Where We Are Today

We have come a long way, this boy and I. We’ve seen the worst in each other, we’ve seen the best. Good days, bad days, and all the days in between. We’ve overcome sleepless nights, aggression, communication barriers, medication adjustments, education hiccups, illness, relocation, failed relationships, new relationships. So, what does today look like?

Today, generally speaking, The Boy is a happy-go-lucky, well-adjusted teenager. Although he has proven himself to be very adaptable, he simultaneously thrives on routine. That seems to be one of the oxymorons of autism.

He has gone from eating only a few select foods to eating almost everything in sight. Just this morning his breakfast consisted of oven roasted sweet potatoes, sausages, scrambled eggs, cranberries and mango yogurt! Those who knew him early on would be amazed at that.

But in the day-in, day-out routine of daily life, we still have struggles. This time of year is always hard on him. Although he truly loves school, he looks forward to summer vacation. For a few weeks, at least. He has been ready to go back to school for several weeks now. School provides him the structure and routine he thrives on. Summer vacation means too much down time that he doesn’t know how to fill. Boredom sets in, and coupled with the lack of structure, the behaviours begin.

This summer, and honestly, a few months prior, has brought about a lot of changes in him. Part of that change is physiological. He is going through puberty, and a lot of things are happening in his body that he doesn’t understand. Part of it is that he is more than ready to get back to school. He misses his teachers, EAs and friends. But we feel there is more to it than that.

We are challenged daily with many “negative” behaviours. He stims almost constantly, both physically and verbally. Always moving, always chattering and making noises. He repeats himself nonstop. To make things harder to handle, with every phrase he utters, he needs us to reply, making conversation with each other impossible. He does not accept “no” as an answer. For anything. Each no, whether it is a direct no, or something he perceives as a no, is met with debate. We have often joked that he should be a negotiator when he grows up. He is very good at it! For example, if we are soon heading out to run errands or take him somewhere, and he decides he wants to take a dip in the pool, we tell him not now. First, blank, then pool. Not acceptable! “Pool. Pool. Pool. Pool. Pool. Pool. Pool. May I have pool? Pool. Pool. Pool. Pool. Pool.” Please note that this is not an exaggeration. No, Victor. First car, then pool. “Pool on Tuesday.” Or Pool at 6:00. Or Monday at 10:00. Or … well, you get the picture. This is merely one incident. The same thing happens with everything that happens in the run of a day. From what he wants to drink, have for a snack, where he wants to go, what he wants to wear, to what book he wants to read at bedtime. Every single conversation. Every single day. It wears on us, for sure.

Signs of OCD are very pronounced. We live in a house with two cats and a dog. There is hair. That happens with animals. This boy can spot a cat hair on a pair of folded socks from 20 feet away. And it is a catastrophe to him. “Hair! Hair! Hair! Hair!” Over and over again until either he takes care of it or we lose it. Hair is an issue to be dealt with immediately. Regardless of where the hair is, or what is going on at the moment. I have lost count of the number of times he has seen a loose hair dangling near my face and felt the overwhelming need to take care of it … while I am driving! The same urgency is felt when the phone rings (we have considered turning off the ringer on more than one occasion), the microwave beeps (a plaintive cry from the other side of the house “The end! The end! The end!”), when he sees a bug (dead or alive. He isn’t choosy), when the Keurig is out of water and the light flashes (Fix, fix, fix, fix. More water. Water. Water. Water. Water.). Everything that happens in the daily routine is increasingly urgent and alarming for him. It’s as if, if that particular emergency is not handled like yesterday, the world very well might explode. And it gets worse every day.

We can’t go into a store with him anymore without him fixing everything, from arranging the apples that have fallen out of their spot in the produce department, to crooked cereal boxes, to taking “orphans” back to their home. If he sees an item in the wrong place, he has to take it back to its rightful home. I see employability in his future, at least. But in the meantime, it means taking three times as long to get groceries, or full-on meltdown. Usually, it means we use the time he is with his respite worker to grab a few things at the store.

Another fixation he has is dates. On the first day of every month, the boys set up the new (dry erase) calendar. It is even colour coded. Besides the usual month and dates, this calendar also has to have holidays (like Earth Day or Easter), special days (like birthdays or Exhibition day), and appointments. And every day, several times a day, he has to read the calendar aloud. He reads appointment dates. Days that have meaning to him, like going to the Exhibition. He doesn’t even need to be anywhere near a calendar, because he has long since memorized it. And it’s not just the current calendar. He’s already talking about Tuesday, October 31st, 2017, Halloween. Monday, December 25th, 2017, Christmas Day, open presents. Saturday, December 30th, 2017, Happy birthday, Victor, open presents. He knows the exact date of every major holiday in 2018, and many of the obscure ones. Like Flag Day, Ramadan, Earth Day, St. Jean le Baptiste Day. Which, admittedly, is a pretty cool skill. He has amazed many people doing this. But every single day, several times a day, he repeats these dates. Three times, twelve times, twenty. I’m sure you can hear the nerves fraying right now.

Since he is always (seemingly, at least) happy, he wants everyone around him to be happy. He is almost always smiling, and he loves it when those around him smile, too. Again, almost nonstop, we hear, “Mom smiling. Dave smiling. Mom smiling. Dave smiling. Mom smiling, Dave smiling, Mom smiling, Dave smiling!” Sometimes it’s hard to deny him when he’s sitting there with that devil-may-care grin. But even while we are smiling, he is demanding that we smile. Yes, demanding. We have long since given him a limit on smiling. “Okay, buddy. You got your smile. No more until we’ve finished eating supper.” Which immediately brings on, “Smiles at 6:00.” Or 7:30. Or Tuesday ….

And he has discovered “sad songs.” These songs are not sad by most people’s standards. “Suds in the Bucket” by Sara Evans. “Man I Feel Like a Woman” by Shania Twain. “Painkiller” by Little Big Town. “Hand in My Pocket” by Alanis Morisette. To the general population, these are not sad songs. Yet, he actively seeks them out, either on his iPad or YouTube, starts listening to them, and sobs his heart out. Not a typical “OMG, I’m in pain” cry, or the “I really don’t feel well” cry. This particular cry will have hounds howling five counties away. It is far preferable to chew on tin foil while listening to fingernails slowly scrape their way down a chalkboard. And the crocodile tears accompany the incredibly high pitched wails. I’ve often wondered what the neighbours are thinking, since our windows are always open. I figure if they ever venture over to find out, we’ll invite them in for coffee, then lock the doors on our way out.

Don’t get me wrong. Moments of maniacal laughter, infectious giggles and even (extremely rare) moments of silence are interspersed. He is still snuggly, happy and energetic. Those are the moments we live for. They are what get us through.