels like to be swallowed up and rendered helpless by those feelings. If you have never experienced clinical depression before, let me tell you, it is consuming and debilitating. So my heart changed in an instant. All I wanted was to make her feel OK. Forget about Thanksgiving dinner or whatever, just take care of my daughter. And she wanted me to stay home.

But I happen to have two other people in my family, including a husband who doesn’t spent much time with his family and really had his heart set on spending the day with his family–his WHOLE family, including his wife and kids. Maddie was now officially out of the picture, but what could I do? I had to choose whom to let down, basically.

My heart was breaking under the pressure of it all when I decided to chat with Maddie one more time. I knew she would probably just sit in her room and play Minecraft all day, so my being there probably wouldn’t end up being that meaningful to her, but still I had to check. I asked her if she would be OK, and she gave me the permission to go. I was so grateful.

Still, it was a rough day. I was in a terrible mood, and I think in reality we all were, my husband, my son, and I. There were multiple little squabbles–some escalating into big ones–throughout the day. I think we were all just upset the events of the morning. Sometimes our family life is magical, and other times it’s just too damned hard. We don’t get to do things the way other families do. Our vacations are tough (I’ll write later about our summer trip) and even going to a movie or Thanksgiving dinner seems to have become an inevitable source of battle in which even a “win” feels like losing.

Am I grateful for that Struggle yesterday? Not at all. It was terrible. Perhaps in the future I can lump it together with all the stuff I felt so grateful for yesterday, but today I just feel the wound. I’m sad. I’m traumatized, quite frankly.

And now I’m absolutely freaking out about trying to get Maddie back to school next week. I fear I’ve seen the future, and it isn’t pretty. And yet Monday morning I will wake her up in my silly, sunny way and hope for the best.

Actually, a lot of thanks. This day is the appointed one for verbalizing our gratitude. Luckily I’m thankful most of the time, or at least grateful, so it’s not hard to come up with a list. This list resides in me every day, even on days when I have a migraine (and occasionally ponder “why me?”) or get frustrated with Maddie or lament a new roof leak.

But today I’m not going to write a list. I’m going to focus on one thing: The Struggle.

Sometimes I wish things were easier. Well, a lot of the time I wish things were easier. At least as a parent of an autistic kid. But I believe I can’t compartmentalize the parts of my life conveniently into good and bad parts. My life is a whole, an inseparable mishmash of privilege and wanting, joy and pain, humor and sadness. I take all of these things as the entirety of existing, and I welcome it all. Including The Struggle.

We all have The Struggle in some capacity. Mine moves and winds it way across the areas of my life.  I struggle with eating too much sugar. I struggle with spending too much. I struggle with anxiety at times. I have struggled in the past with relationships and fear of failure (oh, that’s a big one) and wondering if maybe I wasn’t doing enough to “live up to my potential” (another big one).

At the moment, though, my biggest struggle is in parenting. When Maddie was little it was so much easier. She was clearly behind developmentally as an infant. We just waited and watched and didn’t worry too much, and when she was 18 months old we couldn’t just wait anymore, I began the work. For many years I just looked at The Struggle as work. Nothing to be alarmed about, nothing to fret over, just work. The work was hard and it was constant. Working with foam letters in the tub to help her develop her speech by putting one sound with another, picking her up every few steps when she fell down after finally learning to walk at 23 months, and wiping yet another bloody lip. Driving her to this appointment and that appointment and then that other one. Calmly responding to her screaming attempts to communicate. Then teaching her sign language as a way to get through the toddler years. And then driving to her to the special two-hour preschool class that was 30 minutes away and trying to figure out what to do with my one-year-old son for those two hours rather than driving home and back out again. It was a lot of work, but it was simple. I knew what to do and somehow figured out how to do it. It was exhausting and sometimes even a bit overwhelming, but I could do it.

When Maddie began elementary school, everything got so much more difficult, and as the years have gone by, more and more complicated and challenging.  I was having to try to explain my mysterious kid to her teachers, who, although they wanted to try, didn’t seem to get her at all (with a couple of notable exceptions). Even the resource specialists, who work with these “different” kids, were puzzled. They would literally look at me for answers, and I would just shrug. Were they not the experts? I would have to listen to these people refer to her as “odd” or “stubborn” and hold back tears until the meeting was over.

And then when she was in third grade, the shit hit the fan. While other girls her age were getting sassy and emotionally more complicated, Maddie was struggling more internally with her emotions. She was unable to identify exactly what she was feeling, which made the already difficult task of expressing herself beyond her capabilities. So she started to hit me. Wail on me, really. An unrelenting barrage of punches and grabs from a startlingly strong kid. If I said no to something or tried to take something from her, I would see the look on her face change and I knew it was coming. It was as if a switched turned on and she had become someone else, and then she unleashed. She was little then, fortunately, so I wasn’t really afraid for my safety quite yet, but it’s beyond alarming to be beaten by your own child. I would beg her to stop, I would try to get away, she would grab my clothes and not let go. A few times she bit me. Hard. It was devastating. I loved her so much, and I knew she was struggling herself, but I was unequipped to handle this. It was like an out of body experience. I was in such disbelief that I’m still not sure how I felt. I would cry, but I had to forcibly conjure up tears in hopes that she would see them and maybe the spell would be broken and the whole thing would stop.

Several years of the occasional outburst later, Maddie doesn’t do that anymore. And I don’t even think about it much. Maddie has become calmer. She remembers those days very clearly and knows she has changed. She is much more connected to her emotions and has learned how to communicate them more appropriately and effectively. I sure am grateful for that!

Am I grateful for the biting (I had some whoppers)? Uh, no.

But I am grateful for all the work I have had to put into raising Maddie for a simple reason: I am a better person for it. I have developed the patience of a saint. I have experienced intense love and empathy in the worst moments possible with the object of that love. When I tell my kids there is nothing they could do that would make me not love them, I know that is true. What if I killed someone? they ask. Well, I would be so sad, but I would still love you, I say. And I really do know that’s true.

The Struggle has developed and honed my empathy and my ability to look for the best in people, to look beyond their worst aspects and love them anyway. I’m not perfect at that by any means, but I know I have it in me. But I can still do better. Perhaps that will be my New Year’s Resolution.

As I typed the words above (privilege and wanting, joy and pain, humor and sadness), I noticed something. The words that sing out to me most are privilege, joy and humor. The others fade into the shadows. They are there, to be sure. Especially the pain part, what with the never-ending migraines and all. It’s all there. But what I try to do is have gratitude for it all. I try to revel in the joy while recognizing the gifts of the pain. I try to enjoy my privilege while understanding the benefit of lacking some things (I don’t want for much now, but my childhood and early adult life were lessons in austerity). I laugh a whole-body laugh at the humor, and know that sadness means I loved and lost, or dreamed and failed, or cared so much it hurt. And those are things to be grateful for, the loving and dreaming and caring.

May your day be filled with thankfulness for all the aspects of your life, the easy and the difficult, the fun and the miserable, the richness and the yearning. And may this day, and every day, bring to you the madly unconditional love you all deserve.

Hello dear readers! I have been neglecting my blog for far too long. When I first began writing, I had so many years of bottled up thoughts and emotions, they just came pouring out. And then I was afraid every day would be the same: Today she went to school! Bleh, today she didn’t. And that’s boring for everybody. I also think I needed some time away from dwelling on it all. And then I became obsessed with the election, so in an ironic turn of events, I ended up trading in one struggle for another, but the one I tried to put aside was much more personal, so it was kind of a relief to turn my energies outward, away from my inner struggle, away from my home and my own life, and toward something greater than myself.

And while I continue that path of looking further outward, I am faced once again with the same old thing: A certain somebody isn’t going to school.

School began in August, and as usual I was hopeful yet realistic. That’s me in a nutshell. I know what to expect most of the time. I try not to be pessimistic, but rarely am I overly optimistic. Maybe that’s a survival skill because the less you expect, the less disappointed you’ll be–at worst–and the more delighted you might be when the outcomes exceed those expectations.

It’s a good thing, too, because let’s just say I haven’t been “delighted” at all this year.

School started on a Wednesday in August. Maddie got up on time and I got her to school BEFORE THE BELL RANG. I’m not sure if that’s happened a single other time in the last two years. And it was so nice to drive up and have people waiting there to shout “MADZ!” enthusiastically, open her car door to let her out, and greet our wiggling dogs who accompany us every day on the trip to school.

She arrived home in good spirits after a day well spent with old friends. An excellent way to kick off the year.

And then Thursday came and she wouldn’t get up. Friday, either. Nor the next Monday. Or Tuesday. Finally I got her to go on Wednesday. And that is how the year started for us. Disastrously.

It was right about that time that I got a migraine. I get them often, and I have for years. I have a special migraine medication that sometimes works, but more often it doesn’t. Nothing else I have tried works, either. I usually just have to suffer and then maybe I’ll feel better after I sleep. And I actually hadn’t taken my Maxalt for months. It was sooooo nice not to think about migraines for a chunk of time. And then one Sunday, there it was. And then it was there Monday. And Tuesday. And Wednesday. And for the next nine weeks, I had one almost every day. All day. I went to the urgent care clinic twice for morphine shots. They didn’t work. I saw my neurologist twice and she sent me home with a grocery bag full of drug samples. I had massages and saw my chiropractor. Nothing worked. I’ve tried acupuncture and even a special injection between my vertebrae at one point some years ago, and those didn’t work either. I’ve also tried Botox all up and down my back and neck and all over my face, and all that did was give me a two-week migraine. So I didn’t even bother with any of those this time. Mostly I just suffered. Not mostly. Completely.

But every day I still got out of bed at 6:30 a.m. with the intention of getting Maddie out of bed and off to school, including the miserable (when you have a migraine) hour-long roundtrip. Some days she went, some days she didn’t, and eventually I started to lose my resolve. She could most certainly see I didn’t have much energy to put into those morning battles, so as the headaches continued, when she shook her head or burrowed back into her covers for the third time in the morning, I just went back to bed.

At one point my therapist said she was worried I was going to have a heart attack. “Me too,” I replied. And I meant it. This was getting serious.

So one morning about two weeks ago, after a few weeks of a near-perfect failure record, I looked at Maddie and said, “It seems to me you don’t intend to go to school.” And she knew what I meant: not just that day, but really ever.

“Nope,” she replied casually. Well, okay then.

When I tell people that story, they typically offer their sympathy and shared horror. But to me it was a relief. Maybe I could quit fighting. I wouldn’t have to wake up early every morning and head into battle knowing I would most likely be defeated. Yet another exercise in futility awaited me every morning, and with it, I suspected, a migraine.

So for the past couple of weeks, since that brief but powerful discussion, we have both had a vacation. I just let her do whatever. She would sit in her room, headphones one, belting out her favorite songs, oblivious to the world around her. I got to sleep in a bit and wake up to a more normal and healthy existence, one with tasks and challenges to be sure, but not the inevitable swim upstream…into a metaphoric wall.

And guess what? The migraines have subsided a bit. I feel more relaxed. I’m sleeping better. I still have investigation to do and doctors to see (my neurologist actually said the words, “There’s nothing more I can do for you” and referred me to a special migraine group at the hospital), but I have certainly had some level of relief.

Stress always has a way of getting to me (and probably you) one way or another. For me it tends to bury itself deep in my psyche and then manifest in a physical way. Like the time when my kids were small and they were screaming in the back seat of the car, and I thought to myself, “Wow, I’m remarkably calm!” And immediately after that thought passed, my eye started to twitch. Sure, calm on the outside, not so much on the inside. If you know me, you know that. I’m damned calm. I fool even myself a lot of the time. Until the eye-twitch or the stomach problems or the migraine. Then I know something has to change.

Alas, this little vacation is coming to a close. We are not giving up on Maddie’s education, not quite yet. There are so many things yet to try. I’m not looking forward to trying, especially, because of my annoying grip on reality. But here we go anyway.

More on that coming soon!