The Year of Living Hopefully

Well, hallelujah, it’s the weekend! We survived the first week of school, thanks in large part to having only three days to deal with, and the fact that Maddie hasn’t had any homework. Time for a break! And the weekend definitely means a break.

One wonderful thing about Maddie is she is generally in a good mood. She’s very easy to get along with…unless you ask her to do something she doesn’t feel like doing, like get up or take a shower or do homework. Actually her mood might not change, but there’s a good probability that mine will. So summertime and weekends are simply delightful. I suppose if I were a better mom, I would require her to do more around the house on those days. That would be awesome. She would probably be more disciplined and would have learned how to do things like do laundry, clean a toilet and scoop dog poop by now. But I guess I’m selfish because I don’t let her off the hook for her benefit nearly as much as for my own. I need a day off too.

So, in the spirit of a day off for all of us, and in honor of Maddie’s general cheerfulness, here are two amusing anecdotes:

A few years ago we bought a nice new Samsung washer and dryer. They were the most highly rated appliances in their categories, and our friend had recently bought the same models after a lengthy research project. We thought it was a no-brainer. Well, apparently we had a couple of lemons because time after time I had to call for service. In the first three years I had to resort to using the laundromat many times while awaiting repairs. We live in a small community and I had been hiring a plumber from nearby to help out. You know the term “plumber’s butt”? It’s a real thing, as evidenced by every single one of those guys who showed up and then squatted down to check out the washing machine.  On one particular occasion, I was upstairs in the kitchen, Maddie was in her bedroom, and the plumber was just outside her door working. I was walking toward the stairs when I heard it.

“Hey plumber, you should pull your pants up.”

Well, we’ve all been thinking it. She just had the nerve to say it. My eyes widened, my hand flew over my mouth, and I ran in the other direction to let out my explosion of laughter.

This year we went to Kauai for spring break. Somehow after so many years of traveling, we finally figured out that the whole airport experience is a gazillion times easier if you take a taxi there and back. No more shuttle to and from the long-term parking lot! That’s especially important at the end of the trip, when everybody is exhausted from the travel day, it’s probably fairly late, and we just want to get home. One time we returned from a 22-hour travel day only to have forgotten where our car was parked. It was cold and it was late and it was terrible. Never again. So, to get a taxi at the airport, you just go to the appropriate area and some guy directs you to the next available taxi. That is just how it’s done. It takes just a moment or so and you’re off. So we had just arrived from Hawaii, and we were assigned our cab. Our driver helped us load the luggage and then got in the car while we my husband sat in front and the kids and I organized ourselves in the backseat. Maddie was the last one climb in. And then:

“OH MAN! WHAT STINKS?”

“Maddie!” I whisper-yelled,

“No SERIOUSLY! Something stinks! It smells like somebody cut the cheese!”

Well, the only person who had been the cab 10 seconds before was the driver. If somebody had cut the cheese, it had to have been him.

“Maddie you can’t say that!” I whisper-yelled again.

“Oh!” she replied, as if this was news to her.

Then silence. Oh boy, was that an uncomfortable first few minutes. That 35-minute ride could feel like hours. Fortunately we were able to start up a very interesting conversation with the driver, who had a lot of say about Über, and the tension arising from the fart remark eventually dissipated.

That’s all for now. Happy weekend, everyone!

You like my title? Ha ha! I was just kidding.

I’m happy to report that we’ve had two lovely, easy, successful mornings in a row. No running, no yelling, no freaking out of any kind. All unicorns and rainbows. Woohoo!

The bad news is that after so many years of parenting an Asperger’s kid, I realize that only means one thing: We’ve had two lovely, easy, successful mornings in a row. Come to think of it, I did take a different approach this morning because a certain somebody was pretty tired after her first – and very long – day at her new school, and was still all wrapped in in her blanket at the 30-minute mark. So taking a cue from my sister, also the mother of an autistic teen, I brought Maddie her breakfast in her room and let her eat it in bed. For most moms, that probably sounds absolutely ridiculous and overindulgent. But I thought, well, I really want her to have a good breakfast, I don’t want her to run out of time, and perhaps that would get her up and moving.

Fist pump! It worked! That’s the good news. The bad news, once again, is that I have no idea if that’ll ever work again. That’s the 15-year-and-counting story of parenting Maddie.

The thing I learned early on, before there was a label associated with my child, is that parenting is a constant experiment. You can say that to some degree about any kid. “It’s a crapshoot,” is how I sum up parenting in general. But for my daughter (I have a son, too), that mantra is even more relevant.

When your child is very young, you are told “find their currency.” Figure out what really matters to the child and use that as a carrot (or stick, I suppose). Will your child be motivated by a chart, which when filled up will result in a prize? Will cheesy little do-dads in a bowl be the thing? Maybe your kid loves a particular stuffed animal, and wouldn’t dream of being without it. Or it’s all about the iPad or Nintendo. I have a friend whose kid loves books so much that the threat of taking those away is enough to get cooperation (as she marvels at the “threatening” words coming out of her mouth: “I’ll take all your books out of your room!”).

Since Maddie was very young, her currency was impossible to determine. The problem is, in the moment when that currency is up for grabs, she simply does not care about it. She never has. I remember when she was maybe three years old and she had taken all of her brother’s clothes out of his closet and dumped them on the floor. Well, it seemed to me she ought to put them back. So I asked her to do it. No way, she clearly communicated. I was surely exhausted and was spending way too much time doing laundry-related things already, so I was not going to let her just walk away. So, I said, “If you don’t put those back in the closet, I’m going to take your otter away.” Otter was her first love, a Beanie Baby she met in Carmel-by-the-Sea when she was not quite two. There was no possible way she was going to give Otter up. Ha! Wrong. After a series of threats, I’m pretty sure the outcome was going to be a bedroom devoid of ALL her toys and six weeks of no TV.

Huh. That didn’t work. I don’t remember what finally happened with those clothes although I imagine I just shoved them all back in the closet cubbies. What I do remember is the realization that Maddie didn’t have a currency when she was sticking to her guns, which was often. I suppose if I had actually emptied her entire room she might have been bummed out. But in the moment when I was trying to “motivate” her (is that really what I was doing?), she just didn’t care at all. Not one bit.

She has always been that way. That girl can remain unmoved by the most dire threats (no TV EVER!) and some pretty appealing rewards (I’ll give you $100 if you go to school all week!). Nope and nope. Well, the truth is every once in awhile, one of those things might work. (In those moments, I am in utter disbelief.) But it might work only once, and the next day I’m starting all over again. I try to avoid negative consequences because they’re pointless, but in moments of frustration or weakness, I can’t say it never happens. I try to be positive and go with rewards when I can, but it’s a rare occasion when that works. I just try to rejoice in our successes.

Thirteen years ago, we were at a gathering at the house of a mother of my friend (shout out to Joan Metcalf). She observed Maddie, and said to me, “Being stubborn will serve her well in life. The hard part is getting from here to there.” Truer words have never been spoken. I have a wonderfully stubborn kid and that will serve her well (see future blog post “Peer Pressure LOL)”, but for now it’s a constant experiment. Today maybe Plan A will work, and it might never work again. Or I might try four iterations of that plan, and just eventually give up, choosing peace over discipline. (That’s a topic for another yet blog.)

So, here’s The Exact, Precise Way to parent Maddie: Be flexible. Be creative. Be loving. Never make it a battle of wills. Be prepared to fail miserably. Be proud of yourself when you don’t. And even be proud of yourself for trying. Go forth. Tomorrow is a new day.

When Maddie was in third grade, some behaviors reared their ugly heads in our house. Perhaps one day I will go into more detail about this, but for now suffice it to say she was acting out physically, especially toward me.

Maddie was born sweet. She really was. She was generally content and happy as a child. I do recall, however, a reluctance to express herself even she was an infant. If she was hurt, she would stifle her cries.

“Cry!” we would tell her. “Let it out!” But it was her way to keep it inside. We didn’t have any idea why she was so reluctant to express herself even then.

Eventually, however, Maddie began to change. She was eight years old. At first it was just a general sassiness that I hadn’t seen before, best exemplified by the way she would stick one hip out and place her hand there for emphasis to show her irritation. Other moms might have been angry or offended, but I thought it was so funny. She had just never been that way before, and it seemed to come out of nowhere. My response was to stick my own hip out, in an exaggerated way, throw out my hand and place it on my hip, and say “Oh, really?” Fortunately, Maddie found this amusing rather than infuriating.

But during that year, as her hormones were probably starting to stir, her emotions became more intense, and her emotional maturation was not met with equivalent verbal abilities. So when she got mad or frustrated, she just couldn’t express it well. For many kids on the autism spectrum, identifying and communicating emotions are challenging tasks. Whereas most people learn those skills more naturally, for these kids it’s kind of a required class. She needed to learn how to put a word on her emotions and then say it out loud.

In the face of this challenge, Maddie turned to her body to express those “negative” emotions. If I wanted her to do something, and she didn’t want to do it, and I continued to press, she became increasingly physical. I knew she was still sweet inside, and that it was frustration from her lack of emotional savviness that led her to this behavior, but I had no idea how to parent in this particular circumstance.

Once she even said it wasn’t okay to say the word “mad.” I told her so many times that not only was it okay, but that was desirable. I would even give her the words along with intonation. “I’m really mad at you, Mom!” I would yell, giving her permission to do the same. Most parents were telling their kids not to yell, and I was showing her how. But it wasn’t helping.

So for the first time I turned to a child psychologist for help. It wasn’t so much that I wanted help for Maddie. I wanted someone to help me figure out how to parent her. I knew I wasn’t equipped.

Maddie would meet weekly with Dr. W., who first worked to build a relationship with Maddie that would help Maddie open up. The purpose wasn’t to explore Maddie’s deepest thoughts and motivations, but rather to help Maddie learn to think and speak more abstractly. Much of that was done through imaginative play, which for a long time was nearly impossible for Maddie.

And then, occasionally, I would meet with Dr. W. to discuss Maddie’s progress, what was going on at home, and what I could do to both help Maddie develop her skills and avert future physical outbursts. Eventually we talked about things like personal hygiene and doing homework, since Maddie was struggling with the idea of having to do anything in particular.

One topic that came up a lot was charts. Make a chart to show her what to do in the morning. Make a chart to keep track of her homework. Chart this, chart that. It sounded reasonable, in a way, during our meetings.

But as it turned out, I am not a chart person. Neither is Maddie. I am not the most organized person in the world. I’m just not. I know somebody who bought a laminator for her special needs kid, and I know why: you will be told to laminate cards that tell your kid how to do everything. And it’s cheaper and more convenient to do it at home. I once had a laminator in my Amazon shopping cart, but that’s as far as I got. Oh, well, I guess I can be proud of myself for being realistic.

Reward charts are HUGE in the special needs parenting community. I know they’re pretty popular with parenting little kids, too, and I didn’t do it then either.

Here’s what I did try over the years:

1. A series of laminated cards with images and words describing, in order, the steps Maddie needed to take to get ready for school in the morning and/or get ready for bed. She never looked at them.
2. A chart for tracking and rewarding Maddie’s morning routine and homework completion. Big rewards awaited at the completion of a column. She never looked at it, even at my suggestion.
3. A prize basket full of fun, inexpensive items so that Maddie would get immediate rewards, since it seemed too abstract to Maddie to accumulate points for some future reward. She earned a prize exactly once. And then she didn’t care anymore.

So I gave up on that stuff. And apparently Dr. W. wasn’t happy about that.

As everyone with a special needs child should, we have had a whole team of people working on our behalf. And I really mean a team. My own psychologist, Maddie’s psychologist, and Maddie’s psychiatrist, and even her social learning teacher at times, would consult with each other about what was going on with all of us. It’s a gift to feel like you have so many people on your side.

On one particular occasion, Dr. W. was discussing our family with Dr. R., my own psychologist and personal guru. Dr. W. was frustrated. “I’m always giving Chris things to do at home and she doesn’t follow through.” She mentioned some of the items listed above. Well, she was right, I might have tried a couple times and then given up. Maybe I should have stuck it out longer. Maybe eventually Maddie would have lit up at the idea of a reward, either now or later (not likely later, though).

I had some guilt already. I’m just not a charter. Wouldn’t it be wonderful if I was that parent for Maddie, a magnificently organized mom, with a daily schedule posted for all to see, for whom consistency and structure came easily? I know other parents like that. I wanted to be like them, but I wasn’t. I’m still not.

But in the conversation between the two doctors, something magical happened.

“That’s not Chris’ gift,” replied Dr. R. “Her gifts are her flexibility and empathy. She is able to read Maddie and know what she needs in a given moment.” She’s a fan of mine, I happen to know. She knew that charts just weren’t going to be the magical answer, but believed that what I have to offer is so much better. I may not be structured, but I can move and change as my kid requires. And that’s easy for me.

So all those years of feeling inadequate because my charting skills fell short were wasted. I will never be the person who has a week’s menu planned out on Sunday. I go to the grocery store three times a week and can barely figure out what to get. I don’t have Taco Tuesdays and Spaghetti Fridays, although I know my son would love it if I did. And I will never be that person.

Some days I’m a bear about homework. Some days I’m not. Some days I’ll push the shower agenda. Other days I won’t.

But there are reasons for that. At some point I realized I could tell by Maddie’s body language and expression, when she hopped in the car after school, whether she was up for any tasks or not. If she’s wasn’t, I figured that pushing my agenda was a recipe for disaster, and who needs that? Maybe today she’s energetic and happy and can crank through her homework, so I’ll stick to my guns. Maybe tomorrow she’ll be depleted and need dinner in bed. And I’ll give her that. Happily. I’ll hug her and rub her back and give her what she needs that day. We’ll turn on a funny show and relax together. And everything will be fine. Now that she’s in high school, I do try to push her to do homework more regularly, and she’s more able to do it most of the time. But I’m constantly reading her and reading the situation and figuring out the best course of action (or at least trying to figure it out). And so far, the best course of action has not ever been to make a chart.

I will never forget when Dr. R. relayed that psychologist-to-psychologist conversation to me. I was so relieved to be recognized for my gifts (in fact to realize they actually were gifts) , and I was able to forgive myself for what I had perceived to be failings for so long. I now see that for our family, my flexible approach is what works best. Sure there are things we could all do differently and probably better. Isn’t that the case for everybody?

I hope you all have a Dr. R. in your life, somebody who sees in you the beauty of what you have to offer, especially in the face of challenges like ours. Whatever gifts you have to offer–and I guarantee you have many–have a powerful impact on your child and your family.

Thank you to everyone who’s read my first two posts, and to all of you asking for a report after the first day of school. Not much to tell, actually. Maddie had a great day of fun and despite a 90-minute cab ride home, was in good spirits upon her return. But she did grab her dinner and retreat to her room to watch some anime she’s into. As expected. Tomorrow is another day.

In lieu of an interesting anecdote from today’s events, here’s a classic Maddie tale from years ago, a funny story that also serves as an explanation for why I don’t have a story for today:

I don’t know how much it was a personality thing or an Asperger’s thing, but for the first many years of Maddie’s life, she just didn’t have much to say.

Developmentally, Maddie’s speech was slow going at first. For the first 2 years and 1 month of her life, the only utterances that emerged from her mouth were screams. When she hit 18 months and hadn’t even begun to babble, we began to think perhaps we needed some help. We took her to The Developmental Pediatrician of the Bay Area to get her assessed. She was also not walking yet. Her intellect was clearly developing normally, but her gross and fine motor skills were lagging.

Because she was so young, it was too early to diagnose anything in particular. So the diagnosis was “low muscle tone/high risk.” Whatever that means, we thought, but that diagnosis expedited our entry into physical therapy and occupational therapy.

Around age 2, we were able to find a speech therapist for her. Shortly thereafter, she finally uttered her second recognizable sound at 25 months of age (the first one is a whole other story, coming soon). “Mama.” Yes, “mama.” No more beautiful sounds have ever escaped the mouth of a child than that first, long-awaited word. When your child is struggling with the typical development schedule, each teeny tiny step forward is a momentous occasion. The first word of any child, of course, is an unforgettable event for most parents, but we waited so much longer than most, and endured a whole lot of frustrated screaming in the meantime. So my heart nearly exploded with joy when my little Peanut finally said my name.

Finally! Finally, after all this time without a word, I might begin to know my child in a way all my other friends were knowing theirs. What has been on her mind that whole time? I wondered. What will she say? 

Well, it turns out, she wouldn’t say much. While other little girls were soaring verbally (so much that their parents sometimes wished they would just shut up for a little bit), Maddie remained reserved with her speech, even as she entered school and was generally caught up. So there she was off at kindergarten, and I had no idea what in the world was happening all day. I would ask her, “What happened at school today? Can you tell me a story?” I was met with a shrug, or an “I don’t know.”

I have two theories on this: 1) Although she was verbally up to speed, it was still a bit of effort to say a whole lot, so she opted out and/or 2) the social and attention requirements of the school day left her utterly depleted and she was just done by the time the bell rang.

Then she entered second grade. She was still the same Maddie. I kept up my daily inquiry, always met with the same silent shrug.

Until, apparently, something so momentous happened during the school day, she just had to share it.

“What happened at school today?” I asked, AGAIN. (What an optimist!)

“Well,” Maddie began to my utter astonishment. She was about to, FINALLY, tell me a story about something that had happened to her. I couldn’t believe my ears. I was so thrilled. Something so funny or sad or exciting had happened that I was about to actually hear about it from my own kid!

“Well,” she continued, “today this boy Luke’s pants fell down around his ankles during recess.”

She laughed. I laughed. It was a funny story, and even funnier to me that it was a pants-less boy that finally stirred her up enough to tell me a story. It was a short story, to be sure, but neither of us will ever forget the day a boy lost his pants at school. Apparently everybody kept their clothes on today.

After yesterday’s post, I imagine you’re all wondering how this morning went. Ninety-eight percent of school mornings are a stressful mess, and the other two percent are, as I like to call them, “The best day of my life.” Seriously, that’s what I say: “This is the best day of my life.”

Today was one of those. Thanks to Daisy, the dark gray tabby cat who pretty much lives in Maddie’s room, Maddie was awake before my 6:05 a.m. wakeup visit. I placed Banjo the puppy on her bed, and his wiggly, kissy greeting perked her right up. I asked her to get up because I “really need a hug,” and being the excellent, committed hugger that she is, Maddie stood up and threw her arms around me, and we held each other tight for a minute. What a lovely way to start the day.

There was some scrambling to find a particular shirt I had fluffed up in the dryer the night before (picture day!) and a futile search for a particular shoe, but other than that it was smooth sailing. She had time to eat breakfast and brush her freshly washed hair.

Because she has a district placement at a school 20+ minutes away rather than our neighborhood high school, she has free (!) transportation to and from school in the form of a taxi that comes to our house. After the driver knocked on our door, Maddie ran to her room to get a hat (must wear a cap and fingerless glove). She picked up her backpack and was about to walk out the door, when I said, “Wait! I want a picture!” She posed her cute self for a photo, and then I hugged her and said, “Have a super fun day today!”

“How could I not?!” she responded.

That might be what I love most about her. She is always up for a good time, and takes it upon herself to make it so.

I hugged her again and said goodbye, and she was off.