Month: September 2015

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;

Disconnecting

Chris Irvine, Parent CoachLeave a comment

When Maddie was born, I almost never put her down during the day. I nursed her, she slept, repeat. (Not to mention a gazilion diaper changes.) I am not exaggerating when I say I wasn’t even sure how to get up and get a glass of water or a snack or go to the bathroom. After all, I had a BABY to hold! I can’t get up. I’m holding the baby! I guess my version of attachment parenting was to be literally attached.

At night I’d put her down to sleep, but even then she was right next to me. She never accepted a bottle, and I breastfeed her for nearly 18 months. In the meantime, she started drinking water from a sippy cup and eating solid food, but until she was a full year, she would wake up multiple times per night to breastfeed. I finally had to ween her off the night feeding or I’d lose my mind. Waking up five times every night isn’t good for a person’s mental health.

I remember those early days so clearly. On rare occasions, we’d leave our precious child in the capable hands of one her grandmas. I knew she was safe and loved, but the pull she had on me was so powerful. After about an hour of separation, anxiety would start niggling at me. I tried to ignore it for the sake of having a date, however brief, with my husband. At the ninety-minute mark, though, I couldn’t take it anymore and home we went. It may have been largely biological at first: my body telling me it was time to feed her.

When Maddie was three years old, she was enrolled in a program for young children with speech delays. She went to a special preschool in another town, about 20 minutes from our house. It was the first time ever that she had a life that wasn’t connected to mine. It was only two and a half hours a day, but I wanted so badly to know what was going on. She wasn’t talking much then, so it remained a mystery. It was a strange experience. It got even stranger when my little girl started taking the bus. I would put her in a car seat and wave goodbye, with a bus driver I didn’t know very well, off for a few hours without me. She absolutely loved her bus ride. and it turned out she was more ready for it than I could have imagined. Once she had a substitute driver who made a wrong turn, and she yelled, “I want to see my MOMMY!”  Wrong way, lady! In the meantime, though, I watched the clock, anxiously awaiting her return home. (In contrast, the day my son finally started preschool–only two days a week–and Maddie was in first grade, it was the greatest day of my life. Six whole hours a week to myself!)

And now, even though my kids are both teens, I notice that it’s hard for me to fully disconnect from my family, even when I’m gone. Wherever I am and whatever I’m doing, my mind is always on my kids, especially Maddie. It’s as if a part of me is still at home. Or maybe that tether that connected me to my children when they were young is still there. It’s just a lot longer.

When Maddie was 12 she went to sleep-away camp for the first time. She was so little and young for her age, but she was dying to go. I was excited about this camp, too. It’s a performing arts camp founded, owned and run by a man who is equally passionate about sports, performing, and special education. It’s not a special education camp at all, but his mission is to make it a place where all kids are accepted and individuality is celebrated. (FYI If you’re interested: <ucamps.org.> I highly recommend it!)

I was happy for Maddie, a bit trepidatious about the whole thing, and a tiny bit looking forward to a week with only one child. It’s so much easier to have only one. But I couldn’t enjoy it at all. I was so anxious the entire week, wondering if Maddie was coping well with the this new experience, hoping she was making friends, wearing deodorant, sleeping okay, getting up when she was supposed to, and generally getting along in a situation of which I was not a part. I was anxious and worried and sleepless and unsettled. There was that tether.

Five years ago my sisters and my mom and I started a tradition which involved a long weekend away for my mom’s birthday, which always falls on or near Memorial Day. That seemed like a good enough reason, I guess, for me to leave my family for a couple days. But the first few years were challenging as I would often get a call from my son because things weren’t going well with Maddie. My heart would be torn nearly in half, one side feeling utterly helpless and guilty for not being home to manage the situation, and the other side wanting to be fully present for my mom’s birthday weekend. In the end, I couldn’t do either one of those things: I couldn’t help with Maddie from 300 miles away, nor could I disengage enough to really enjoy my weekend away.

Even when I’m gone for a few hours, it’s likely I will get a phone call or text, especially from my son. A part of me loves hearing from him. Another part wishes I could just put my home life in a box and put it on a shelf for a few hours so I can truly escape. That seems okay, doesn’t it?

Last weekend my husband was away at a yoga retreat. It was a few hours away at a beautiful, rustic site where there’s no electricity. It’s truly a retreat. He thought about taking his phone anyway, but I encouraged him to leave it behind so he could have the experience as it is intended. He has a lot of responsibility at work, and it can be stressful. This was an opportunity to be totally separated from everything and just relax.

Then it occurred to me. This weekend I get to go away with my sister. I’m so looking forward to my trip! I’ll miss my family but, wow, could I use a break. And you know how I’m going to make sure I get one? I’m going to turn off my phone. Of course I’ll think about my family, and I’m sure I’ll talk about them a lot, but I won’t have to manage anything from far away. I won’t have to hear about conflicts or complaints. I won’t have even have to answer questions! I have a capable husband and two big kids. They can do it.

I’m excited about my decision. I’m also a bit nervous. I’ve never done that before. Every once in awhile I forget my cell phone when I leave the house, and upon realizing that, I feel at first panic and then a secret sense of relief.

But this weekend I’ll still have a hard time not wondering, “Did the kids do their homework? Did Henry get to the soccer game on time? Did Maddie take a shower and brush her hair? Did she get enough sleep? Will she get up for school Monday? What awaits me when I return? ”

I’m pretty sure all moms feel that way. I think I worry a little more because Maddie requires so much extra parenting. And I’m used to handling most of it. But I have to remember: Even if things don’t go exactly as I hope, it’s okay. I have to let go of my expectations. Everyone will be fine, even if nobody sleeps or they eat French Fries for every meal. It’s certainly not what I prefer, but everyone will be OK. Even if Maddie doesn’t shower or brush her hair or go to school. Ugh. I’m not so sure about that last one. I have to work on that.

We shall see. I need a few days to disconnect. Or maybe the word is disengage, for how can I ever be truly disconnected from my kids?

I hope I can do it. I hope you can too someday.

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.

To My Mom Friends

Chris Irvine, Parent Coach2 Comments

This one is kind of hard to write. When I started this blog, I committed to being honest, open, real and vulnerable. I want to show the good times and the bad, the hope and the despair, the struggles and victories and defeats as my family makes our way through this important year, all the while focusing on hope. I want to tell the story of my daughter and me mostly unfiltered. But there are some topics I am somewhat reluctant to share. I may not share everything. I’m not sure. There have been some shockingly difficult times, and I don’t want to hang my sweet daughter out to dry. But some topics are too important for me to omit. This is one of them. And it has to do with my friends.

I live in a truly special community in Northern California. It’s a magical hamlet, and its residents come here for the natural beauty, the proximity to San Francisco, and the stellar school system. Parents here are committed to their children’s education and well-being. I have made the most wonderful circle of friends: smart, strong, caring, funny, talented, creative, kind women who share my values as a human being and as a parent. This is what you get where I live, for the most part. I am so grateful.

This is my message to them:

The most important thing you can do for me is to care about my children. I know you do. You are always there to help with a ride or bring us food after my surgery or let me cry on your shoulder. You appreciate the quirks of both my kids. You seem to get them, and even if you don’t, you love them anyway.

But there is another thing I wanted to ask of you all this time, and that is to include my child. To have your wonderful children reach out to her once in awhile. It’s good for my child, and it’s good for yours. Befriending my autistic child, or even just reaching out once in awhile, benefits both kids. My daughter will feel a sense of belonging, and your child will learn empathy and compassion. I’m not saying your child isn’t already empathetic and compassionate, but special needs people are a unique set of individuals who require more from other people, more openness and acceptance, more selfless friendships.

My son is three years behind my daughter in school. When he started kindergarten, she was in third grade, and she had passed the point where kids invite the whole class to birthday parties. For the first couple of years, I could use that to explain the wide chasm between her social life and his. As time went on, my son still had quite a few friends and an active social life, while Maddie had really only a single friend who wasn’t social at all (I don’t know if it was her or her parents who were at the root of that). So every weekend my son was having multiple parties and play dates, and Maddie was at home. She likes her alone time much more than my son, who is by nature a very social person, but she is also very social at heart; she just lacked the skills required to make a social life happen.

I have many friends with daughters her age, who are intelligent, fun, hard-working, talented, social girls. How I would have loved for them, once in awhile, to invite her over or include her in a party. I understand she could do odd things once in awhile, but nobody could change that. The one thing we could have changed was how she felt in the world at large, particularly at school. Although, come to think of it, perhaps more practice in social situations with neuro-typical kids might have helped curb those behaviors. I will never know.

It’s important to note that the girls at her elementary school were very kind to her. From her first day in kindergarten, my greatest fear was that she would be bullied. She was such an easy target back then, partially because she probably would have been oblivious. But because of my lovely community and the parents here, the girls in particular seemed in fact to feel protective of her. She was petite and emotionally young, so I suspect a maternal instinct a large factor. I was so grateful!

But I never asked my friends to help me with her social life. I just couldn’t. It seemed like too much to ask. Also I guess I hoped people would figure it out for themselves. And that’s not fair to anybody. How is anybody without a special needs kid expected to know what Maddie would have needed? I’m not saying nobody ever did anything (a big thank you to those friends!). But for the most part, once she started school, Maddie and I were isolated when it came to socializing with other kids.

Even Maddie’s birthday parties were terribly stressful for me, so much so that I would procrastinate and procrastinate until maybe we were three months late. Why? Because I was terrified that nobody would come. And then my sweet party-loving girl would know something I wasn’t ready for her to know. I wanted her life to be smooth and happy and for her to feel like she belonged. What a frightening proposition to have a failed party announce so dramatically that she didn’t in fact belong.

So here is my message to you: If you have a friend with a “different” child, please consider having your child befriend them in some small way, even it’s a something small and often, or big and infrequent. These things add up. It helps the parents, the special needs child, and your child too. Your child will learn that “different” people are worth knowing, that noticing the needs of other people is important, that selflessness is a virtue that you encourage and admire.

I’m beyond grateful for the friendships I have. I can’t believe my good fortune that I am surrounded by this truly inspiring group of people. I hope you all have that, too. And I hope that you can do what I didn’t, and ask for what you want for your own child. Don’t be afraid. You might not get it, but on the other hand, you might.