autistic teen

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.

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.

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!