Month: January 2017

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.