Wednesday, September 19, 2012

Why Autism?

I tend not to spend a lot of time in my life pondering “why.” I’ve been taught well and I usually know why things happen. But sometimes there are things that come up in my life that cause me to ask – myself, others, Heavenly Father – why? For almost a year after my ex-husband and I separated, I pled with God almost every night, sometimes several times a day, to know why my life was falling apart. Why, after doing everything right, everything was going so wrong. One night the pain was so unbearable, I sobbed and prayed and paced and knelt and buried my head in the couch and sobbed, with constricted chest barely able to breathe, wanting to know why Heavenly Father wasn’t stopping this, the destruction of my dreams, of my future, of my family and the loss of the most important person in the whole world to me. I asked not in anger, but with the knowledge that there was a reason I just couldn’t see and the humility (finally) to listen to the answer. And I did receive an answer, in a way unlike any I’d received before, as I literally conversed with my Father in Heaven, who shared gentle and wise words about agency and the peace of knowing that everything would be okay. Sitting here almost twelve years later, I can affirm that not only is everything okay, but that what I have now (who I have now) is so much better than what I dreamed for myself then that I can barely comprehend why I wanted it in the first place.

From that experience I learned two things: 1) It is okay to ask why and 2) God really does know what is best for us, even when we don’t see it. (The challenge, of course, is remembering the things I’ve learned.)

When Charlie was first diagnosed with an autism spectrum disorder, he was two years old, adorable, sweet, easy to manage – he just couldn’t talk and sometimes seemed a little distant with people. We put him in therapy and I had high hopes that one day he and I would be able to sit down and have a conversation, that I would know my son and understand him, maybe he would even be able to go to a regular school, have a job, go on a mission . . . I know now that those things will never be in this world. Charlie was doing better for a while, although progress was always slow, but lately, he seems to be getting worse. It is increasingly difficult to understand what he wants from us, he seems to always be doing something destructive or messy or harmful, and he, Josh and I are all becoming more frustrated. Life with Charlie is so hard and not just because of all the work it takes, but because of all the guilt I feel for not being there for him more, spending more time with him, reading enough books on autism, visiting his classroom and being more familiar with techniques and therapies, and especially all the guilt I feel for not always wanting to do those things because it is just so overwhelming and I am just so exhausted. I love Charlie so much, but I hate his autism and I just want it to go away. But I know it will be with me until the day I die.

One of the reasons things with Charlie are getting harder all the time is because the gap between his abilities and those of other kids his age keeps getting wider, and I know it will only get worse as the years go by. Some day, he will be a grown man who is trapped in the world of his mind, unable to talk, work, or take care of himself when he should be raising a family, buying a house and a car, complaining about taxes, dropping off my grandkids at my house so he can take his wife on a date. When I go for walks during my breaks at work, I sometimes see groups of disabled adults out on walks in the park with their caregivers. In them, I see Charlie’s future and it breaks my heart.

I had this experience last week and it got me thinking about why. I thought about all the things I am (or at least should be) learning from Charlie having autism. And that Josh is learning. And Alek and Katie and Fitz and Jane and everyone who knows him. I thought about what a blessing it was to have this sweet, radiant, challenging little boy in our lives to teach us compassion and patience. I thought, “He’s here for us. He doesn’t need to be for himself. He’s got it made.” But then I thought how that seems incredibly unfair. Was Charlie just here as a tool for our growth, with no opportunity for his own development and learning? That didn’t sit right with me. While it’s obvious Charlie’s spirit is vastly superior to mine, and there is no doubt in my mind where this kid is heading after his time on Earth is over, he is not perfect. He needed to come here for a physical body, of course, but I just felt there must be more.

And I reflected on how it is not just the people around Charlie who are getting frustrated and exasperated, it’s Charlie too. Maybe in this experience, he is learning patience, with us and with himself and with God. Maybe he is learning compassion too, as he forgives our shortcomings in dealing with him, our lack of understanding and those moments when we just lose it. Maybe autism is not just a refining fire for me, but for him as well. I can only imagine how difficult it must be for such a mighty spirit to keep bumping up against all the roadblocks Charlie deals with every waking moment of every day. I admire him because I can see how difficult it is, and yet, most of the time he is full of joy and because no matter what, he always loves me and forgives me. I witness his patience with me every day.

I feel this is Charlie’s why, that he does have things to learn and that he is learning them. I feel relieved and uplifted by this thought, that while I have so much more to learn from Charlie, perhaps he has a few things to learn from me as well. That one day we will embrace in the kingdom of our Father and when I thank him for all he did for me, he will thank me too.