I fell apart the other day. If I didn’t write it down though, no one would know. And even as I write it down, the people who are supposed to be closest to me, won’t know because they don’t read this.
I was getting ready to follow the ritual of sprinkling my son’s medication in some applesauce or peaches, get him some milk, and help him with some worksheets to keep up his academic skills. My husband was golfing with a longtime friend. It was past 7:00 p.m. and I was sure my husband would know better than to bring that friend in for a drink after their game, on a weeknight, when my house was still in shambles from the recent birthday party.
I was wrong. My husband came home, and said, “Hey, come out and say hi to ‘John’.” Dreaded words. I was tired. I knew this would disrupt my son’s routine. I don’t really know John and I was in no mood to socialize. But what could I do?
Tootles ran out ahead with, naturally, a toy ambulance, police car, fire truck, whatever, with a siren. John asked if Tootles remembered him. Of course, John was ignored verbally but it was clear Tootles was out to make a show of it. I entered the room, said hello and listened to a story about how some woman at the course was carted off in an ambulance.
John is in his 50s. He has a grown daughter with a 3 year old. He made a comment about how many toys my son had. He asked me if I felt that I had a problem. This is so deeply rooted in our autism, that I could not begin to respond. Tootles knows every toy he has ever been given, no matter where it’s come from. If I try to discard something, it becomes the object of obsession. To this day, he still asks for some things I got rid of when he was 2.
Truthfully, in the living room are toys from friends at his birthday party, toys he drug out there, and ones from us for his birthday, one of which was “some assembly required” that Daddy decided to leave lying on the floor unassembled after remarking, “You’ll have to get your mom to build this for you,” a standard mantra around our house.
I told John not to judge me. He shook his head. He said, “Did you ever think your kid might be overstimulated by all this stuff? I would be,” implying my son’s autism was the result of his toys. I was embarrassed by the house and frustrated by his remarks, but that was just the beginning.
John said he felt his daughter’s child, might have autism. As he said this, Tootles took out his loudest, most obnoxious toy and started making loud noise. He was told three times to stop. Each time, he continued. I put him in a time out in a chair facing the wall in another room.
During it, I could hear my husband try to give John advice. Only the advice he was giving was not right. He told John to send the 3 year old to the MIND Institute. No one just goes to the MIND Institute. Had he forgotten how our pediatrician could not even refer us there? Our regional center, an arm of the State of California had to come out, do an assessment and make a referral after I jumped through hoops to get the assessment.
As I waited through the time out, I heard my husband dispensing other nuggets that made me realize how little he knows about the procedures to get help, and what to look for in signs of ASD. My husband loves our son. He’s a good dad. But honestly, he has very little clue what autism is, what I do for our child or how it gets done.
When the time out was over, I clarified with Tootles why he received it and not to do it again. He did it again times three. I took away the toy. He didn’t care. He found something else to make noise. Meanwhile, I was trying to give John procedural advice and signs to look for. John said he thought Down’s Syndrome was autism. He finished the conversation by stating that the 3 year old was very social and he didn’t think she had “autism” (whatever in his mind that was).
Tootles had been intentionally and repeatedly defiant toward me in front of, basically, a stranger, in my home. He disobeyed, managed to find an unopened bottle of Aquasand and dump it on the kitchen table and floor, and refused to eat dinner.
John was not rude but definitely ignorant and uninterested. My husband had shown me how little he knows about what I do. I spend the next hour and a half cleaning up some of the mess in the living room and organizing my son’s toys.
I chewed out my son for his repeated defiance and attention-seeking behavior (I’m not perfect). In reward for that, my husband told me not to yell at our son, gave him a kiss, and left to watch a movie upstairs. I did not respond. I gave our son his applesauce, and put him to bed. I felt all the emotion drain from my body. I became an automaton going through the motions.
In the morning, I woke my son, told him I loved him and got him ready for school. I felt a disconnect. I dressed my son as he engaged in echolalia. I was listening. Instead of a happy little boy, all I heard was echolalia. He asked me to carry him. I did it without emotion. I drove him to school. I was quiet. He asked who was standing by a car on the side of the freeway. I said, “I don’t know” instead of, for the 500th time, telling him how I don’t know the names of everyone in the world, and trying to explain the concept of strangers.
But oddly, I feel like a stranger inside my own body, in my life. As I hold it all in, day after day, and try here, to paint a pretty picture, I feel like I finally rubbed a spot, and the rust showed through.
I feel isolated, alone. The words simply cannot convey what is missing right now. I hope when I look around, I’ll find my heart. Maybe it’s inside a tiny toy ambulance.