Teen Autism

As we moms so often do, I’ll be taking my kids to see a movie that I could easily wait until it’s on DVD to see. But they really want to see it, and so it’s my treat to them. In five minutes we’ll be going to see X-Men Origins: Wolverine, and I’ll try to suffer through the shirtless Hugh Jackman scenes. Take one for the team, you know? So unfortunately I don’t have time to write the Mother’s Day post I’d hoped to write, the one about how much all the moms I know inspire me, how glad I am to know them, and how much they mean to me. All of them – from my mom, to my boss, to my co-workers, to my friends, to my readers, and to my sister, who’s been a mom for a month. Thanks for being there, for showing me the way, for encouraging me, and for just being your wonderful selves. I hope you’ll accept this re-posting of the Mother’s Day post I wrote last year, because I’m on my way out the door to spend some quality time with Hugh Jackman my boys. Happy Mother’s Day to all of you!

Fourteen years ago I celebrated my first Mother’s Day as a mother-to-be. My then-husband gave me a card saying what a wonderful mom he knew I’d be, and my own mom gave me a card with the same sentiment. I think back to the person I was then, not having any idea of the depth of emotion I would experience because of the little person in my belly and the one who would come after him.

Being a mother, autism or no autism, has taught me more about life than anything else I’ve experienced. Just the knowledge that it’s my job, my responsibility, to give these guys all the tools they need to lead a successful, happy life is enough to blow my mind. There are plenty of articles and books out there about how to raise good kids, how to be a better parent, but nothing can really prepare you. You have to jump in with both feet and just trust that you’ll be okay. That you’re going to make a few mistakes, and you’ll run into a few rough spots, but you’ll handle them. You’ll get through it and keep going.

As we moms know, being a mother isn’t always easy but it’s always worth it. We live for the days when we take our kids somewhere that they thought would be boring, and then not only can we tell that they really like it (as we knew they would), but they come up to us and hug us and say, “I really like this place, Mom. Thanks for taking me.” (That was Aidan at a museum last weekend.) And we live for the days when our children receive special awards or when, for the first time, they apologize for their behavior on their own instead of us having to do it (that was Nigel recently). We savor the triumphs, be they large or small, and think We’re getting there. I must be doing something right.

And the day will come when they are on their own. Even those of us with differently-abled kids will go through this change, on some level. I often wonder how I will feel when that time comes. How hard will it be to let go? It’s hard enough for me to let them ride their bikes to the grocery store! But I take comfort in the idea that it will happen little by little, just like how Nigel learned to talk, how he’s learning to be responsible for himself. I also take comfort in knowing that I will always be their mom. Nothing will change that.

So, here’s to all the good moms, like my own (love you, Mom!), and my friends who keep me sane. We need all the support we can get, in all the mothering stages of our lives.

I did my first-ever guest post today! Please join me over at A Room of Mama’s Own while Mary is on blog vacation. There’s even a cool photo that I took of a Hungarian castle!

I’ve never been called a social butterfly. Not even close. I am a happy introvert. My Facebook “About Me” section says:  I have two sons, one autistic, one not. Both are more social than I am. So I started blogging.

But long before I started blogging, I noticed something happening that I wasn’t too comfortable with. Nigel’s diagnosis threw me into frequent meetings with various therapists, teachers, doctors, and other people. Then Aidan’s special needs became apparent, and I had to deal with even more therapists, more people. As my sons learned to talk, I noticed that they were not introverts. One got interested in Scouting (actually both did, at first), and the other one went to a lot of friends’ houses. I met the friends’ parents. I met the Scouting parents. Some of them even became my friends.  As the years went by, I met more teachers and therapists and other parents. The fact is that both of my kids, especially my autistic one, have gotten me out of my comfort zone. And I discovered wonderful people – and a side of myself – that I might never have known.

Even so, when I have to go to a meeting or call someone I don’t know, I still step outside my comfort zone on a weekly basis. But people with autism, whether introverted or extroverted, have to get outside of their comfort zones every day. Nigel, with his fear of bees and other flying insects, gets outside of his comfort zone every time he steps outside. He gets outside of his comfort zone every time he enters a public restroom and wonders if there’s an air hand dryer on the wall, and if someone will use it while he’s in there. He is outside of his comfort zone whenever a baby begins to cry or an alarm goes off or a light is too bright. How many times a day does he step outside of his comfort zone?

I attended a dinner party tonight, and I only knew one person there, someone I hadn’t seen for almost four years. I was definitely outside of my comfort zone. It’s not that I’m shy, it’s just that it takes a lot of energy for me to pull that off, to push myself to be social. But I’ve been doing a lot more of that in recent years, and you know what? I laughed and broke bread with these lovely people, and I talked about autism and homeschooling and my job and places I’ve traveled, and I really enjoyed myself. In fact, at some point during the evening it dawned on me that I couldn’t be out of my comfort zone because, well, I was comfortable. I really was.

It’s hard to get out of our comfort zones, whether we’re autistic or just introverted (or in some cases, both). But I think if we do it enough times, our comfort zones evolve. Nigel is now comfortable in grocery stores and restaurants, places that used to cause him such agony. He likes these places and asks to go to them. The last time we went to a movie theater, he didn’t even need to use ear plugs. Some comfort zones may always be difficult to step out of, regardless of how much we try. But others, with time and patient attempts, can change. It’s good to stretch ourselves, whether we’re conscious of it or not. We stretch a little bit, and our spirits are encouraged to keep going, keep stretching. The rewards are too great to miss out on.

I am thirty-eight today. And rather than discussing anything else with that number (revolver cartridges or bands), I’ll write about something more important to me.

When I turned twenty-two, I was in college, scrambling to finish in one more year, working full time and taking eighteen credits a term. It was nuts. I don’t know how I stayed on top of it. I realize now, of course, the if-I-knew-then-what-I-know-now, that it was nothing like the issues that came with having special needs kids, the single parenting, the working, the just-trying-to-get-through-the-day. But I certainly wouldn’t say that working my way through college was a cakewalk compared to parenting. At the time, it was a lot. It would be a lot at any age. And I’m sure glad it’s behind me.

So on my twenty-second birthday, I got up early, went to class, came home, worked on a paper, then went to my job as a clerk at a large chain drugstore. I walked into the back to clock in, and my boss called me into her office. “I see it’s your birthday today,” she said. “How old are you?” When I told her, she waved me off and said, “Aw, you’re a baby!” I walked out of there thinking, Hmm. How old do you have to be to get some respect? 25? 30? 40? I thought at that stage of the game, working my way through college, I’d earned at least a little of it.  

And now, sixteen years and a degree, a divorce, two kids, and a house later, I think I know what she meant. I feel like calling up that old boss, or walking into her office, and saying, “I’m 38 today. Am I there yet?” I’d like to think so. Because I finally realized that she was right. I didn’t get it at the time. I didn’t understand that it isn’t how busy we are or how old we are that earns us respect. It’s who we are. “Thirty-eight” might precede “Special” if you’re a band or a gun, but me? I’m singing with Aretha. She had it right all along.

I’ve been seeing this meme going around the blogosphere for a bit, and every time I see it I think about what I might list as my quirks. And now I’ve been tagged with it (by Bonnie at Autism Family Adventures), so I’ve got to censor narrow down my quirks to six. Herewith, I admit to the following as unsheepishly as possible:

1. I am obsessed with peeling sunburns. You take your life in your hands if you walk past me and I happen to notice skin flaking off your shoulders. My sons run from me. And I don’t just peel skin off of other people; I enjoy peeling my own sunburns even more. But since I do wear sunscreen daily, my opportunities for self-peeling are limited.
2. I love the different textures of my hair. I love when I run my fingers through it and discover one that’s coarse and wiry hidden among the rest of the straight hair. I love how it feels on my fingers.
3. Everyone has their own scent (and not the sprayed-on kind). When I am in close proximity to people I know well, I discreetly inhale their scent. With my kids I am more direct; I walk right up behind them and smell the tops of their heads. (If this is starting to sound like I’m a little “atypical,” I would wholeheartedly agree with that assessment.)
4. I am freakishly good at word searches. I can find them diagonally/backwards and any other way. If a word is in a word search, I will find it, and usually quickly. When Aidan brings one home from school, I have to restrain myself not to do it for him.
5. I only sleep on my left side, although this is more of a forced quirk, since it’s because of a snowboarding injury to my right shoulder a couple of years ago. No more jumps for me!
6. I have not worn a watch in twenty years. Instead, every day for twenty years I have worn a silver bracelet that my grandmother gave to me. If that bracelet could talk, this list of quirks would have no end.

And now it’s time to pass the fun. The rules of this meme are as follows:

1. Link the person who tagged you.
2. Mention the rules on your blog.
3. Tell about 6 unspectacular quirks you possess.
4. Tag 6 following bloggers by linking them.
5. Leave a comment on each of the tagged blogger’s blogs letting them know they’ve been tagged.

But here’s the thing: when you play tag, you only have to tag one person. So I am going to bend the rules and only tag one other blogger whose quirks I’m dying to know . . . Osh at The House That Osh Built! Thanks for indulging me (and my quirks)!

Today I couldn’t wait to get home from work and hug my kids. I do that every day, of course, but today I was reminded of the unfortunate truth that all humanity shares: we never know how much time we have.

The son-in-law of one of my friends had a massive stroke and died today. He was thirty-three years old. Thirty-three! He leaves behind his wife (my friend’s daughter), their five-year-old daughter, three-year-old son, and unborn third child. I can’t even imagine their grief. All I can do is remember, as I do when I hear about a sudden death or drive by the scene of a horrible accident, that our time with those we love could end at any moment. Morbid, yes, but also motivating. It’s the kind of thing that makes you want to hold your kids (if they’ll let you), call up your parents and siblings, and tell everyone who matters in your life how much you appreciate them.

I think of all the bad days I’ve had in the past year alone, the frustrated helplessness of dealing with meltdowns, school districts, doctor appointments, insurance, finances, and everything else about life that’s stressful, everything that makes me loathe my day. But then I remember: I’m here. I’m alive, I’m usually well, and so are those to whom I’m closest. I can come home from work and hug my kids. I don’t ever want to take that for granted.

The time that we have is the only time that we have. It may be filled with some unpleasant or challenging aspects, but it’s also filled with the company of those we love. And that makes every day worthwhile.

We learn much from our formative elementary school years, probably more than we realize. I have written previously about how it was in elementary school that I learned about disabilities, and the negative way that some children react to them. But there’s something else that elementary school taught me about living with disabilities, something that I only recently comprehended.

At recess and during P.E. we often played kickball, among other things. It was baseball without the bats and gloves. Not having much athletic ability beyond being a reasonably fast runner, I was among the last few chosen for teams when everyone was required to play. I couldn’t kick very far. It really didn’t bother me, since I had no desire to play. But what I remember most was when one of the heralded elementary school jocks – the future varsity team members – came up to “bat,” every one of the fielders started to back up, giving him a wide berth. These eight-year-old, would-be high school stars could kick far. The fielders called out to each other, “Go deep,” in a respectful, cautionary tone. That would be the only way they could hope to catch his fly ball. I learned early on that in some circumstances, to handle the difficulties that life throws your way, you have to pull out all the stops.

Life with autism is like that.  If we hope to deal with the lifelong challenges of autism, we have to “go deep.” We have to tap our reserves, focus, and be prepared. We learn to anticipate, listen to our intuition, and be aware. But we also have to go deep within ourselves to summon our strength and find our courage. I may not have been able to kick the ball very far, but I learned how to catch it when it was coming my way. Sometimes, you have to back up to catch a fly.

Last week a friend of mine found a lost dog, a little Yorkie, running around in a street in our town, and she picked him up so he wouldn’t get hit. There was no owner information on his tag, so she called the animal shelter, but no one had reported him yet.  She then proceeded to go door-to-door in that neighborhood trying to find the owner and finally did. The Yorkie, Sam, belonged to two older ladies, sisters living together. They were ecstatic to have him back and invited my friend in for tea.

The younger-looking sister was tall and thin and began telling my friend all sorts of wonderful stories about Sam, going off on tangents about their family members, places they’d traveled, and other dogs they’d owned. The older-looking sister, who was shorter and appeared to have osteoporosis, would periodically roll her eyes and say with urgency, “Focus, Martha, focus!”

I laughed as my friend told the story, envisioning the exchange. It reminded me of all the times, especially in the past few months of homeschooling, when I had to redirect Nigel by telling him to focus on what we were doing. I often have to remind myself to focus with all the different projects and distractions I have going on. Focusing is how we achieve our goals in the face of daily life. It’s also how to keep things short and sweet when a stranger returns a lost pet. “Focus, Martha, focus!” I had to write that on a Post-it note and stick it on my monitor. It’s the best advice I’ve heard all week.

“Doubt everything. Find your own light.” –Buddha

This is pretty much the flip-side of yesterday’s post. I just found it today and I thought, Yes! Buddha’s all right! This quote is my new credo.

After all, isn’t that what we parents of autistic children do? Every day? We find our own light. We forge our own path.  We don’t take anything for granted.

And that “doubt everything” part. That’s just the ancient version of “question authority.” Good to know that Buddha sanctioned it a couple of millennia ago. Maybe there is something to this Enlightenment idea.

“To live here and now you must train yourself: In the seen there will be just the seen, in the heard just the heard, in the sensed just the sensed, in the thought just the thought. That is the end of sorrow.” –Buddha

As an adolescent I became attracted to Buddhism, but it was nothing that I pursued. Enlightenment sounded peaceful, desirable, but I had other things to do. I thought that someday, if I ever wanted to be affiliated with an organized religion again, it would be Buddhism.

Recently I came across the above quote and have pondered it for several days. “The end of sorrow”? The only way to not experience sorrow is to not be attached to anyone. I can isolate what I see, hear, sense, and think. But no matter how enlightened I am, I will certainly feel sorrow when a loved one dies. I will certainly feel sorrow when a loved one is in pain. I will certainly feel sorrow when my children are 700 miles away for seven weeks.

And so I thought, Buddha must not have had children if he devised this method to not experience sorrow. And when I did some research, I discovered that he did indeed have a wife and a son, whom he left at birth when he went off to do his Enlightenment search. And he was gone for seven years. As a sole parent ten months out of the year, this made me not think too highly of Buddha. All my life I had erroneously thought that Buddha had been some solitary prophet, wandering around learning and teaching. Granted, his wife and son lived in a palace, but the fact remains that he abandoned them for his search for Enlightenment. Okay, it was for the greater good, but I still don’t like it. Seven years is a long time.

But enough of the Buddha-bashing. I’m still attracted to the peaceful, meditative ways of Buddhism. And, if I think about it, I can even rationalize and accept the fact that Buddha left his family to gain some clarity. I feel that way now, with my children away for seven weeks. I climbed a mountain. I’m writing more, talking less. Meditating, reading. But I miss my boys. Enlightened or not, for me the “end of sorrow” will be when they come home.