Monday, March 29, 2010

An Eye for an Eye

When I’m angry, I lose my voice; no, not in the sense that I go quiet, but I become completely inarticulate. In person, face-to-face, I stammer, stutter, turn the color of Kool-Aid. You can’t see that when I blog. Instead, I go AWOL.

I’ve spent several days trying to write in all kinds of different ways about the cruelty we’ve witnessed recently in the blogosphere. Really there are no words I can say, except perhaps to quote my son: "Aaaaaahhhhhhhh!" Yet I cannot sit silently by either. So the only thing I can think to do is to take a different voice that I hope comes across at least a little better than my own. In the spirit of point-of-view writing, like I used to do with my writing students, I am going to express my feelings through a grandmother in my imagination. I do not know the real grandmother nor do I know anything about her, and I can only hope she wouldn’t mind too much me using my imagination to express my feelings here about the horrible treatment she received at the hands of an ignorant blogger. Okay, me shutting up now, so that I can speak…

You can call me Grandma.

During a recent afternoon babysitting my granddaughter, I was reminded again how hard it is for my son and his wife to face bigotry, discrimination, and judgment every day. Although it was a very difficult day, and an emotional one for me, I remain grateful for what I learned, and even more grateful for all my precious children and grandchildren.

My granddaughter had to have yet another painful blood draw on the day I’m describing, and since both my son and daughter-in-law long ago used up their sick and vacation days and fear for their jobs if they continue to miss work, I volunteered to help out. Blood draws are never easy. I promised my granddaughter that after the lab work, she could choose something fun to do. Sweet girl that she is, she wanted email her brother, my grandson, now serving in the military, but her computer has some kind of virus. Could we go to the library to use computers, she asked? Well, I don’t know an email from Morse Code, and libraries can be tricky for our sweet girl, but grandma did say she could do whatever she chose, so that is how we found ourselves waiting to use public computers already in use, and how we came to be the objects of scorn and ridicule.

When my granddaughter and I got to the computers, some children were already playing video games. My granddaughter’s autism has a negative impact on her impulse control, and while 15 hours a week of ABA therapy for the last 18 months has given her a number of useful tools to deal with the stress of waiting her turn, it is still a struggle for her. I smile even now to picture how she tried her best to remember the coping mechanisms she’d learned while clearly feeling impatient and exhausted from her morning visit to the Children’s Hospital.

I could tell that the mother of the girls on the computer felt uncomfortable in the face of my granddaughter’s developmental challenges. Not that her challenges are anything to be ashamed of, but knowing that others feel uncomfortable around us makes it hard for me to make eye contact sometimes myself. I knew that to others, we looked awkward and loud and off-putting, but at the same time, my sweet grandchild had practiced and practiced and practiced being patient so much, I knew that she was doing her best to waiting to use the computer. She was perseverating on her own struggle with patience, repeating to the point of exhaustion, “I’m being very patient, grandma!” I know that helps her maintain her calm, pass the time, deal with the stimulation that is dysregulated through her nervous system, so I tried to support her as best I could by saying, “Yes, my love, you are being patient.”

I don’t know exactly how long the other girls had been playing video games when we arrived, but I admit my heart sank when I saw them there. Of course, they have every right to use the computers as much as anyone, but this is the thing: Everything is so hard for special needs children like my granddaughter, and sometimes you just wish something would go smoothly and easily. Sometimes you just wish for a break, a simple day. Sometimes after getting through the medical challenges our girl has and helping her navigate through the choppy seas of her day, you see healthy, typically developing young people who always have blue skies and calm waters, and you feel bone weary, a tad bit jealous, and a little frustrated. I put those other girls out of my mind – I had to – a focused on being the most supportive grandma I can be. I kept reassuring my girl that, yes, she was being very patient, and soon, it would be her turn, because experience has taught me that I could best help her that way.

Finally my granddaughter’s loose grip on control escaped her, and she approached one of the girls playing video games. “It’s my turn, it’s my turn!”

For a brief moment I imagined that perhaps I could hope for some compassion from the children, or perhaps their mother, who was, after all, reading the Bible. But do you ever get the feeling that some people choose their books just so that the title will be impressive to those around them? I hate to be judgmental, but I can’t say that The 90 Day Bible Speed Read or whatever it was really impressed me in the way that the woman seemed to hope it might, as she clearly pretended to read it to avoid dealing with the situation at the computers.

Again, I am a little ashamed of myself to make such a judgmental declaration, but moms who find a computer where they can plug their kids in to avoid having to teach or parent them themselves make we want to take a ball point pen and jab myself in the eye. Anyway, since I got no help from the mother and no compassion from her daughter, I simply did the best I could with what stamina I had left. Suffice it to say we managed, and my granddaughter eventually sent a beautiful, loving, supportive email t her brother in Iraq.

You’d think this would be the end of the story, except that today my daughter-in-law brought me this awful thing that had been written about us; the mother from the library said the most horrible, wrong things about my granddaughter and me.

For a moment, I wanted to hate that woman. No, to be honest, for a moment I did. I hated her. But then I remembered something important. I remembered that I once was the parent of three healthy, typical children, and I didn’t know about autism either. I didn’t know about neurologist appointments, IEPs, co-morbid conditions. I didn’t know about patience, and I didn’t know about my granddaughter. I was ignorant once, too. I had to learn too. And I didn’t want anyone to hate me for all that.

I tried to picture this bloggerwoman as someone’s daughter, someone’s granddaughter. When I do that, I can’t hate a person. I just can’t hate someone I can imagine playing in a sandbox.

So after I read what she wrote, I decided to just try to do for that blogger what I tried to do for my granddaughter at the library that day when she was struggling so hard to be patient: I tried to love her. Love isn’t easy. Autism isn’t easy. Patience isn’t easy. Life isn’t easy. But hatred is ugly. Hatred is what that woman wrote on her computer about my family. And hatred is unacceptable. I don’t want to be a part of hatred.

Besides, my mama used to say, “Kill ‘em with kindness.” So, mother from the library? Wherever you are? I want to tell you something. No matter how wrong, mean, and selfish you are, no matter what you write, my granddaughter and I forgive you. We hope you learn your lesson someday about autism, we hope eventually you and your insensitive friends learn how much people with special needs have to offer the world, but even if you are a very slow learner as you appear to be, we forgive you, because we’re patient like that. And, finally, thank you. Thank you for reminding me what amazing children I have raised, what a lucky mother-in-law I am, and how much I treasure all of my grandchildren.

3 comments:

Kim said...

This brought me to tears. I too am struggling with how I want to respond to the uproar, or even if I want to respond at all. I like the voice you've chosen. You are right, we are patient. Probably some of the most patient parents around. Thanks for sharing this.

asdmommy said...

BRAVO!

And that's all I have to say about that. :-)

5 Kids With Disabilities said...

I can sooooo empathize with you. (Loved the observation that she was reading the Bible!) It is so frustrating when people who are unaware of the situation make comments and don't understand. They should walk a mile in our shoes, but I wouldn't wish that on anyone. I've developed a thick skin...I have to be confident I know I am doing the best I can even though it might not be obvious to others!!
Lindsey Petersen