learning to live and love from a new perspective

Archive for March, 2015

Nothing extraordinary

Editor’s Note: I wrote this post a few months ago…  but it didn’t seem finished, so I put it aside.  Remarkably enough, when I opened the file this afternoon, it felt finished!  Enjoy 🙂

A few weeks ago, I went to G’s school for parent conferences. Just a run-of-the-mill sit down with the teacher to touch base about how G is doing socially and academically. A chance for both parent and teacher to ask questions of one another, and fill in missing information. Nothing extraordinary… just one of those mundane, routine meetings that help keep everything running smoothly.

There was nothing extraordinary about the conference… except the fact that I was there at all.

I sat in a small, first-grader sized chair, facing Ms. L. She smiled across the table at me, as she opened the folder containing G’s work. “G’s doing really well in first grade,” she commented, as she began extracting math assessments and writing samples from the folder. She proceeded to show me evidence of G meeting (or exceeding) the academic benchmarks in reading, writing and math. She described G’s behavior in class. G still struggles with certain things (executive function, emotional regulation, social demands). But in class, he is following instructions, managing his emotions, and interacting with his peers. “He’s a joy to teach,” Ms. L. concluded. “He’s always so happy and engaged. And he’s very well-liked by his peers.”

It was at that moment that I realized how tense I was. I felt a knot in my shoulders (a knot I didn’t even know I was there) begin to release. I dabbed atP1000219 the tears that were beginning to form in my eyes. Ms. L. looked at me questioningly. I said, by way of explanation, “I just never thought G would be here. I never thought this could happen.”

In my mind, I was transported back to another conference, years ago. It was early May, 2011. G had transitioned from Early Intervention into our town’s
integrated preschool on his third birthday several months earlier. David and I were at the preschool for our first parent-teacher conference.

It had been a very emotional year so far.   We had finally acknowledged theP1000476 “red flags” the Early Intervention therapists had pointed out to us. In November, we’d taken G to a specialist and received an autism diagnosis. We’d seen the gap between G’s behavior (the way he interacted with people and objects around him) and a “typical” preschooler grow and grow. We took him out of the community preschool he attended with his sister, and placed him in the integrated preschool where he could get the physical, occupational, and behavioral therapy that were recommended for him.

I knew he was in the right place, and I knew he was getting the best services available. I just didn’t believe it was going to help. G had autism.   All I could see at that time were the challenges. All I could see was a three-year-old who shied away from peers, who required explicit, hand-over-hand instruction, whose language was so delayed that on most days, it felt nearly impossible to communicate with him. As much as I wanted to believe that things would change, that skills would develop, that strategies would be effective…   deep down, I felt hopeless.

But I quickly learned, there was no room for hopeless at the preschool. G’s development was taken incredibly seriously by a team of determined and dedicated professionals. What I lacked in vision, the team made up for in spades. The team collected data on exactly which skills G was lacking. They had a plan for G’s progress. Each step forward, no matter how small, was celebrated. (G did the “beep beep” motions in the Wheels on
the Bus song! G got in line with his classmates when it was time for recess! G looked up when I said his name! He’s doing so well!).

I appreciated the positiveIMG_2817 feedback. I admired the dedication and skill of the teachers. I just didn’t think it was going to help. I was so mired in helplessness, frustration and sadness that I couldn’t envision a life for our family that included joy, wholeness and acceptance.

The days turned into weeks. Slowly, the weeks turned into a month. Then two months. Then three. Slowly but surely, each small accomplishment paved the way into the next. G went from just doing the “beep beep” motions, to participating in the whole song. Then, he started participating in another song. Then another.   G began to become more aware of his surroundings. He began to interact more with teachers and students. He made a friend.

The little flame of hope that had been dwindling inside of me began to stir. After three months at the preschool, we had our spring conference with the teacher. David and I sat in tiny little preschool chairs, across the table from a smiling teacher.

“G’s doing just great,” she said to us, in her beautiful Irish accent. She proceeded to share examples with us of G’s developing fine motor skills and language skills, as well as progress he’d made learning classroom routines and engaging with his classmates. “I love having him as a student. He’s really come out of his shell a great deal.”

Then, David asked the question. The question I desperately wanted an answer to, but was too afraid to even think… let alone ask. “What do you think will happen after preschool? Do you think he’ll ever go to a mainstream kindergarten class?”

She answered without a moment’s hesitation. “Oh, sure he will. He’s making great progress. He’s still got two whole years with us. We’ll get all these foundational skills in place next year… and by the time he’s five, he’ll just be resting on his laurels. It’s a smart boy, you’ve got here.”

It was a dark, dark time. But I remember that conference as a time I began to believe that all the therapy, all the intervention, all the hours spent working through tantrums and meltdowns… that all of it might be making a difference.

I was starting to see growth. I was starting to learn parenting and teaching skills so that I could encourage growth at home. After a year of floundering, I was beginning to feel a path emerging ahead of me. I was beginning to hope.

And that’s why, almost four years later, I was crying at my son’s first grade conference. It was all typical, run-of-the-mill first grade stuff.IMG_0647

The only thing extraordinary about it was the fact that I was there at all. Sitting in a mainstream first-grade classroom. Hearing about all the ordinary and absolutely odds-defying stuff my son was doing.

I am grateful every day for the outstanding teachers, aides, therapists and support staff who have believed in G every step of the way. Even on the days when I couldn’t.

Dear Autism

For all of March, The Mighty (an awesome blog about living with disabilities) is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it?  I’m planning to submit this essay.  What do you think?

Dear Autism,

Thank you.

I know, right? I’m just as surprised as you are. If I had been asked to write this letter a few years ago, it might have started out more along the lines of “f*&ck you”, not “thank you”. Amazing how much your perspective can change in just three and a half years.

IMG_0678 That’s right. It’s been three and a half years since you first officially entered our lives. Three and a half years since my son was first diagnosed “on the spectrum” (pervasive developmental delay- not otherwise specified).

A lot has happened in three and a half years. My son has grown and learned and changed. I’ve grown and learned and changed. The others members of our family (my husband and my daughter) have grown and learned and changed as well.

This morning, I was dropping my kids off at school. We stopped outside my son’s classroom so I could help him change from his boots into his sneakers. We got one shoe on successfully, but just when I thought we were finished, he looked me in the eye and said, “Mom, my shoe is uncomfortable. Can we try again?”

Let me break that down for you. He looked me in the eye. He spoke to me using words. He used those words in a calm voice. There was no yelling. There were no tears. The uncomfortable shoe remained on his foot as he waited patiently for me to respond to his words. It did not get yanked angrily off his foot. It did not get thrown across the hallway. It did not get used as a weapon against me or anybody else.

As the mom of a child on the spectrum, I see my son face challenges every day. His brain is wired differently, so there are many things that come easily to others (making eye contact, using words to express feelings, remaining calm in a stressful situation) that are challenging for him. And you know what, autism? That used to make me really, really mad at you.

I’m not going to lie, I’m still a little mad at you for all the challenges you present to my son. It’s not fun to always be thinking and trouble-shooting about how the little bumps in the road and unexpected schedule changes are going to affect our predictability-obsessed little guy. But I’ve gotten to the point where the joy I feel in witnessing my son overcoming his personal obstacIMG_0781les far outweigh the stress of those moments.

So now I’ve told you about the challenges that are linked to my son’s neurology. But, that’s not all there is to you, is it, autism? That same challenging neurology that makes some situations and tasks so difficult is also at the root of my favorite things about my son. The way he vibrates with bouncy, flappy excitement when he’s engaged in an activity he loves. The way he explodes into giggly, chortling belly laughs when he finds something funny, even when it’s something he’s seen or heard a million times. The way he gives hugs that are so powerful he almost melts into me. The way he says, “I love you, mommy” with such complete devotion it leaves not one inch of doubt.

And so, autism, I can safely say that while I don’t enjoy the ways you make my child struggle, I can appreciate the satisfaction and pride that comes with seeing him overcome obstacles. I can appreciate the joy that comes from small accomplishments that I might have overlooked if they hadn’t been so hard-won. I’m grateful for the opportunity to love someone who engages in the world in such an intense and uninhibited way.

And, I’m grateful for the way you’ve helped me grow and learn and change over the past three and a half years. As I’ve done what I’ve needed to do to help my son be successful on his unique path, I’ve become more open, more flexible, and more patient. I’ve learned to accept and even embrace things I know I can’t change. And, I’ve learned to passionately advocate for things I can change. I’m proud of the person I’m becoming, just as I’m proud of the person my son is becoming.

And a lot of that growth is because of you, autism.

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