Dear Grandmother from the park:

     You probably don’t remember me, but I remember you. You see, I used to be just like you, although I never would’ve been as vocal about it. I was one of those people in the grocery store who couldn’t stand the sound of a screaming child. I still can’t stand it, but not for the same reasons: now I wonder if the child is overly sensitive to sound and light, or if they have been stretched past their point of self-control.  I don’t always assume kids are “typical” anymore because sometimes it’s so hard to tell. How I wish you knew this fact.

     You see, this wasn’t our first visit to the train park. My son loves that place more than just about anywhere else on earth, and we’ve worked very hard to make visiting there pleasant for all of us. We’ve been going for years, but going with a friend is something he’s never experienced. I took him and his one friend, the first real friend he’s ever had, there after school. I’m not sure I’ve ever seen him as excited as he was that day, hands flapping as I picked them up, jumping up and down as we waited in line for the train.

     Perhaps it was my mistake, but after years of his begging, I finally agreed to let him ride in the enclosed kids’ caboose in the back. I’ve never let him go on the caboose because I wasn’t sure how he’d handle it. What if it terrified him? There’s nothing that can be done until the train ride is over, and I can’t be in there with him to help him. But this time, with his special friend, I thought perhaps it was time.

     Sure enough, he screamed the entire time – but happily. Stopping only to breathe, he continued his high-pitched, excited screaming for pretty much the whole ride around the park. In the car in front of the caboose, just far enough away that he couldn’t hear me, I didn’t know whether to laugh or cry. He was clearly so thrilled to be in that caboose he couldn’t even contain himself. Yet at the same time, I suspected some of the other kids didn’t like it, despite some of their eager participation in the screaming themselves.

    When the train stopped, I waited outside the caboose, speech prepared to remind him that when other people make loud, unexpected noises it scares him, and how he needs to remember there are other people around. Of course he let out one last little screech, which prompted you to scream yourself, so angrily, “Oh, STOP that SCREAMING already!”  Everyone standing there snapped their heads up at your tone, except my C, who was oblivious. Fortunately, you weren’t even on the train yourself (your granddaughter being able to go alone), so you didn’t witness the entire trip. Although I’m sure your granddaughter filled you in on the highlights.

     I had the chat with my C, after which he was appropriately chagrined. I saw you take your granddaughter over to the carousel, and I thought about approaching you to explain. I wanted so desperately to educate you about what we’ve gone through to get where we are. I wavered, not wanting to seem like a parent who makes excuses for their child, but also not wanting you to get away with feeling so self-righteous about this supposedly horribly behaved child of mine. I was so angry at you and people like you I wanted to strike a figurative blow for all of us parents out there who work so hard to even take our kids anywhere. We try so hard to protect your sensibilities, but frankly, I’m a little fed up at this point with worrying about people like you.

     So I find myself thinking it’s a good thing you are blessed with the lovely, quiet, seemingly well-behaved little granddaughter you seem to have, because I suspect if there were any hints of issues, you wouldn’t be able to handle it. It would probably surprise you to know how lucky and blessed I think I am. Wherever you are, oh grandmother, I hope you know how lucky and blessed you are.

Kids on steroids

     I’m often looking for a quick explanation to give to people when they ask what it’s been like raising C. I realize it’s difficult for people to understand what other people’s lives are like, and I want to be able to share in a way that helps people understand both the challenges and the joy.

     I think having an autistic child, no matter where on the spectrum they fall, is like multiplying everything by 10. Much of what C does is hyped up in one direction or another. While I have been thankful not to have to attempt to figure out how to teach C to read, I would give just about anything to get him to eat a new food. Learning the states and their capitals? No problem. Blowing his nose? A zillion steps that have taken years to process.

     And skipping developmental steps, or going through them at different times than “normal” have also presented interesting challenges and non-challenges as well. While my friends were desperately child-proofing every single thing in their homes to protect their toddlers, C was busy working on sitting up. We never really had to worry about him hitting his head on the coffee table; by the time he decided he was ready to walk, he just stood up and walked. There was no toddler stage in our house.

     Not only are tasks often out of whack in terms of the ease or difficulty with which they are learned, but emotions are often very strong as well. While the tantrums and extreme distress are difficult for not only us, but for C as well, it’s tempered by the great and absolute joy he experiences over minute little details in life. New toothbrush? Tantrum. Getting an extra 5 minutes of computer time? Sheer giddiness. Outgrown shirt? Tears. New yellow shirt to round out his “closet rainbow?” Worthy of a press release.

     Husband and I often laugh at ourselves in wonderment at the fact that we would probably have no idea what to do with a “typical” child. And honestly, we consider that fact a bit of a badge of honor. Not that we deserve a pat on the back; rather that we are in some kind of cool, secret club. Sure, the dues can be high, but it’s worth every figurative penny.

When all else fails

     After a particularly distressing evening with C, one where I am striving to keep my patience and calm (and not particularly succeeding), I always enjoy going into his room for the last look after he falls asleep.

     In sleep, he brings me back from frustration to calm. His angelic little face resting on his pillow, blanket and stuffed dog Bill wrapped up in his arms do wonders to make me forget the rest of the evening. No trace of his screaming, defiance and tears are left. I cease to wonder how we’ll get through this latest behavior challenge and gently brush my lips across his cheek. And smile.

It’s a Dennis day

    We have different days at our house. Today was a Dennis (a.k.a. “The Menace”) day. It’s a day when I count the hours until C’s bedtime hoping we can all survive relatively unscathed. C is wound up, sassy, hyper and completely “wiggy.” My Nana would have said he had the devil in him today. I never know what triggers these days, and fortunately they come fewer and farther between as of late. We have various solutions to Dennis days; at the moment C is in a shower, happily contained, putting sticky letters on the shower walls and hopefully being soothed by the warm water. Nevermind we live in the desert where water is scarce. Some days our environmentalism simply goes down the drain, no pun intended.

     There’s also my favorite type of day, the “Calvin” day. An enormous fan of the now defunct comic strip “Calvin and Hobbes,” I have long adored the trademark triangle smile of Calvin that truly does appear in my C. I think Calvin was somewhat reincarnated when I gave birth. On these days, C is mischievous and adorable, doing such things that make me laugh even though I probably shouldn’t.

     Last is a Rainman day. Punctuated by questions such as, “Mommy, what is negative 200 minus negative 200?” (Um, I dunno…???), Rainman days are by far the most interesting. I catch surprising glimpses of how his brain works and things he’s learned I had no idea he knew. Lists of planets, great big fancy words such as “cartographer” or “communication,” and other random assortments of facts and figures leave me wondering if he really is a species of sponge.