The Short Bus Diaries » Confessions About Life With an Autistic Son

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How Quickly Remarkable Shifts to Normal

Before I get too far down 2014, a year that has started out with an exhausted, unmotivated version of myself, I figured that I should catalog, in prose form, where we are in our “Autistic Life”. If I wait any longer to document this particular moment, it will quickly melt into the daily landscape of our lives and I will one day be unable to specify the point in time at which my son started taking visible steps toward the world that the rest of his family occupies. Maybe one day, I will hardly remember the actual distance between where we were and where he was, because we will all be walking around the same daily circle, together.

My mother recently came to visit us. She had not seen our son since Thanksgiving of 2013, which meant that she essentially closed the door on one version of him in November 2013 and opened it to the new and improved 2014 model. Given that I am deliberately non-optimistic in order to protect myself from disappointments, I was tickled to hear my mother say that she was looking at a completely different little boy than the one who had been running aimlessly around her house last year. (By the way, by “non-optimistic”, I should clarify that I instead choose to simply occupy the here and now: I don’t think about what could be in the future; I just observe and fully participate in what’s in front of me, continuing to take my son to his various therapies and implement the latest behavior protocols at home. If he improves, WONDERFUL. If he doesn’t, well, at least my heart wasn’t set on an engaged, talking, interactive version of my son that never emerges.) She couldn’t believe that our son was so calm, that he could sit in her lap and work on a spelling and writing game on the iPad for five to seven minutes straight. She was pleasantly surprised to watch him eat asparagus, rice, and something other than chicken nuggets, given that he had essentially only eaten fruit, french fries and fish/chicken nuggets for the past four years.

It was during her stay that I realized how quickly what once seemed unattainable (sitting still for learning and eating, showing interest in the iPad, watching a few blissful minutes of TV, picking up books to page through them, etc.) suddenly seems revolutionary the moment he achieves it, and then quickly merges with the other unremarkable, absolutely ordinary occurrences of our family’s life.

For instance, here are a few “whoo-hoo” moments I shared on Facebook somewhat recently:

Mind-Blowing Moment: http://www.youtube.com/watch?v=-AsAssNruGk

This was the first time I witnessed any sort of interaction between my children since my daughter was a baby (when my son would run up to her and kiss her, saying her name with his little kid pronunciation and telling her that he loved her. He also used to stop her from getting too close to the street, when the were out walking, say “No, Baby, no!”). This moment was remarkable because of my children’s physical proximity to each other, their shared interest, and the fact that my son was determined to watch something on that iPad. (Apologies for my half dressed daughter; capturing the moment was more important than putting clothes on her. 🙂 )

These days, I am desperate to find just the right iPad apps for my son, because he is swiping his way quickly through the ones that sat around, untouched, for almost a year. We actually have to take away the iPad because we are supposed to be encouraging him to show an interest in other activities. THAT is how much he likes the iPad. And that is how unremarkable these moments have become.

Every Day Occurrence: http://youtu.be/YB0COSq1qWQ

Also towards the end of 2013, my son started to briefly stare at a few pages in the Where’s Waldo book series. The moments were fleeting (~30 seconds long), but I nevertheless ordered every single one of the books in the series, just in case. (The second my son shows interest in anything, I order 10 versions of it in every color.) In early January, his teacher emailed me to announce that he had walked over to a book shelf, taken down a children’s cooking book, and sat down on the floor to page through it. I was ELATED. He was voluntarily looking at books. Maybe he could actually learn to read!

And now I find myself reading emails on my cell phone, while he casually leans back on the couch to flip through a book, because his interest in books (while still limited to pictures only) is so quotidian that I scarcely celebrate it now, I’m embarrassed to realize.

Then there’s the progress on the self-containment front. Yesterday, I was proclaiming a whole new stage in our relationship with the outside world, after taking my son to the grocery store early in the morning. After assessing that the grocery store was fairly empty at 8am on a Sunday, and diagnosing my son as being in a mellow mood, I decided to throw caution to the wind and let him walk BESIDE me at the grocery store, instead of riding inside the shopping cart. And nothing bad happened! He didn’t bolt into the stock room, he didn’t steal a donut from those unlocked cases, and he didn’t walk up to take the hand of a stranger (which is still cute now when he does it, but is liable to get him pushed/punched when he is a grown man with no visible disability, who does that to another stranger in public). He listened to me when I told him to stay close, and he immediately put a bag of chips that he wanted–that I did not want–back on the shelf, when requested to do so (a totally normal junk food demand from a six year old boy at the grocery store). I practically squeezed my son to death with hugs and kisses afterwards, telling him how proud I was of his behavior.

Maybe we could even try going to a coffee shop again, and I could actually relax for a moment and get out of my “battle posture”, in case he decides to steal a cinnamon roll from a woman who then begins to scream at full volume to the entire coffee shop “WHAT ARE YOU DOING?!”, after I dare to take my eyes off of him in order to zip up my daughter’s coat (not that that particular incident ever took place…). Perhaps one day soon, we can go out to eat as a family, without leaving as quickly as the food arrives, in order to avoid any incidents. I can smell freedom!

However, when I announced this “new” development to my husband this morning over breakfast, he told me that he lets my son walk alongside him all the time now at Home Depot and Walmart, and that he probably should have told me about it. Honestly, my husband’s response was so ho-hum that I felt a little deflated, thinking I had been the first person to discover my son’s new skill.

Instead, what I really should take from this set of milestones (everyday events for most families — but not ours) is how quickly they become as unremarkable as simultaneously switching lanes while driving the car, singing along with the radio, and wondering what to make for dinner tonight. As quickly as they make me want to shout with joy, they shift into the “yeah, so anyhow” category. Looking back, even over a period as short as four months, it’s hard to remember when these new skills first emerged. This is not necessarily such a bad thing — it’s just life.

I suppose that’s how it is with all of the usual childhood milestones–sitting up, crawling, walking, talking, potty training. I still struggle to answer doctor’s questions, when they ask me to recite those key dates for my son, because these appeared at such a relatively normal rate during his first two years of life that I didn’t store the dates away for future use. Similarly, it is hard for me to define at which exact point my son lost two of those skills, without a few guideposts for context (which school he was attending and which therapist/doctor we were working with at the time). I still get unexpectedly smacked over the head with random memories of my son asking me to tickle his neck, or of him shouting “goodnight” from the top of our stairs in the normalist of normal parenting vignettes…although I can’t quite remember the moment at which he stopped being able to talk altogether. The before and after boundary eventually became smudged, without me being aware of it.

So I am writing this rather rambling post in order to record these things, somewhat officially (because if we don’t announce something on the Internet, does it really happen in real life…?), before I forget when they actually represented turning points in our lives.

It’s not as if we’re out of the woods yet. We’ve essentially given up on pushing my son to speak again. He once did, and perhaps he will again. But we now have faith that he will learn to communicate in other ways, and are getting ready to launch a home-based reading program, along with the one he is doing in school. And the potty training skill that he once mastered before his peers? Never underestimate how quickly one can acclimate to the sensation of having someone else’s poop on your hands. 😛  Also, as my son realizes what he wants to communicate, but cannot yet find a way to do it so that he is understood (i.e., “I’m tired, but don’t want to go to bed”), pre-bedtime tantrums have definitely become “a thing”, in contrast to the mellow boy he is during the day. These events usually require me to takeoff my glasses and protect my face and body from his angry, random flailing.

Perhaps one day, I will put my hand on the shoulder of a fellow autism parent and tell them that we once struggled with “that” too, and that it will get better. And when they ask me about the exact age/moment my son started being able to do “that thing”, I won’t be able to pinpoint exactly when. That might not be a helpful response to a parent who’s currently struggling–I realize that. But at least I will be able to confirm that it is actually possible to accomplish this thing, something that I never let myself contemplate before I actually see it with my own eyes. I just need to appreciate these things when they are new and exciting. That will have to be good enough.

Love this quote for that very reason, and that’s why I put it in our holiday card:

“I urge you to please notice when you are happy, and exclaim or murmur or think at some point, ‘If this isn’t nice, I don’t know what is.'”

― Kurt Vonnegut, A Man Without a Country

And now for some happy photos!

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