Wednesday, August 31, 2011


I took our boys on a road trip yesterday to a city about an hour away from here. Inevitably, we ended up at a mall.

Dear gracious, I DID NOT WANT TO GO TO THE MALL! It is such work. But, seriously, my daily life is just a series of accidents.

Driving down the thruway, I was happily listening to the GPS on my phone when it decided to drop out on me. We were just one or two exits from the one I was to take for the area zoo, darn it all. The timing was rotten. So, I took the nearest exit so that I could start the service again, and, wouldn't you know it, that road dropped me directly off into the mall parking lot.


Our older son started flipping out. He's a mall junkie. He thinks they all spawn carousels and a host of escalators, elevators and all things glorious. This trip to the zoo was going down the toilet before my very eyes. No amount of talking him down was going to work. I finally decided to go for the brass ring. Yesterday, I decided that, yes, I could actually go for Mom of The Day. We would return to the mall after the zoo.

And, three long, arduous hours of "It's not time for the mall. It's your brother's turn to have fun. Be quiet and ENJOY YOUR DAY, DARN IT. YOU ARE RUINING IT FOR EVERYONE!" we found ourselves sitting in the food court re-hydrating and planning our course.

Our older son was just so excited he couldn't sit. He was waiting for his brother to finish eating, and he drank in the scene, smiling, pacing, sighing with delight. Suddenly, unable to contain himself any more, he let out a whoop of joy that seemed to come from his toes. I smiled.

Then I took in the reaction of those around us. They were smiling also, but their looks were different.

Sigh. The looks.

Those looks came EARLY on in our son's development. Always judging, sometimes they came in the form of an appalled stare. Sometimes they came in first from shock and then, a lingering gaze as realization sat in that something wasn't quite "right." The worst looks were the ones that came with laughter.

In the early days, I pretended not to notice. I was working SO HARD. I loved him SO MUCH, and I just wanted everyone to give this child a chance! Please, please, don't write him off with your gaze until you give him a chance to grow.

Please don't leave him behind before he even gets a chance to get started.

When he first began his early intervention at-home therapy at the age of two years, we told nobody. I'm sure that neighbors wondered why there were cars lined up in our driveway hours on end. Those were my work horse years. Slowly, I began to wean myself from mainstream society's playgroups and gymborees and social gatherings that set him up to fail before he even began.

A reality check is when you get the looks even among the groups of "special" moms.

The looks that say, whew, at least my kid isn't as bad as hers.

And, well, what can one say to that? At the time, I couldn't argue about the lack of control in life. So, I started meeting the gazes, often with tears in my eyes.

Our younger son gets looks of his own, only the looks directed toward him come from his peers. In the last year of preschool when classmates would want our son to join them in a particular game, our son, not understanding either the game or the rules of social play--I'm not sure which--opted to just bite and scratch like an animal. He often just runs under the table like an animal running into his den. He growls. Or, he opts to act stark raving mad because he thinks that crazy equals popular.

The other kids around him have always looked to me for direction. Their eyes wide, they look to him as if to say, what's his deal? What's he doing? How am I supposed to respond.

From the start, those looks have been my cue to facilitate. I always breezed past the issue, trying to act as though all was right in the world.

Sometimes, as a mom in my shoes, you can't ignore that all just is not right in the world. Like, when my older son would stop at nothing to get to the vacuum at our local grocery store one spring. My job was to not let that happen or else we would be fighting it every single time we entered that store. And, it turned into a physical battle with both of us on the floor, my son hitting me, store attendants and even customers helping me. The store purchased my groceries for me, as everyone around just stopped and watched the scene.

I didn't care.

Oh, I cared about the meltdown. I cared about my son and the difficult position he was in. However, at that point, I was over any disapproving looks I might have gotten from passers by. Frankly, shame on them.

For, what is my sin, living out loud with my disabled child?

Over time, as my perception of the looks have changed from denial, to hurt, to anger and acceptance, I realize that they are all part of the process. Huh. Lucky us. I think for me, for some reason, it has been one of the more painful parts of the process.

Yesterday, as we sat in the food court of that mall and our son let out his whoop of joy, I was not embarrassed. I did not cringe. And, when I looked around at the young people near us, I was not angry at their reactions although they were not positive.

To the young teenage girls who were directly beside him, I did apologize. I'm sure that whoop of joy came as a shock. It was quite loud!

To another group of teen across the way that was enjoying the drama involved in the shocking noise that the mentally disabled child made, well, I struggled with what to do. I did meet the gaze of a couple of them. I toyed with holding those gazes.

At this point in my parenting, I can say that I've not waved a banner for any of the disabilities my kids have. I don't take up the causes. I should. I know many great moms who have enabled CHANGE in our community from their actions. I, on the other hand, am working to the best of my ability to simply manage change in the lives of two little boys--ours. That's simply all I can do.

By holding the gaze of those teens, I didn't want to shame them. I didn't want to shove a point down their throats. Yet, at the same time, I wanted them to know that the mother of that child--the object of their teasing--knew what they were doing.

I did that because laughing teens in malls grow up.

Last year, I was at our area mall with our sons and a man assigned to help our family with respite/habilitation by an area agency when I met the mother of a classmate of our younger son's. I did not know this family.

The mother introduced herself and understandably assumed that the reshab worker was my husband. Oh, no, I was quick to correct her. Our older son has autism, and this man is here to help us care for him.

The next day, that woman made a phone call to our school district's transportation dispatch. All the children in our district sat on the same bus to the montessori school which our kids attended. She asked why transportation would ever put her child on the bus with my younger son because our family and my younger son have learning disabilities. The mother was angry, and the conversation was inflamed. She did not want her child to mix with children like mine.

I let the authorities handle that situation. But, in the mall yesterday, I thought of it. And, while I didn't want the teens around our older son to pay for the ignorance of others, I also didn't want their youthful ignorance to grow into something potentially worse.

For me, what started as a source of pain, a look of judgment, became an opportunity for growth, not only for me, but, maybe for others. Who knows. I guess all I can do is plant the seeds.


  1. Keep planting seeds. Not all of them will take, but some will.

    About ten years ago, one of the kids in my care was a little boy with cerebral palsy. He started with us at about 4 months old, right after he got out of the hospital (he'd been a very early preemie). My family fell in love with him, and he with us. He spent every weekday with me and many, many weekday evenings, weekend days and nights, and overnights with my family. His family had a number of reasons for leaving him with us so much, but we really didn't mind. He became a part of our family, though unofficially.

    We took him with us on frequent outings and I saw the looks you are talking about. I felt those looks, and they didn't feel good. He was substantially disabled, physically, but was very bright. I hated that he probably felt the looks, too.

    On one occasion, a woman came to the daycare seeking care for her daughter. We talked for a few minutes and I handed her some paperwork to be filled out. Then she saw him, his limbs stiff and twisted. He was laughing with another child and he looked at her and smiled. She got the look. She gave that look to a four-year-old boy who had done nothing but smile at her. She told me, not quietly, that she wasn't sure that she wanted her daughter around that. I snatched back the paperwork, showed her the door, and told her that she should be ashamed of herself.

    I hope she was.

  2. Amy,

    I couldn't figure out how to write my name in the "Comment as:" box, so I'm just going to put it in here: Billal (Lose the Training Wheels Volunteer)

    Your blog is probably the most amazing thing I've ever read on the internet. Being a student I spend a lot of time on the internet, (procrastination *sigh*) and I think I've checked your blog daily. However I don't consider your blog a typical website as I've learned amazing things from it!

    I know I told you this at camp, but you are a really wonderful mom. I hope you don't mind me reading this, (since I'm so young and I don't have kids) but I look forward to your insight.

    Stay strong and keep being an amazing mother!


  3. Beth....that little boy was so lucky to have you, and I can only imagine how thankful his parents were to have someone they relied on-entrusted in them the care of their special child. That's a gift.

  4. Billal! So glad you checked in!! Thank you for sticking with us! My kids had tbe best Lose The Training Wheels volunteers ever! We are in the final days of a break between summer school and the start of the new school year. It is such a hard time for families like mine...the break in the routine and lack of services send our kids off the wall. So, I'm in the battle zone right now. I was hoping to catch up with all of you once school started for the kids. Next week!!! Yay!

    It's after 2am. T's having a one-man party in his room. I am happy to hear from you and for the diversion. I was a student once just like you. Then life took me down a different path. I'm not sure we started out all that different, however, would I have read a special needs parenting blog at your age? I don't know...

    Good for you! Thanks for the comment. Oh, and I believe you have to have a google account (easy to do) in order to leave your name when you respond. Otherwise, the anonymous works just fine.

  5. Beth--I love you even more than I already did for showing that woman the door! You rock so hard :)

    I've gotten 'the looks'. I've gotten the talks about all the wrong ways I care for my son. How he'd be better off if only we did ______. Peers have made fun of other children's peers have teased. All we can do is plant the seeds and hope that they take root.

    I want to second the notion stated about that this blog is phenomenal.

    I also want to commend you for letting the authorities handle bus situation. I'm not sure I could have gotten out of that one without giving everyone and anyone a piece of my mind :)

  6. It did really hurt my feelings, but because my kids were oblivious to it, it was easier to leave it alone. She was clearly letting her true colors show to others.

  7. Hey Amy!

    Thank you for the compliments! I really appreciated them!

    I hope everything goes well with preparing the boys for school!

    I'll let you know if I'm ever free to help out. School just started so it gets kind of busy, but if I ever have any time I'd love to help out with Trey and his bro again!