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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.

We Have Ourselves a Graduate

Chris Irvine, Parent Coach3 Comments

June 14, 2018, was perhaps the greatest day of my life. I say that often when a surprise achievement by Maddie unveils itself. At the time, I absolutely mean it. There were those few days when, anticipating yet another fight-full school morning, I was met instead with a fully-dressed, smiling teenager ready to go. Or those times when I opened Maddie’s door prepared to fight over a much-needed shower only to find her with wet, semi-clean hair. In those moments, the sense of relief is so palpable it’s hard to imagine a better feeling, so I will announce, “This is the best day of my life!” with full conviction.

On June 14th of this year, two things happened. First of all, my first baby, the person who made me a mom, turned 18. Suddenly she says thing like, “I should probably know more about that stuff because I can vote now.” Um, what’s that now? Civic awareness from the kid whose universe is primarily in an online world?

Second, we finished high school. And yes, I do mean “we.” Just as I predicted, I completed some of her work myself. I didn’t do that much, really, and in fact her grades were high enough in the end that she could have probably skipped those assignments altogether and it wouldn’t have mattered. But I just don’t function that way. I have hard time doing less than is requested, much less required. Plus I wanted her be in the best possible position for finals, so that even a terrible exam score wouldn’t sink her.

So I wrote a letter about improving workplace conditions during the second industrial revolution. She had no idea where to begin, so I would say, “Well, what about a law requiring overtime pay?” “That sounds good,” she would say. And then I would write it up. “How about compensation for on-the-job injuries?” “Sure.” And so I wrote an informed, intelligent (but still somewhat simple) piece and turned it in. Her tutor worked with her on math and English, and I, as usual, took on history and science. We worked through the study guides together, which helped us prepare for what was to come. I also resigned to Google an answer here and there, which I would never condone or recommend under normal circumstances. In fact, because I wouldn’t let her go that route winter semester, we both nearly lost our minds. But these, I think we can all agree, were not normal circumstances. And so we used the resources that were available to us, I like to say.

I pulled up the online exam for world history and, unwilling to face the torturous three-hour slog that almost killed me last semester, we wizzed through what we knew together and guessed on or Googled the rest. Then we pulled up the biology exam. She thought she could manage it herself, which was great because somehow my 50-year-old brain felt unable to conceive of how mitochondria do this and dRNA and mRNA do that. Too tiny of a world for what I normally must process everyday, I guess.

I was looking up something on my computer when Maddie said something. “Uh-huh,” I said absent-mindedly, trying to entertain myself while she worked on her final. She said it again. “What?” I finally asked.

“I’m finished.” I’m pretty sure she answered twenty-five questions in five minutes.

“You’re DONE?!” I probably sounded less astonished than you’d expect because I’m quite sure I hadn’t fully embraced the magnitude of those particular words.

She was done. She was DONE. Done with her last final. Done with high school. Done. Done. Done. She became a legal adult and a high school graduate in the same day. We did it! Maddie and I and all of those teachers and specialists had pulled it together after thirteen years and hundreds and hundreds of nearly impossible days. And you know what? I don’t like to boast too much, but I have to take a lot of credit for this. All of the trials and successes and failures, all of the thinking and rethinking and thinking some more, all of the tears and frustration and despair, all of the days I just felt completely drained of energy and ideas but still remained hopeful enough to give it even MORE—it all paid off. Whether or not this diploma ends up meaning much to Maddie, it means an awful lot to me.

She had opted out of a graduation ceremony. She doesn’t really care about ceremonies or celebrations to begin with, and because she graduated from online school, the whole event would have been impersonal, and we wouldn’t have even known a single other person there. We had also planned a birthday dinner out that evening, but she decided later that day she’d rather stay home and play with her online friends. And so that monumental day came and went without any fanfare. She wasn’t sure when she’d fully comprehend what had happened for some time. But I most certainly did. After all, it was the greatest day of my life.

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.

(Avocado) Toast Is Life

Chris Irvine, Parent CoachLeave a comment

This blog entry is a call for help! Seriously, I need help.

Once I saw a story about an autistic boy who would eat ONLY donuts. Not one other food item passed through his lips. So his parents let him eat donuts all day long. My husband was horrified. I totally got it. I hope that kid didn’t develop diabetes or balloon to 600 pounds, but I had sympathy for everyone involved in that situation.

Truth #1: Although she’s not as limited as the donut kid, to say Maddie is a picky eater is an understatement.

Truth #2: You can’t really force anybody to do anything, at least not after you can no longer physically pick them up anymore. And you definitely can’t force anybody at any age to EAT anything.

I’m sure a percentage of you is thinking, “Uh, yes you can. You serve them food, and eventually they’ll get hungry enough and they’ll eat it.” If that is you, my friend, you haven’t met Maddie. You have also probably not met a person with autism.

Maddie does like donuts, but luckily she likes more than donuts. But only about three things more. She hasn’t really eaten fruit since she stopped eating baby food, which was kind of a long time ago. OK she eats one fruit, but it’s the least fruity of the fruits. It is the magical and delicious avocado. Her pediatrician at one point did say, “That’s the perfect food!” and I was delighted because that was about the only thing she would eat that actually just grows and then you just pick it and eat it. I mean, OK, we usually cut it up or smash it and add garlic salt, and nobody eats the skin, but you know what I mean.

Her other likes are in the category of “white.”  Pasta…with butter and cheese. Rice…with butter. Vanilla ice cream on a cake cone.. String cheese or white cheddar.

White, white, white.

“Toast is life” is her mantra.

Luckily she’ll eat eggs. So I have mastered the scrambled egg. On toast, of course.

She also likes honey roasted turkey and, very specifically, cold, dark-meat chicken with salt.

She will also eat cheese pizza without too much sauce, but only on occasion.

And then there’s the real crap, like Cheetos (not white, but also not really food) and the very occasional and appropriately maligned fries and chicken nuggets from McDonald’s. (Question: what is the voodoo they use to make you feel both stuffed and hungry at the same time? I don’t know but it scares me.)

And there you have it: her diet in a nutshell. There are probably a few other white foods I’m leaving out, but you get the idea. (Oh, yeah, pancakes and French toast and croissants).

Several months ago she announced she had decided she should eat an avocado every single day. I was surprised that she was thinking much about anything with the word “should” in it. But now I try very hard to maintain our supply of avocados, which at the moment I’m failing at because yesterday she discovered the most magical of food combinations—avocado toast—and that’s pretty much all she’s eaten for the last three meals. That’s good because it’s better than the old avocado with chips snack she favored, in which one molecule of avocado is consumed with each chip.

Also yesterday something incredible and exciting and terrifying happened: Maddie asked me how she could lose weight. Incredible because she that’s a sign of her own self-awareness that I rarely see. Exciting because her health would benefit from both weight loss and a better diet. And terrifying because she is so darned picky that I don’t know how or even if I can help her make this happen.

“Are you not happy with your body right now?” I asked her.

In response, she wiggled her hand to say “so-so.” She didn’t appear upset in any way, just informative and practical, which was a huge relief for me.

I said, “Well, what I do when I want to lose weight is I cut back on things like bread and pasta and try to eat more fruits and vegetables.”

Simple? Yes! Easy? God no, especially not for this kid. I like salads and certain fruits when they are perfect and in season. I like lots of green things. So I can adjust my diet pretty easily. But what do you do when you can’t force yourself to eat fruits and vegetables?

This is not simply a preference for Maddie. This is where her previously overwhelming sensory issues, which have otherwise mostly vaporized, still rule her life. Trying new foods isn’t just a matter of interest or lack thereof, it’s a matter of fear. Even if this new flavor might even be OK, there’s a good chance the texture might be a dealbreaker.

But for the moment she is curious and even a little bit open to expanding her repertoire. Part of me wishes she would have waited about a month to bring this up because I was reserving my mental energy for the final school push. And now this is consuming my thoughts.

How will I help her? CAN I help her? Who can help me help her? Who knows how to help a person with such serious food aversion change what and how they eat? What might she like? I would be happy if she added two new fresh foods to her diet. Just two! That sounds doable in a way, but an insurmountable problem in another way.

I will try to combat my fears and anxieties with doing things and learning things. We will try together. We will take teeny tiny baby steps. This, like everything else with parenting, is about the long game. And so, we shuffle one foot forward and look forward to moving the other one.

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.

When a Mole Hill Really Is a Mountain

Chris Irvine, Parent CoachLeave a comment

This week I think Maddie grew up a little. Or maybe she was just acting crazy. We shall see.

Sunday my wonderful teenage son was apparently doing tricks with knives when his finger and a sharp blade had an unfortunate and unexpected meeting. My first clue was his voice coming from his room: “MOM! BLAH BLAH BLAH BANDAGE!” I’m sure what he actually said was, “Mom, get me a bandage!” or some such thing, but at least I heard the key word. I rifled through our always (unfortunately) disorganized box of first aid supplies and found a nice thick gauze square and ran downstairs. Sure enough, there was a rather bloody finger and a pretty upset guy.

After a minute or two of trying to gauge the situation, we decided a trip to urgent care was the best coarse of action. I ran downstairs to tell Maddie, who was in the shower (woohoo!) and the two of us took off.

After lots of waiting around and a rather uncomfortable session with a needle full of lidocaine and then five stitches, we returned home. All was well with the exception of a pretty sore finger.

What I didn’t know at the time was that my son had, in a fit of panic, left the water running in the kids’ bathroom. And the only reason I found out was because of what Maddie told me later.

“When you guys were gone,” she said, “I noticed the faucet was still on and then I noticed water everywhere. So I turned it off and cleaned up all the water and left the towels in the tub.”

Oh. My. God. She cleaned it up and then, like the genius she is, put the soaking wet towels in the tub so they wouldn’t ruin the floor. I’m not sure who else in my family besides me would have done as well. (No offense, guys, if you’re reading this.)

I was floored. That sounds like such a trivial thing, really, but in my house it’s not. Maddie is so capable of so many things, but she’s not always great at cleaning up (hilarious understatement) or following through. I was both surprised and gratified.

When she was young, she once decided to make the whole bathroom into a pool. She put a towel up against the door and flooded the tub until she got her wish. Unfortunately, that water eventually had to go somewhere, and I don’t know about you, but we don’t have a drain in the middle of any of our bathrooms, so the “somewhere” was basically “everywhere.” All over the wood floors in the hall and into the next room. Ugh. Actually I think she did that twice. At the time, and for years afterwards, her plans tended to be rather short-sighted. If something sounded like fun, that was really as far as she needed to think before she proceeded to make it happen. She used to dump out entire Costco-size $50-bottles of my fancy shampoo while she took a bath too. Those times provided my earliest data that no, in fact, my head would probably never ACTUALLY explode, because I’m sure it would have then.

Of course all our kids have done head-scratching things, as evidenced by all the photos I see on Facebook of kids smeared in diaper rash cream, or art-wearing babies and their toddler sisters standing next to them holding Sharpies. The problem was Maddie was no longer a toddler—not even close—when she was purposely flooding the bathroom without a thought as to how to dispose of the water.

But now she is seventeen. Things are bound to change. And they have. I still find myself having to coerce her into taking showers or brushing her teeth. The upcoming school year remains an empty page, too. I’m not especially confident that removing the “going to” part of attending school will be the solution, but we have to try something. Having ADHD (which is part of an Asperger’s diagnosis) doesn’t mean a person can’t focus on anything. In fact, if she comes up with a duct-tape project, I dare you to try and stop her. But writing a paper on a subject she doesn’t find interesting, or doing multiple math problems that seem to repeat themselves, just aren’t particularly motivating for her. I can’t remember a time when she announced, “I have homework” and then got it out and did it. Most years I had to sit next to her just to keep her focused. I didn’t necessarily have to help her, but rather just keep her on track.

So, here we go again, I keep thinking to myself. It’s still school, after all.

Yesterday her tutor Kim came to pick her up for lunch. Kind of a “reacquaint and start preparing for the new school” kind of a thing but without any work or expectations. I had to leave about 90 minutes before Kim’s arrival. The night before that Maddie and I had been in the hot tub when I suggested she just get straight into the shower after that since she was already wet. “My body is too tired,” she said. I tried to convince her of my genius idea, but she was adamant. Instead, we hunkered down to watch The Incredibles for the gazillionth time (it’s been years, though, to be fair). But before I gave up on the shower thing, I talked to her about making the decision. So often she promises to do something in the morning that she doesn’t feel up to at night, and then bails out in the morning as well. That can go on for days, as her hair gets greasier and rattier and her teeth yellow and her BO hits Code Red levels. But I also have noticed that when she’s really committed to something, she’s quite reliable. The problem is in the committing, and only she can know if she has truly committed. So I thought I’d talk to her about that.

“I believe in you,” I said. “When you decide to do something, when you set your mind to something, you always get it done. The key is in the deciding. You have to decide right now that you’re going to do it, I mean REALLY decide. And then I know you’ll do it.”

She nodded in agreement. “Oh yeah,” she agreed. “When I set my mind to something, you couldn’t stop me.”

And then finally, “I’ve decided,” she announced. Of course you can never really know what’s going on in somebody else’s mind, so I just had to accept her commitment and move on.

“Well, then I know you’ll do it,” I said.

The next morning just before I left for my morning appointment, I woke her up. “You’re going to take a shower, right? Kim’s coming at 11:20.”

“Yup,” she said, still under her covers. Oh, I’ve seen this many times. The insincere affirmative answer and then the predictable outcome.

There wasn’t much else I could do at that point, but I knew my appointment would be over by 11:00, so I told her I’d call her later. Honestly I wasn’t expecting much. Historically meetings with Kim go like this: Maddie doesn’t get out of bed, so Kim has to somehow talk her into getting up and getting dressed and it’s a whole long scenario from which I typically remove myself (as in, leave the house) mainly to preserve my sanity.

As planned I called just after 11:00. “I’m just calling to remind you to get up,” I said, clearly thinking she’d still be in bed.

“I showered and I’m dressed,” she announced.

I probably said, “WHAT?!” but hopefully I was more composed. If life were a musical (which I always wish it were), I would have broken into a song and dance for sure. Something glorious and uplifting.

These are the moments I feel tears of joy pooling in my eyes. My heart is full and I feel hope. The hope I felt when I saw those soaking wet towels in the tub. She got herself up and she took a freaking shower! Who IS this kid?

And then, She can do it, I thought to myself. And by it, I meant life.

All the thinking and effort and talking and more thinking I put into this parenting thing is having an effect. She is growing and maturing, and although she’s younger in most ways than other kids her age, there is progress.

So many parents I know have just taken their kids to college for the first time or have that next chapter of parenting in their sights. They’re nervous about how their kids will fare. Will they be able to care for themselves, the parents wonder. Will they feed themselves OK? Do they know how to do laundry? What happens when they get sick?

“Don’t worry,” I tell him. “They’ll figure it out. They always do.”

Will Maddie “figure it out?” I go back and forth on that one. But right now I’m feeling a bit more optimistic. She is figuring some things out. She might be 30 when it all clicks. She might stay with us forever. We don’t know. But moving forward sure feels good.