What We Are Given

Lately I have been reading as many blogs as possible about parenting autistic children.  It makes me smile to learn about other kids’ quirky behaviors that often resemble those of my son Fletcher, such as the way he is obsessed with clocks and how he will memorize an entire calendar, including holidays.  One mom wrote that her son will tell her about an event weeks or months after it happened, such as when he had a substitute teacher in December and told her about it in February.  It took him that long to organize his thoughts and speech, but she did not mind because when he was younger, he could not speak to tell her anything at all.  Similarly, Fletcher will tell me about a friend falling on the playground weeks after it happened, and though I feel that I’m always several steps behind in keeping up with his social life, I recognize the miracle in that he eventually is able to coordinate his thoughts and share them with me.

I also find it comforting, while reading these blogs, to know that other parents face dilemmas similar to mine and struggle just as much as I do to find solutions.  It’s not that I want them to live in frustration and self-doubt, but when they do, I feel like I can breathe a little easier.  After all, if other moms are not perfect, it’s okay if I’m not, right?

However, beyond the cute stories about our unique autistic children, and beyond the humility that shines through most of these articles, I often find a theme that frustrates me because I believe it is absolutely the wrong way to look at our situation: I see many parents feeling sorry for themselves and complaining about the stress they face each day.  From their viewpoint, it is just so hard having a child on the spectrum.  It’s hard having a child who screams when someone touches him; it’s hard having a child who cannot tell them in words or actions what he wants to eat for breakfast; it’s hard having a child who cannot recognize the letter A when other kids his age are writing short stories. “We didn’t ask for this life,” these parents seem to be saying, “so why are we being punished with it?”

No, I want to respond, it’s true that you did not ask for this life.  It is our flawed human nature that makes us want the easiest road possible, and when we are not given it, we feel we have been treated unfairly.  Yet if you really want to learn more about the meaning of our existence, and if you really want to become a better person with a deeper understanding about our connection to others, then you will see your role in this child’s life not as a punishment, but as an opportunity.

I’m not saying I have never felt sorry for myself.  When Fletcher was diagnosed with autism five years ago, at the age of 17 months, I went through a whole cycle of emotions, several times, before finding peace, which then led to inexplicable joy as he helped me see my relationships with others in entirely new ways.  I don’t think it is sinful as parents to question why our children must suffer, especially since they are the most innocent among us.  But I do think it’s a mistake to hold on to any feelings of self-pity, or to harbor resentment and anger.  Not only will these feelings destroy you inside; they also will be very obvious to our children, because even those who remain silent can hear what you are saying, and even those who never make eye contact can see what you really feel.

With intensive therapy (ABA, play, speech, occupational, and physical), combined with year-round schooling, Fletcher has made amazing progress.  He is in first grade and can read on grade level.  He enjoys interacting with other people and often hugs his friends and tells them he loves them.  He is willing to try new foods and visit new places without panicking over the change in routine.  We saw his old speech therapist the other day, and she said if we would have told her, back when Fletcher was two, where he would be today developmentally, she would not have believed it.  He is, in short, constantly surprising us with his giant leaps forward, and though doctors would not call him “cured” of autism, I say he is a success story in his own right.

But sometimes, I confess, I grow frustrated.  For instance, Fletcher knows I fix a homemade gluten-free pizza for dinner every Saturday, but that doesn’t stop him from asking me, over and over, on Saturday morning, “Mommy, are you going to fix pizza tonight?”  Last weekend I kept count, and he asked me this question eleven times before noon.  I was about to reach for the earplugs, but then I thought, How does Fletcher feel?  His world is so small, so rigidly contained and obsessively controlled.  He does not experience joy quite as readily as a neurotypical child, in part because he doesn’t “get” jokes and games, and also because he often is so worried about his daily schedule that he cannot relax.  How could I complain about having to answer his questions over and over, when inside, he is the one feeling nervous and overwhelmed, and is reaching out to me to help him feel secure?

Last week I was having a rather difficult day – one of those days where you misplace your keys, forget your umbrella, get stuck in traffic, leave your wallet at the grocery store….  By the time I picked up Fletcher from school, I was barely holding it together.  As soon as he saw me, he rushed over, wrapped his arms around me, and said, “Mommy, you are my sweetheart.”  Just like that, my stress faded, and I buried my face in his hair and thanked him for choosing me.  When a child – especially one with special needs – says something like this to you, and pulls you toward him to hold you close, how can you possibly see your life as anything but a gift, and your child as anything but a link from this existence to the wonders of God?