Life in My Son’s World of Autism
I live in two different worlds. One, let’s call this my “home planet,” is the neurotypical, familiar, and comfortable world in which I was raised and conditioned. The other is “planet Ari,” which is the world of autism.
I entered this world as an alien to autism, and have slowly been adapting to the strange yet magical world over the past six years; learning the basics of language, and trying to understand how and why it’s sole inhabitant functions the way he does. I live in two different worlds because my son, six-year-old Ari Raphael Vincent Joyce, is a low functioning autistic with sensory processing disorder. And he is nonverbal. Allow me to digress for a moment and elaborate and clarify what, specifically, “nonverbal Ari” means. He has words. A mountain of words and sounds in his cache of English vocabulary.
He can articulate over a hundred words, but primarily his oral expression of such words is fashioned by a condition called “echolalia/delayed echolalia” (Ari exercises both kinds). For those unaware of what echolalia means, it means essentially what the word sounds like; echoing. He scripts things he hears, particularly lyrics from his favorite songs, and so when he talks, 99 percent of the time it’s either him parroting what he just heard, or something he heard in the past, even distant past, and applying it to whatever situation he is presently in.
For instance, he dumped a cup of water on the floor the other day, and I said, “Oh no!” and scrambled to get a towel. My reaction fueled his reaction and response by him saying “Ew, yuck, I mean my goodness!” which sounds like a totally independent and appropriate response to the situation, right? If you are a parent of toddlers, you have probably seen the movie Ice Age more times than you would like to admit, often on repeat. Who remembers the diaper scene with Sid? If you can recall, you will realize what Ari said is exactly what Sid says when confronted with a messy situation.
I’m not sure if Ari is capable of having his own thoughts or opinions with real-time experiences. But I do find it fascinating and commendable that he applies scripted dialogue to situations in an attempt to fluidly communicate with me and expressing himself the only way he seems to know how to at this point in his life.
Ari has several ways of communicating; echolalia, picture exchange communication system (PECS), body language, and some American sign language (ASL). At home, Ari chooses not to use his PECS book or sign language so much as doing what’s most familiar and basic and our first bonding method of communication which is to take my hand, lead me to where or what he desires, and thrust my hand in a vague direction of what he wants. This generally concerns food items.
I know my son, quite well, I like to think, and part of living in two different worlds means learning his language and knowing his likes. Usually, after some trial and error of unpacking everything from my cupboards and presenting it to him, while also labeling it so he knows what it is, we figure out what he wants. I don’t always have what he wants, though. And that’s when I truly feel like an alien in his world, and probably vice versa.
He cannot just say, “Mom, we are out of my favorite cookie!,” instead it’s just grunts of frustration, and I have to show him everything I have in my cupboards to try to make him understand I don’t have what he wants—or to try to make him understand that I simply do not understand.
This is a daily ritual we go through. Because Ari has sensory processing disorder, his tastes are also quite limited. He is opposed to certain textures, colors, and smells. He has about 15 food items I can think of that he rotates through. I don’t always know what he’s going to want that day; sometimes he goes for days eating the same food, and then one day he wants something different, and the guessing game resumes.
It makes shopping challenging, because as parent’s we are always being told how important a variety of food is in our children’s diets, to strive to introduce new foods often, and offering your child junk food makes you a questionable parent.
Having these stigmas attached to an already exhausting and overwhelming situation can be discouraging, but I try to remember that everyone is different and you cannot possibly apply a cookie cutter approach to a child that doesn’t fit that mold to begin with. My son is healthy, happy, has more energy than the Energizer Bunny, and does not seem to suffer from not eating a well-rounded diet.
As a parent, again, it’s hard to not feel like a failure, but I aim to be patient and steadily do try to introduce new foods as he grows. The main thing to remember is that failing to get your child to eat something new doesn’t make you a failure; ultimately, it just means that perhaps your child is just not ready.
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I live in two different worlds because I have a child who lives a life where days are nights and nights are days, the majority of the time. We are facing eight months of sleep regression, currently. This means on average, Ari stays up as late as 4 a.m. or 5 a.m., sometimes later if he napped at some point. He is in kindergarten, and his teacher and I do sleep data to try to determine how much sleep he is getting. He sometimes sleeps through the school day, unable to be roused, due to being up all night.
His teacher and I agree that it would not be right to try to sleep deprive him by demanding he wakes up. I have tried melatonin. It has an adverse effect on Ari. It makes him hyper, not drowsy. I have tried waking him early, he ends up napping late in the day, and then I am 100 percent sleep deprived, having lost any chance to rest since my neurotypical brain finds it difficult to shut down when there is sunlight out. I average about three hours a night, if he naps, he cannot be left unsupervised in most settings, even in the home, or I can sleep at 7 a.m., after he boards the school bus.
The problem is that as a single parent, I can’t sleep all day. I have to grocery shop; I have to clean all the food crumbled on the floor since Ari cannot sit still at a table for long and eating is a mobile and messy, messy process. He scales my furniture and jumps on everything and body slams into things because he craves that proprioceptive input. My apartment quickly looks like the aftermath of a hungry and chaotic mini tornado.
While most people are sleeping, I’m usually scrubbing mashed up food out of my carpet or sweeping up turned over bowls of snacks since Ari is anti plate/bowl/utensils and prefers to just dump his food in a pile and eat it that way. Sigh. Or I might find my eyes involuntarily closing because let’s face it, I’m not in the prime of my youth anymore and I get tired more easily these days, and suddenly my eyes snap open because my ears are registering a familiar sound that shouldn’t be happening at that time. Running faucet. Where is Ari? The bathroom light is on and low and behold he is sitting in the sink, and my floor is flooded with two inches of water.
It’s 2 a.m., better start some laundry, since I’ve now used every piece of linen to sop up the water. Or I might hear a bunch of little things cascading and crashing to the floor. The contents of my cupboards, bags of food spilled on the floor. Holy molè. There is nothing that compares to having to sleep deprive yourself every night and keep your brain in high alert mode to keep your child safe and to preserve your rental from complete annihilation.
I can’t even properly describe the feeling but every morning, or afternoon if I’m lucky enough to be able to sleep that day; whenever I get up, I’m shell shocked. Yet I love this world because it’s Ari’s world. These undesirable behaviors are behaviors Ari would not exhibit when he was younger, but they are expressions of curiosity, of learning, of finding his place and relation to his surroundings; he has now become aware he is a part of MY world, too. And that is exciting to me.
That is progress, for my son, who used to never look me in the eye or engage in any type of play with me or his peers, who was content to just live in his head, essentially. Just on planet Ari. I live in two different worlds, and it’s been an emotional journey watching my son blast out of his atmosphere and begin to explore.
We may still be alien to each other in many ways, but I strongly believe in encouragement to explore what must be a strange world to him in the ways that he seems to learn best, and in a safe manner, even if it cause some premature gray hairs along the way, someday perhaps he will feel like he’s home in my world, and not just a visitor from another planet.
This article was featured in Issue 92 – Developing Social Skills for Life