Moving Forward, Looking Back: In Which We Come to Terms With Asperger Syndrome

Peregrine and I at Proxy Falls, 2004.

    As we walked the shady path to Proxy Falls the other day, my mind wandered back eight years ago to another day in that same place. Our only child scampered eagerly along, now running forward, now lingering to examine a hollow stump or clamber over a fallen log. Little Peregrine was only a year and a half, exceptionally verbal and promisingly bright. We noticed something that day, nothing extraordinary on its own, but for some reason I've never forgotten it. And knowing him as I do now, I can see a lot of his who he is in this event. 

    It was late spring and the forest was cool and damp. The path was cushioned with pine needles and there was a quiet stillness broken occasionally by the squawk of a bird or a cry of delight from our little boy. As we climbed the path we began to hear the low sound of the falls in the distance and Peregrine began to stay close by. Long before we reached the falls he clung to us, instinctively knowing there was something there and wanting the security of his mama's or daddy's arms. We, of course, were happy to oblige, and we held him close as long as he wanted us to.

    We saw a glimpse that day of the intensity that is Peregrine. I've often said that on a scale of one to ten, all of his feelings are between eight and twelve. Because he was our first child I feel it's taken me a lot longer to notice that many of his traits aren't typical. After many years of frustration and wondering what we were doing "wrong", we have finally come to realize that Peregrine has Asperger Syndrome. I kept thinking that if we continued to provide firm, loving boundaries that he would outgrow some of his more challenging behaviors. What I took for "strong willed" or stubborn I now know is part of his inflexible thinking and difficulty in making transitions. (In this case, making the transition from his expectations to the reality of a situation. This often puts him into pretty serious meltdown.) There are many other traits Peregrine has that are very typical of people with Asperger's.

 

    Although we'd considered the possibility, it's really only been in the last several months that we've accepted it as a reality. It explains so many things about Peregrine, about what makes him tick, and about how his mind works. (And it's really different than the way mine does!) I went through a difficult time of wrestling with this and even through a process of grief. It still feels hard to say. "Peregrine has Asperger Syndrome." I've thought often of writing about it, and I feel that for my own sake it's important that I record a little of our experience. My goal is to think of it not as a "disorder" but to use it as a tool for understanding him and helping him live to his fullest potential. I will not allow a "label", something that for years I was determined to avoid, to define who my son is. I make a point of thanking God for making him just the way he is, and I am trying to embrace the wonderful parts of Peregrine's personality while helping him to grow in other areas. 

    As we once again made the trek through the woods to Proxy Falls, the memory of that long ago day filled my mind. I sat on a log,  holding little Pearl and watching Raphael and Poppy play, while Erik and Peregrine hiked down to the base of the waterfall. Peregrine, still intense, but on this particular day, fearless, climbed across fallen logs and explored the creek. I wonder what the future holds for him, what challenges, but also what opportunities he will face due to his unique mind. I hold to God's promise to give us a hope and a future, and to His unfailing love for each of us. I trust that His plan is good, that His grace is sufficient, and that He holds us all in the palm of His hand. 

    I hope to share more about some of the challenges our family faces as part of Peregrine's Asperger's. I have been hesitant to write some of this for a couple of reasons. First, I am determined that my little space in the blogosphere be one of encouragement, not a complaining fest.  On the other hand, I'm committed to honesty, and have been encouraged to share my struggles. Second, I want to be very careful not to share things that would be embarrassing to my husband and children. I have come to realize though, that if one of them had cancer or some other sickness, I would have no problem writing about it. This is part of who Peregrine is, not by his choosing, and I don't want it to be something that remains hidden. Third, in speaking with a number of other moms I know, I've realized that many others have similar situations and there is a hesitancy to talk about it. I have some thoughts on why, and I don't think it's healthy. We need each other. Fourth, this plays a huge part in our family dynamic and in why we are making the choices we are. If I am to share honestly about our family life, it must include how this affects us all.