asperger’s

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.

Back to School Night

Chris Irvine, Parent Coach2 Comments

Last week I went to Back to School Night at Maddie’s new school. I gave myself almost 90 minutes to get there, even though it’s normally only a 20 minute drive, because I had to travel in prime rush hour. I hate to be late, especially when my destination is out of my comfort zone. I didn’t feel like going at all because I’m so exhausted but it seemed important to at least set eyes on the new adults in her life. If they’re offering information, I’m taking it!

I parked a couple blocks away for an easy exit and headed to campus nearly 30 minutes early, thinking I’d be the first person to arrive. Well, the school was already buzzing! Parents and teachers were gathered in small and large groups, catching up with each other, munching on burritos they were selling to feed all those people who probably came right from work. I looked around. I didn’t know a single person. Not even a familiar face. I was a little overwhelmed, to be honest. I am so entrenched in my local school community, I haven’t felt this sense of newness and cluelessness since Maddie started kindergarten. Where are my people? I thought. I need my people! 

I became very aware of how Maddie must feel there. Nearly a thousand kids, very few of whom she knows, crowd the halls between classes, talking, going from class to class as if they’ve done it a thousand times. Because they have. New teachers who don’t know her face. A whole established community with a long history of which she is not a part. That was me. Hundreds of parents who knew each other, jamming up the halls, making it difficult for me to get around. Up the hall, down the hall, across campus, and back. I was uncomfortable and self-conscious and subdued.

Before the parents set off to meet the teachers, everyone convened in the gym for a welcome. The principal and various other administration personnel and volunteers made short speeches, and we were off to follow our child’s schedule for the evening. Ten minutes in each class. I’d only been on that campus maybe three or four times, so I wasn’t sure where everything was. A number of times I approached a student for directions. Where do I go? Where is the bathroom? When is this over?  I bet those questions have crossed Maddie’s mind a few times.

My first visit was to Maddie’s special ed class. I’ve met Mr. L several times and exchanged emails and phone calls. I know him a little, and he knows me. Oh boy did that feel good. Also, he’s such a wonderful, concerned, flexible, engaging, kind person. Yes, I thought. This is good. I am relaxed. I’m sure Maddie is too when she’s here.

Then it was off to geometry, drama and PE. Three fabulous teachers who are clearly passionate about what they’re doing and seemed to be fun and engaging. Then back to Mr. L’s class twice. There I finally ran into a couple I’d met once before. Phew! Somebody I know! Finally, the moment I’d been waiting for, science class. Maddie LOVES her science teacher, Mr. K. She loves science already, so having an interesting teacher with whom she really connects might spark her interest even more. That’s just what she needs! A spark of interest to motivate her.  Last week she brought in two of her homemade swords (duct tape!!) to show him. Clearly they have something special.

At the end of the evening, I was elated. This is a special school. There is a real passion for teaching and developing students and preparing them for success. Maddie’s primary classroom is safe, comforting, and accepting. And even though I’m not yet a part of it, I sensed a strong sense of community there.

As we move through this school year, I know we will have good days and bad days. Sometimes I will feel confident and secure in Maddie’s future, and other times I will feel discouraged and wonder what we should be doing instead. I may look into alternatives sometimes. Other times I must just lock myself in my room, close my eyes and breathe. What I should do is revisit this blog post. I need to remind myself that anybody might feel overwhelmed sometimes at a big new school, so that I can have both patience and empathy for Maddie. I also need to remember that Maddie is indeed in good hands when she’s not at home.

Here I am, three weeks in, still hoping and not knowing what will happen tomorrow. But I did get one thing I hoped for, and that is a good, safe place for my daughter. Now I hope the rest falls into place.

That Weird Time She Said Something, and Then Nothing

Chris Irvine, Parent CoachLeave a comment

One thing you quickly learn about parenting an Asperger’s kid is you really just never know what they’re going to do. Yesterday I eagerly asked Maddie about her second day at school. The first day was a celebratory kickoff to the school year, without any real classes to attend. Instead there were a couple of inspiring speakers and a barbecue party. So the true experience was delayed (although it certainly says something about a school that it begins the year like that).

I asked Maddie which classes she’d had and which teachers she met. Trying to remember what her schedule was that day, I asked, “Did you meet your math teacher? It’s a woman, right?” Maddie is great at math and has geometry this year. I loved geometry, and I think she will too, so I’m particularly excited about this class for her.

“Well?” she began. “I got confused, and instead of going into room 225 I went into 223.”

Easy fix, right? Notice you’re in the wrong class and excuse yourself and go to the right one.

“I had a funny feeling the whole time because the teacher had a different name.”

“Did you go to the right class?”

“No.”

“Did you talk to the teacher?”

“No.”

“Did she take roll?”

“No.”

I surmised from her short description of events that she wondered for an hour why the teacher in the front of the classroom wasn’t the teacher on her schedule, and upon leaving the room at the end of the period, discovered her mistake. Her solution was to shrug it off for the day and go to the right class next time.

Head slap!

Naturally, I got a call and email from the attendance person. I hope I’ve addressed the issue properly and she doesn’t get an unintended, unexcused absence on her second day.

Maddie is crazy-book-smart, but sometimes her common sense is up in the clouds. And she does something head-slap-worthy.

On the other hand, sometimes she does something equally surprising on the other end of the spectrum. Something extraordinary.

When Maddie was 18 months old and still nowhere near talking, we decided to teach her some sign language to bridge the gap and relieve some of her (and our) frustration. Surely all that screaming was an attempt to communicate the myriad thoughts in her head. She could finally use her hands to do some of the work.

So we bought a book to help us along. We’d look up signs so we could all learn together. After some time, we all knew more than 100 signs. My favorite one was “please,” which involves placing your hand in front of your chest and moving it in a circle. Maddie, in such a Maddie way, gave that sign kind of a shorthand. She would just quickly and casually brush her hand across her chest, as if knowing she had to say please but not willing to put much effort into it. That always cracked me up.

Another sign that was especially important in our lives was the sign for “lights.” Goodness gracious, was Maddie obsessed with lights. I think babies in general find them pretty interesting, but in true Asperger’s form, Maddie’s passion for lights was unsurpassed. Fans were also pretty exciting. We made up our own sign for “light,” kind of a flashing movement with our hands. Open, close, open close, facing forward, hands out. There was a lot of “talk” about lights. If we entered a restaurant and a single light was out in the far corner of the place, I would be immediately informed. Maddie was On It. Lights, lights, lights. Let’s all talk about lights.

So important were lights in our lives that the made-up sign was the first sign we taught Maddie, before we even got the book to help us along. She was still screaming a lot, but at least lights were something she could discuss in a quieter, more socially acceptable manner.

About a month into the sign language experiment, I took Maddie to my parents’ house for a visit. My older sister Becky and her family were living there at the time, so we had a great afternoon with the cousins as well. They all adored Maddie from the beginning and were pretty excited to begin the sign-language journey along with us. Being quite familiar with Maddie’s love of all things lights, Becky was excited to talk to Maddie about them. “How do you say ‘light’?” she asked, looking for the sign we had taught her.

“Light,” said Maddie.

Until that moment, she had only ever screamed. But there we were, Becky and her kids and me, all staring at this up-until-that-moment nonverbal kid. And clear as day, she had said “light.” If I hadn’t been there myself, I never would have believed it. But she had said it.

And then for the next six months, she didn’t say another word or utter another recognizable sound until the day, at 25 months and 2 days of age, when she finally said “mama.” For those six months, there was more screaming, and thankfully, a lot more signing.

Such is life with an Asperger’s child. You brace yourself for the missteps (like the time she entered a neighbor’s house through the dog door, and we don’t even know these people), and rejoice in the beautiful moments you never saw coming.

In this year of hoping, I will try to focus on the rejoicing.

Hoping and Knowing

Chris Irvine, Parent Coach9 Comments

This is the year I have been waiting for. And by year, I mean school year, because as a mom that’s how many of us view the calendar. The “year” starts in August and ends in June, and the months in between, AKA summer, somehow find their own way of existing outside of The Year.

This is the year my daughter turned 15. She is about to start her sophomore year at a public high school after spending three years in a private school for kids with special needs. Maddie has Asperger’s Syndrome, what is now no longer considered a separate diagnosis from Autism. My fingers are crossed so hard it hurts. I want her to make friends, find her passion, somehow become more organized and motivated so that she lives up to her great potential. Mostly, though, I want her to get up in the morning even when she’s tired, and take showers at a reasonable interval so she doesn’t stink.
I lied before. This hasn’t been “the year that I’ve been waiting for.” Not really. I don’t think in years. Not until just now. Because life as the mother of a special needs child is best taken day by day.
I get up in the morning, hopeful but knowing exactly how it’s going to start. I will wake Maddie up gently, with a loving hug and a back rub, and now perhaps a tail-wagging puppy. I will tell her what time it is, place an outfit on her bed with a can of deodorant right on top so she’ll remember to use it. I leave, hoping but knowing this isn’t the end. I go to the kitchen and make her breakfast and then return to her room for another wakeup. She is unmoved, wrapped in her blanket like a caterpillar in a cocoon.
“Maddie,” I say gently, “it’s time to get up now.” Silence. “Maddie, it’s getting late, you need to get up.” Silence. “Maddie, please just make a sound so I know you’re awake.”
“Mmmm….” she finally utters.
“I made you some eggs. I have to go work on your lunch now,” I say, trying to hide the frustration in my voice. Maybe successfully, maybe not. “Please get up. Everything is on your bed. Don’t forget deodorant.”
I leave again, once again hoping and knowing. This goes on until a panic starts to set in. Most days my husband takes her to the van stop on his way to work. The van will be full of kids, waiting for Maddie to arrive because everybody else was on time. Maddie will be late. Again.
The scene almost always dissolves into mass chaos, with me running around, yelling at Maddie, often hastily shoving her shoes on her feet and tying them for her. Even though she’s a teenager and perfectly capable.
Her hair is unbrushed AGAIN. Most likely greasy because I couldn’t get her to shower the day before. Her dandruff is getting really bad. She isn’t wearing the pants I put out, but instead has chosen a pair she likes better that are smeared with dried avocado. Maybe she did her homework. Maybe she didn’t. Maybe she did it and it’s now under her bed somewhere. I am yelling, my husband is yelling. Somehow they get out the door, her breakfast in her hand. By 7:45 a.m. I feel emotionally depleted, defeated. Again. I didn’t cry, though. I don’t cry much anymore.
At least this is the story up until now. Tomorrow is the first day of her sophomore year, and this is the year I am determined to help her become more self-reliant, self-motivated, even a little more organized. I am counting on her school to hold her accountable in a way her sweet little private school did not. I also know that if we can’t achieve some success, the last resort is a therapeutic boarding school. I will have actually been defeated as a mom, now willing to give her to somebody else more qualified to teach her how to be a grownup. I don’t want to send my child away, but we have to do what’s best for her. For now, we are counting on this new environment to be successful.
So tomorrow is a new day. It’s a big day. But it is still just another day. I am hoping, but not knowing. Not yet.