asperger’s

Don’t Look at the Whole Staircase

Chris Irvine, Parent CoachLeave a comment

I like to think I have some natural gifts that lend themselves to good parenting. I believe I am empathetic, creative, logical and kind, which helps me connect to people in general and my kids in particular. That’s not to say these qualities are always activated when I’m parenting. Perhaps I’m using one or another, or perhaps they’ve all flown out the window in a moment of frustration or exhaustion.

I also happen to have two of the least fickle kids on the planet. Once they decide, They Have Decided. On whatever it is. Maddie’s way of expressing her decisiveness is the simple act of refusing to bend. She has decided not go to to Thanksgiving at Grandma’s, for example, so there is nothing you can say or do, no threat of punishment or offer of reward, that will alter her decision. The answer is no, and that’s that. We can make our whole family insane trying to change her mind, and the likely outcome involves not even a glimmer of hope. There are exceptions, of course. Like when I was trying to potty train a nearly four-year old kid who just wasn’t interested in the process, so I started challenging her to race me to the bathroom. I think it worked twice, and then that was the end of that. Still, I was thrilled with my double victory.

My son’s way is different. He can argue you into a rabid, frenzied froth of frustration. You will never win that argument. You might not lose it either, but as a parent not winning is pretty much the same as losing. I had an early indication of his logic skills when he was a five-year old preschooler. He had shut the door to his room, which was unusual, so I thought I’d better investigate. I soon discovered he was in his closet, door closed. He had to be up to something. “What do you have in there?” I queried. Out stretched a hand holding a box of goldfish crackers. “Why are you hiding those?” I asked. “If you had asked me I would have said yes.” And then something dawned on me. “What else do you have in there?” Out stretched his hand with what turned out to be decoy number two: a box of Teddy Grahams. I repeated my response. I was detecting a pattern. “What ELSE do you have in there?” And there it was, a bag of chocolate chips. And that was NOT okay with me. That evil genius had rolled out his decoys in hopes of avoiding the final discovery. “We’re screwed,” I told my husband. Some years later – maybe he was eight – he effectively asked me a series questions, knowing how I would answer, so that I would actually lead myself to his desired conclusion. I don’t remember the topic, but I do remember realizing what was happening just before he succeeded.

I am reminded of our friend’s mom who early on recognized our challenge with Maddie. “Her stubbornness will serve her well when she’s grown. The hard part is getting from here to there.” Amen, Joan, amen. Same for our son, I’m sure.

So anytime I can talk my kids into anything, I’m surprised and delighted and pretty darn proud of myself.

A couple weeks ago my niece M turned 18. Maddie and M are only nine months apart and truly the best of friends. Our families live about 45 minutes away from each other. M is incredibly busy, so the girls don’t see each other as much as they’d like. So you would think, wouldn’t you, that the upcoming party and sleepover would be unmissable.

As I try to do with Maddie, I had reminded her each day for a few days to prepare her for the event. Late morning the day of the party I sat down on Maddie’s bed and said, “We should leave around three o’clock today.”

And to my surprise she responded, “I have been trying to motivate myself all week, and I just haven’t been able to do it.”

All the months since she graduated high school, I have been avoiding, as much as possible, any situation that involved making Maddie go somewhere. After all those years of morning turmoil, I realized not only did I no longer have the energy to take on that fight, but that the fight was futile anyway. So much wasted effort, so much heart-attack inducing frustration that ultimately had no positive effect—I just couldn’t go back to that. And yet here I was.  I could feel the tightness in my chest forming almost immediately. We couldn’t let our sweet M down on her big day. And I really wanted Maddie to enjoy what I was certain would be a good night. What was I going to do?

I pulled myself together enough to say, “I think it’s been about two weeks since you went anywhere. That happens to me too, like when I’m sick for a week and I’ve been at home, it’s just easier to stay home than go anywhere. Eventually I just make myself go somewhere and then it gets easier. It happens to everyone,” I assured her.

She was still unmoved.

“OK,” I said. “Forget about going all the way up to M’s house. Let’s just think of something small to do first. Like maybe we could go to the coffee shop for lunch.” Originally I had required she take a shower, but I realized that was a serious obstacle, so I let that go.

“Is How to Train Your Dragon playing anywhere?“ she asked. A glimmer of hope!

“I’m sure it is!”

So we picked a movie time that allowed us a quick lunch out and would also get us to the party in time. I said, “Just throw your toothbrush and toothpaste in your bag in case we get up to M’s.”

Don’t look at the whole staircase. Just look at the first step.

I’m sure I’d heard that before but it wasn’t until a week or two later that a motivational speaker I was watching used that phrase. I had put it into practice without naming it, and to my amazement and delight, it worked. Just like all the times I folded Maddie’s writing assignment page in half so it didn’t look so scary. “Just do a Maddie-sized essay,” I’d say. Just one small step at a time.

We had our quick lunch (delicious and fun!), drove north to the movie (love those Dragon movies!) and it was an easy and welcome third step to drive further north to see her cousin. She was happy to be there and, as expected, she had a wonderful time.

I patted myself on the back or a job well done. But not because I won a battle. It was because I used one or two of my gifts at the right time to look at my daughter and see what she needed. Just a peek at the first step!

Nailed it.

The Brave Speak for Those Who Can’t

Chris Irvine, Parent CoachLeave a comment

A friend recently asked me for advice. She has a family member whose toddler shows signs of autism. Knowing the importance and impact of early intervention, she  wants desperately to say something to the parents and suggest their child be assessed. She also has experience as an educator and parent that helps inform her suspicions. So, let’s say she brings up this tough issue and the parents take offense.  Based on what she told me, that’s not an unlikely response.

Does she risk upsetting her relationship with the parents to advocate for the child? That’s a tough choice to make, but I think that answer is yes.

Here was my reassurance to her, which I hope she can pass on to her relative:

  1. Getting a diagnosis doesn’t make autism (or whatever it may be) any truer than it is without the diagnosis.  In that moment that word is uttered in reference to a child (or adult), the person hasn’t changed. She is exactly who she was the moment before.
  2. One gift of the diagnosis is a life-changing light suddenly shone on your child. Many of the questions you may have had are quite suddenly answered. Not all of the questions, of course, because each child (on the spectrum or not) is a unique individual. But you can begin the process of understanding your child in a new way, enabling you to parent them with newfound empathy and patience.
  3. Another gift – and I cannot stress this enough – is that services become more readily available to you. Since Maddie was not diagnosed until around age 10, she struggled through elementary school as the teachers and staff struggled to understand her. And then, magically, we had the word “Asperger’s” to throw around and suddenly Maddie was less of an enigma despite having not changed a bit. Was everything magically solved at that point? Certainly not, but instead of just being the smart, stubborn kid who refused to perform, or the weird kid who repeated the word “paperclip” over and over until she was eventually sent outside the classroom, or the kid who would hide during school hours, throwing the staff into a frenzy, she became a more sympathetic person who deserved compassion and help. It makes me so sad to think about the years she was misunderstood and therefore mistreated.

I was recently talking with a friend in her 40s who has chosen not to have children. If she ever changed her mind, she said, she would want to go right into the teenage years, skipping right past all the noise and messiness that comes with babies and young children. We agreed adopting an older child is fraught with uncertainty, but then I pointed out that even when you have a baby, it’s still a roll of the dice. Your child might become an Oscar-winning actress, or a homeless addict, or a high school valedictorian who goes on to solve world poverty or goes to jail for insider training. Or she might have autism. Or some combination of those things.

Certainly the dreams of an expectant couple do not include addiction or a prison sentence. Or autism (to be clear, I’m not equating autism to either of those things). And yet a diagnosis of autism is an increasingly likely outcome of an assessment. Awareness and the ability to diagnose autism have improved dramatically over the last decade or two, but depending upon the trajectory of a child’s development, and depending upon their gender (boys are more likely than girls to get an early diagnosis), a chid may still go for years without getting a diagnosis and therefore the appropriate help. I know because that’s what happened to us. So many years of pain and frustration and confusion could have been avoided. There are so many things I would have approached differently if only I had better understood the daughter I so desperately wanted to know.

For my entire life deep in my soul I have believed in speaking up for those who cannot speak for themselves. If anybody qualifies for that, it’s a young child with autism. It might take some real courage to speak the words, “Have you thought about having Reilly assessed?” Or “I’ve heard of some services that might benefit Sophia.” But remember, you might be the only person to utter the magic words that eventually open the door to early intervention, a deeper understanding of that child, and continued services throughout that child’s educational experience and beyond.

If you know a family who needs help navigating this special realm of parenting, or who hasn’t dared consider autism or a learning difference a possibility, look into yourself and see if you can find the courage to speak up as an advocate for that child. A gentle observation or suggestion, or a connection to a free assessment, could change the lives of the whole family forever.

Be brave. Speak up with love and compassion. And know in your heart you’re doing the right thing.

And even if you can’t, I still love you.

Coming Soon: A Whole Lot o’ Nothing

Chris Irvine, Parent CoachLeave a comment

The weekend before finals week, families in our community held a party that’s been a tradition for some years: The kids who went to elementary school together and who are now graduating from high school, along with their parents, gather to celebrate with a reunion/graduation/college kick-off party. I had heard that usually the kids leave after twenty minutes, so the party ended up being more of a reunion for the parents. Some of these parents have become close friends since we met in 2005 when our kids were in kindergarten. Others I know as acquaintances only, but our shared history binds us together anyway. So I was excited for this event. And I wasn’t disappointed!

I knew Maddie wouldn’t want to attend. I invited her, of course, and I assured her that so many people–parents in particular–would be thrilled to see her. That’s absolutely true. But her increasing self-awareness, although welcome in many ways, makes social situations like this one difficult. So her dad and I went alone.

To my delight, the kids stayed and stayed. They embraced old friends and even a few threw their arms around me–and not necessarily the ones I would have expected. It was wonderful to see these kids who at five years old struggled to cut out a circle or spell a word well enough to somehow be decoded, turn (very suddenly in my eyes) into young adults, most of whom were about to leave home–many heading across the country. “What’s next?” we all asked the kids. “I’m going to Brown.” “I’m going to Emerson.” “I’m going to Cal Poly.” “I’m studying in London before I start at USC.” “I’ll be playing basketball at Foothill College.” “I’m taking a gap year when I’ll be studying drumming in Africa.” I suspect some with less glamorous-sounding plans might have skipped the party. I really don’t know. But the level of achievement among this group was impressive if not particularly surprising.

And then there WE were. The inevitable question in our daughter’s absence: “What’s Maddie going to do now?”

A year ago I began to anticipate the difficulty of the year ahead. My friends, most likely, would be focused primarily on the college application process. This would be yet another time in my parenting life when I would feel a bit on the fringe, even among my closest friends. They’d all be talking about the counselor they hired to help their daughter apply to college, or the SAT prep classes, or the college tours that had begun the year before, when they explored the East Coast, Southern California and maybe the Northwest in search of the perfect fit for their exceptional children. They would lament the impossibility of getting into a University of California campus, the unfairness of the admissions process, the importance of the ultimate decision, and then finally the dread and anxiety they began to feel when the reality of their kid leaving home began to truly set in. And I would have absolutely nothing to contribute besides a whole lot of questions and perhaps some encouraging words.

I was partly right in my expectations. All of that was a big topic of conversation all year. But I wasn’t quite as discouraged about my inability to participate because, quite frankly, it all seemed pretty stressful to me. I had my own particular source of stress, as usual, but I was actually a bit relieved not to be a part of that. Plus I know it’s all coming in a couple more years when our son heads down that predictable path.

By the end of April most all of Maddie’s former classmates had a plan in place. I had heard updates through friends and was nothing but happy for each kid and excited for their future. So I knew the “what’s next” question would feature prominently at this soiree.

“So, what’s Maddie doing now?” they’d ask.

“We have no idea and we don’t care!” I would answer gleefully. It was an honest answer in every way.

Sometimes a follow-up question came. I suspect my original answer was just too surprising to be enough. “Is she going to go to school?” Maybe, I’d say. “Well, is she going to work?” Oh, I don’t know, I’d say. And I really don’t care! I’d say again. We need a break!

My whole focus for several years was simply getting Maddie to finish high school and get that frickin’ diploma! For most of these kids, graduation was more of a stepping stone to what comes next, as it was for me when I was a teenager. For Maddie and me it was The Goal. It was about to be completed, and I could truly bask in the glory of that achievement, likely an achievement that required more tenacity and courage from both of us than the truly impressive academic careers of most of the other kids there. So much to my surprise, the glaring difference between my answer and theirs didn’t bother me one little bit.

Perhaps I have grown. Perhaps my impending relief simply spoke louder than anything else that might have bubbled up in that moment. Perhaps I was genuinely so happy for everyone else that noting else really mattered. Whatever the reason, and I suspect there were many, I was at home among the parents and kids whose paths had been so different from our own.

So, what is next? Probably a whole lot of nothing–for awhile anyway. Maddie and I do indeed need a break. And we’re taking it.

Bag Math

Chris Irvine, Parent CoachLeave a comment

In this final stretch of mandatory school for The Kid Who Refused to Go to School, I’m doing my best to make it fun. This is really my life’s mission: If something isn’t fun, I try to make it fun. Why not?

Some years ago I was having a terrible day – I’m pretty sure everyone I lived with was conspiring to make me go insane, and they seemed to be closing in on success – so I decided to leave for a bit and head into San Francisco. It was a weekend afternoon so traffic was a nightmare and I’m pretty sure there was some huge event going on, so I couldn’t even park. Instead I just drove into the city, around it for a bit, and then headed home. My emotions were boiling over and I was struggling to enjoy anything at that moment. Then I spied two guys in a Mini Cooper driving over the Golden Gate Bridge with that convertible top down. I thought to myself, “If I had a convertible, I would be happy right now.” Of course that’s absurd. Exterior input like the fresh air blowing your hair to smithereens can’t compensate for the internal struggle we all face sometimes, but it certainly looked appealing.

So what I try to do is turn the mundane or the sad or the frustrating into something entertaining. I started making up songs when I was changing diapers 17 1/2 years ago. They were terrible songs sung terribly, but one of those poop-related songs inspired Maddie’s very first laugh, so I put that sucker on repeat. I goof around so much that at one point my kids told me I needed new material. Too many fart jokes, I believe. Once when I was driving the kids somewhere, I noticed the thermometer on the car indicated it was 80 degrees outside. “Eighty-degrees!” I declared. “That’s my favorite temperature!”

“No it’s not,” insisted both the kids. They thought I was joking. I insisted I was serious, but they wouldn’t believe me. And you know why? Because about 80% of what comes out of my mouth is a joke, or at least an attempt at one.

If I’m not cracking a joke, I’m doing the “waffle dance”—you know, because waffles—or the “I hate doing the dishes” dance or doing the worst fake-going-down-the-stairs thing of all time.

So last week when Maddie set her mind to finishing some year-end assessments in reading and math, I put on my silly hat (it’s always available) and we got started. Eventually we got to a problem that required some scratch paper. We were in my sort-of cleaned up room, so I as I scanned the scene for a handy piece of scratch paper, I could only find one thing: a small shopping bag from a local boutique. I grabbed it and said, “We’ll have to use this. It’s bag math.”

And so for the rest of the session, we did “bag math.” Was it funny? Eh, not really, But it lightened the mood and gave us something silly to say as we trudged our way through stuff I don’t remember, stuff she never learned, and a fair amount of straight up guessing. “Bag math” saved the day.

Sometimes when I’m cleaning the kitchen or folding yet another mountain of laundry, I jokingly announce how much fun it is. I hate the drudgery, but it helps to make light of it. Yesterday I accidentally cracked myself up when I noticed that, while absent-mindedly folding a pile of fresh clothes, I had grabbed the bottom of the SHIRT I WAS WEARING and begin to fold IT. Haha! I had a good laugh at myself and finished the job.

Last fall, years after my epiphany about the convertible and how it might have changed my outlook that day, I got one. “Life is more fun with the top down!” is my motto. And I was right: Life IS more fun with the top down, and math is more fun when you do it on a bag.

It’s All About the Pronoun

Chris Irvine, Parent CoachLeave a comment

You know when your spouse says, “We should call the plumber” or “We should clean up the dog poop in the backyard” and you know what he really means is “YOU should call the plumber” and “YOU should clean up the dog poop”? The “we” is really “you,” and you both know it. A little pronoun sleight-of-hand to somehow both obscure and effectively communicate a message.

Last week I was having heart palpitations about the end of the school year, or more precisely, the end of school. Writing that sentence, I realize that might be a first for me. It’s always been the beginning of a new school year that sent my blood pressure through the roof as panic and fear of the unknown swirled in my head. The end of the school year meant a huge sigh of relief, and giant exhale, because for the next ten weeks I didn’t have to try to make Maddie do anything (well, except take the occasional shower). And yes, I still have that respite to look forward to. In fact, it might be the biggest exhale of my life when Maddie clicks “submit” on that last final exam. She never has to do school ever again if she doesn’t want to, and if she does want to, it’s all on her.  It’s completely optional! But in order to get to this particular ending, there is some work to do.

As an independent study student in her online school, she has no real deadlines except at the end of the semester. There are suggested deadlines for quizzes and assignments and tests, but the true deadline comes once. Luckily, with the help of Maddie’s tutor, we are usually somewhat on schedule (she’s always a good 10 or 12 assignments behind, which sounds worse than it is), but last week I looked and she had 23 overdue items (meaning the suggested deadline had passed), not to mention whatever had been or would become assigned but hadn’t yet become due. And then final exams.

Oh my god. How will Maddie ever get all this done? How will I get her to do all that work? I felt the wave of panic I’ve experienced so many times over the years. The insurmountable pile of responsibilities loomed dark in my psyche, the weight of it all sitting squarely on my shoulders.

Later that week, thankfully, I had therapy. I have been seeing a therapist for the last nine years, ever since I had a nervous breakdown from the sheer weight of, well, a lot of things. I am long past the part where you talk about your childhood or your traumas or whatever and figure out how to fix yourself. For years my therapist has been my coach and adviser, my cheerleader and guru. She brings me back to earth when I’m freaking out about, well, anything.

So this time we talked about Maddie and my anxiety over the mountain of work on Maddie’s plate. As I talked, I realized something. There was no way on Earth I was going to allow any outcome other than Maddie finishing and graduating. “She just has to pass,” I reminded myself out loud. “She doesn’t need A’s. She just needs to pass.” I continue to say that out loud to convince myself of the truth of it.

With equal parts realization and conviction, I said, “Oh, we’re gonna get this done.”

“I think you got your pronoun wrong,” she said wryly.

I thought for a moment. “Okay, I’M gonna get this done.” Not we. I.  “I don’t care if I do it all myself,” I said. And I meant it. At this point I would do just about anything to get that diploma in Maddie’s hands, to complete this mission on which we’ve both worked so hard.

What kind of mom announces she will actually do her kid’s last two weeks of school work? Who decides the easy route is the right route?

You know who? The kind of mom who for a solid year taught her child to speak by sounding out words using foam letters in the tub, that’s who. The kind of mom who heard only screaming for the first 25 months of her child’s life before finally hearing the word “mama,” the first recognizable speech ever uttered by her oldest child. The kind of mom who fought back tears through countless SST meetings and  IEP meetings, and changed her kid’s school three times, desperately trying to make the right choice for this puzzle of a kid. The kind of mom who braced herself for a fight–really a frustrating, defeating exercise in futility–every single morning for three years trying to get her kid to go to school. The kind of mom who for the last year has read the world history book out loud to her kid just to engage her in school, doing silly dances or making jokes to make it as much fun as I could–for both of us.

There is no way I would let all of the emotional roller coaster rides, all of the anxiety and worry and tears and confusion and countless hours of just plain old work end in a big fat nothing. So if she can’t make herself do this last little tidbit of work for herself, I’ll do it for her. I’ll do it for ME.

So this time the pronoun is clear: I WILL MAKE THIS HAPPEN. I hope Maddie will cooperate and do the work, but if not, I hope she’s at least along for the ride. In two weeks we can sign off from school forever. And I can pat myself on the back for a job well done.

The Experiment Continues

Chris Irvine, Parent CoachLeave a comment

In August 2015 I had what turned out to be a knee-slapper of an idea: The school year that was about to begin would somehow be The Big Experiment. Maddie was about to to start public high school as a sophomore after three years at a private special education school, and after a year of battling with her over attendance on a daily basis, and years of thinking and thinking and wondering and planning and getting disappointed and crushed and then reviving myself for the next round, we had decided This Was It: It was either This (the public high school)—or boarding school. The idea behind boarding school was since the kids sleep and wake up AT school, they can’t not GO to school. They’re already there! And that’s what I so desperately wanted for my bright, talented, interesting, lovable kid: to GO to school.  Well, and to not have to freak out every single morning over her refusal. I had felt the years of my life slipping away from me as the stress built up in my body and mind. It really was taking a toll, so something had to be done.

Nearly three years—and another new school—later, I realize how naive and narrow-minded my thinking was. The idea that somehow it would all sort itself out in that defined period of time is absurd to me now. What was I thinking? I don’t know exactly, but let me tell you, it got a whole lot worse before it got better.

I’m not sure how many times my therapist had to tell me that just because going to school was what I would have wanted, just because I thought the social part was important, or just because I really thought going to a dance was an important part of the high school experience, those things would necessarily have any meaning for Maddie. It wasn’t until Maddie basically quit going to school in October of her junior year (2016), and I fully gave in to the concept of her not going to school, that I also fully comprehended not only how differently we are made but also how perfectly fine those differences are.

We worked with the school to complete her junior year’s coursework basically in a home-schooling capacity.  But at the end of the year we had to make a decision. The public school is not in the business of home-schooling, we were told. The teachers and administration had been so accommodating! They had bent over backwards to make things work for us, but they could not continue merely sending home work for Maddie to complete without having her attend at least part of the time. They had revised schedules, reduced schedules, minimized the amount of time she would need to be there, but ultimately it just wasn’t happening, so we absolutely had to take another route.

If you are the parent of a child with special needs, you can imagine my mental state at this point. Every new attempt to make things work is fraught with anxiety because you know it may or may not work and then you’ll have to go through the process all over again. You’ll have to rethink and rework and research and try, yet again, to make the best choice for your child, knowing full well this may be just another attempt in a long line of failed attempts to get it right.

With the help of two consultants, we landed on public online high school for senior year. Online because Maddie could literally do school in bed. Public for several reasons: she would have an IEP and they would have to make accommodations; it follows the state curriculum so she would have a diploma from an accredited school in case she wants to go to college at some point; and it’s free. We still pay a lot of money to the educational consultant who works with Maddie twice a week and manages her workload, so free is a welcome bonus.

And guess what? It’s working! There have been ups and downs, particularly for me. Last summer during a meeting with our consultants, one of them mentioned she thought my motivation was to manage all of Maddie’s schooling for this year. “Um, nooooo!” I clarified. “If I had my choice, I would have literally nothing to do with it.” And I meant that. I’ve had it “up to here” with the stress of it all and would gladly have gone on my merry way and let those two ladies work it all out with Maddie and I could just make her food, badger her into taking showers, and then have fun with her. That sounded perfect! “You all just work this out, and call me when she graduates!”

As it turns out, I have participated quite a bit, but our educational therapist is the Overseer of Things, and for that I am grateful. The stress of the school battle was quite literally killing me and I needed to hand over part of the responsibility to somebody else at least for awhile.

I’ll write more about the experience of online school later, but for now I’ll just say this: What I thought was going to be an experiment with an end date and some sort of answer was indeed an experiment, but one without an end. This whole parenting thing is an experiment. I’m still working on it. We are still working on it. There is a lot of talk about what’s next (that’s another blog entry), and I don’t know what that is yet, but it will be something and then something after that and then something after that. And we will forge on, trying to have fun along the way and not losing sight of the end goal: a content, fulfilled, secure human being. In that part of the experiment, I’m pretty confident we’re succeeding.

And Maddie will graduate on June 14th – her 18th birthday.

P.S. Special shout-out to those who encouraged me to start blogging again. Thank you!

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.