special needs

Five Beautiful Words

Chris Irvine, Parent Coach2 Comments

The first time Maddie said anything (okay, the second, after the “light” incident), she said “Mama.” It was a long time coming, so even though all moms cherish the moment their child says that magic word, it was especially sweet for me. Twenty-five months of waiting and working finally paid off.

And today, Maddie is incredibly articulate. She’s not a huge talker necessarily, but she’s always on point; when she says something, it’s worth your attention.

But today she said something so magical, it was almost as exciting as when she said her first word.

Today’s memorable quote? “I’m gonna take a shower.”

If you’ve been following my blog, you know that personal care has been a huge issue for her. To be more accurate, her lack of personal hygiene has been a problem for me. We’ve had some terrible conflicts over her refusal to bathe herself. I can’t stand the teenage B.O., for one thing. But more than my own sensory torture, I’m concerned with how her failure to keep clean will affect her socially. NOBODY likes a stinky person. Well, maybe other stinky individuals, but we live in a society of good-smelling people who bathe regularly, so greasy hair and smelly pits just don’t do a person who’s already struggling socially any good.

So when she appeared in the kitchen with a towel, her phone, and her bluetooth speaker in hand, I couldn’t even fathom what she was up to. “Whatcha doing?” I asked.

And then she said those beautiful five words, “I’m gonna take a shower.”

When you have a child with delayed development, each minute achievement feels huge. I remember the entire year that followed “Mama.” Each sound was so slow to come. She would try and try to figure out what her lips and tongue were supposed to do to make a new sounds. “Nnnnn,” she would finally say, and it was cause for great celebration. A new sound! Woohoo!

It wasn’t like typical language development, which we often take for granted. Somehow babies absorb everything they hear, and their brains are able to make sense of it all. For Maddie, the words made sense; she just couldn’t move her mouth properly to make the sounds that form the words.

So, “mama” was first. She was 25 months and 2 days old. “Dada” came a little later. And that’s when we started calling her Maddie instead of Madeline. Making sounds was so difficult, and putting them together into a word was nearly impossible, so we thought the least we could do put her own name within reach. At first she referred to herself as “Ma-Da.” I separated those syllables because that’s how it sounded. “Ma. Da.” It wasn’t long before she could say that. What a relief that must have been for her! Instead of pointing to herself, she could actually say her own name!

The way I helped her learn words was really teaching her to read. We spent a lot of time with foam letters in the bath tub. I would stick them on the side of the tub, and we would sound out words. For a long time she said “wot” for water. Adding another syllable was too much. She said “c-at,” and just “hh” for her brother’s name.

By the time she was two and a half, she could read a few words. I would write the names of our two cats on a white board, plus “mom,” “dad,” and her brother’s name. She could identify them with ease. Whether or not she could actually say them was a different story, but by that time she knew the sounds associated with all the letters purely out of necessity. I didn’t set out to teach her to read; it was just a way to practice speaking, and especially combining sounds.

When you have a typical kid, you just can’t fathom the miracle that speech acquisition is. But when you have a kid whose every tiny forward movement is the result of hard work, it suddenly becomes miraculous.

And so it continues. I would bet that if you don’t have a special needs kid, you don’t remember your kid announcing they’re going to take a shower. Big deal. People take showers.

This isn’t the first time she’s ever said that, but it’s such a challenging issue here at our house that even one crisis averted is momentous. Those words might not be magical necessarily, but I feel like a million bucks. I’ve had a hard day. That one moment just made it all better.

And then something else happened. I had put a pot of water on the stove, intending to make pasta for my son. I then went to my room and started to write. Sometimes I lose track of time when I write. I get on a roll and everything else fades into the background. And so it was tonight. About 15 minutes into my session, I remembered the pasta. My son was waiting for it, and he’d been in kind of a bad mood all day. I knew I was going to hear about the delay.

I raced to the kitchen to toss the pasta into the boiling water, and right away I noticed the timer said 5:17 and was descending. Maddie was sitting in the kitchen texting her cousin. I realized she had seen the water boiling and taken the initiative to get the pasta going. For me. For her brother. It wasn’t for her at all. But she was observant enough to notice, and thoughtful enough to do something about it. To her it was no big deal. To me, it means the world. I am raising a good person. All the work I have put into parenting her is paying off.

And she continues to amaze me. Some days are so hard. Sometimes she gets stuck in her own head and can’t see beyond herself and the moment. And other times she is thoughtful and engaged and motivated. Sometimes she announces, “I’m gonna take a shower,” and notices I need help and does something about it.

Those are the breakthroughs. Those are the times I want to hold onto. Those are the things that define the person she really is. And she is awesome.

The Reason I Write

Chris Irvine, Parent CoachLeave a comment

Recently I was thinking, after posting the story of yet another challenge with my daughter, about the content of my blog. I started this project as (1) an avenue for sharpening my writing skills and (2) a way to express myself in the face of some difficult circumstances. Once I decided to write, the subject was obvious. This is the thing I have to talk about.

It just to happens that the subject of my blog–parenting my Asperger’s kid–is fraught with a tremendous amount of emotion. Much of that emotion is sadness, frustration, and anger. Some of it is also hope (as you know, I’m focusing on that), admiration, and gratitude. My days are unpredictable. I think a lot, I feel a lot, but mostly I just cope. And I try to be optimistic. And I often fail at both.

This is definitely the story of my daughter and me, but I hope it’s much more. Because once this blog got rolling, I found my true purpose. And that is to speak for all of us parents of autistic kids. Or parents of special needs kids in general. And sometimes even just parents.

What I hope to do is be honest and open about this aspect of my life, to share my victories and defeats, my successes and failures, my moments of genius as well as all the times I royally screw up. I want you all to feel less alone in your struggle. I want the rest of my readers to have more insight into the life of a special needs parent.

So when I tell the story of a particularly terrible morning, it’s not to get your sympathy (although that’s a nice side benefit). It’s to illuminate the kind of struggles the parents of autistic kids might face, to lay bare our frustrations and fears.

I also realize that kids on the autism spectrum are individuals, and that our stories are unique to us. Some kids on the spectrum are very motivated but have social anxiety, the opposite of my daughter. Some kids are rigid and angry. Some kids are emotionally fragile. Maddie is easy-going and happy, stubborn and impossible to motivate. Some parents are more organized than I am, some have been ferociously fighting for their kids since they were toddlers, some have yet to fully recognize what they are dealing with.

But the overarching story is the same: Our kids reside at least in some ways outside of our society’s expectations, and they struggle to fit in. And we as parents have anxiety over how to help them now, and what their lives will look like in the future–next week, next month, next year, next decade. We love them fiercely, we want to both push them and protect them, we feel their pain and rejoice in the tiniest of victories. We feel alone much of the time, as if a chasm exists between us and other parents with only typical kids. We know they don’t know what our lives are like. We know they can’t. It’s a unique experience, parenting an autistic kid. Those of us who do it need each other. And this is why I write.

But something else miraculous has happened in the process of writing my blog: I am better able to clarify my own thoughts and feelings in a way I really hadn’t before. When you write things down (hello, journaling!), you take what might be murky ideas and emotions and put them into words. And it turns out words are really helpful! I might start a blog entry feeling defeated and sad, and by the end I’ve decided to forgive myself and be happy, to focus on gratitude and hope. What a gift!

The truth is that every day that I write, I am finding those things anew. I wish I could say these little daily epiphanies stick with me and that I am suddenly transformed. Nope. It’s a journey, a process, a lifetime project to figure out what to do and how to do it and how to find happiness and joy and cope with fear and hopelessness and frustration. And each day I work on those things. I write them down here, hoping the writing will help all my mental lightbulbs stay illuminated at least a little bit. Maybe a bunch of little lightbulbs will accumulate and eventually light my path so that eventually I can see very clearly where I’m going. We shall see.

In the meantime, I hope my blog is helping some of you. It is certainly helping me.

Life Lessons on Friendship

Chris Irvine, Parent CoachLeave a comment

Recently I wrote about the stark contrast between the social life of my 13 year old son and that of my daughter. It breaks my heart sometimes.

And then this happens.

Maddie has a friend and classmate named Jordan.* She went to the private school with Maddie and then, at the last minute, showed up at the public high school as well. She’s a very sweet girl with wonderful parents. They are making a real effort to encourage the friendship between these two girls. I am so grateful.

This weekend Jordan’s mom reached out to invite Maddie to spend the afternoon swimming at their house. Not only are these people lovely, but they also have a pool! I call that a win!

At first Maddie was excited. She said, “Well, I do like Jordan. And I do like to swim!”

How wonderful, I thought. Finally Maddie has an invitation to do something with a friend.

And then, this morning, my son decided he wasn’t up for an outing he had planned with a friend. Apparently the idea of bailing out seemed appealing to Maddie as well. So now she wants to cancel. She likes Jordan, but she’s not up for an afternoon of socializing.

“You have no social life!” I told Maddie. “This is a chance to get together with a friend!”

And then she was offended. But that is the truth. The ONLY person she really wants to socialize with is her cousin. She is a lovely kid, and she and Maddie are the kind of best friends all girls should have. They’re kind to each other, and they can be fully themselves. And since they’re cousins, there is a lifetime connection that will always be there. I am so grateful for their relationships.

But I want Maddie to branch out. I want her to be able to make other friendships, especially with girls. I know that she mostly spends time with boys at school. She always has, and I have long suspected it’s because they’re less socially sophisticated and therefore less demanding. She doesn’t have to navigate the complexities of girl friendships. And in a way I can appreciate that.

And then when school’s out, she retreats into herself. She watches her anime show, she plays Minecraft, she spends hours making swords, she’ll go out into the open space behind our house and pick flowers or blackberries. That’s what makes her happy. And all of it is solitary (actually Minecraft often involved online friends, if that counts).

So here I am, very anxious about Maddie’s social life. I want something for her that apparently she doesn’t want for herself. I don’t know what to do with that. Should I help her develop her social skills with girls or just let her be? Am I trying to force something that’s not important or meant to be? I don’t know the answer to that.

I believe that if she went to Jordan’s house today she would have a great time. Jordan’s mom would ensure a good time. She’s that kind of person.

I often try to make plans for Maddie, with her consent, of course. She resists. She’s not interested. Ever. She can’t seem to overcome the idea that even if a friend has very different interests, they can manage to be friends and have a good time. Or even that if she has committed to something, keeping her promise is important. She doesn’t want to hurt anybody’s feelings, but in the moment her own desires are taking precedence. I’m not comfortable with that.

The word autism comes from the root “auto,” meaning “self.” Her system is focused on “self.” I don’t mean she’s selfish or self-absorbed, exactly, but people with autism have a whole system that is very self-oriented, which is why they often function so well alone and may have difficulty in social situations.

Dictionary.com says autism is “a pervasive developmental disorder…characterized by impaired communication, excessive rigidity, and emotional detachment; a tendency to view life in terms of one’s own needs and desires.”

I don’t think of Maddie as selfish necessarily, but I can’t really disagree with any part of that description. She’s not incapable of empathy at all (in fact, she can be remarkably empathetic sometimes), but it’s not necessarily her first response.

Well, hello! In the middle of my writing, Maddie came up with a great idea. She had called and left a message for Jordan. It was an excellent, heart-felt apology about having to cancel today. She said she was tired from a poor night’s sleep (true) and was terribly disappointed about having to cancel, and wanted to get together another time instead.

And then we had talked for a few minutes about friendship. She is concerned because she and Jordan have very different interests. Maddie likes swords and Star Wars and anime. Jordan likes makeup and other girly stuff. (I am reminded of the time years ago when I took her to Toys R Us, and she specifically said, “I do NOT want to look at the girly stuff.” You know, Barbies and everything else located in the explosion of pink.) It can be challenging for an autistic person to see beyond the obvious sometimes and go deeper.

But I told her that it wasn’t until I was in my forties that I realized something important about friendships. It is unlikely that a single friend will meet all your friendship needs. I might have a shopping buddy who loves fashion as much as I do. And then another friend who parents just like I do, so we can talk about that. I have a friend whom I can call to help with the dogs, but maybe my other friend isn’t a good candidate for that. And another friend whom I go to for advice. We all have deeper connections, commonalities that go beyond what we like to do with our time. That’s what ultimately binds us together.

Those are some deep thoughts for an autistic teen. I realize sometimes when I try to impart life lessons to my kids, they may or may not be listening. Or they might hear the words, but the deeper meaning might not land. Not yet. So I say what I want to say anyway, knowing this great wisdom may or may not have any impact right now. It’s worth a try, I figure.

And then Maddie had an epiphany. We have two extra Giants tickets for next Saturday. Why doesn’t she invite Jordan and her mom?

YES. That is the perfect solution. It’s a way to spend time with her friend doing something they can both presumably enjoy. It’s a fun outing, an adventure. It’s a way to connect with another person over something completely outside of yourself. An opportunity to bond without the superficial differences getting in the way. That is how you build a friendship.

So she made the phone call and left a message extending the invitation. Even if it doesn’t work out, something magical happened today.

I still don’t know what will happen next time a social invitation comes Maddie’s way. This is not a linear path we’re on. There are leaps forward and stumbles back. There are surprising moments of greatness and devastating disappointments along the way.

But the net result is this: I’m proud of my daughter. She’s a good person. She’s growing up. I’m working hard. Sometimes my parenting yields instant rewards; most often I just put in whatever effort I can manage, and then hope our kids grow and mature, or that I continue to learn how to let go of the outcome.

*Jordan is not her real name.

Let’s Be Serious for a Minute

Chris Irvine, Parent CoachLeave a comment

My parenting style is loose and fun. I’m sure I could be more of a disciplinarian, but that’s just not my personality. My typical way of thinking is whatever is funny wins. I’m also a big softie. I like to snuggle and play and give back rubs, and as my mom used to do, absolutely smother my kids with love when they’re sick. Well, my own mom’s style wasn’t quite as snuggly, but she always loved us by doing things for us. You’re sick? Chocolate chip ice cream will make you feel better? Well, then, you shall have it. I say that all the time. Well, then, you shall have it!

Ask our two dogs. If there’s an alpha dog, I’m not it. I’m more of a roll-around-on-the-ground-and-play type of person. They sleep on our bed (yes, two people and two dogs fit nicely on a California king, it turns out), and I wouldn’t have it any other way. It would be better if they were more well-trained. I know that. But I need an alpha to step in and make it happen. It’s just not me. Is there a Greek letter for goofball? I wish.

And most of the time, I think my style works. I’m close to my kids. They’re open with me. We like to hang out together. They both tell me they love me all the time. Those words come easily. I hope they continue to come easily for all the other relationships in their lives.

We’re also the house where the boys come to play. My son’s friends are here often, and I love it. The other moms might say, when they hear I’ve got five seventh grade boys over here, “You’re so nice!” But really I enjoy their presence. They’re great kids and I’m happy they like to come here. I hope that never ends.

And then there are days like today. Maddie won’t get out of bed. She was awake for several hours during the night.

I’m sympathetic. I’ve spent the last 15 years of my life in a state of sleep deprivation for one reason or another. It is a rare morning that I wake up to my alarm without having first been woken up by an animal. For years it was the kids. Now it’s the dogs. Sometimes a cat. Sometimes everybody. There were many years when I would have spent at least some of the night in each bed in the house. I would wear a watch to bed because I never knew where I’d end up in the morning, and I wanted to be sure to know what time it was when I woke up. Sometimes I even ended up sleeping horizontally across the bottom of our bed, my legs tucked under me, because I had a husband and a kid and a dog in the bed, and that’s all that was left. Maybe 1/8 of the bed in the bottom corner. I’d pick up the end of the covers and slide in gently, so I wouldn’t wake anybody up. And yes, I could actually sleep that way. Desperate times, you know. So, if anybody has empathy for a tired person, it’s me.

But I also know about having to get up and do it anyway. That’s today’s mantra…AGAIN. Maddie has a hard time with that concept, as you all now know. “I’m too tired. I can’t think,” she says.

“Well, you’ll still get more out of being at school than NOT being at school,” I reply. I even offer to pick her up at lunch time because most of her more rigorous classes happen in the morning today. I’m so nice!

I spend maybe 45 minutes working on her this morning. She’s not budging. Finally, she says, “I’ll just go in later.” That’s really not acceptable to me because I don’t want her to think mornings are that flexible. I insist that she get up now or she will be cutting school and will face consequences both at home and at school.

“Come here,” she wiggles her finger, motioning for me to come closer. I am standing in the doorway to her room, maybe five feet away. I don’t really want to go in there again because there’s really nothing else to discuss. I have said what I have to say. “Come here,” she begs again. I give in.

“I’m confused,” she says. Confused about what, I cannot imagine. “I’m confused,” she starts again. “Usually you’re so nice to me…” I can’t even listen to the rest. I just leave.

So there you have it. Yes, I’m nice. I’m fun. I joke around a lot. But I can be serious when I need to be. And this morning I am serious. I’m also frustrated and a little mad. I’m pretty sure she’s trying to manipulate me. I don’t think of her as being manipulative in general. Or dramatic. But I’m pretty sure she’s trying something underhanded now. She’s pretty clever and she’s incredibly determined. Maybe this will work.

Well, it doesn’t. I don’t even respond to that comment. “I’ve told you the rules,” I say. “I’m done talking about it.”

I remember the last time she wouldn’t go to school. When I spoke with her teacher, Mr. L., he encouraged me to get her to school whenever I could. Some of the day is better than none of the day. So this morning, after recalling that conversation, I agree to take her later. She will miss geometry, the one class of the day I’d prefer she not miss. But something is better than nothing. “I’ll take you for second period,” I offer.

“I don’t know when I’ll be done sleeping,” she replies. Oh hell no. I know what that means. Sleep all day, and Oh look I missed the whole day. Oh well!

“I’ll give you and hour and a half,” I concede. That’ll get here to school for second period. Better than nothing, I think.

She’s in bed. She now has about 45 more minutes until I try again. I have to admit, based on my past experiences, I am not optimistic. My head hurts. Yesterday’s migraine is trying to make a comeback. If I’m on the fence, stress will push me over. And this is stressful. I’m feeling discouraged. I am trying to hold on to our recent successes rather than let today overshadow my optimism. But at the moment, that shadow is pretty dark. Deep breaths. Deep breaths. And maybe some strong drugs for my head.

And here I am, holding my head and pondering my parenting style. You know what? I’m still okay with it. Most of the time it serves our family well. I try, through humor, to keep our family life light and fun in what is often a relatively stressful situation (the whole special needs kid thing). And it works. I’m serious when I need to be, but otherwise, forget it. Let’s do what we have to do, but let’s also have a good time. That balance is eluding me a little today. I’m not sure where that line will fall. But I will try my best. That’s all I can do. So I will pat myself on the back, give myself an A for effort, and see what happens.

A Sword Story Part II

Chris Irvine, Parent CoachLeave a comment

When you have a special needs kid, so many ideals that might have been important seem to fall by the wayside. Getting straight A’s (or whatever) or making the A team give way to things like making a good friend or being accepted. Seriously, that’s what all of us special needs parents dream of. It’s a hard road, sometimes, because we have no control and really very little influence. We try to put our kids in situations where they will have some success, but ultimately other people are involved, and there’s nothing we can really do about that. We try to help, and then we hope for the best.

So last week when Maddie went to school with her well-crafted duct-tape sword, and then came home with requests for two custom ones, I was thrilled. It wasn’t the response I had expected. At all. Wouldn’t you think that in high school, bringing a homemade duct tape sword (or really a sword of any kind) would be the source of open ridicule? Or at the very least a reason for sideways glances and judgmental murmurings?

Well, not only has this not been the case (as far as I can tell), the response has been quite the opposite.

Maddie arrived home from school today while I was out with the dogs. When I arrived home, she was exactly where I expected her to be: flat on her back in her room watching her favorite anime, which, I was delighted to learn recently, has twenty-seven seasons…so far. Every time she announces she has completed a season, I congratulate her on her excellent skills in TV-watching. Thankfully, she’s used to my sarcasm.

The first thing on my mind is always homework, but I try to play it cool and get some information about her day before I dive in to the serious stuff. I’m interested in that, of course, but kind of worried about the homework situation. When I greeted her, I smiled and asked how her school day was.

Her face lit up and she smiled. Big. “Awesome!” she exclaimed. Not just the usual answer of “great,” so I had a feeling something special had happened. She reached over to her nightstand and picked up a piece of paper, then unfolded it and handed it to me. Clearly she was excited about whatever was written down there.

The entire page was filled with writing. And it said:

“Pink and purple. No tail.”

“Blue and red, white tail, no black.”

Six entries in all. They are orders for swords. Six more people want her to make her signature duct-tape swords and bring them to school. I couldn’t believe it.

That truly is the opposite of what I expected. Not only were her swords not met with derision; they are desired. Maddie has something special, and at least some kids (and at least two teachers) recognize and celebrate it.

What my husband and I have always focused on, and desired most for Maddie at school, is the social piece. Sure, we want her to learn and develop herself intellectually. But more than anything we have put our dreams into Maddie having friends and being accepted. We want her to be respected, liked, and admired for the special gifts she has. She’s nerdy in the typical sense, but way cooler than most kids in the most meaningful ways. (Nerds rule, by the way.)

When she was at the private school, ALL the kids were “quirky.” It’s a school for learning differences, after all, so different is expected. For those three years, she was able to break away from the public middle school, especially, and just be herself in a place where there are no mean girls (though still some drama), no cliques, no way to get lost in the shuffle because it’s such a small school. And she emerged from there a young lady with an unusual sense of confidence in herself. We just hoped that confidence wouldn’t be crushed by her return to a more typical high school setting.

So today, the day of the big sword order, my heart is full. I don’t think Maddie sees the larger significance of this event, but she definitely feels something powerful. She feels important, I think. And she should feel important.

So I will happily buy all the duct tape and PVC pipe she needs to fulfill her orders. I envision an entire school of kids walking around with Maddie’s duct-tape swords. I know that’s a fantasy, but I’m going to enjoy that vision while I watch Maddie work diligently to complete her creations. And feeling pretty cool while she does it.

What a Difference a Day Makes

Chris Irvine, Parent CoachLeave a comment

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

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

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

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

She looked at me and smiled.

“Don’t you think so?” I added.

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

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

Yesterday was a good day.

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

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

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

“I’ll be back,” I said.

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

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

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

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

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

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

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

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

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

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

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

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

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

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.