Dear Typical Parent,

Hi there! I saw you this morning at the bus stop, taking pictures of your kids in their new clothes with shiny backpacks and haircuts. My son was the little guy with a hole in the back of his shirt where he ripped out the label because he couldn’t stand the feel of it against his skin. He had last year’s backpack even though the zipper is broken, because it’s familiar to him and he was also wearing last year’s shoes because he doesn’t grow much and they feel just right. Kids with autism like things that are broken in.

I noticed your son’s shiny braces, too! My son needs braces, but he can’t get them yet. He’s had two surgeries to have teeth removed (not at the dentist’s office, but at the hospital because that’s where kids with heart defects have to go), but he needs to have even more taken out before we can think about braces. That will be surgery number 14…I think. I’ve lost track.

Your daughter was the one first to ask how old my son was; probably because she’s seven and taller than he is. See above, regarding heart defects. He gets a shot of growth hormone every day, though, so I’m hoping he looks like a nine year old by Christmas break!

At first he didn’t hear the question, because his new hearing aids are still on order. After she asked three times, your son was shocked after my son said his age, so I said, “No, really. He is 13.”

Your boy replied, “He’s so little. That’s weird” and it was awesome how you nervously laughed and didn’t correct him.

When your kids come home this afternoon, they may tell you that my son sang the entire time he was on the bus. Or, that he bounced in his seat, or that he did something completely off the wall like throw something out of the window. I hope you are like the parents at his first primary school and tell your kids that he may not be able to help it, but if you’re like the parents at his second primary school, I understand that your first reaction will be to call the school and attempt to get him removed from the bus.

I know my son doesn’t look like yours, act like yours, play sports like yours, eat like yours, or talk like yours. That’s because he is not yours. He is mine. He is unique and quirky and sometimes the most frustrating human being in the world, but he is a child. And, he’s a child who needs an education just like yours. He’s smart enough to score on a 10th grade math level, but sometimes he can’t get his actions and words to match what’s in his brain.

Tomorrow, after you’ve had a chance to talk to your kids about inclusion and how every child deserves a chance to go to school I hope they will greet him with hearty hellos. I promise, if they do, I’ll do the exact same for you.

Sincerely,

Momo

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If I hadn’t been there myself I wouldn’t have believed it. My son made a stranger cry today.

My 12 year old with special needs, who struggles desperately with decision making, had a melt-down in the patriotic shirt section of Old Navy today. We spent 15 minutes going back and forth between the shirts and the register because he couldn’t pick the one he liked. Because we’re trying to get him to focus on this much-needed skill I told him that he had to make a final decision and couldn’t change his mind again – it was that shirt or NO shirt.

Of course, by the time we got to the front of the store he had decided he wanted a different one. Again.

So I took the shirt back and told him he wasn’t getting anything and that’s when the melt-down began. He doesn’t throw traditional tantrums with kicking and screaming, but with tears and thoughtful manipulation. He stood in front of the check out line with sweet, silent tears then said, “Please, mom! I will sacrifice myself for that shirt!”

imagine those eyes, filled with tears

By the time we got in line, his face was red and splotchy and his shirt was dotted with tears. Did I mention the line was LONG. It looked like Black Friday and we were sandwiched between people in the front and back and the racks of impulse purchases on the sides. Well played, Old Navy. Well played.

My son continued his pleas and I continued to say that he was not getting a shirt, that he has to work on decision making because if he can’t make a choice about a t-shirt, how can I trust him to make big decisions later in life, to which he replied, “I WILL make big decisions! I will be a good driver and I won’t do drugs!”

Then I got tapped on my shoulder. I turned around to see the woman behind us crying. With heartfelt sympathy for the 12 year old she probably thought was 6, she said, “He’s making me so upset.”

I nodded and said, “I know. This is hard, but I’m trying to set a precedent here.”

Then my son looked at her with his sad, tear-filled eyes and said, “Sometimes kids have a hard life.”

As we neared the register we stood next to a bin full of miscellaneous things like dog antlers, plastic Slinkies, and Beanie Babies; to one of which my son became quite attached. Since he couldn’t get the shirt he asked if he could get the Beanie Baby instead. Because I’m the meanest mom ever, I said no. The woman behind us continued to cry.

And, wouldn’t you know, that lady who was moved to tears by my kids dramatic display ended up buying him the Beanie Baby? As she handed it to him she said, “Here you go. Now maybe your life won’t be so hard.”

Though in the end he got his way and that was not what I wanted, part of me was moved by her gesture and how she was touched by this little boy and his sadness.

But, really? Couldn’t she have bought him one of those shirts?

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Every Sunday at church I reach for him during the sign of peace. As I simultaneously shake his hand and lean over to kiss the top of his head I remind him to look people in the eye when he says, “Peace be with you.” It’s not necessarily something that comes naturally to him.

There are times, of course, when he will sit and stare intently at my face as we discuss the day’s events. Some evenings he will sit on my lap and I’ll tell him stories and he’ll look at me so closely that I can count his freckles.

But, more often than not, when replying to someone he quickly glances away as he says, “Thanks” or “Bye.” Eye contact is not his strong suit.

Well, with humans anyway.

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Two days ago was my son’s 12th birthday; the day to commemorate how far he’s come after beginning his life being whisked away via ambulance to another hospital. The same hospital where his dad and I have sat, time after time, wringing our hands in the waiting room during his many surgeries. This child of mine, for whom I have given so much time and even more energy is now nearly a teenager. I never thought we’d make it this far.

And, yesterday was Mother’s Day; a day to remember the first time I held my son. A day for me to cherish my boy and his sister and, honestly, after the 12 years we’ve had with my youngest that’s all I wanted to do. I wanted to savor every moment of motherhood.

The combination of these two important dates were churning up a lot of memories. I was feeling pretty emotional, so when I found out my son was writing some nice things about me at his Scout banquet the other night I thought it was perfect timing. I knew it would be just what I needed to make me feel better and focus on the present.

As I stood with other parents, he approached me with this.

Then he handed it to me and said, “Here, Mom. I’m sorry I drew you so fat.”

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