Shortly after Alex’s diagnosis, we visited a family with an autistic child. Although I don’t remember much of what transpired during that visit, I do recall going home and thinking about the mother’s keys. The mother was a very negative, somber woman–I can’t remember much about why I thought this, but I do remember Alex recoiling from her when she tried to hold his hand, something I had never witnessed him do around family friends or his aides. I wondered what that meant. Maybe it was the combination of her personality and the lanyard around her neck with over a dozen keys that caused me to worry for my future. So many questions I wondered about but was too fearful to ask: Was I looking in a mirror? Seeing a glimpse of my future? Why a dozen keys? Was I going to be a jailer and not a mom?
An incident occurred around the time Alex was two and a half or three years old that was the beginning of changing the way we lived in our house. One afternoon as I walked into the kitchen, I noticed the refrigerator door hanging open. That was weird. I saw an empty egg carton on the floor, and broken eggshells everywhere! A dozen raw eggs lay cracked and oozing on the tiles. How did THIS happen!? Who would do this, and why? We were struggling financially–eggs were expensive–and this was precious food, now wasted on the floor! Immediately I knew our older children would never do this; only one culprit was possible and likely–Alex. Following several more “egg-cidents”, the locking up of the refrigerator began. At first, we closed the door with a bungee cord hooked from the back of the fridge, wrapping around to the door handle. Years later, when we purchased the kind of refrigerator that had the freezer on one side instead of above, we secured it with a chain and combination lock. When our youngest daughter, Lily, began having play dates at friends’ houses, she came home once and asked me why other people didn’t have locks on their refrigerators. (Some years later, she experienced a small benefit that resulted from this inconvenience–she was the only one in 8th grade gym class who could instantly open the combination lock on her locker!)
First, just the fridge was locked, and then, soon after, the cabinet containing the products Alex was most likely to go after: cereal, cookies, crackers, candy, fruit snacks. However, the rest of our cabinets and drawers contained many items of the things-to-keep-away-from-Alex variety: paper, writing utensils, knives and other sharp implements, scissors, spoons, and forks. All pens, pencils, crayons, chalk, and markers must be carefully guarded since he will write on walls, in books, on our mail, on siblings’ artwork. The spoons and forks he would bend back and forth until they were beheaded. As for the knives and scissors–once I caught him stealthily entering his room with a knife in hand. I exclaimed, “Whoa, what are you doing with that!?” Mainly a rhetorical question, since he is basically non-verbal, but the sight startled me. This time, however, I did get a response, which was, “Itchy, scratchy.” Aaah! What if it had been his throat that was feeling scratchy? I remember several times when he was small and I caught him inserting a butter knife into the VCR because one of his beloved Disney movies was stuck. Some time after moving to our second house, we eventually were able to remodel half of the downstairs and enclose the whole kitchen. It was great only unlocking one door–fewer locks to fiddle with.
If someone were to ask me, “What is the hardest part about having a son with autism?”, I’d answer: obviously the emotional part–not being able to speak to my child, understand him, and have him understand me. However, there is a physical toll as well: the endless washing and fixing and cleaning up messes and replacing items he’s destroyed; when he was small, following him and constantly monitoring where he was, needing to know every minute what he was doing; listening to him cry, seeing him lying in a little heap, sobbing inconsolably on the kitchen floor; trying to comfort him and attempting to figure out what he needed or wanted, and then always having to give up (I had no way of knowing what was wrong, so when he was crying uncontrollably on the floor, I’d step over him and keep walking. I know it sounds heartless, but we had to learn to block out things in order to cope).
I recently had a conversation with my oldest daughter about the beautiful flooring that she and her husband had just finished installing in their new home. She expressed feeling elated whenever she walked into that room, thinking, “Wow! Just look at this gorgeous floor!” We discussed what a joy it is completing a job like that, something that will last, that will stay that way for years. The dishes, the laundry, cooking and cleaning, so many things have to be done all over again tomorrow. (And the next day and the next day . . . ) But with the autism, we have pointless do-overs continuously. At least when you’re doing dishes and laundry, you know that you are helping your family stay healthy, happy, and comfortable. In our house on a daily basis, I found myself cleaning up messes Alex had made, and either fixing or throwing out items that he had destroyed. I have five non-autistic children so I realize messes and accidents are a part of childhood. With regular children, you have maybe one or two major clean-ups a week–breakage, spills, potty-training accidents. With Alex, this wasn’t weekly, it was daily, sometimes every other hour and is actually still the norm today, over two decades later. We never blame him; he can’t help it. I grew to appreciate this Chinese proverb: “Think of the glass as already broken.” Material possessions gradually became less and less important to our family.
So we went from locking up the fridge, the snack cabinet, and the storage closet to locking other rooms. Alex always craved deep pressure; it became particularly evident between the ages of six and ten. He’d go into his siblings’ rooms, get into their drawers (pun intended), and put on as many pairs of their sweatpants and pajama pants as he could find! We’d frequently see him go waddling down the hall, looking like Randy on Christmas Story in the getting-dressed-to-go-to-school scene! At first, I thought, “What in the world! Why is he doing this!?” Later we learned more about his various sensory needs. I’d sit him down and peel off the pants–I think once I counted 16 layers. Then I would wash all the pants and put them away, again. Thus began the children locking their bedroom doors. Although in his teens he finally stopped doing this, we all continued to lock our doors (and still do), obviously, to protect all other belongings–once he scribbled over, completely covering, one of Rose’s really nice portraits from her class, but, as I stated above, we all learned to think of the glass as already broken. My husband and I felt horrible whenever Alex destroyed a toy or other item or school papers or artwork of his siblings. We’d hear ourselves saying, “You shouldn’t have left it out”, realizing at the same moment a child should not have to be blamed for that. Lily would go to her friend’s house after school and they’d just drop their backpack by the door. She was flabbergasted! “Don’t you want to go lock that up in your room?” she’d question, wondering why they were so careless in leaving their belongings just lying out in the open.
Our family became hyper-vigilant because nothing was off limits in his mind–books, papers, pictures, mail. When Alex was younger he had not yet developed these certain habits, but these days he rips apart his clothing (including jeans, shirts, socks, jammies, and underwear), peels off wallpaper, pulls velcro off his shoes, and even tears apart his mattresses. Oh, I left out towels and shoes. Anything in our home is fair game. In our first home there was a small storage room off the kitchen. A high shelf went around three walls. For some reason unknown to me now, I had stacks and stacks of sweaters on those shelves, probably shirts and pants too, but the sweaters stick out in my mind. If we failed to lock the door (there was a padlock with a key) Alex would go in and pull all the sweaters into a giant heap on the floor. Whenever I noticed the door ajar, I would have a sinking feeling in my stomach and think, “Oh no, not again.” I’d push back the door and the sight of that huge pile of sweaters would bring me to tears. I knew I would have to go in and fold and stack those sweaters for the thousandth time. (Why I didn’t just put them in boxes, I don’t recall) I remember feeling the injustice of it, that it wasn’t right; it wasn’t “fair”. I was so tired all the time and had so many other things I needed to be doing–and here I was kneeling on the floor re-re-re-folding sweaters.
Pens, knives, electrical outlets–there were dangers everywhere for Alex and it was, and still is, our responsibility to protect him. It is always on our minds–where is he? What’s he doing? Did I forget to lock the refrigerator? Did I leave my purse on the sofa? Did the kids leave the markers out where Alex can get them? Did I leave anything important out where he could reach it? There was never any rest; not a moment of relaxation.
This became our normal routine, but it is far from what one might consider normal. We just got so used to it all we no longer think about how strange it is. I imagine it would seem unusual, cumbersome, and restricting to others. To me, unlocking a door to enter a room is no different than turning a knob and opening the door.