Tag Archives: mom

awareness isn’t expertise, and needn’t be

autism societyIt’s Autism Awareness month. I’ve been planning to write about autism. The month is half over. I’ve written twice: once to say “I’m writing” and once to say “Here’s what I think I know.” The comments on those posts have taught more than the posts.

I have a list of related posts, germs of ideas, things I want to find out. But, it seems, other projects and responsibilities intrude. I can’t do the research that I would like to do be offer answers here, to have great insights.

I wanted, for example, to find out what it is like when autism is part of a family. What’s it like to be a mom, for example?

Katie Donahue Bevins answers those questions, writing as a poet.

I dragged Sean into the house, his voice screeching, saying over and over,

“I want a new Mommy!”

All I could think was, “Good luck with that. You’re stuck with the one you’ve got.”

From brothers.

Chantal Sicile-Kira answers those questions as an “author, speaker, autism expert:”

When he was little, it was very hard figuring out how to reach him, how to teach him basic skills. Nothing seemed to work for Jeremy as it did for other children with autism. I had to quit my work (in TV and film production) in order to teach him and to do physical therapy exercises with him every day.

To this day, although he has proven how smart he is, his motor skills and sensory processing challenges are such that he requires supports for many aspects of every day life. We are working on helping him become as independent as possible, by trying different therapies to work on motor skills and sensory processing.

from “Autism mom shares her knowledge”

Tammy Lesick, answers these questions by getting autism posts from people like Katie and Chantal on her site, “autismlearningfelt.com

I wanted to offer insight, that is, until I realized that awareness isn’t about being an expert, about having the most profound insights. Sometimes being aware is about stopping long enough to notice.

These moms are worth noticing.


The challenge of Mother’s Day

Some holidays are easy, easy to celebrate, easy to ignore. Others are challenging to talk about, challenging to celebrate. At least for me.

I have in me an expectation-sensor. I’m not sure that’s it’s technical name. In fact, it may not have a name. I just thought of it. But I can describe it.

I have something in me that detects what people might need or want and then prompts me to want to help. It’s inconsistent. Sometimes it is oversensitive, tuned more to doing than to being. Sometimes it misses things, mostly because it is more responsive than predictive. As a result, it knows that today is Mother’s Day and that I need to do something special for my mom. However, earlier in the week, when I could have sent a card, I didn’t because I was aware of other things in the moment.

I get this expectation-sensor from my mom.

Mom is having an incredibly difficult time this weekend. She had eye surgery on Thursday. It was very successful. She has had eye pressure in the 20s and 30s. That’s bad. That can lead to loss of vision, and that has happened some. But after the surgery, the pressure dropped to 5.

So the difficulty is not because of the results of the surgery. The difficult time for this weekend is that she can’t bend over. For the next several weeks, she needs to not lean forward. And this need to think about herself, to pay attention to what she is doing is hard for Mom because she is always thinking and doing for others. She takes care of my dad. She spends time and thought on the other people in the condo building. She has people over for coffee, she encourages people, she is present for people as they are preparing to die.

She has been like this as long as I can remember, anticipating needs and responding. From her I get a propensity for migraines. But where I complain about mine, hers used to last hours or days longer than anything I have ever had…and I never knew. She just kept pushing.

Her Swedish hospitality meant that if someone came over, they needed to have coffee and a snack. (or whatever they would drink. I learned to drink coffee early “to be sociable” but I also learned to drink it black so as to not be an inconvenience). She learned this from her mother.

The picture above, with Mom playing Scrabble with our son Andrew, shows her sitting. My guess is that after this move she was up, asking what she could get for someone. Even in the picture she is blurred because she is moving.

The time she is most still is when she is reading or praying. Mom has read the Bible more and talked to God about her family more than I will ever do. And she prays with that emotional response that you see when someone is talking to a loved one that they can’t see but long to, like a homesick child calling home, knowing they have to stay at camp, comforted by the voice from home. My mom is homesick for heaven.

So today my Mom is spending Mother’s Day unable to help, by doctor’s orders. She’ll cheat, however. She’ll figure out how to help someone without leaning over, will still pray without bowing her head. In fact, knowing mom, while I’m writing this, she’s been praying for me…and for you. My sisters live close and are taking care of my folks these days. They have this expectation-sensor, too, and both are taking care of others and their families in amazing ways.

Oh yea. The challenge.

I am, because of the expectation sensor that I got from my mom, acutely aware of how painful Mother’s Day is for many people. There is a huge gap between what Hallmark wants us to feel and what many people can feel about mothers. Women who don’t have children, children who don’t have mothers or understandably wish that they had any mother but the one they have. We have created incredibly high standards for what being a mother is and then we watch as people feel guilty because they can’t live up to standard that no one can reach.

So I write to celebrate my mom, knowing that it may cause pain and knowing that the last thing she would want is to make anyone feel bad. But she’s spent her life trying to help, trying to comfort grieving, trying to be present. And so it’s worth telling her story.

And if there is anything she can do for you, anything she can get you while she’s up, she will.