school refusal

Small Victories: A Birthday Story

Chris Irvine, Parent Coach2 Comments

Wednesday Maddie turned 17. Sounds so grown up. Most of our friends with kids the same age spent the last two school breaks touring the east coast and Southern California colleges. They’ve spent money and time on SAT prep, college counseling,  and just getting through the eternally stressful junior year. Some are launching their kids in the fall, anxiously counting the days until their babies fly the coop.

Yesterday, on the 17th anniversary of her birth, Maddie showed me the insecure young person inside and the socially savvy young lady that also resides within her. I never know what side I’m going to see.

A few weeks ago Maddie’s wonderful tutor Kim suggested they see a Giants game together to celebrate the end of the school year. A look at the Giants’ schedule pointed them to a day game which happened to fall on Maddie’s birthday. I wanted Maddie to do whatever made her happy and at the time it seemed like a great idea. Looking back I think I was in denial at best, and just straight up stupid at worst. This was in fact a mistake whose full terribleness would  not rear its ugly head until that morning.

First of all, this plan involved me having to wake Maddie up. It has been established that this is to be avoided whenever possible. Waking her up to go somewhere or do something, even something ostensibly appealing, is fraught with emotion and fear for me. I think I fake it rather well, but even a failed first attempt sends tensions throughout my body and I feel my heart clench. I breathe deeply to remain calm, but I’m immediately almost ready to give up. The problem that morning was that I had bought ferry tickets, so the arrival time mattered. The Giants game ferry really does complete the experience, but it adds significant time and eliminates flexibility. Anyway, I feel like this alone doomed this notion to failure.

Second, Maddie was sleep deprived. For some reason sleeping didn’t go well the night before. Maybe, as it turns out, she was anxious. I also know she was up at 3:00 a.m. because I, too, was up at that time searching for a cough drop when I felt a light tap on my back (DON’T EVER DO THAT AGAIN! I said). She was mid-allergy-attack and looking for a Zyrtec.

So at the start, we had two strikes against us.

And then, the tears. She was tired, she said. She was trying so hard to power through, but, tragically, on her birthday, she wasn’t able to cope. Her tutor, Kim, used her magical skills to try to turn it around. And in fact there was magic because although Kim ended up leaving our house, alone, in her Giants gear, there was a breakthrough. Maddie realized she just didn’t feel comfortable doing this new, out-of-the-norm thing with her tutor. She would go to the game, but only with me. The tears were from fatigue, to be sure, but also from insecurity about this new situation. This girl whom I think of as fearless isn’t in fact fearless. She’s often so brave, but the sense of being able to be in the world without her safety net (me!) is sometimes fragile.

So in her usual way, she inhabited a young child and a mature person in the same moment. Her anxiety came from insecurity, fear of the unknown, fear of feeling untethered, her inability to imagine herself through the what-ifs into a mental picture of success. And yet (and this is even more significant me) she was able to access her feelings and the reasons behind them, and then ask for what she wanted. Such a huge achievement for this kid!

And so, as it should have been all along, I took my daughter to a Giants game for her birthday. Once we arrived at this conclusion, I let go of my stress and just went with it. I ditched my long list of errands, cancelled a salon appointment, packed up my sunscreen and a hat, and off we went. It was too late for the ferry (the ship had in fact sailed by that point), so we hopped in the car and headed across the bridge. The fretting was over. Time to jump into this surprise of a day.

The Giants were terrible. But the day was beautiful and due to a lack of forethought on my part, we had tickets behind the opponents’ dugout, which put us in a sea of Kansas City fans. And that, my friends, turned out to be great! As the numbers on the scoreboard became more and more lopsided, the crowd around us erupted in cheers. They were having fun, and so were we. The couple next to Maddie was visiting California from their home state of Missouri, following their beloved baseball team around the state. They were so friendly, offering to buy Maddie treats for her birthday and engaging in conversation. We talked about all of the wonderful things you can do here in San Francisco, and Maddie asked, “Have you been to Muir Woods?”

Well, that might not seem like a big deal to you, but it sure was to me. Such an appropriate and normal thing to say! She was engaged and conversational! And she asked a relevant and meaningful question, given that we live not far from there. And when the husband repeatedly and enthusiastically offered to buy her a frozen lemonade in honor of her birthday, she politely and gratefully declined several times before finally admitting “Lemonade isn’t my thing.” I felt like a million bucks. My daughter who struggled in the morning, who seemed like a child afraid to be too far from her mother, was out in the world acting her age. Only a parent of a special needs kid would feel like jumping up and down because their kid said something appropriate.

Much to my surprise, we stayed for the entire game (well, almost). It was hot out there in the sun, and she hadn’t really been paying much attention to what was happening on the field (really, who does at a baseball game?), but although I repeatedly informed her that everything was up to her, she was happy to stay. We bought at Pence jersey (“I don’t know who any of these guys are,” she said when shopping for jerseys. “Then just pick a number you like,” I said.) and a big orange foam finger and garlic fries.

In the end, I would call this day a success. But it wasn’t easy. Sometimes I’m reminded in no uncertain terms of the challenges my daughter faces. Sometimes I’m not reminded but instead learn something entirely new. My brave, strong kid can still be a frightened young child inside. She can still struggle to know what she’s feeling, and when she is able to not only identify it but also verbalize it, it’s a small victory. I can’t even think about college, or next year, and sometimes not even tomorrow. It’s enough, quite often, to be surprised minute by minute.

Recently my sister recounted a moment with her teenage daughter. They are both musicians, and my sister has been playing more regular gigs. After a recent performance, “You inspire me,” her daughter began, and my sister’s heart swelled with pride. “To eat ice cream,” the sentence concluded.

“That was a rollercoaster of a comment,” I replied.

And that is precisely how I feel. A single moment with Maddie, a single utterance, can encapsulate a high and a low, both a pleasant surprise and a slap-in-the-face reminder of the challenges we face.

But still, as of yesterday, my daughter is 17. That is 17 years of her becoming this complicated young lady, and 17 years of my own growth into the mother, and person, I am today.

Separated at Birth

Chris Irvine, Parent CoachLeave a comment

When Maddie was a toddler, and just becoming able to express all those thoughts she was having thanks to those finally-developing fine motor skills in her face (yes, speaking is all about fine motor skills!), she began to ask me every single day, “Is there a party today?”

She had decided birthday parties were her passion. A truly good day would involve a party. She wasn’t able to say a whole lot, really, so I couldn’t be sure what exactly what it was about parties that so fully floated her boat, but clearly she enjoyed being in a social atmosphere. Many kids on the autism spectrum are paralyzed by anxiety in groups, while some just scoot off to the side in quiet avoidance, but not Maddie. She may not have been playing on the same level as the other kids, but apparently she liked them anyway. A lot. Or maybe it was the cake.

Maddie has never been a particular garrulous person, either, but when she has something to say, it’s usually either interesting or insightful or funny (except when she continues to repeat that funny thing long after it lost its humor). As an elementary student, she would have usually one or two friends, typically kids who had some social challenge or other. I remember her kindergarten teacher, whom I liked very much otherwise, saying, “I don’t really see her as (and I paraphrase here) a popular kid.” Wow, I thought, OK. Not everyone can be that kid. I have a feeling the teacher was that kid, and perhaps her four children were too, so maybe a child who’s at the center of things is what she expects or sees as necessary for her definition of success. Maddie would be on the fringes, I suppose she meant. At the time all I knew was her milestones had been delayed, but she was a cute smart kid who was drawn to kids who struggled, and who was having a challenging time adapting to kindergarten as evidenced by a few episodes of sitting under a table screaming (in response, I believe, to her best friend’s difficulties) and an occasion or two in which she hid at school and nobody could find her for awhile. Would she ever be in the center socially? I doubted it, but it seemed like a ridiculous thing expect or even think about.

She has never had much of a social life, though. She had limited numbers of friends as a younger kid, for one thing, and those friends weren’t particularly social themselves. But even now, since she has grown in confidence as well as social skills, and is better able to socialize, she shows little interest in nurturing friendships outside of school. There is the exception of her cousin, however, the only person she longs to spend time with.

For years I would ask her daily who she ate lunch with. “Do you want to invite them over on Saturday?” I would ask. Or “I could pick them up and take you both to a movie if you want.” Or “Why don’t you text him and see if he wants to play that video game you both like?” A shrug of disinterest inevitably followed. It seemed like she ought to want to hang out with her peers, but apparently she didn’t. She still doesn’t despite being isolated at home since she quit high school.

And then something happened. I have an old friend whom I hadn’t seen for probably 13 years. We were never close as we were connected via our husbands, who also weren’t especially close, and many years ago she had divorced and moved away with her young daughter. “Suzi” moved back to the area a few years ago, and although I hadn’t seen her, we had been connected on Facebook and she had been reading my blog. After reading about Maddie’s LARPing (live action role play) success at winter camp, Suzi was moved to action. It turns out her 14-year-old daughter Caitlin has similar interests, not to mention a few shared personality traits. Suzi asked if perhaps Maddie would be interested in meeting Caitlin.

Maddie has historically befriended boys far more than girls, although girls like her very much. She literally could not be less interested in things like makeup and clothes and hair and nails, as evidenced by her avoidance of such basics as showering and wearing clean pants, and she’s not interested in talking about boys even though she’s had her share of crushes. And forget small talk. She wants to talk about Minecraft and LARPing and the Assassin’s Creed video games and Star Wars and anime. Otherwise, BOR-ING!

She has also announced, with conviction, her opposition to what she calls “forced friendships.” Because of that she shunned this wonderful program at her high school called PALS in which select volunteers from the mainstream student body are paired with special ed students for social activities including a weekly lunch and a monthly party. It’s an awesome program. They have to turn away volunteers! But Maddie rejected it outright because, she said, of her total disinterest in those “forced friendships.”

So when I mentioned this new potential friend to Maddie, I wasn’t sure what she would say. Luckily I said the magic word (LARPing!) and a match was made. Suzi and I agreed on a time for them to meet and Maddie was absolutely giddy for a week, making all sorts of plans and repeatedly asking me about this mysterious Caitlin.

And then the moment arrived. Suzi and Caitlin knocked on the door and I opened it to welcome them. They walked down our entry hall and then Maddie and Caitlin met eyes. They stood there for a moment taking each other in. I looked at Caitlin, similar to Maddie in height, also wearing glasses, and remarked on her soft and interesting sweatshirt.

“Is it a dragon?” I asked.

“It’s Night Fury. From ‘How to Train Your Dragon,'” Suzi said. “She found it on Etsy.”

“Oh, I am very familiar with Night Fury,” I said. I nodded sideways towards Maddie, who happens to have a rather large stuffed Night Fury herself from many years ago when the movie first came out. She was obsessed. She still kind of is.

As the girls stood there looking at each other, I was just astounded. Here, practically under our noses all this time, was Maddie’s potential soul mate.

“Separated at birth?” I laughed to Suzi in amazement.

I was recovering from the flu, so Suzi graciously took the girls out to dinner after she and I caught up on the many years since we’d seen each other as Maddie and Caitlin huddled in Maddie’s messy room and, apparently, talked and talked and planned and planned. I don’t know if I’ve ever seen Maddie like that before!

I do believe a friendship has been born. And that’s really all you need: one good friend. My son has a nice group of long-time friends, and Maddie has struggled to have friendships outside of school. So seeing the potential friendship forming before my eyes is a beautiful thing. It’s been a long time coming! Separated at birth, perhaps, but reunited at long last.

Let the LARPing begin.

The Art of Acceptance

Chris Irvine, Parent CoachLeave a comment

One of the many concepts I have struggled with and contemplated over the years of parenting my autistic child has been the difference between giving up and acceptance. I have come to the conclusion that it’s simply a matter of mindset because the outcome of giving up and acceptance is the same: you recognize there is a reality you probably can’t change, so you put your energies elsewhere.

So many times I have felt like I was giving up. Or perhaps just giving up too soon. I was hard on myself, too. Remember my failure to chart? I felt so guilty when every single professional we worked with, including psychologists, psychiatrists, and occupational therapists, insisted that making reward charts was the answer. THE answer. It never was the answer for us, and I knew it. But I would often try for a week, and then just bail out. Was I giving up? I didn’t know. I just knew it wasn’t working. It seemed futile. Maybe I wasn’t trying hard enough. Maybe I wasn’t organized enough or disciplined enough. Maybe it felt too difficult for me (it is true it’s not in my nature).

I realized at some point, however, that it wasn’t my failure. Charts were meaningless to Maddie. So I could release myself from guilt because really what I was doing was recognizing what was true (acceptance!) and acting accordingly. Maddie didn’t give a shit about a reward chart and she never would, so why keep trying? I could release myself. And guess what? That is not the same as giving up!

I also remember deciding there would be no more fights about homework. And in our house, that meant no homework at all. It wasn’t going to happen without a lot of pushing on my part, and often my energy was wasted. I really should have made that decision when Maddie was in first grade, when homework first came into our lives. What should have taken ten minutes (an appropriate length of time for a six-year-old, if they absolutely must have homework at all) took a full hour because of the Asperger’s (and with it, ADHD) I didn’t know she had. I don’t know why I didn’t just tell the teacher, “Look, this is killing us.” I now realize years later that she would have most likely said “No problem.” But I was fighting it, swimming upstream in a deluge, losing my mind over something that was at the time both impossible and unnecessary. If only I’d had the wisdom of acceptance back then. Or the next year, or the next year, or the year after that. And on and on.

Finally, after more than eleven years of this struggle, two weeks ago we began the new phase of Maddie’s education. She hasn’t set foot on a campus for months, and in fact she took a couple months off to do whatever the heck she wanted. Which, by the way, was awesome for me, too. I realize parenting involves occasional conflicts with your kids. You will inevitably be at odds at least once in awhile. But the daily grind of morning-long battles, fraught with anxiety on both our parts, was just too much. For both of us. I got to say at least a temporary goodbye to migraines. And, it turns out, Maddie was able to to go off the Prozac she’s been taking since she was nine.

I noticed a few days ago that her prescription bottle was still in the Ziploc bag she had taken to camp last month. She had been a bit less reliable with her nightly medication since she quit school. I was no longer managing my teenager’s bedtime, which involved watching the clock, telling her five times to brush her teeth, cleaning off her bed, filling her water bottle, reminding her to take her medication, and hanging out for a bit (I do miss our nighttime conversations) before turning off her light and saying good night. So I wasn’t aware she had simply stopped. Fortunately, unlike many similar medications, you can apparently just stop cold turkey without withdrawal symptoms.

After I spotted the neglected bottle, I casually asked Maddie if she had been taking her medication. “No,” she said, matter-of-factly.

“I thought so. Are you feeling okay?” I asked.

“Yup!” Clearly she was feeling better than OK.

“If you start feeling any anxiety or if you feel a little depressed, you need to tell me, okay?”

“Yup!” And I know she will. I’m so grateful for that.

And so here we are. Her decision to quit school relieved me of that two-month migraine and apparently freed Maddie from the anxiety, in particular, that had been plaguing her since the fourth grade. Seven years later (SEVEN YEARS!), we figured out together that “giving up” on school was really just accepting that it wasn’t working, and then making the choice to do something else, and rather magically, we are both okay. After all these years of struggle, all these years of meetings and IEPs, and then no IEPs, and then IEPs again, after traumatizing experiments with ADHD meds, after all those fights and struggles and tears and digging in on her part and frustration and yelling on my part, and frustration and even the occasional physical outburst on her part, and my trying and trying and feeling like a failure, and wondering what I should do, and then trying something and finding that doesn’t work, and trying something else and then something else, and feeling defeated and exhausted and afraid and discouraged, Maddie and I found acceptance.

And so, for now, we are free!

The difference between giving up and acceptance, it turns out, is in your feeling of power. When you give up, you are admitting defeat. The thing, whatever it is, has won. And so you shrug and say, well forget it. With acceptance, you are making a choice. You are not a victim. You are in charge. YOU say, I have decided this thing, whatever it is, is happening, and you find a way to embrace it, and hopefully, to make the best of it and find a new path to peace.

Still Looking for My Inner Bad-Ass

Chris Irvine, Parent Coach3 Comments

It’s the beginning of a new year. And the beginning of a new era. A school-free era for my kid. Which is great. But it’s also an era of exploration of sorts. Hmmm…now that I see those words I realize the exploration era isn’t new at all. It’s about 16 1/2 years old right now. And it’s not really getting any easier.

One of the areas I have had to explore is within myself. And that is my ability to ask for help. Oh man, do I suck at that. It is not a point of pride that I’m like that. In fact, I think it’s a deficiency. I mean, isn’t it a bit superior to think that I’m to be the helper only? That perhaps I’m beyond needing help?

I have explored this in therapy. For years, when the stress of the mornings (and the afternoons and evenings and nighttimes) was about to break me, my therapist, in her infinite wisdom, advised me to hire help. If a had a person in my home to do the mundane stuff, it would free up my energy to do the hard stuff. And perhaps I might not actually GO CRAZY. We had that conversation so many times, and I would nod my head in agreement. “That is such a great idea!” I would say. “Yes! I’ll for sure look into that!” But apparently I didn’t mean it because by the the time I was closing to door to her office and heading home, I was thinking, “Nope.”

I know where I get this from, Mom. My mom is one of those bake-a-lasagne-while-pouring-concrete kind of moms who also sewed our clothes and mowed the lawn and painted the outside of the house and made dinner out of nothing and gave us every last dime she ever had to make us happy. But would she ever ask for help? Uh, nope. The reigning philosophy at our house long preceded Tim Gunn: Make it work. Do with what you have. You can do it because you just have to. That’s what a strong person does.

So here I am. I’m a grown woman. I not only don’t mow a lawn, I don’t even have a lawn. We have a gardener who comes twice a month for some basic yard clean up. I knew by the time I was seven that sewing machines and I were destined to be enemies. (In fact, at some point my mom put my sister and I to work simply cutting out the patterns pinned to the fabric, and I was so bad at that, she told me to forget it). We have a weekly house cleaner who does all the really big stuff (although I certainly spend a ridiculous amount of time doing laundry and cleaning the kitchen and generally trying to keep my house from being a pig-sty, emphasis on the word “trying”). For years, though, I felt so weird about it that I would help our house cleaner when she was here. I still do a little bit, telling her to forget this room or that, or don’t worry about the floors she didn’t get to today, or here let me play with your kid while you’re working.

In comparison to my mom, my workload is pathetically easy. And yet still I am overwhelmed to the point of occasionally falling apart in a big way. And I still won’t get help. There is just something inside me that expects that I can do all the parenting because that is how it’s done. I should be able to handle everything with my kid. That’s my job! And if I can’t, perhaps that means I’m not good enough. I would never think that about anybody else. In fact, I’ll be your biggest cheerleader if you say to me, “Ya know, this is too hard for me. I’m getting help.”

“Good for you!” I would say. “We all need help!” And I would mean it.

Perhaps even more of a roadblock in getting help for Maddie has simply been a lack of knowledge of what in the hell to ask for. I add those words quite intentionally because it’s the most humbling, frustrating, regrettable thing to find out, after years of struggling, there was help available that I could have asked for if only I had known about it. And that happened to me recently.

In preparing to move Maddie from her public high school to a home school environment, I sought out the professional experience of my friend “Carol.” She is an experienced behavioral therapist and business owner who works closely with schools to provide support and interventions for kids like Maddie. She is a not only a terrific person but also a great resource that I should have hired the minute I met her. (Quick advice for parents of special needs kids: Get yourself a professional advocate!)

Shortly before winter break, I received an email from Maddie’s teacher/case manager suggesting that I immediately un-enroll her from school so that she would receive Incompletes rather than F’s on her report card. Okay, I thought, I’d better do that because that’s what I was told to do. A week went by and I hadn’t made the official declaration because I hadn’t yet put an alternative education plan in place. I wasn’t sure what to do or how to do it yet, but after another reminder email from that teacher, I set about writing a long letter explaining why we were taking her out of school. I wanted the teachers and staff to know I appreciated everything they had done, but that, due to Maddie’s difficulties getting to school and because of the recommendation from the teacher that we officially un-enroll her, we were going to educate her at home.

Still somewhat apprehensive about making it official, I forwarded the draft of my letter to my professional friend Carol. I wanted her feedback on the letter, particularly since we had discussed hiring her to create a home school program (even though I kept thinking I could do it myself because I ought to be able to do it myself).

“Whoa!” she said. “Because of her IEP she should absolutely not be getting Fs.” She was a little bit angry, I sensed, because she believed Maddie’s case wasn’t being handled properly. She also wanted to know why more interventions hadn’t been attempted at the source; why hadn’t they sent somebody to our home to motivate Maddie to get to school? Why hadn’t she met with a counselor or psychologist to get at the core reason for her attendance problems? Why hadn’t there been a plan in place to address these issues?

Crap. I could have asked for all that? Those are things they can do? 

I know there are other parents out there who raise their voices and demand what their kid needs. I honestly don’t know how to do that. So feeling ineffectual in that way, I asked Carol to add to my letter wording that would properly and very specifically address what she thought I should ask for now: a specific plan to address the core issue of attendance and a clearly delineated academic program that would allow Maddie to graduate. I tried to write it myself, but the words just didn’t seem right and I felt as though I wasn’t even sure I knew what I was requesting.

So Carol, my friend and fierce advocate, using the voice she knows how to use working with schools and insurance companies to get what her clients need, was clear and unapologetic in her requests. I edited it all a little bit, softening the edges to better suit my own style, and sent it off with my fingers crossed.

And shortly after that I received a response. I had clearly offended her teacher, who seemed to take a rather defensive tone. And I immediately regretted my letter. I really hate offending people, for one thing (which is part of my problem, I guess). And I felt shitty because it seems that somebody else can acceptably use a more powerful voice because it belongs to them, but when I adopted this more demanding demeanor, it somehow came across as ungrateful and perhaps inauthentic. I fear I set this whole thing up by always being so undemanding and flexible, and then when I suddenly get all fierce, people don’t know what to make of it.

So I turned around with a sort-of apology, saying I hadn’t meant to be confrontational but instead I was trying to figure out what to do with Maddie and that I have always found it hard to know what to ask for and how to ask for it. (As of now, she is not un-enrolled and we are supposed to meet in January. Also I now have a clearer idea of what we’re working toward.)

And that made me feel better in a way (I nipped the conflict in the bud! Phew!) but worse in another. Here I was simply asking for something very specific for my child and pointing out that despite repeated requests for help I still hadn’t gotten her what she needs, and it was as if I was trying to pick a fight. And the last thing I wanted to do was start a fight. On the other hand, maybe that’s what I ought to do sometimes. Sometimes, it turns out, you really do have to be the squeaky wheel. Or the bitch. Or whatever.

So here it is, 2017, the year I will turn 50 (!), and I still struggle with asking for what I need. I even found the courage to ask for it and I ended up apologizing. One thing has become clearer as I write this: the ability to ask for what you want and to demand what you deserve is a strength, not a weakness.

Perhaps I think I need to write this on a some post-it note and stick it on my bathroom mirror:

“Use your voice and don’t apologize for it.”

And, perhaps:

“Be kind to yourself.”

How to Be Awesome

Chris Irvine, Parent Coach3 Comments

Yesterday I picked Maddie up from the camp bus. She has gone to winter camp for three years, and as you may know, the planning for winter camp begins the moment she leaves summer camp. Summer camp ends with a rest and then plans for winter camp. Basically this kid lives for camp. If she could do anything full time, it would be camp. Camp, camp and more camp. Thank goodness for camp! Have I mentioned she likes camp?

The first time she went to sleep-away camp, I was a nervous wreck the entire week. Instead of relaxing and enjoying having only one kid for a few days (it is SO MUCH EASIER), I lay awake in bed chewing my nails wondering if she was she ok emotionally without her mom. Would she be lonely, could she make friends? Would the kids be nice to her?  Did she need to call home? What if she got sick? Can she eat the food? What if she’s sad???

And then on pickup day I discovered what a magical place this camp was, and the only time I worried again was her first winter camp when it very suddenly became freezing for exactly the days she was there. I ordered wool socks from Amazon and overnighted them to camp. She thought it was weird. But I was glad I did it.

This session, though, I was a tiny bit worried. She had put so much effort into preparing something and I was afraid her heart would be broken.

Maddie’s current obsession (and I do not use that term lightly) is a video game called Assassin’s Creed. I don’t play video games at all, but I have seen enough of this game to understand its appeal. It takes place in various historical periods, and the visuals and costumes (HELLO COSTUMES!) are magnificent. She and my husband have declared Assassin’s Creed “their” game recently, and that’s how they connect. And his big gift to her this Christmas was an elaborate costume of the hero from the middle ages.

A few months ago, Maddie had an idea for camp. (Hey, thinking ahead!) Each cabin is charged with naming itself and creating a cheer. This is a creative bunch, given that it’s a performing and visual arts camp, so they always come up with something inspired. And inspired Maddie was. She wanted to name her cabin after one group in the video game and hope that the cabin of one of her guy friends would be their foe. In preparation, she bought 20 tee shirts, 10 black and 10 white. She made out of paper and duct tape (surprise!) emblems matching the groups and attached them with velcro. She made two incredible flags as well, again with the duct tape.

It was great to watch her pour her passion and creativity and time and effort into a project. I had nothing to do with it other than the requisite trip to Party City to get supplies. But all the while in the back of my head, I kept thinking this might not go as she planned. I didn’t want to dampen her spirits, but I also felt the need to prepare her for the possibility that the other kids aren’t so enthusiastic about Assassin’s Creed.

“I just don’t want it to ruin your camp experience if the kids don’t go for it,” I said. It hurt my heart to say it, but it was necessary.

“It won’t,” she replied. “I’ve gotten better at that.”

Well, indeed she has. And her self-awareness was startling and a bit of a relief.

All week I kept wondering how it was going. Perhaps her preparation would have been met with such appreciation that people would feel obligated to participate Or maybe there’s a whole teen cult of Assassin’s Creed among the drama set that I don’t know about.

Yesterday she arrived across the bay on the camp’s bus. When I drove up to retrieve her, she was already off the bus and waved me down. She looked great. Relatively clean, in her nice warm coat, hair in a pony tail, happy and relaxed.

After we threw our arms around each other for a long hug, a young lady introduced herself to me. “I’m Otter, Maddie’s counselor.” (All the counselors have nicknames, like Awkward and Sparkle and Tiny.) “We had a great week!” she said.

“Well, Maddie LIVES for camp,” I said.

“We know!” she said. Of course they know!

“She did a lot of preparation,” I said, stating the obvious.

“Yes, she did!” said Otter.

I turned to Maddie. “How did it go?”

“Well, it didn’t go like I expected. It turned out even better!”

I had been so afraid to ask her about the Assassin’s Creed thing, thinking perhaps if it had been a huge disappointment, that might not be her most desired topic of conversation. But now I had the opening to ask.

And this is how it went: The kids didn’t want to adopt her cabin themes. I didn’t ask for the details because it didn’t seem to matter. But what did matter is what came next. Instead of feeling rejected and disappointed, she decided to put all of her work to use in a different manner: She approached the camp director and suggested some LARPing (live action role playing). LARPing does involve costumes but it mostly involves particular types of battles and games. So she helped organize the whole thing and they rounded up pool noodles for weapons. There was a huge themed battle with those tee shirts and a big game of capture the flag with those great flags she made, and she got to not only enjoy all the fun but experience the rewards of her flexibility, creativity and leadership. I believe she felt positively heroic at that point. Apparently the LARPing was a huge success, and they all had Maddie to thank.

So she will begin preparing for next summer’s sessions. We’ll wash the shirts and she’ll make some more (a few kids kept theirs). And I suspect she’ll have some other ideas, as well, to help enhance the LARPing experience.

These moments are the glimmers—no, flashes!—of hope for the future. I don’t know what exactly Maddie will do, but what I do know is this: She is passionate and creative and flexible and she’s growing up and changing in all the best ways.

Plan A

Chris Irvine, Parent CoachLeave a comment

Yesterday my husband and I met with a quintet of professionals at Maddie’s school to discuss her attendance, or lack thereof. I’m pretty sure she’s missed at least 50% of the school days so far this year. Most of the time it was a result of my failed attempt to get her going (or alternatively, her successful attempts to resist). But for the last couple weeks I had just given up. I have talked about acceptance so much in the past, and tried to distinguish between that and giving up. There is definitely a difference. And this time, I was really just giving the hell up. I couldn’t take it one more day. After weeks and weeks of a migraine, I had started to think maybe I would just always and forever have a migraine, and that’s not acceptable. I had to give myself a break for once.

I didn’t have a particular outcome in mind when I anticipated this meeting. I just wanted a plan, any plan, whether it involved home schooling or online schooling or a high school proficiency exam in lieu of continuing school. Maybe she would in fact be done with high school and we could just move on to something else. What, exactly, I couldn’t fathom because the struggle is simply to get her to get out of bed and go somewhere on a somewhat regular basis. So would there be another somewhere she’d be more motivated to get to? Maybe–hopefully–someday, but certainly not now. So am I just trading in one headache (quite literally) for another, unknown, new and equally bad one? Who knows.

We showed up on this beautiful fall day and in the conference were the usual IEP team: Maddie’s teacher/case manager, the school psychologist, the assistant principal, her counselor and a teacher (in this case, her PE teacher, who mistakenly showed up our meeting instead of another IEP but gave his two cents anyway: “She’s great when she’s here!” The usual refrain.)

The meeting went like this:

Chris, what does her day look like when she’s not at school? Does she have access to electronics?

Well, normally I take stuff away, but the last couple weeks I had just given up. I let her do whatever she wanted. But I did hide her computer a few months ago and I just finally found it yesterday. (I failed to mention she’s just been using my laptop instead.)

Usually we advise making staying at home as boring as possible.

Madz doesn’t get bored. If she can’t use electronics she’ll craft, or work on a costume, or make a sword, or put stickers on her wall, or go pick flowers, or lie around with the cat.

(Looks of skepticism from the team. I know it’s the truth but I feel guilty anyway.)

Okay, what is the minimum she can go to school and still make it work? I asked.

Hmmm…that’s a very good question, they all agreed.

And it was a good question, because I do believe it led to the best possible solution that still involves going to school.

Thanks to this dedicated staff, who are always flexible and motivated to make things work, we decided to propose to Maddie a 2 1/2-day week, basically, beginning after Thanksgiving break. A shortened Monday, and then full days Wednesday and Friday. No two school days in a row. Hopefully having a recovery day in between school days will help. Hopefully a late start on Mondays will help. Hopefully, hopefully, hopefully.

Some months ago we installed a hot tub in the back yard. In addition to the usual benefits of a hot tub–muscle therapy and general relaxation–I have found an even more beneficial outcome, and that is the time I spend with Maddie. She loves the hot tub and nearly every night she invites me to join her for a soak. I always say yes. Always. It’s quiet and peaceful and we’re alone out there, so there is literally nothing to do but talk. And when you have a kid who’s not much of a chatterbox, or who finds expressing herself either challenging or unappealing, it’s a gift to have a half-hour chat each night.

Sometimes we talk about astronomy (she teaches me things, for I know nothing). Sometimes she utters a phrase to be funny, and I find it appalling, and then I have to tell her what it means so she can make better choices about saying that phrase again. Sometimes we talk about boys. And sometimes we talk about school or living skills or what she might like to do with herself in the future.

Tonight, after proposing the new and updated schedule, I mentioned, when I thought of it, that if she’s enrolled in her high school, she could go to prom. “Huh,” she responded, clearly interested. I told her about how when I was in school, students could only attend prom as part of a couple. Now, I said, you can go with friends.

“How does a date work?”

“Do you mean to prom? Are you thinking of Aaron?” I asked.

She nodded. Apparently there is a mutual crush thing going on between these two. I have not met him, but I do know they both love art and work together in the cafeteria (that’s another story). The have gotten to know each other well. I think they’re both a bit on the outside, but they found each other last year when they both spent lunchtime in their science teacher’s classroom.

“Does the boy ask the girl, or the girl ask the boy?” she asked. Such a different conversation from those I have with my 14-year-old son, who’s savvy enough to realize that an eighth-grade “relationship” isn’t really much of one, so he’d rather wait until high school, at least, when he can actually date.

I assured her that either way is perfectly acceptable, and I even suggested how she might ask very casually, so she wouldn’t feel too nervous. “Well, I told Colton I liked him,” she reminded me. Colton is a boy she knows from camp, and she somehow conjured up the nerve to say those words to him. I’m pretty sure his response was “thank you.” I don’t think he has any more experience dating than she does, so overall I think that went pretty well. However it had gone, I would be proud of her. Such courage to put yourself out there like that, not having any idea what the response would be!

Anyway, back to school. I’m hoping that with the modified schedule and the temptation of going to prom with Aaron, perhaps she can manage to get up and go enough to make it work. I’m feeling a teeny bit optimistic, uncharacteristically, but I think that’s perhaps more wishful thinking than anything. I just want this to work out so much, mostly because I think it’s the best thing for Maddie, but also because the idea of figuring out something else to do and then embarking on a whole new scenario is daunting. I’m not sure if that’s even the right word. Or maybe it is. Maybe daunting and depressing and just a giant bummer, just a new battle to fight, a new source of stress, a new source for migraines.

But for now, we have a plan. We’ll look into Plan B, which–for now, at least–does not include boarding school. I don’t even want to think about alternatives, but I have to be prepared for disappointment and frustration, and perhaps if I have a Plan B in my pocket, saying goodbye to Plan A won’t be so painful.

Fingers crossed, though. Fingers crossed.

Finding My Voice

Chris Irvine, Parent CoachLeave a comment

Recently I wrote about what’s been keeping me from writing. A few personal distractions have factored in to be sure.

Now I have realized there has been another big distraction from my Asperger’s parenting blog. And that is the current election.

I won’t go into my opinions here. Suffice it to say they are strong. They are burning. They are becoming increasingly consuming of my mental energy. I have always had opinions about these things. I have some very firm beliefs, which have developed over the years as I have grown and matured and become more open-minded and more worldly. I would say they are mostly fully formed.

But like many of us, I have refrained from engaging in discourse about those taboo subjects: religion and politics. I think money is one too. I still don’t really want to discuss religion. That’s personal. Another person’s religious beliefs are their own. I respect them and value our differences. I am certainly curious to learn about various religions, but I don’t feel the need to convince anybody one way or the other or to be converted, either. And money is just not that interesting to discuss.

But politics has become something else for me all of a sudden. I am so fired up I feel like I might explode. And guess what? Sometime over the last year, I have found my voice. Partly it’s probably due to my age. I turned 49 last month. I still feel 25. I’m still goofy and silly and jokey and dancey and sing-y and face-makey and all that good stuff. One of my purposes in life is to have fun with my people. I want us all to enjoy ourselves. I put a lot of myself into that mission on a daily basis, particularly with my family. We dance with the dogs, and say “That’s what she said” as often as possible. I crack myself up, to be honest. Seriously, I am HI.LAR.I.OUS.

But this 49 thing has given me something very powerful. Maybe it’s courage. Maybe it’s kind of the old-lady-who-doesn’t-care-what-anybody-thinks attitude, even though I don’t exactly feel old. Maybe those are one in the same.

Or maybe writing 100 blog posts about my life, letting down my guard to expose my fears and failures and weaknesses and hopes, has given me the courage to speak my mind about other things.

Or maybe it’s because things are falling into place with my kids, which have been the consuming force in my life.  I’m learning to accept the challenges of my 16-year-old daughter, and my nearly 14-year-old son is becoming more independent. So I have this freed up energy, energy that is searching for a purpose. And I’m finding that purpose.

Whatever precipitated this development, here it is. I have found my voice. And I really do mean found. I have had this voice my whole life, but I’ve kept it quiet. I’ve been polite and diplomatic and quiet. I have sat around a table full of people who shared a singular viewpoint while I most vehemently but also silently disagreed. I didn’t want to stir up trouble. Oh, the fire burned in me, but my desire to be polite and maybe, I hate to admit, to be liked, has suppressed my voice.

I wish I had found it sooner. It seems like I wasted so much time being afraid to speak up. I was a painfully shy child, fearful of adults in general, even the lady at the Taco Bell window waiting to take my order. Or my neighbor’s grandma, who insisted she pull that sort-of loose tooth out of my five-year-old mouth. I was too timid and shy to stop her. Or my teachers, who just might call on me to speak. Even though I knew the answer or had something important or meaningful or even brilliant to say, the fear of having to open my mouth and expose myself was overwhelming. So first, I had to overcome my shyness, and that has been a lifelong journey.

But there is a lot of room between not being shy and being bold. I think I just figured that out.

So now, finally, as 50 looms, I have decided it’s time to be bold and use my voice for good. Do I still want people to like me? Well, sure, I suppose everybody does. But I want to be liked for what’s truly inside, and that’s coming out, people! It’s coming out! 

I want my kids to see me this way. I want them to see a fearless woman who speaks her mind, who stands by what she believes in. A person with a passion and a voice and the courage of her convictions. A person whose words can make a difference. Because words are my medium.

This particular blog will continue to focus mostly on parenting. No politics here, unless they involve autism or special needs or kids. I have decided, after 100 entries, that this blog is really about my journey as a mother more than Maddie’s journey as a teen, and this newfound courage is part of that journey. It’s my coming out, as they say. My declaration of strength and power and intention. My declaration of purpose. And it feels good.

 

 

 

 

 

 

 

 

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.

Another Spectrum

Chris Irvine, Parent CoachLeave a comment

Spectrum:

1. A band of colors, as seen in a rainbow, produced by separation of the components of light by their different degrees of refraction according to wavelength.

2. Used to classify something, or suggest that it can be classified, in terms of its position on a scale between two extreme or opposite points.

How I felt the true meaning of that word this last week!

One moment I was holding Maddie’s hand while she struggled to tolerate the miserable sensation of “buzzing” in her face, begging me to somehow help her. In another moment I engaged in conversation with Maddie and her cousin about how one of them wished she knew herself better and the other had learned in the last couple of years how to feel more comfortable presenting her true self. From helpless young child to self-aware, philosophical teenager all in the matter of a weekend. A spectrum, indeed!

Yesterday I drove about an hour to have Easter with my parents. Maddie had spent the night with my sister who lives near my parents, so we all met for a casual afternoon celebration including lunch and multiple eggs hunts. And, as is always the case when my niece is involved, board games. We struggled through a few rounds of Apples to Apples (if you don’t have it, get it!) because we just couldn’t stay on topic for some reason. Suddenly, Maddie announced, holding her belly, “Ugh. My stomach hurts.”

“Do you need to lie down?” I asked.

Much to my surprise, she nodded quietly and started heading toward the nearest bedroom.

“Do you need anything?” I called.

She nodded. And pointed. At me. Of course. Just like last week, when she wasn’t feeling well, she just wanted her mom.

Hey, I get it. I’m 48 years old and it wasn’t so long ago that I felt like the one person who could take care of me was my own mom.

When Maddie was born my mom came to live with us for the first week. When I was eight months pregnant with my son, and Maddie had just turned two, I had complications that made it very difficult for me to get around, so Mom stayed with us for the entire last month of my pregnancy. She did everything. She cooked and cleaned and dug up stumps in our backyard and cleaned the tops of our kitchen cabinets. She did laundry and took care of Maddie. I was so grateful to have her there.

And then, after both visits, she unceremoniously began to pack up to go home. She had certainly done so much more than I ever could have imagined. But I wasn’t quite ready to be without her, even though I was 33 and 35, and so I cried. The first time, when suddenly there I was with a newborn baby and a lot of raging hormones, I was scared. How would Jake and I manage this new life? The second time, when my son was born, I was certainly more ready, but after a number of complications (including a systemic rash and a rib cracked during my c-section) I was still pretty miserable. Maybe I was scared. Now I had TWO babies. If I thought one was challenging, how on earth would I manage two? And post-c-section with my still-cracked rib and a rash that was getting worse before it got better.

And so I cried. With Maddie I cried for two days. With my son, it was brief, but I still cried. I still wanted my mom.

And here was Maddie feeling sick to her stomach, wanting her mom. But now she wanted me for something I really couldn’t help. I finally talked her into going into the bathroom, where I thought her problems might eventually be solved. She sat there, suffering with cramping intestines, reaching out for my hand. Again. “Help me,” she begged.

“Well, I can’t really help you with this.” She’s nearly 16. I really can’t help her in the bathroom. Nor do I necessarily want to.

“Uh, I’ll sit out here and you can leave the door open,” I offered. We were in my parents’ room, so I could just close the bedroom door and we could have privacy. I sat on the couch, looking at the spines of my mom’s books for something to read. I didn’t have my reading glasses nor was there anything I was particularly interested in. (I eventually picked up a book and handed it to Maddie. Painted Crafts. The operative word: crafts. Maddie loves them. I’m allergic to them.) So I just sat and sat and waited. And tried not to listen or breathe through my nose.

“OOOOOH, help me, Mom!” she cried again. She must have had food poisoning. She was in pain and sweating and uncertain of how long this feeling was going to last.

I sighed, “Maddie!” I’m sure I was exasperated by this point. “There’s really nothing I can do for you.” Deep breaths. Of course my heart went out to my suffering child, but I was also feeling exhausted from the demands upon me over the last several days.

Eventually she was alright and we were able to make the hour drive home.

But I couldn’t help but notice how sometimes Maddie is very fifteen, and sometimes she’s very four. Teenager-y and toddler-y. And there is not a lot of in between.

And this morning there was a lot of teenager-iness.

Mondays are always hard for Maddie. Mondays are hard for most people, I suspect, and I tell her that all the time. Everybody is tired! Even your teachers! But they get up anyway!

Despite her promise that a sleepover on Saturday wouldn’t negatively impact her school week, she was unmoved this morning. I tried all the usual tricks, and eventually I managed to get her up. I wasn’t sure how I did that although some threats were involved, as was a little bit of yelling and even some counting (toddler-iness!). I had taken her electronics out of her room and promised to return them once she got up. I even let her wear the shirt and pants she slept in (just add some deodorant, please), so all she had to do was put on her socks and sneakers, grab and hat and glove, throw her backpack over her shoulder and head up the stairs.

I took the dogs and her French toast wrapped in a napkin and headed to the door. Maddie asked, “Where’s my phone?”

“In my purse. You can have it in the car.”

Shortly after getting the dogs into the backseat and settling in myself, Maddie appeared with her backpack. I looked at the clock. 7:35. We might be on time today! I thought cheerfully. It was a stressful morning but not only we were on our way to school, for once she might not be late.

Maddie opened the door, threw her backpack in, sat down, and reached for my purse. I buckled my seatbelt. And then…

She grabbed her phone and got back out of the car.

Are. You. Kidding. Me.

She did all of that in order to get her phone without having any intention of going to school. It was all a big ruse. Or at least it became a ruse. I suspect the more insistent I had gotten about school, and the fact that I had removed her phone, had somehow inspired her to dig in her heels. She was going to win this. 

I hopped out of the car but there was clearly no way for me to win this, if winning meant getting her phone back. Even if I had tried, I’m not strong enough (or willful enough) to physically extract the phone from that grip of hers. I could stand in front of her all day, keeping her in the driveway, I guess, but that’s just ridiculous.

“If you don’t get back in the car or give me your phone,” I said sternly, “when I do get my hands on that phone, you’re losing it for a month.”

“You don’t mean that,” she challenged.

“Oh I certainly do.”

Unfortunately that month includes a trip to Mexico. Oh crap. What have I done?

Seriously. What. Have. I. Done.

I fell into the trap again. She was so determined to keep her phone that even if I had promised to destroy it during the night, she wouldn’t have done anything differently. I could take away her allowance for a year. I could even take away sleepovers for a year, and she absolutely lives for sleepovers with her cousin. I could have done any and all of those things and she would have stuck to her guns because in a moment like that, her “guns” are the only things that matter.

Actually, now that I think about it, this morning’s behavior seem both toddler-y and teenager-y. Rebellious like a teenager. Unable to anticipate the future like a toddler. Stubborn like Maddie.

I guess ultimately that’s who I’m dealing with. Not an age or a phase, but just a Maddie. She’s complicated and confusing and maddening and surprising. She is a whole spectrum unto herself! And it’s very challenging.

Some people might be grateful for the challenge. Or at least they might think they would be. I’m not grateful–at least not today. It’s damn hard. Today I feel like I’m losing my mind.

But I do accept it. That’s a gift, I suppose, of having a special needs child. You learn a whole lot of acceptance. You learn to see a person for her whole self, and you love and accept all those parts. You embrace every color of the rainbow and learn to see all the colors in between.

And somehow you just keep going. You get up every day hoping for a pretty indigo or gold but knowing today might be kind of a muddy brown or a swamp green. And today the spectrum wasn’t pretty. But maybe tomorrow will be that soothing, beautiful blue or something even better.