parenting

Dirty Shirt

Chris Irvine, Parent CoachLeave a comment

Today is June 19th. My son graduated eighth grade last Friday, so it feels like the official first day of vacation. I slept in! I put on a pretty dress! I can run errands whenever I want because I’m not tied down by school pick up time! I didn’t pack anybody’s lunch! It’s a gorgeous day and I’m loving it.

But somebody hasn’t changed her shirt for five days. This is the sixth day. I know this because the day the shirt was first donned was Maddie’s birthday, June 14th, after she opened a small gift in the morning and then decided to wear her new Flash shirt to the Giants game.

She comes into my room late this morning. I see that shirt and my disgust rises to the surface. The dirty shirt also means she hasn’t taken a shower for at least six days because I know she didn’t take one that morning. You hope your kids stop grossing you at some point, right?

“Maddie, the is the sixth day you’ve been wearing that shirt. You need to shower and put on a clean shirt.” One doesn’t gently toss hints to Maddie. You have to (and really get to, I suppose) be completely honest and blunt. I can’t imagine how many times I’ve said, “You’re gross,” or “You stink,” or “Get out of my room because I can smell you from five feet away. Seriously, don’t stink up my room.”

“Later,” she says, dryly. Later often ends up meaning “no” in the end. I know how this works.

“Why not right now?” I ask.

She just looks at me.

“If you don’t do it later today, I’ll take your computer away.” I can’t actually take her whole computer away but I can certainly swipe her keyboard or something so she can’t use it.

“Oh, will you?” she says defiantly.

I’m now wondering why I even went down that road. Either we’ll get in a huge battle or I’ll decide against it, knowing it’s futile at best, or first step on the wrong road, at worst.

She grabs the allergy medication she came for and leaves. I move on. I can’t deal with this right now. I have other things to do and I want to enjoy this first day of summer.

Yesterday was Father’s Day and the plan was to go to my in-laws’ house for the afternoon. The whole family (minus a couple of young adult cousins) would be there to celebrate Grandpa Jim for both Father’s Day and his upcoming 78th birthday. My kids love their grandparents, and they love their dad. Grandpa Jim is also in declining health. We all want to spend time with these wonderful people while we can.

I informed Maddie of the plans the day before. “I don’t want to go,” she said.

“Well, it’s Father’s Day, and the is what Dad wants to do.”

“But I don’t want to,” she repeated.

“It’s not about what you want to do. This is about doing what your dad wants to do even if you don’t want to.”

“Well, I don’t WANT to,” she said yet again.

I’m not sure if she said anything else, but regardless of the words, her expression said it all. She had no intention of going.

Sometimes Maddie is incredibly empathic. Other times she is swallowed up by her autism (the key here being “auto” or “self”), and she can’t see beyond herself.

That night I talked to my husband and informed of the situation. We agreed we would give it a try in the morning, but not engage in a fight over it. I guess we’ve finally learned it doesn’t pay. The typical scenario when we push hard is everybody ends up upset (including our son), and she doesn’t come anyway. So we’ve ruined everybody’s day for nothing.

It’s sad, time after time, to visit the grandparents with only one of our kids (and often both, because when one is down, often the other goes down with her).  They know Maddie (the explanation yesterday was H is sick—true—and Maddie is being Maddie), but it’s still sad. It’s hard for us to do anything as a family, really, often because of Maddie’s inability to motivate herself. She did rally for both Mother’s Day and my birthday, and honestly that all I could have asked of her. It meant so much for me that she got out of bed on a Sunday morning for brunch, and then got dressed (no shower, no clean shirt, a hat to cover up her awful hair) for my birthday dinner at a restaurant she didn’t want to go to, just to make me happy.

So today there she is in that stinky, filthy shirt and I’m kind of angry and rather disgusted. She’s in her smelly pigsty of a room (I’m pretty sure a cat peed in there) playing Minecraft with her online friends. She’s happy.

Maybe this will be one of those “best days of my life” when she rises from her chair, grabs a towel, and takes care of business without another word on my part. I know this is possible. But really I have to be prepared to keep pushing, gently but firmly, without losing my patience or my mind.

Fingers crossed that stinky shirt is in the washing machine by bedtime.

_____

Update: I just finished writing this and that stinky shirt walked in (with the person inside of it) and the shower is ON!!

I grabbed Maddie’s dirty clothes from the bathroom floor, ripped her sheets and comforter off her bed, and threw them in the wash, hoping to de-stink this place a little.

It’s the greatest day of my life!

Yet Another Exercise in Frustration

Chris Irvine, Parent CoachLeave a comment

I don’t know why I haven’t been blogging. It really does help me process my experiences. And I enjoy it. Also it reminds me I have abilities outside of my parenting duties. I can type, for one thing, and the words come easily most of the time. It feels good.

So why have I been neglecting my blog? Maybe I thought it was easier to pretend it all wasn’t happening. To write is to think, and to think is to not ignore. Not that I was ignoring anything exactly, but part of the past year has involved distancing myself from the day-to-day in order to preserve my own sanity and physical health. This is not hyperbole. Here’s what happened:

Once we established last fall that going to school was not a viable option for Maddie (remember the conversation: “So it seems to me you don’t intend to go to school anymore.” “Nope.”), the weight of the world lifted from my shoulders. My two-month-long migraine magically vaporized. I exhaled the longest breath of my life. And I just let it go.

But you can’t REALLY just let it go. A child under 18 who has not graduated or passed an equivalency exam is required by law to go to school. Her IEP mitigates some of that obligation, but eventually I was going to have to do SOMETHING. The school wasn’t initiating any efforts to solve the problem, so I took matters into my own hands and hired Kim, the educational therapist, to work with Maddie. Kim has been a magical force for Maddie, an incredibly calm presence who truly seems to understand her student. There would be no (or very little) actually going to school, but we managed to eek out a little school work, enough to get us all through the year.

It wasn’t easy. In fact, it was an incredibly frustrating process to negotiate with the school and the district to make this situation workable.

After a year and a half of attendance problems, which followed an initial meeting in which we cited ATTENDANCE PROBLEMS as our single biggest concern, we were still met with a serious failure to understand the core issue. Not once, despite indications to the contrary, did she see a counselor or a psychologist to help get to the bottom of the issue. It seems rather obvious that when there is a behavior issue, discovering the reason why is crucial coming up with a possible solution.

Finally, finally, fi-nal-ly, when I made it very clear that I didn’t expect any more schedule changes to affect Maddie’s ability to get up and go, the district offered something called wrap-around services. In theory, it’s great, and in many cases I’m sure it’s effective. The district contracts with a service provider who sends social workers out to your home to become acquainted with the child in the comfort of their own home (or on a nature walk or whatever works) and to learn more about the family situation, in order to address the behavior problem at its root. Very often the child has serious issues involving drugs or alcohol, so the service providers were thrilled to come to a home with a functioning family unit and supportive, loving parents.

However, I hesitated to approve this course of action. I wasn’t confident this would work. Something was holding me back, but our advisor suggested I consent because a significant part of negotiating with the school is playing the game, i.e. “pretending to go along with their recommendations so you have some legal standing and eventually they have to come up with the RIGHT solution.” Apparently this is a necessary step in negotiations, which I absolutely loathe. Why can’t we all put our cards on the table and make the best choice? Why this aggravating game in which nobody wins (except, I suppose, often the district’s budget)?

So after weeks of deliberating, I consented, and the team of ladies arrived at our house a week later to meet. It was a cadre of three women, one fresh out of college, one with decades of experience, and the other somewhere in between. These were three terrific women, easy to talk to, eager to help. I was optimistic. It really was worth a try, I thought.

Well, except for the part about playing along with the school district, it turns out it wasn’t worth a try at all. Courtney, the young woman whose job it was to connect with Maddie, didn’t have the experience necessary for a kid like Maddie. She was warm and friendly, but after the first visit, Maddie wouldn’t even get out of bed or show her face while Courtney sat there for an hour trying to get her to respond. That happened twice.

Heidi, whose responsibility was to meet with the parents and make a behavior plan, was enthusiastic and fun. Maddie’s interest was piqued when she learned Heidi knew what LARPing was. (LARPing is live action role playing, for those not in the know.) But she too missed the boat.

After repeated conversations in which I explained the history of my child, Heidi showed up one day ecstatic with her new idea: Maddie’s reward could be a weekend LARPing excursion.

Well, slap my head. I never thought of that! Just kidding! I should have slapped Heidi’s head instead.

Had she not listened when I explained repeatedly that neither rewards nor punishments have ever been reliably successful with my daughter? Had she not heard me when I told her you could tell Maddie she could go to Disneyland on Saturday if she went to school all week, and then Monday morning she would refuse to get out of bed, and then Saturday she would get up and say, “So are we going to Disneyland?” It just doesn’t work and it never has.

Did she not listen when I told her how many people have suggested we “find her currency” and that was the answer? We don’t know her f**ing currency because she doesn’t have any!

I was beginning to get discouraged, to say the least.

Then we had one more IEP meeting. Maddie still wasn’t going to school and we had to figure out how the school would accommodate her. Heidi and Courtney joined us. Heidi presented her magnificent LARPing plan and Courtney said nothing. Finally I asked Courtney to give her report.

“Oh, Maddie’s so great!” she offered, smiling wide.

I can only imagine the expression on my face. What? That’s your report? “Can you please describe your last two meetings with Maddie?” I requested, trying to hide my aggravation.

“Well she wouldn’t get out of bed or talk to me,” Courtney admitted.

I was calm on the outside (I think) but I wanted to scream. I was so angry.

Not only had these meetings been pointless, I was now frustrated beyond belief. Worse, Maddie was so tired of meeting with people and talking that she eventually didn’t want to see ANYBODY, including Kim, which whom she had developed a meaningful, productive and successful relationship.

There were countless frustrating email exchanges in the course of this failed experiment, some prompting me to cry ‘HELP ME AND PLEASE FIX THIS!” to our advisor and friend. I just couldn’t take it anymore.

At the start of that IEP meeting, my husband declared, “If don’t walk out of here with a new plan, I’m going to be very frustrated.” Amen to that. I had to say very clearly that we all had to accept Maddie wouldn’t be returning to school. A reduced schedule, the cafeteria job she loves, anything else they could come up with was not going to effect a change.

There is something going on with this kid that defies material changes in her school day other than not having a school day AT school. The district head of special education declared, “We are not a home school program. We cannot continue this course of action.” Somebody suggested the district’s alternative independent study high school. Sort of a good idea, except that there are weekly meetings with teachers and attendance is absolutely mandatory. Anytime I imagine absolutely positively getting Maddie to go somewhere, my heart sinks. Currently that’s simply not going to work. Luckily, the school counselor shook her head. At least somebody got it. She recognized the absurdity of a solution that included mandatory attendance.

Somehow or other, because the school year was winding up, we managed to come to an agreement. Maddie’s schedule would remain reduced. Eventually we decided she would go to school on Mondays, when she would attend every class and obtain her work, which she would do at home. Nobody was to make a big deal of her return: a quiet nod as she slid into her seat would be enough. She wouldn’t be seated next to two particular girls who cause her anxiety. She could work in the cafeteria. She would lie low (which, it turns out, meant doing whatever she wanted quietly in her seat, so when other kids were doing school projects, she might be writing a story on her phone, intending to do the work at home with Kim). It sort of seems ridiculous now, to force her to go to school in order to achieve absolutely nothing. But she did it. She completed her coursework. She went to school on Mondays, without a single fight.

We cheered for this little bit, but not too much because she doesn’t like it. I think she finds it condescending. We set what seem like small goals, but what are are shooting for is something challenging enough and, we hope, achievable.

I haven’t checked her grades yet. Honestly I don’t care what they are. I do hope she passed so she can have the credits as we launch into the next phase (online school!) but mostly I’m just thrilled we all made it until June 8th intact–my fiftieth birthday and the last day of school–intact.

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.