What a Difference a Day Makes

Chris Irvine, Parent CoachLeave a comment

This weekend I was elated. Maddie had a fair amount of math homework to do, and once I got her started, she went into her room, closed the door, and ACTUALLY DID HER HOMEWORK. I let her listen to music, even though her phone is involved, and that could lead to all kinds of distractions. I assured her at any moment I could burst through her door, so she’d better not be enjoying any screen time or there would be trouble. Happily, to my surprise, she buckled down and did her work.

Some time later, I checked on her. She was on her phone. I admit I was skeptical that everything was in order, but instead of being accusatory, I simply asked, “Did you finish all your homework?”

“Yes!” she answered with enthusiasm. She was light and happy. And now I was too.

“Maddie!” I said. “I think you’re transforming yourself as a student!”

She looked at me and smiled.

“Don’t you think so?” I added.

“Well, I do NOW!” she replied. She smiled. I was so glad I had said that.

I wanted her to feel the satisfaction and pride that come along with that accomplishment. I realized then that this new leaf might blow away with the fall winds, or dry up and disappear by the next day, but it was important that Maddie have this idea that she CAN transform. I believe she can.

Yesterday was a good day.

And now it’s today. It’s only 7:25 a.m. and I’m already rather discouraged. That’s not to say I don’t believe in Maddie anymore. It’s just that reality has set in. One good day doesn’t mean even one other good day.

I woke up her at 6:30. I’m so nice about it. I bring our little white fluff ball of a puppy with me and he wiggles and wriggles and buries his head in her blanket trying to gain access to her face for some kisses. Maddie lets our dogs lick her right in the face, and Banjo was going for it. It’s the best possible way to wake up because you can’t possibly be mad. It’s too adorable.

I stayed for awhile, searching for her favorite sneakers, getting out some shorts for this hot day and a shirt I was pretty sure she’d be excited to wear. And then the inevitably difficult search for a matching pair of socks. She doesn’t care if they match, but since she’s wearing shorts today, I put in some extra effort.

“I’ll be back,” I said.

My mornings are full of trips upstairs and downstairs. Up to work on breakfast and lunch, down to try to persuade Maddie to get up. It’s not unusual for me to make 5 or 7 round trips. (I have developed some pretty healthy calf muscles over the years!) This morning was typical.

Usually by the third time I go to Maddie’s room, I start to get a little stressed out. I try so hard to keep calm, and this morning I was pretty successful. But 15 minutes before the cab was to arrive, she was still wrapped up in her blanket. “Maddie! You HAVE to get up!” I announced. I have to admit, there was probably a little panic in my voice by this point.

“Don’t rip my blanket off! I’m getting up.” Shortly after that she was in the bathroom. Problem solved. It was cutting it close but she was up. It would all be okay.

At 7:10 she still had not appeared in the kitchen. Her breakfast had been sitting on the bar waiting for her. I still had to put her lunch in her backpack and fill up her water bottle. I ran downstairs, and there she was back in bed. She sleeps cocoon-style, wrapped in her blanket head to toe. I couldn’t believe it, which is kind of hilarious now that I think about it. The bigger surprises are when Maddie does what she’s supposed to do. This was a typical morning.

So I grabbed her clothes and together we got her dressed. It’s absolutely ridiculous for me to be dressing my rather curvy 15-year-old daughter. But the point was to get her to school, so I overlooked the absurdity of the situation and did what needed to be done. Well, not overlooked exactly. I just did the absurd anyway.

In her usual fashion, while I was running up and down the stairs as if the house was on fire, Maddie stopped to pet the puppy. In times of panic, she will still stop what she is doing to pet a dog, consider a question, or even just for dramatic effect. That last one makes my blood boil. Well, they all kind of do.

So this morning at that 7:10 mark, when I was scrambling to get her socks on her feet, I asked Maddie, “What were you THINKING?”

The truthful answer: “I wasn’t thinking at all.”

And therein often lies the problem. Most people would at least consider the outcome. It would be obvious that not getting up would come with some consequences. I don’t even think she was planning to stay home exactly. She just didn’t want to get up. Does that make sense? No, not really. But in her mind, only the not getting up part was relevant.

At about 7:18 she headed out to meet the cab in our driveway. I had heard the car drive up at 7:15, right on schedule. I hate for her to be late, but the cab driver is patient.

The moment she walked out the door, I was so relieved. I had been up for about an hour, and that hour is often the most stressful part of my day. My primary jobs as a parent are to keep my kids safe and fed, love them, and to get them to school. There is a mountain of other parenting to do as well, but those are the fundamentals. So at 7:15 when Maddie is gone, I feel triumphant. I really do. I accomplished something really important today.

What will tomorrow morning be like? Probably a lot like today. What about this afternoon? How much homework awaits, and will she do it willingly and independently? I expect to be challenged. That’s me keeping at least one foot in reality. I have to do that, otherwise I will be constantly disappointed. I prefer to be pleasantly surprised like I was yesterday with the homework thing.

Here’s hoping for an easy afternoon and a pleasant surprise in the morning despite the high probability of a repeat of today.

Turning the Corner

Chris Irvine, Parent Coach1 Comment

Thursdays are long days for Maddie. Her cab picks her up at 7:15 for an 8:00 school start. School releases at 3:20 and she usually gets home around 4:15, although sometimes she arrives closer to 5:00. Who wouldn’t be tired after a day like that? A kid who fatigues easily is especially challenged by such a long day.

Historically afternoons have been intense, challenging and stressful for us. Maddie has typically arrived home with little to no energy left, and unfortunately some work to do. She has rarely had enormous piles of work to do, but for her even a short and easy math assignment could spell doom. She was always just out of gas.

I’m sure she loves how each day, after I ask her to tell me a little bit about school, I then launch into a barrage of questions about her homework. I like to attack the problem early, making a plan for the evening. Like most people, she does best if she gets her work out of the way. The later it gets, the more difficult it is for her to restart. So she’ll have a snack and get right to work.

She knows the drill and mostly she accepts it. But it can be a little bit of a challenge to make it happen. I typically have to say the words, “Get started on your homework,” several times. That’s OK. That’s how it is. I try not to show my frustration no matter how many times I have to say it. Sometimes I succeed; other times not so much.

Yesterday the only urgent assignment was science. She had to read a chapter and take notes. Ever since my husband gave her some tips on note-taking (remember I’m the profuse note-taker, and his technique is more efficient), she has developed some confidence in her ability. That was especially apparent yesterday as she got out her book and her notebook and did her work completely independently. I wasn’t even in the same room! (I was in my son’s room helping him with his homework.)

Eventually she came downstairs. I asked, “Did you finish your science?”

“Yes!” she answered with enthusiasm. A thought popped into her head, and then she said the most remarkable thing. “I have to go put my stuff away!” And she ran upstairs to organize her school work and put it back in her backpack.

You cannot imagine the surprise and joy I felt in that moment. What to most parents would be an insignificant comment had so much meaning for me. This is an excellent example of executive functioning, an area in which she has always struggled.

She did her homework and remembered to put it all away. Oh. My. Gosh. Have we turned a corner? I bet that’s what you’re all thinking: Woohoo! She’s turned a corner! Problem solved! Right?

Well, maybe. As always, I’m excited in the moment and hopeful for the future because now I know she has it in her. But will she do the same thing tomorrow? Is this like the time she said “light” and then nothing else for six months? Just because she can, does it mean she will?

The remains to be seen. I have learned to temper my excitement with a big dose of realism. Some days Maddie functions well. Some days she has energy. Some days she is motivated. Some days she is focused. Other days can be quite different. Other days she has no energy, no focus, no interest, no motivation. Helping her overcome those roadblocks is my constant challenge. That’s just how it is.

But the fact that she can do her homework independently and think of what to do next means so much. It means that at least one some days, she will. I’ll take it. “Some days” is a lot better then “never.” Maybe “some days” will slowly become “most days.”

Right now I have a good feeling about that.

A Sword Story

Chris Irvine, Parent CoachLeave a comment

As I’ve mentioned before, Maddie is somewhat of a duct tape savant. If something needs making or fixing, she will brandish her duct tape and insist on using it, for better or worse. Fortunately, now there is a thing called Duck Tape. The silver stuff is for losers. If you’re cool, you’ll use black or white or Hello Kitty or tie-dye or neon orange or green or Star Wars Duck Tape. Or zebra. Or cheetah.

The summer before last, at the performing arts camp Maddie loves so much, she had the opportunity to participate in a sword-making class. The materials: PVC pipe, foam, and–you guessed it–duct tape. There could be no greater match of creative ideas for Maddie than swords and duct tape.

The first one she brought home was covered in tie-dye duct tape. Since then she has made several more, often with bamboo sticks from our backyard or other sticks she finds in the neighborhood. She is inspired by the procurement of the perfect specimen. And she has now added cardboard to the mix. We always seem to have some, so it has replaced the foam that forms the shape around the pipe or sticks.

A couple times this year she has taken a sword or two to school. When she was at her private school, I thought nothing of it. There are all kinds of kids there, and no interest or passion is deemed strange or surprising. I’ve met kids who know everything about trains or presidents, or who can solve a Rubik’s cube in 30 seconds. One of Maddie’s best friends over the years was a girl who not only colored her hair blue and had mastered the art of make-up, but also loved Marvel comics as much as Maddie loves DC. So bringing a sword to school was no big deal.

But I was a little worried about how it would go over at the new public high school. Most of what I know about that school is based on what I’ve heard from other people. It has a reputation for having an atmosphere of acceptance. The kids pride themselves on being “weird.” The students look pretty normal to me, but you never know. It’s all new territory for both Maddie and me.

So imagine my surprise when on our way home from school today, Maddie asked me to stop at the hardware store for some PVC pipe. She needed some to make two new swords for kids at school. A boy named Oliver, whom she had met only once before, admired her craftsmanship, so she offered to make him one. His friend (name unknown) asked for one as well.

I never saw that coming! Not only was Maddie not chastised or ostracized, she was admired! What a nice turn of events.

I have to say, though, this isn’t the first time something like this has happened. When Maddie was in fifth grade, she was a “techie” for the school talent show. Only fifth graders are allowed to work backstage, and she was excited to do it. At first, her job was going to be managing the curtains. I was worried about that. She’s smart and observant, but speed isn’t exactly her strong suit, and efficiently manning the curtains was essential to moving the rather lengthy show along. Fortunately, her job was changed before the show. She was to stand off to the left of the stage, by the stairs, wait for the exiting act to hand her the microphone, and then take it back to the other side of the stage for the next act while it was being announced. So most of the time she was just watching the show from just off stage, on a stair landing slightly lower than the stage.

As you can imagine, most of the acts involved music. And my kid loves music. She also loves to dance. And she has little inhibition. So as the dancers and singers and musicians performed on stage, there was Maddie just over to the left, out of the lights, boogying away. She has some pretty groovy moves, and the audience got to enjoy them throughout the show.

I was absolutely dying in my seat. I didn’t expect this little side show. But watching her just being her loose and groovy self made me so happy.

It made other people happy, too. I cannot tell you how many parents approached me in the hours, days and weeks to come to tell me how much they loved watching Maddie, how she was their favorite part of the show. She was just so free up there, oblivious to being watched, just moving her body to the music to make herself happy. It. Was. Awesome.

Sometimes I worry about Maddie’s ability to fit in. Right now she is spending much of her time with a couple of boys. It has always been easier for her to hang out with the guys. They’re less socially complicated and demanding. I wish she had girlfriends, too, and I guess she does have a couple. But she prefers to spend time with the guys. Maybe it’s because they like things like swords.

I really should stop worrying, though. Clearly she can be her true self, and there will somebody–or a lot of somebodies–who will appreciate her for that.

A Tale of Gratitude

Chris Irvine, Parent CoachLeave a comment

The last few days there has been a massive fire raging in two nearby counties. Tens of thousands of acres are in flames, several hundred houses have burned to the ground. There was so little warning that some people were literally driving through fire for miles with only the clothes in their backs trying to escape. I can only imagine the intensity of grief mixed with relief and gratitude when they reached safety.

There are entire blocks of homes decimated by the fire. Across the street all the houses may have been spared. Maybe an entire block. Maybe only one house on that block still stands.

At least one person has died in the fire. A few people are missing.

The randomness of it all, I’m sure, hasn’t gone unnoticed by residents of that area. And it would be difficult to feel especially happy to have your home standing when all your neighbors have been devastated.

It has been painful to watch footage on TV and the internet. I’m not sure how somebody recovers from that. But they do.

And this all makes me think of two things. First, I am filled with gratitude. We are nowhere near the fire (at least not this one). I have never experienced the fear and confusion of such loss. My pets are here, my family is here, my friends are here. We are OK. We have everything we need, and as far as I can imagine, we that will all continue. But you never know.

A couple of weeks ago, when my husband and son were away for the weekend, Maddie and I were sitting quietly at home on a Saturday night when all of our smoke alarms began to sound. They are wired so that if one goes off, they ALL do automatically. It’s a good system, safety-wise, but pretty annoying when the cause is a steamy shower or my failure to turn on the fan when I’m cooking. Which I do regularly.

But this time nothing was happening. I was in my room putting laundry away. Maddie was in her room on her computer. I looked all around the house, opened the windows and doors as I usually do, but nothing would end the incessant, ear-splitting sound of those alarms. So, I thought, just to be safe, I’d call the fire department. What if something was smoldering in the walls?  I just needed those alarms to stop, and I truly believed there was nothing to worry about.

And there wasn’t. The firefighters arrived, did a thermal scan of the house, and while they were inside, the alarms magically ceased. I was calm and completely unfazed by the whole thing. Maddie and I took the dogs back inside and resumed our quiet evening.

Imagine the opposite happening. There is a fire in the distance. There is no report that you are in danger, no rush to evacuate. And then suddenly it’s almost too late. You are leisurely packing your family in the car to beat the fire, and then your house is engulfed in flames and you barely have time to get out. There are more than a few stories like that.

My life has been uneventful in that way, and for that I am grateful. My closest brush with death, if you want to call it that, was a rather harrowing boat ride in the Caribbean. Our boat was a little too small for the swelling seas, and although we made it safely to our destination, I wasn’t sure it was going to happen. I’m not a strong swimmer, so I kept imagining that if the boat capsized, I was going to be in trouble. But once it was all over, everything was fine. Nobody had even lost any sunglasses. It was eventful, to be sure, but in the end we were just left with memories of a potential problem. We all went home, had dinner and went to bed, and got up the next morning as if nothing had happened.

Second, I am reminded of the unpredictability of life. Some houses were hit by the fire. Others were not. The fire apparently started near a shed at someone’s home, according to reports. The shed looks relatively undamaged, but how unlucky for all those who lived in the path of destruction, whose lives were normal and potentially happy one day, and then in chaos the next. One day they’re making dinner at home, the next day they’re in a tent village set up for victims. One day they’re lamenting their wardrobes, and the next they’re wishing they had just another set of clothes to put on and maybe something to sleep in. One day they’re wondering how to pay the vet bills, and the next they’re searching for their dog lost in the fire.

When we first began the journey with Maddie, she was a little over 18 months old. It was overwhelming and a little frightening, to be honest. I was suddenly the mom of a kid who needed help. I hadn’t attached the words “special needs” to my child, but obviously she had them or we wouldn’t have been going to appointments every day of the week.

One of the many professionals we saw was a physical therapist, a service provided by the Marin County Office of Education. Any child who qualifies can receive free services, regardless of financial need. It’s part of the early intervention program that has proven so effective.

At first, Maddie wasn’t walking. She was awfully big to be crawling still, and sometimes it was embarrassing. Like that time I took her to a children’s concert at the Discovery Museum, and I overheard one mom say to another, pointing at Maddie, “She’s too big to be crawling!” She seemed disgusted…or something. I was probably three feet away. I felt terrible.

But then I got to the physical therapy classroom, and Maddie stood out in a different way. She was cute and smart and interested. And she was largely capable, just physically behind in her gross and fine motor skills. Many of the other kids I saw were in high-tech contraptions that supported their entire bodies, from their feet to their chins. They were kids that weren’t able to engage, either socially or physically. What I had to do with Maddie was just work, but I was confident she would catch up eventually.

I wondered if the other parents looked on us with envy, wondering what my cute little toddler was doing there. And once she started walking, I can’t imagine she looked disabled at all.

And there you have it, I thought to myself. I never once felt sorry for myself or lamented the work I had to do. But there were times when I was awfully tired and sometimes discouraged. And yet, it became clear, things could be a whole lot more difficult. I do not have a child that requires round-the-clock care, I recognized. She never required a machine of any kind to assist her, and she never would. She wasn’t talking yet, but I always had confidence that would come. And it has.

No matter your life circumstances, there is always somebody who has it worse, who has lost more, whose challenges are greater than yours. Maybe you lost your house, but the neighbor lost their home AND their dog. Or even a family member. Maybe you can’t pay your mortgage this month, but somebody, maybe even a neighbor, is going hungry.

For a child on the autism spectrum, Maddie is very high functioning. She is light and bright and friendly. She is happy and confident. You might not even realize she has Asperger’s. You might just think she’s quirky. And people like her! She has required a lot of help to get here, but she is here. And her life will continue to improve.

Today I picked Maddie up from school to give her a break from her often long cab ride home. Her special ed teacher was waiting with her and some of her classmates until they were all dispatched properly. As I pulled up, he waved at me. I rolled down my window. We were both feeling good about how Maddie is doing at her new school. “She’s doing great!” said Mr. L. “She’s coming to school every day!” He smiled and gave me a thumbs up.

“Yes!” I  agreed. “It’s going very well.” I had asked her this morning if she felt as if she were in the right place. She nodded and smiled a smile of content.

Even during the most difficult times–and there have been some VERY difficult times–I have so much to be grateful for. I have a kid with challenges, but she’s doing OK. And we have the resources to help her. We have an extended family who loves us. We have a home in a wonderful neighborhood. We have each other.

Life is good.

Learning to Read

Chris Irvine, Parent CoachLeave a comment

When Maddie was in second grade, we moved out of our house for a year during a massive remodel. When we found our rental, I knew immediately we were in trouble: There is a 7-11 right on the corner and we would pass it every day. I knew to expect requests to stop there for junk food every single time. I’m not obsessive about food, but neither do I want my kids to live on candy and chips. So I made a rule: We could go to 7-11 once a week. We decided on Friday after school. Making a big deal about not going on other days would cancel the Friday plan. I was such a genius!

I was hilariously optimistic about my plan.

One of Maddie’s favorite foods on this earth is Cheetos. She is a very choosy eater, with a small repertoire of acceptable foods. Cheetos are among them.

So one day I had my kids and my mom in the car. I had just remarked to my mom, “Maddie’s NEVER in a bad mood!” That’s mostly true. She’s a chipper kid.

And then, what we now refer to as The Cheetos Incident: Maddie asked me to stop for some Cheetos. “No, not today,” I said.

“Please, Mom,” she said.

“I said not today. We can go on Friday.”

“Please! Please!”

“No, Maddie,” I said, starting to get a little agitated.

“Could we please get some Cheetos?” she repeated.

This went on for a minute, maybe, and I got increasingly perturbed. My voice got a little louder, and I got more and more animated. I was trying to drive and deal with this incessant asking.

“Maddie, I’m getting very frustrated.”

Finally I said, very firmly, “MADDIE! If you don’t stop asking, you will lose screen privileges for the rest of the day! STOP ASKING ME!”

And then it was quiet. I exhaled a breath of relief. I had finally put this issue to rest. I had finally gotten through to her.

And then: “So, can we get some Cheetos?”

“Are you KIDDING ME?” was all I could conjure up.

It was both hilarious and discouraging at the same time.

Years later I would understand what happened.

When she was eleven or so, Maddie had a similar exchange with my husband. She repeatedly asked him for something, and I watched agitation increase as she continued to press the issue. Finally, he blew up. It was a short final exchange, and then he left the room. I turned to Maddie and said, “Maddie, you have to recognize when someone’s getting upset.”

The revelatory response: “Well, how can you tell?”

I couldn’t believe it. It explained everything. She just couldn’t see it coming, even though it seemed awfully clear to me. It was a slow build to a final expression of frustration, and she just had no idea what was coming.

That was a huge moment for me. I finally understood what I hadn’t before: She just didn’t have the natural ability to read emotions AT ALL. Or to predict the likely outcome. It was something we’ve worked hard to teach her. So did her psychologist and her social skills teacher.

So imagine my gratification after a particular phone call last weekend.

I called home at a rather unfortunate moment. My husband was taking the kids to a Giants game. Luckily on the weekends, the whole ferry experience is much easier because the usual commuters aren’t filling up the parking lot. Still, the line grows early, and if you want a seat on the deck, you ought to get there early. I called right at the mad scramble to leave. I talked to each kid and then wanted to have a brief conversation with my husband.

“He’s worked up,” said Maddie.

Yes, he’s worked up! I’m sure he was. It was my sister who pointed out the significance of that simple remark. She remembered the “how can i tell?” story.

I can’t say she can always read people. I mean, who can? But she has come so far.

I’m so proud of her. And so hopeful that she will continue to develop that ability.

Disconnecting: My Report Card

Chris Irvine, Parent CoachLeave a comment

My plan this weekend was to not only physically remove myself from my home life, but, for the most part, mentally as well. With a turned-off phone, the only way to reach me would be to call my sister or phone the hotel. That’s too much trouble, nowadays, so I would essentially be unreachable. It would be up to me to decide when it was convenient to call home.

But it’s day three of my excursion and the only time my phone and I were not available was when I was 30,000 feet in the air. Immediate fail! 

As expected, it’s my son who has attempted to make contact most often. Ever since he learned how to use a phone years ago, he has been the one to call or text me more than anybody else. Once when I camped for a night with Maddie’s brownie troupe, he called me four times before 8:00a.m. I think he was five.

It’s kind of a love/hate thing for me. I love that he misses me, but I also wish I could get away for a couple of hours without that pull from my kids. I don’t necessarily want to handle his requests when I’m out running errands, but I kind of love knowing he’s thinking about me, even though the context is most often assistance on my part. Mostly I want some peace, though. I really ought to “forget” my phone more often.

My first night away this weekend, I noticed I had several missed calls from my son. He had been trying to reach my husband, without success. He needed a ride home from soccer practice. He could ride his bike, but after a full day (and week) of school and a ninety-minute practice, the straight-uphill ride home wasn’t very appealing. So there he was, trying and waiting. And then he called me. I’m not sure what he was expecting. I am in another state. But to appease him, I made the same phone call attempts he did, also unsuccessfully. I knew that would happen. Oh, well. I just told him he might have to ride his bike after all. Soon after our conversation, he made contact with my husband. He didn’t need me in the end, and I couldn’t help him anyway. I had to let it go.

Maddie is quite self-sufficient emotionally. That’s part of autism–a certain type of self-containment. She doesn’t rely on anybody else to make her happy. She is perfectly capable of that herself, most of the time. And that is a wonderful quality. She creates her own happiness.

When I kissed her goodbye very early Friday morning, she did say, “I wish you weren’t going.” But she said goodbye without any more of a fuss and gave me one of her excellent hugs. And I haven’t heard from her since. I’m sure she and Minecraft are having a very good time together.

Late Friday night, an unfortunate realization slapped me on the forehead out of nowhere. My son had a soccer game at noon Saturday, and I had forgotten to get his uniform. I forget those things sometimes. I will remember your name and your phone number (and the number to the pediatrician and the taco shop), who starred in that show from the 70s that I never even watched, basketball stats, what I ate that time 11 years ago when we went to that restaurant, etc. But it’s pajama day at school? Oh. I forgot until I saw all those kids at school in their pajamas. I really ought to write stuff down.

So there I was, late Friday night, knowing there might be a big problem at home. And there was nothing I could do about it. That’s a bad feeling. But I thought to myself, My husband is at home. He can figure it out. I didn’t call or text. I just let go of the worry, knowing it would either get resolved or not, and I didn’t have to bear the burden. And you know what? My husband came through Saturday morning. Soccer uniform procured. Son happy. All was well. I do wonder, though, how much grief I would have gotten upon my return if that hadn’t worked out so well. Actually I don’t wonder at all. I know. I would be reminded over and over. Such is my life.

My phone is still on. It feels too weird to be completely unavailable. I love my family. I want to hear their voices. I want to get a friendly hello text. I want to know how the soccer game went (not very well, apparently). I want a few days freedom, but I don’t want to let go quite THAT much. So far I think I’m letting go just enough. It’s a good exercise for all of us. I am still learning that life can go on without my immediate participation, and the kids are learning that too.

I’ve never had a 13-year-old and a 15-year-old before. It’s an interesting time for all of us. I both want to not be needed so much, and sort of mourn when my efforts to make that happen succeed. I yearn for my kids to be self-sufficient, and I’m nostalgic for the early years, when my babies were still practically part of me. I can’t imagine doing the baby thing again (I’m too tired), but that closeness is something I treasured so much.

Really, though, the closeness is still there. It’s just different. I love my kids not just because they’re mine, but because of the people they are becoming. I appreciate their humor, I admire their bravery and strength, I love their creativity in its various forms, I love their kindness and perceptiveness. I love the questions they ponder, their passions, their curiosity. I put up with their stubbornness, and even wish I had more of that. I still think they’re adorable when they’re sleeping. I miss them when I’m gone.

But it’s good to be gone sometimes. We are all OK. Life is good. I’ll both be happy to be home and and dreading of the week to come, wondering how it’ll all go down. For now, though, I will enjoy my little weekend adventure. And I will know my family is surviving–even thriving–without me.

The Magic of Tuesdays

Chris Irvine, Parent Coach1 Comment

Well, at least this Tuesday was magic.

The prior two Tuesdays, Maddie wouldn’t go to school. At all. My friend mentioned last week that Tuesdays are hard for her, too, because she really felt like the week was underway but there’s still a lot of it left. She really feels the work load of the week on Tuesday. I guess the weight of the week feels heaviest at that point. I’d never thought of it that way. Maybe that’s also true for Maddie. I don’t know that she could articulate it that well (my friend is an EXCELLENT articulator of her feelings), but it’s an interesting theory.

Unfortunately Tuesday will always be Tuesday. It will almost always be the second day of the school week, and likely the second day of her work week, so there’s no way around it. However much you might hate Tuesdays (or Mondays or whatever), you still have to get up and go. You have to do it anyway!

Since Monday was a day off, Tuesday was more like a Monday this week, and now it’s a Wednesday, so it seems we have escaped the Tuesday problem for once!

I will call the last two days successes on all fronts. Yesterday was a bit stressful as Maddie got up at the last minute and I had to put her shoes on her feet and tie them, in the interest of time. And homework was a little bit of a struggle because we were both pretty tired in the afternoon.  Even though yesterday was a bit stressful, I got her to school, which is my ultimate goal. And I didn’t have to lose my temper, which is a close second. Maybe they’re tied for first!

Today she got up in plenty of time and we had a leisurely morning. She was able to sit and eat breakfast and brush her hair and go outside before her taxi came. Woohoo! And then this evening she did her homework willingly, took a shower when she was asked (there were a couple new rolls of duct tape at stake, which helped). And she even stopped in the middle of an important project (using duct tape, of course) to get ready for bed. She was cheerful and cooperative and adorable and charming. Right now she’s upstairs singing loudly to a Florence and the Machine song. Life is good.

Maddie doesn’t know why she was motivated today, so there’s no way to know how to repeat our success. I just rejoice in the good days, as always.

Of course I’m kidding about any magic being involved with any of this. Everyone has good days and bad days. We all hesitate to get out of bed sometimes, or eschew responsibilities because we’re just not up to taking them on. There may be an identifiable reason. Or not.

We’re working on pushing through those times. Just doing it anyway.  I guess those are the days I should really rejoice in–the ones when she’s reluctant and tired but gets up anyway. When she’s too tired, but does her homework anyway. Those are the days when Maddie will learn grit, and learn to do it anyway.

When she was younger, writing anything at all was probably her worst enemy. I think there were just too many aspects to conquer – both thinking up what to write, and then the physical act of writing it down. Her fine motor skills were weak and her pencil grip was terrible, so her hand would get fatigued quickly. And abstract thinking of any kind was nearly impossible for her. So when she would come home with a writing assignment, the homework session would inevitably dissolve into panic and tears. A blank piece of paper was the worst possible thing she could face.

So I figured something out to help her: Fold the piece of paper in half. Then the blank paper looked more manageable. I called it “Maddie-sized.” That seemed to relieve some of the stress, at least enough to allow her to write down something. Anything, even if it wasn’t much or wasn’t particularly good. My goal was to get her over the hump, to let her build enough confidence to not be so paralyzed by this very important activity.

Over the years, she has developed a passion for writing. Can you believe it? She still isn’t crazy about expository writing, or any kind of compulsory writing. But she spends her time in the taxi writing stories on her phone. It can be an awfully long ride, so I offered to pick her up from school instead, but she insists she likes it. She enjoys the writing time. That is what I call a success!

And that is how I look at our journey together. Success doesn’t lie in the things that come easily. It also doesn’t necessarily lie in conquering something, achieving anything, or winning anything. Success comes when times are tough and you make it through. When you think you can’t do something but try it anyway. When you are afraid, and then you try it and eventually find out you might even like it.

It also comes in building a solid relationship with your kid. “You’re adorable,” I tell Maddie. “You are too,” she says to me. She smiles and hugs me tightly, making sure both of us are standing up for the maximum possible contact. We squeeze each other. We appreciate each other. And we both know it. I guess if I never make any more progress with Maddie, I can still be proud of that. And happy.

So this week has been successful. I’m happy and proud and hopeful. More successes will come if we keep trying. Maybe this will be one of those times when good days turn into an entire good week. But if not, that’s OK. We’ll keep plugging away.

To Cure or Not to Cure

Chris Irvine, Parent CoachLeave a comment

Let me get right to the point. I’ve never spent an instant thinking about curing Maddie. I believe diseases need curing, and I don’t think what Maddie has is a disease. It’s just a way to describe the way her brain works. In some ways she is not programmed to easily conform to society as we know it. In other ways, she has some huge advantages. I don’t think of her as disabled. She is just Maddie. She has some challenges most of us don’t have, just as she has some special gifts.

If you have been following my blog, you know that our experience with Maddie was kind of a slow burn. There wasn’t a particular turning point or set of “symptoms” that suddenly appeared. Her diagnosis at age nine was simply a way to describe and better understand what we had observed about Maddie over the years. It was a relief for us all.

But it took about two years for us to have the guts to tell Maddie. I was so afraid that knowing she had Asperger’s would detrimentally affect her self-image. Would she think there was something wrong with her? How would she take that news? Fortunately, she had been seeing a psychologist for over a year (this is the doctor who gave us the diagnosis). They had formed an excellent relationship, and Dr. E offered to help us deliver the news. My husband and I took Maddie to see Dr. E, who showed an age-appropriate short film about Asperger’s and then explained how that applied to Maddie. The movie was so great: It explained how people’s brains worked differently, and when a person’s brain works this particular way, it’s called Asperger’s. There was no stigma attached; it was just a way to describe somebody.

Maddie took the news well. So well, in fact, that she announced on our way home that the next day she would be informing her teachers. I couldn’t believe it. Not only was she not upset, she seemed kind of relieved! Finally, a way to understand herself better and a way to explain herself to others.

There have been some troubling times throughout Maddie’s childhood, many of which I can directly attribute to Asperger’s. There was a time when Maddie had such difficulty understanding and expressing her feelings, when she got upset, she expressed her anger or frustration physically by lashing out. But my (and my husband’s) thinking has always been this: She may have some challenges, but it simply will require some extra work to help her through them. We’ve never thought for a moment that somehow taking the Asperger’s out of her was necessary, possible, or even a good idea.

One of her main challenges it her processing speed, which relates to output. She is quick to understand and learn, but when it comes to, say, writing something down, the process is painfully slow at times. Most of the time when I’m trying to get her attention, I have to say her name at least three times before she responds. Maybe five. Maybe she still doesn’t respond. It’s so frustrating to get to five with no response. Sometimes I give up. But it’s not that she’s purposely ignoring me. It’s more like her brain has received the message but is just taking its time to process what that message is before she can respond. Our world doesn’t accommodate the delay very well. Everything is fast, everything is now, everything is hurry up. Is it wrong to be slow in that way? No, not really. But we are not set up for that. So, you might ask, where does the problem actually lie? Is it in Maddie or our society? Who’s to say?

I’ve met people over the years who spend inordinate amounts of time and money seeking out a wide variety of therapies to cure their children. There are different types of body movements, diets, detoxes, and who knows what. Some of them sound OK. Some sound really strange. I don’t know if they “work” because I don’t even know what that would mean. How do you cure a person of an entire part of their personality? I don’t know.

What has been shown to be effective with autistic children is early intervention, meaning help in a variety of ways as early as two years old. Preschool ages. Kids will work with occupational therapists to learn to regulate themselves and become more self aware, in addition to building core strength, fine motor skills, and a better mind-body connection. There are social groups to help kids learn by rote what they are unable to pick up by observation. Speech therapy to help with language, actual speech, and social skills. Those approaches are great because they merely teach a kid skills and build confidence to function in the world that surrounds them.

I can imagine that parents who seek out a cure have kids with much more severe challenges than Maddie has. In most ways, Maddie is more than able to navigate the world. She’s resourceful and fearless and clever and friendly. She’s articulate and funny, too. Her Asperger’s may very well be why she’s not self-conscious, completely nonjudgmental, immune to peer pressure, and completely removed from the drama so often attributed to teenage girls. What a gift!

Maybe, though, if I had a child who was nonverbal, or self-harming, or who suffered from paralyzing social anxiety, I would think differently. Maybe I would see Maddie and her autism as two separate things. But Maddie is my child, and I have no thoughts of making her a different person. I don’t always understand her, but that’s okay.

I hope to help Maddie have a fun, happy life. I hope to help give her the skills required to do that (as do all parents). I want her to be appreciated for who she is. I hope people learn to have empathy for her when they don’t fully understand her. I hope she is understood. I hope she continues to love herself.

Today she loved both of us enough to get up on time and have a relatively relaxing morning. “I don’t know what motivated me,” she said after I thanked her. I’ll never know. But that’s okay. I take it one day at a time, I love every part of her. I think that’s probably enough.

The Zen Guide to Parenting an Asperger’s Kid

Chris Irvine, Parent CoachLeave a comment

Recently my husband went on a yoga retreat. He’s been doing yoga on and off for years, and he finds it calming and centering. Mainly, for him, it’s just excellent exercise. And he enjoys it. Or at least enjoys the feeling he gets at the end!

I’m grateful for my husband and the other people who joined him on his yoga retreat. He has a stressful job. He tends to be stressed out. If something can help him, I want him to please do it.

I grew up in a loving, close family, with hard-working parents who were able to supply us with all our basic needs, but not as much extra as everyone around us. While other kids were getting new skis for Christmas, we were unwrapping socks and pajamas. One exciting toy would have been included when we were kids. Even a bike my parents somehow acquired for a good price. And we kids were happy. But there wasn’t a lot of talk about existential ideas. There just wasn’t room for that. We always had enough to eat, but often at the end of the month, dinner was made with whatever was in the cupboards because we were out of money. I grew to hate spaghetti and tuna casserole because that’s what they represented.

My parents are loving and kind, but the example for us was that life was work. My mom and dad worked so hard and didn’t complain. There were setbacks once in awhile, too. We moved several times in the course of two years as my dad sought out a job that would pay enough to support his wife and three girls. My mom ended up taking a job, too, after staying at home with her kids for many years. The message to me was: You work, you take what comes at you, and you accept hard times and you just move on. You might very well have a miserable job, but you do it because you need a job. Happy is a luxury. Life is work. You just do your best.

So to me, the idea of spending one’s time and energy pondering great questions like, “What can I do to fulfill myself?” and “What job will make me truly happy?” have seemed frivolous. If you get to think about that, was my thinking, you are allowing yourself a true luxury. Most people in the world are thinking about how to get the next meal on the table. This is a question for rich people and rich people only.

This thinking has been a double edged sword, I think. Maybe triple edged. On the one hand, I find contentment more easily, probably, than a person who is constantly striving for more. That’s a good thing. Not happiness, necessarily, but acceptance and contentment. Am I on cloud nine? Sometimes. Most of the time I’m probably at about a 4 and a half.

On the other hand, I might be better off if I could indeed pursue this line of thinking and put more effort into self-fulfillment. That sounds so good! I do volunteer at the elementary school (even though my kids graduated) and this blog is really meaningful, but I don’t spend a lot of time thinking about that stuff. They’re just things I do.

If there could be a third hand, it would be this: The Zen philosophy, from what I understand, promotes the acceptance of What Is in your life. That’s not to say you don’t make changes, but the idea is that you put forth effort and then let go of the outcome. If there is one lesson I have learned as the mother of an Asperger’s kid, it is precisely that: Try, but let go of the outcome. 

Notice I don’t use the word fight. I’m not fighting anybody or anything. I’m not fighting Maddie, I’m not fighting the school system, I’m not even fighting autism. I’m trying to help Maddie live the best life she can. And I don’t even have a picture of what that is, exactly. And I’m grateful for that. I do my work, and I try to be happy with that.

I would imagine very few people fully internalize that idea. It’s one thing to understand it on an intellectual level and quite another thing to put it into practice. That is my journey, and I’m making baby steps.

Will all my efforts to help her get organized work? I have no idea. Will her grades ever reflect her intellectual capabilities? Beats me. Will she go to college or be able to hold down a job? Now we’re getting into some tricky territory. I want to let go of any expectations because the outcome would indicate a success or failure on my part. And I don’t want to measure myself that way. For one thing, it’s out of my control, really. For another, I’d prefer not to think of my life as a series of successes and failures. As a parent of any child, it’s best to let all of that go. As I’ve said for many years, you do your best as a parent, and then you cross your fingers and hope your kid turns out okay.

There are moments, though, when the uncertainty of the outcome with Maddie is overwhelming. It’s hard not to feel that your child’s adult life isn’t a direct result of your parenting abilities. For my son, it’s easy to imagine his future in a way. He is motivated and ambitious. He will go to college (where, I have no idea), he will forge a decent career in something, he will get married and have kids. I realize the future is never that certain, but I know these are all likely to happen. I can see it. I’m not afraid for him.

But as much as I want those things for Maddie, her future seems harder to predict.

For the sake of both my children, though, a more Zen approach to mothering is healthiest. I will do my best to support my kids, to love them and teach them and model for them. That is all I can do. I’m not sure how well “hoping” fits into the Zen philosophy, but I’m not letting go of that. I will do what I can, and hold onto hope for them both.

Adults with Autism

Chris Irvine, Parent CoachLeave a comment

Most of my focus on Maddie is in the day-to-day, but lurking in the back of my mind is the future. Always. All the energy I put into parenting her now is an attempt to prepare her for whatever is to come. All that is uncharted territory for me, though.

So when I come across an article like this one in the NY Times, my anxiety is activated. Granted, Maddie is much higher functioning than the man who is the subject of this article, but the reality is that our society is not well equipped to provide services for our special needs kids once they are adults. I hold onto hope that Maddie can live relatively independently. She’s bright and resourceful. I believe that if she sets her mind to do something, she will do it. That’s a big IF, though.

Only time will tell.

Here is the article:

<http://www.nytimes.com/2015/09/06/opinion/sunday/adult-autistic-and-ignored.html?action=click&pgtype=Homepage&module=opinion-c-col-right-region&region=opinion-c-col-right-region&WT.nav=opinion-c-col-right-region&_r=0&gt;