ASD

Playing the Lottery

Chris Irvine, Parent CoachLeave a comment

Five days ago my family went down like dominoes. Within two days we went from four healthy people to four sick people, but as usual, Maddie feels better than any of us. I thought maybe I had pneumonia. I’ve had pneumonia. It was a six weeks of utter and total misery. If I decided to take a shower one day, well then I was done. I coughed and coughed until I vomited, over and over and over. I couldn’t breathe very well and I shook and trembled my way through the day, all the while just lying in my own misery. I certainly don’t feel anywhere near that sick now, but just the fear of even a touch of that experience is enough to send me straight to bed.

Maddie, on the other hand, is keenly aware of her strong constitution. We talk about it often. She either manages to avoid viruses altogether or if she is stricken, her experience is often short and relatively manageable. Lucky kid. Even when she had pertussis at ten years old, she wasn’t really that sick. I happened to be aware whooping cough was making a bit of a comeback in our neighborhood, in particular, so I took her to the doctor and voila! She had whooping cough. Other people who contracted the virus were the sickest they’d ever been, but Maddie just had a cough. She did have to be quarantined for two weeks, though, just to keep everyone else safe. But really it was nothing.

She is also freakishly strong. She’s the person I get to help me move furniture or bring big bags of dog food from the car down the two flights of stairs into our house. She loves that about herself. This is a person who mostly sits at her desk on her computer, or in bed watching TV, so that strength isn’t a function of exercise or conditioning. It’s just how she was born. She most certainly didn’t get it from me. My brain wants me to be strong, but I’m the person everyone tells to sit down and “Don’t hurt your back!” I hate that about myself, but that’s just how it is.

Since Maddie has been less affected the last few days than the rest of us, I’ve been asking her to help out a little bit. She is happy to deliver water to whoever needs it and would even cook somebody something if she knew how. The kitchen was piling up with dirty dishes, and, although I’m far from a neat freak, it’s the kitchen mess that irritates me the most. So this morning I asked her to empty the dishwasher. I thought I could muster the energy to fill it.

She immediately got to work and I was so thankful. Thankful she was up to the task and thankful she so cheerfully went for it.

“Thank you SO much, Maddie,” I said. “This helps me so much.”

“Well, I just can’t explain my strong constitution,” she said proudly.

“You won the genetic lottery,” I answered matter-of-factly.

Silence.

“Well, not totally,” she said.

My heart stopped. Was she going to say she wished she didn’t have Asperger’s? Was this conversation about to happen? I mean, I’m fully prepared for it because deep in my heart I really don’t think of her autism as a disability or anything to change. I don’t think that way at all. And as we all do for our children, I just want her to be happy with herself.  We love her as she is and there’s simply no reason for her not to as well.

“Bad ankles,” she explained.

My body relaxed. The ankles! She does have shitty ankles, just like her parents (we’ve both had the very same ankle surgery). And she has horrible flat feet, to be honest. But I could never have imagined being so happy to hear somebody complain about their ankles.

“Well, that was kind of inevitable,” I shrugged.

Before she resumed her kitchen task, I hugged her. Extra tightly and extra long.

I’m pretty sure I’m the one who won the lottery.

Ninety Percent Happy – A Camp Debrief

Chris Irvine, Parent Coach1 Comment

Today was camp pick-up day. After 24 days without Maddie, it was time for the family to reunite. Or at least three of us. My teenage son thought those three and a half weeks went by a little too quickly. “Does she get back next weekend?” he had asked. “No, tomorrow,” I clarified, and disappointment washed over his face.

Part of me didn’t want to do the pick-up simply because of the drive. I had recruited my husband to make the trek because of my hate-affair with long car trips, but since we could at least share the driving, I decided I couldn’t miss out. An excellent choice on my behalf as it turned out.

Pick-up day at this particular camp is also performance day. After having lunch together with the campers, parents can see what their kids have been working on for the last ten days. I always go to performances or games or whatever my kids are up to (and sometimes just to see their friends). I LIVE for this stuff. But the last few times Maddie went to camp she participated in workshops that didn’t end in a performance, so I wasn’t expecting to see her do anything this time. Typically we would have lunch and then listen to a brief talk by the camp director, then grab her luggage and split. So really the only reason to go would be to to give her a giant hug and dip my toe in the camp experience before summer was over and see her happy face.

I knew for sure she’d be happy. For one thing, camp is the highlight of her year. ALWAYS. Second, I was actually able to speak to her half way through. Campers can’t have phones, but Maddie stayed for a four-day between-session mini-sorta-camp thing and during that time was able to use a counselor’s phone.

I received this text:

“Hey, it’s Maddie, your daughter. Could you call me on this phone? Anytime.”

And then, before I could respond:

“Can you send me some stuff? My Bose speaker and the power cord. And my SIM card. And can you go on Amazon and order some Liquid Ass and send it here?”

I called her shortly thereafter. She was in good spirits, partly because she was in a bowling alley at the Santa Cruz Boardwalk at the time. She sounded happy and relaxed.

“Can you also send me a banana suit?” she asked.

“Did you say ‘banana suit’?”

“Yup.”

“Sure.”

After a brief conversation about camp, I handed the phone to my husband so he could chat with her, and brought up Amazon.com on my computer to order Liquid Ass and a banana suit.

I wrote a note to my husband, who was still on the phone with Maddie: “Ask her if it’s the fart spray.” Eventually he nodded and gave me a thumbs up. I placed the order as if it were for toilet paper and toothpaste. It did occur to me that perhaps a “for what?” might have been in order, but it hadn’t crossed my mind to ask until it was too late. Maddie gets ideas and she makes plans and sometimes they involved fart spray and a banana suit. Business as usual at our house!

So two weeks later, there we were to retrieve our happy camper. We hugged a giant, long bear hug. I noticed her hair was clean and brushed and I was so happy about that. Even if that was the only shower she had taken (although I was sure it wasn’t), at least she had the foresight to be clean for the parents. We had some surprisingly delicious barbecued chicken and grilled vegetables for lunch. Maddie had already eaten a turkey sandwich. A TURKEY SANDWICH. Mind. Blown. She likes turkey and she likes cheese and she likes bread, but she has never ever eaten a sandwich. Whenever meals weren’t to her liking, she asked the kitchen staff for a sandwich. A SANDWICH.

After the campers and staff gave an enthusiastic performance of this year’s theme song,* it was time for performances.

“Are you in anything?” I asked, expecting the answer to be, “No. Let’s go home. I’m tired.” But instead the answer was, “Yes, rock band and film.”

Alrighty then, we would be staying longer. We converged in the dining hall/performance room and first watched dance and  musical theater. But the big star of the camp is rock band. Probably half the camp participated in that workshop. The first act got on stage and Maddie was nowhere to be seen. It was a full rock band (maybe five instruments) and two singers. Maybe she comes in during the middle, I thought, and shakes a tambourine or something. But nope, the song was over and another group took the stage. Different kids, different song, but pretty much the same setup. Still no Maddie. By the third song, I was starting to wonder, and then she stepped up with a microphone in hand. The band got set up and Maddie belted out “The Way You Make Me Feel” by Michael Jackson. All alone up there, with occasional backup from the rock band coach. She looked pretty natural on stage, moving her body and holding the mic with confidence. She sang from her belly and her heart. She wasn’t the best vocalist, but she was certainly among the most convicted. I was in awe. She just blows my mind sometimes. I was so proud of her and happy for her.

And then, unfortunately, I started to think. Maddie was the only solo act, and I knew it wasn’t because she was the best. I also noticed that half the band was camp staff, unlike the other groups. Ugh. The sadness started to mingle with the joy. Did nobody want to sing with her? Did the staff step in where campers wouldn’t? Is this the “special ed” performance?  Even at this magical camp, is she on the fringe (a word her kindergarten teacher once used to describe her)?

She sure looked happy up there, though. This is a kid who loves to belt it out, and she got it do it with a band. If any of my worries were rooted in truth, she didn’t seem to notice. I was mostly happy, and a little bit sad, and then a little more sad because I wasn’t 100% happy as I thought I should have been.

A couple more groups performed, and then the entire “mega band” took the stage for a rousing rendition of “Burning Down the House,” a suitable song for the band and for the moment. Each singer had a few solo lines, and Maddie pulled hers off as well as anybody. Or at least I thought so.

Finally, it was time for film. Maddie’s film was a camp-ified version of Harry Potter with a few jabs at the Spiderman movie franchises. She had come prepared, somewhat unknowingly, with her sorceress costume, and ended up with a relatively big role. It was clever, funny, and well-edited. Whent the film ended, Maddie said her goodbyes, and I signed her up for next winter and summer.

And then it was time to pack up and go home, my heart full of gratitude for the camp, joy for the experience my kid gets to have, and yet a little conflicted inside.

But before we could actually embark on our two-hour return trek, there was a stop to be made, for in the tiny mountain town near the camp, there is, of all things, a costume store. There are maybe 15 businesses in that little strip of downtown, so the presence of a costume shop was more than surprising. Maddie directed us where to park, and we walked a half a block to the store. She had her eye on something from a visit during the in-between-camps excursions, but she hadn’t had enough money to buy it. It was a gold lame, pleated, wing-style cape of sorts. Of course her plan is to modify it somehow (that’s how she rolls) and give it some kind of flame effect at the bottom. And then she saw some lights for costumes and a plan was born.

Aggie, the proprietor, remembered Maddie from her prior visit. She could see how important costuming is to Maddie and searched high and low for a red dress she had that might complement Maddie’s fiery vision.

“She can come work for me anytime she wants,” Aggie offered. I could tell she had Maddie pretty well figured out. She said she has other girls who work there about two hours per week.

My first thought was, of course, I wish the store was closer to our home. My second thought was, “Hmm. Maybe I could drive her down here once a week for a couple hours.” Part of me thinks that’s crazy. The other, more correct part, thinks it would be totally worth it.

We purchased Maddie’s carefully chosen items and, although Maddie wasn’t sure she was finished, I talked her into concluding her visit by promising to bring her back.

So now w’ere back at home and everything is back to normal. Or whatever normal is to us. I am bugging her to take a shower. I have a fussy eater to cook for again. I’m fretting about embarking on the new online school program, which is still rather nebulous in my mind. I’m suddenly back to my usual stressors. And I’m pretty bummed about that.

All my emotions are back. The pride, the fear, the joy, the worry, the amusement, the frustration. It’s all back in the swirling vortex of motherhood. I feel like my brain is literally spinning in my head.

Camp was good for all of us. Back to reality.

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.