Autism is real. It ebbs and flows. It may evolve, but it doesn’t go away no matter the age or level of maturity. Thankfully, we continue to make progress. But then one-day autism shows up and slaps you in the face as if to say, I'm still here bitches!
Kendal was home Friday morning for a few hours before work. Autism was on and poppin’ —like, Hello! Don't forget about me! He was home because his phone was broken and of course, he wanted it fixed or replaced like, NOW! Dad and I are apparently, the fixers of all things.
His anxiety is also high because there are some big changes coming his way. His transition program is ending soon and there is a huge possibility that he will be moving out of the group home. I am hesitant to talk about this (in detail) until it actually happens. There are countless loose ends to be tied up before it becomes a reality. I am excited, nervous and apprehensive, all at once.
His fixation right now is his future. He’s thinking big picture. Where will I end up in five to ten years? Of course, the possibilities are endless. His brain is working overtime thinking about each and every possible “what if?”
Now as fixations go, this is a pretty good one to have. At least it’s not girls or obsessing about making his body even more perfect than it is.
However, by the time he left my house on Friday afternoon, I couldn’t drive him to work. The constant talking, the repeating, the demands ...my nerves were shot. I literally could not think straight. I was willing to pay for an Uber rather than listen to the same dialog within the confines of my car.
Since his phone is on its last leg and it's difficult to use, when he got off work that evening, he called to ask me to either pick him up or help him coordinate an Uber ride. He wanted to go to a social event with his church. I had had enough of him for the day so again, I opt for Uber.
He calls me from the business phone at work to say he’s ready. I call the Uber. The Uber is waiting for him when he gets off. But somehow, he doesn't get outside in time and the driver cancels the ride. After a couple of minutes, they think you’re a no-show, so they charge you a five-dollar cancellation fee and they leave.
I'm watching this whole transaction happen on my phone, but I can't get in touch with him because again, dead phone.
He gets outside of work and can’t find the Uber. Instead of going back inside of work to call me again, he wanders down the parking lot and ends up at Arby's. Not really knowing what to do finally, he asks a stranger can he please call me from her phone. She calls me for him. “Mam, I have your son Kendal here and he’s lost.” This is nearly 30 minutes later. I’m thinking, lost? How did he get lost?" The boy usually Ubers all over town. The difference here is that he doesn't have a working phone.
The whole time I’m sitting here knowing that the Uber has taken off. I’m wondering what happened to him? I’m thinking, maybe he caught a ride with someone from work, but he can’t call me because the phone is dead. NO. That was not the case. He was wandering around for thirty minutes trying to figure out what to do. Autism.
Long story short, I end up having to stop what I’m doing (eating dinner and about to pull out my paints and canvas) to go pick him up because he’s pretty much panicking. By the time I get there, he is livid! It’s all my fault, of course! He’s actually just totally frustrated with the situation and anxious to get to his event, but there must be someone to blame. As always, I get that prize. I'm thinking, I should be the one who is yelling. I should be at home drinking wine!
I get him to calm down. I tell him my car will not move if there is yelling inside of it --a lesson I've learned over the years. So he gives me the address to the event. Off we go. I'm driving blindly. Well, I have the navigation, but I really have no idea where I'm going, which makes me nervous.
Once we make the turn off the main road, I can barely see. It’s a dark, winding canyon, and I mean pitch black. The navigation lady is talking. Kendal is talking. I’m like, “Dude! do you want me to find this place or not? Shut up!” I’m highly frustrated at this point. Remember, I should be at home drinking wine and painting. Instead, I’m trying to hear the navigation lady and watch out for wild deer who are probably roaming the hills.
We finally arrive at the gated community and he says, “There’s a code. Do you have the code?”
“How in the hell would I have the code!? I don’t know these people. Don’t you have the code?”
“No," he says and stares at me blankly, like --now what are we going to do?
I’m thinking, it’s a really good thing that he’s not in an Uber. Imagine, he gets the driver all the way up into this community and he has no access to the gate. He would be angry and disappointed. They would probably have to drive away and he would not make it to the event. The Uber driver would probably think he's nuts.
So there we sit at the gate. Hmm. What to do? A car pulls behind me. I make a quick u-turn to move out of the way. When I see the driver going in, I floor the gas and follow them before the gate closes. I may or may not have burned rubber.
Kendal’s in the back seat. “What are you doing Mom? Are we going to get arrested? You just broke into this neighborhood,” he keeps asking over and over as I continue to try to listen to the navigation lady.
“No! We’re not going to get arrested! Now be quiet so I can find this damn place!” At least I hope we're not going to get arrested. I start looking around and realize this neighborhood is exclusive, fancy, obviously designed for the very wealthy. The houses are huge, all stucco, with Spanish tile roofs. The streets have these little turnabouts like they have in France. There are even cobblestones in some parts of the street. They have their own special street lights, which are so dim that I can hardly see where I'm going. We are a bit out of place. I just burned rubber and snuck in here. He has an address but I doubt he knows the name of the homeowner. All he knows for sure is that “someone from church” is hosting the event.
If my nerves had not been so fried, this would have been hilarious. Me driving in the dark, trying to find a house that I’ve never been to. The neighborhood is not well lit, at all. I can barely see the names of the streets. I can’t make out any addresses. It’s not your normal, every day, Austin subdivision.
In fact, I’m thinking —I had no idea this kind of affluence existed here in Austin. This sub-division is so exclusive, I bet there are no black people that live in here. Black people probably don’t even know this place exists. Hell! I didn’t know until tonight. They've been hiding an entire neighborhood up in these hills and poor people know nothing about. Are we going to get arrested? Did I damage any property when I burned rubber on that U-turn?
Finally, we find the house, and not because the address was obvious, but because Kendal kind of recognized the house. Turns out he had been here once before. Wow! Really? Thanks for telling me. You’ve been here before, but you didn’t think to write down the code to get into the gate? Yeah. Autism.
He gets out of the car. I am praying that this is actually the house and that he’s not walking into a total stranger’s home. I could see the headline, “Black man, carrying a large gym-bag is shot entering white folks home in exclusive neighborhood in Austin.”
Once he gets inside, I take a deep breath and exhale. Then I notice that he left their front gate open because of course, and there is a little dog roaming the front yard. I get out of my car and closed the gate. Yeah. Autism.
As I’m driving home, I’m thinking to myself, how did I survive years of this and his behavior was even worse? In his teen years, there would have been no cooling down of the yelling when I was trying to drive. I would have had to pull-over and threaten to take him home.
He has matured a lot since then. However, autism and ADHD and are still real and I am a brain-fried survivor.
Me at the beach in California -my sacred place |
Adelaide Dupont · 284 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 243 weeks ago
Risa · 230 weeks ago
LAH · 221 weeks ago
Maira L. Coral · 216 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 208 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
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Spoil your cat · 121 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 111 weeks ago