The Year of Living Hopefully

I have gotten such a wonderful response about my blog. I started writing this really for myself, not with an audience in mind. But now that my wonderful friends, people in my community and even some people I’ve never met are reading this, I have discovered its purpose. Or, rather, purposes: It’s a way for me to express myself, and it’s, hopefully, a platform for illuminating those who don’t have experience with Asperger’s, as well as a way to connect with those who do. I hope I’m speaking for some of them as well.

One response I’ve often gotten over the years, when talking about my experiences with my special needs kid, is admiration. This blog is eliciting some of the same responses.

“You have so much patience.”

“I could never handle that.”

Or my personal favorite, “You were given this child for a reason.”

The message is that somehow I am uniquely qualified to have been given this challenge. I know these are all intended as compliments, and I appreciate that.  But I also think this message implies that somehow I have special gifts that allow me to parent in an unusually patient and creative way. It implies that somehow parenting Maddie is easier for me than it would be for somebody else because I’m a better person, naturally equipped with the skills necessary for navigating this different journey. Well, I’m not special. I’ve just learned a lot along the way. I have also enlisted the help of countless professionals. And it has been difficult, sometimes very painful. On many occasions I have felt like quitting my job as a mom because it’s just too hard. But I just keep trying. That is all.

Am I unusually patient? Sometimes. But I think I’ve learned to be because Maddie is my daughter. If I had two Henrys (that’s my 13-year-old son), I’m not so sure I would have developed this side of myself.

Here’s a typical scenario: My husband and my son and I are ready to go. We’ve been waiting for Maddie. The guys go up the car, and I wait for Maddie. After a fair amount of yelling down the stairs (“Maddie we are leaving in 2 minutes!” “One more minute!” “We are heading out the door!” “Really, we are leaving RIGHT NOW!”), Maddie emerges from her room. She comes upstairs. Then she says, “Wait! I forgot my glove and my hat!” Maddie’s “signature style” of late has involved two things: a cap and a fingerless glove on her right hand. She has a nice selection now, thanks in large part to my mom. I sigh. It’s what happens every time. There’s always one more thing. For some years I would have said, angrily, “No. We are leaving NOW!” And she would have insisted and I would have said no, and a small thing would have become big. So now I just say, “Ok. Make it snappy.” She gets her stuff, I wait, and all is well. She really needs that hat and glove, and I respect that. It would be nice if she could think of it all and be on time, but she can’t. And it’s mostly OK. Don’t get me wrong, I can feel a little agitated inside because, well, it’s my nature to just get going. But that’s where I’ve really grown. I’ve learned to at least keep that agitation to myself sometimes to make Maddie happy and let her be her. And to maintain peace because what’s the alternative? The alternative is to be constantly angry and frustrated, and to have that be the primary way I relate to my daughter. I don’t want that for any of us.

This morning I wasn’t so calm. Actually I was calm until about five minutes before pickup time, when I discovered Maddie sitting on her bed, staring straight ahead, dressed but without her shoes and socks on. I was trying to get her out the door a couple minutes early so that cab driver didn’t have to knock on our door. One of our dogs is a barker, and she gets especially unhinged when unfamiliar men show up. I just didn’t want to deal with that, so I grabbed Maddie’s socks and shoved them onto her feet, followed by her shoes, and lightning-fast double knots. I was frustrated for sure, and it showed. On mornings like this one, the frustration comes from a buildup of thousands of preceding mornings just like today. I feel like that most mornings but try my best to hold it in. I fail a lot. But I never give up. I keep hoping Maddie will start figuring this all out, that one good morning will turn into a good week, and eventually a bunch of good weeks will string together. Maybe we’ll have a new normal.

For those of you who think you couldn’t parent an Asperger’s kid, you’re wrong. You can, and you would, because you have to. We rise to the occasion. We screw up a lot in the beginning, and then learn some stuff, and then screw up, and then we learn some more. We enlist the help of psychologists, psychiatrists, occupational therapists, teachers and whomever else might know something we don’t. We talk to other parents. We might even listen to our other kids, who have their own unique perspectives.

I’m sure you think of an example in your life when you did something extraordinary, something beyond your expectation of yourself, especially if you’re a parent.

When I was a sophomore in high school, I was a dedicated, successful student, but PE was the bane of my school experience. I hated it. I was tiny; my knees were probably the most prominent part of my physique. I was also quiet and shy. And a klutz. I wasn’t even fast. My tiny body felt as though I had rocks in my shoes when I ran. From her to there didn’t look far, but it seemed to take me an awful long time to get where I was running to. So when the annual mile run came about, I felt defeated before I even began. Here was my big chance to suck at something at school, but this time I just wasn’t having it. I don’t remember why I picked the particular goal, but I wanted to finish that mile in under eight minutes so badly. I was determined. It was a much faster time than I had ever run a mile, and I had in no way trained for it. But I had that number in my head. So I ran with those leaden feat as hard as I could, and when I crossed the finish line the stopwatch read 7:45. I was faint with exhaustion but incredibly proud of myself. It was if I’d lifted a car up with my ow strength, bolstered with pure adrenaline. I wanted to do it, so I did. In my mind I had done the impossible.

I think about that moment sometimes, mostly because of the aftermath. I was so exhausted that I nearly fainted after completing my heroic athletic feat. It took everything I had.

So does parenting an Asperger’s kid. But I can do it. If you’d have told me when I was pregnant that my child was going to have special needs, I would have been terrified. I probably would have questioned my ability. Fortunately I got to know Maddie long before her diagnosis, and I’ve discovered the reality, though scary at times, is that it IS possible. You just have to keep trying.

And in all this trying, I have learned and grown and changed. You, too, would try, and you would learn and grow and change. You might be angry sometimes, and frustrated a lot of times, but grateful sometimes too. And you would love your child with such ferocity because you understand the extraordinary effort it has taken her to learn what to other kids comes naturally.

You would probably be at least as wonderful as you think I am.

My hope, today, is that you can appreciate parents of Asperger’s kids because of the work we all do to understand and advocate for our kids, and recognize the potential you all have to be great under the same circumstances. We DO rise to the challenge. We just do.