Life with Cooper. Ch-Ch-Ch- Changes
The summer of 2016 will go down as the most challenging of our life with Cooper. We hear over and over how cognitive growth comes, but it comes slowly and will level off at some point. Well this summer it came, but it wasn’t slow. It was disturbingly fast. Hold on to that word disturbing.
Our family was “vacationing” in Chicago, taking advantage of my wife Julia’s corporate housing situation as the Production Stage Manger for the out of town run of “The Sponge Bob Musical” which is headed to Broadway this spring. It was a great opportunity to get away as a family. We were crammed together in a tiny utility apartment, but we made the best of it and were having a great time.
Keeping track of Cooper in a large city was a challenge as he proved just as savvy on the Chicago Transit Authority as he is on NJ Transit. I was constantly on his case about staying off transit, but no matter the correction or how it was delivered he responded with anger, foul language and defiance. The usual.
After a particularly difficult day spent chasing him around town I was exhausted and launched into a tired, frustrated rant around 11:00pm declaring, “I am sick of being treated like the shit on everyone’s shoe!” And snap! Just like that, with one honest, weary outburst I became the object of my son’s affection.
Let me elaborate. In that moment I went from being the most reviled, gross creature in his world to his most coveted possession and it manifested itself in the strangest way. My son became obsessed with my pajama pants. My soft, cuddly, Target pajama pants. Cooper was suddenly fascinated with women and the way he was going to express it was by stealing, hiding and wearing my pajamas. And that’s where the journey of summer 2016 begins.
After two days of Cooper harboring my pajamas we found him parading around in a divine, women’s pink pajama set. Not mine. It had soft flowing pants and a long caftan that matched. It took a hot second to figure out that he had stolen our debit card and bought the combo from Target. We took the clothes away and gave him the standard don’t steal speech. He had no idea he’d done anything wrong. Cognitively he didn’t understand. He wanted women’s PJ’s; I wouldn’t let him have mine. His solution was to get himself a set. We tried our best to help him understand the potential consequences of his actions. Also, we couldn’t let him parade around in the flowing pink pajamas. Not that we care what the kid wants to wear. More power to him, but right now he’s not prepared to deal with the back lash he’d get for roaming around in women’s wear.
Things held steady for a day or two. When it was time to prepare for the journey home I pulled out our hero’s suitcase. I opened it and found myself staring at a huge pile of clothes that I didn’t recognize. It was all women’s wear, size small, clearly not a new store purchase. My wheels started turning. Were they Julia’s? No, not her size or style. Maybe one of the actresses in her show needed storage? It was possible, she was there for 6 weeks before the kids and I showed up. So I took a photo and texted it to her, “do you know to whom these belong?” She answered with a confused, “No.” I replied, “I think we have a problem.”
After a remarkably calm conversation Captain Autism revealed that he went into apartment #3507 because there was a sign on the door that said the door is open, come in. So he went in and took the clothes. He entered a stranger’s apartment and took things. The implications were too huge. The WHAT IFs were endless and terrifying.
The walk to apartment #3507 was a long one for me. I had folded the clothes neatly, placed them in a bag. With a serious amount of trepidation I knocked on the door. I was greeted by a 30-something year old woman.“Are these yours?” “Yes,” she answered with justified concern and confusion.
“Hello’” I said with that bit of defeated sigh you usually hear in my voice. My name is Doreen. I have a son with autism. And I have a story to tell you.
As fate would have it this lovely young woman was a medical student at Northwestern, specializing in children with special needs. Fate? Karma? Guardian angels? Luck? Call it what you want. After the shock wore off, wonderfully she understood. We all ran into her the next day and she tried to offer Cooper a kind word. At the sight of her he fled. She turned to me and said, “You are the strongest woman I have ever met.” And I stood there and cried and accepted a hug from this stranger who entered our world on the bazaar impulsive whim of Cooper.
During our last two days in Chicago there were no more break-ins; however, Cooper seemed to be using his new-found powers of “cognitive growth” for evil. He regularly took our credit cards and went off on shopping sprees. That or we were finding clothes with the security tags still on them. All pajamas.
The stealing in of itself wasn’t as upsetting as the hard, harsh reality that by this time next year Cooper was going to be a big black guy and won’t be met with the same big-hearted understanding when he gets caught. Changing ATM Pin codes was small potatoes.
I was hopeful that returning to the home routine would end my sons thieving ways. I wrote off the “apartment-enter” as a “one-time” thing. That fleeting wish died within two days. First, we found women’s pajamas from Old Navy, security tags still on. Then he went mall- hopping with our credit cards. Merchandise was returned and our new normal of locking everything down began. We couldn’t chain him down physically, so hyper vigilance became our new way of life. Exhausting.
If you’ve been following along you know Cooper has a penchant for trains. His jaunts have become famous in our little hometown and have brought us a fair amount of worry, but mostly they’ve provided great fodder for Facebook, an eye-roll, and a weary sigh. Definitely the need for a stiff drink.
Suddenly, what were once random joy rides to Hoboken became epic journeys to places far and wide. Waldwick, NJ. Spring Valley, NY. Trenton, Weehawken…. Then it became bus journeys to the Livingston Mall or Midtown Manhattan. Cooper would visit the Nintendo shop, then hop a subway turnstile and grab a 1 train downtown to Queens.
Tracking devices relieved the terror of not knowing where he was, but how to get him home? These jaunts usually ended with picking up my son at police stations: Jamaica Queens, Montclair, and Secaucus to name a few.
Cooper has always been very polite and shown the proper respect to police. One particular night he went roaming, but was hungry and tired and upset because NJ Transit Police caught him. He hadn’t taken his meds that morning. By 8pm, he had one of his scary rages and called a police officer a fat, fucking faggot. (“Faggot” was a word he apparently learned from a friend with two dads. Go figure.) When I picked him up (Secaucus) and learned of his disrespect, I lost my ever-loving mind. All my fear and anxiety exploded. And the police stepped back and let me have at him. “BOY, DO YOU HAVE ANY IDEA THAT IF THIS WAS NEXT YEAR YOU WOULD BE IN HANDCUFFS? IF YOU’RE LUCKY YOU’LL END UP IN JAIL AND NOT DEAD!!”
I knew that Cooper didn’t understand a word of what I was saying, but out the words came. “THESE OFFICERS RISK THEIR LIVES EVERY DAY TO KEEP YOU SAFE! HOW DARE YOU BE DISRESPECTFUL?! STAND UP AND APOLOGIZE!! NOW!!!!” He did. Apologized. I thanked the officers and we left. And I knew nothing would change. Cooper had his cognitive growth spurt and the prize has been hormone-driven actions to sate a natural curiosity he can’t fully understand. Awesome.
The fun continues!
A few days later my friend told me she found my son in her house. “Oh, shit.” Another friend told me she found him in her bedroom. “Fuck.” Then our former next door neighbor called. Apparently, Cooper tried to walk in the back door of the house where we used to live, only to be met by the new owner. “Hi, I’m Doreen. Welcome to the neighborhood.” That was a fun first meeting. Again, I was met with kindness and understanding. I handled it with my usual flair for humor and humble, abject embarrassment.
Next Cooper disarmed the security system of yet another a friend’s house. How? We went to walk their dog. He noted the code and where they hid their keys and decided to go back in search of new pajamas. My friend walked in on him during his quest, which scared the crap out of her. He managed to get away with yoga pants.
Our next-door neighbor called the police one day after work when she thought her house had been broken into. “Strange,” she said. “Nothing was broken or disturbed, but my pajamas were missing.” I found her belongings under his dresser.
None of this was happening because my man cub had a sudden love of women’s pajamas. The culprit: puberty. Suddenly my sons penis was “really big” and ladies’ things “smelled good”, and were “soft” and made him, “feel funny.” Puberty was going to get my high functioning felon killed.
Coopers most recent jaunt brought him to Waldwick NJ-40 miles from our house. He caught the attention of an ice-cream shop owner who happens to be a Special Olympics coach. She engaged him in conversation, got our number, and kept him fed and occupied until we got there. Another guardian angel? More dumb luck? I didn’t question. Cooper came home safely and I can add that woman to a long list of living angels who have been mercifully kind.
All of this happened in the span of one month. During that time Cooper’s therapists, CMO and psychiatrist worked feverishly with us to help keep him safe. We have explained (over and over) that his new feelings were good and normal, but stealing and going into people’s homes is bad. He just doesn’t understand. It’s too far beyond his scope.
After a particularly bad rage episode I had police take him to the only hospital nearby with a child psychiatric ward- the one his Bi-polar sister spent time in last year “(more about that in chapter three).” They did a full evaluation and told me they “weren’t equipped to help him.” There are no hospital wards for kids with ASD that are “high functioning.” There’s that phrase again. High functioning. Meh.
We had to lock this kid down before he got hurt, so I reached out to a program called “Challenge.” in which Cooper was enrolled for a week last year. The fear at the time was that he would pick up a lot of undesirable behavior from the other kids who were less functional than Cooper. Instead we opted for in home therapies with Partnership for Children. And let me say it’s been great. They have helped lay a foundation for the future, but the game has changed suddenly and dramatically. I am trying to keep him alive in the now.
So here we are. Cooper will begin his new school soon. TCI (The Children’s Institute) is designed to help kids with special needs and from there each day he will go to Challenge, a partial hospitalization program with intensive cognitive and behavioral therapies. We have to to keep him continually monitored over the next two weeks until it all begins on 9/8.
Two weeks to watch and worry, pray, breathe and be grateful for all the support, understanding and seriously inexplicable luck that has kept our genuinely good kid safe. Meanwhile, we soldier forth waiting for the next great cognitive leap forward that may or may not come. But, thank god he’s high functioning. Smeh.