We are lying in bed on Tuesday morning.
Me -"What would you like to do for your birthday?"
Hubby -"I want to see "Wonder Woman,"
Me -"You're looking at her. Lucky you, you're married to her."
A quick, witty response is my automatic mode of communication. I get it from my daddy, Ward Hollywood Wesley. In our house, it is referred to as Wesley humor and it is not meant as a compliment. Personally, I think it's so much better than biting someone's head off, although, I am known to do that too on occasion. Luckily for my family, I chose humor more often than I choose violence and yet, they still don't appreciate it.
I referred to myself as Wonder Woman in jest. It just kind of danced out of my mouth as the perfect response.
I've had friends and people who read this blog who actually see me as this superhero kind of mom.
"You are such an awesome mom. I admire your strength," they say.
I'm all like, Who are they talking about?
I feel like a fake and a fraud --so weak and beaten down --like I'm barely holding on. Most days I'm inches from running away and changing my name because I just can't do this anymore. And yet somehow, I'm still here trying to survive each day.
We were supposed to see "Wonder Woman" over the weekend. We didn't make it because Saturday morning I got one of those phone calls. You know one of those heart-stopping, double palpitation -calls, where the world is turned upside down in a moment's time.
Even when things seem to be moving along --progress being made every single day. You can still get one of those calls. As a mother of African-American sons who have autism and mood dysregulation, which clouds their thinking and judgment at times, I am always just a little on edge, waiting for that shoe to drop.
My boys live in a mostly white, somewhat alien world filled with all kinds of landmines that can easily make their path more dangerous. I never know when everything could suddenly go wrong. Have you seen the news lately? Are you aware of how high racial tensions are in the United States of America right now? And we live in Texas...very white, primarily Republican, Texas.
Things go wrong every day. So many small things that happen become heightened by their anxiety. They worry constantly. They worry me constantly. Stress on high is the norm around here. Their anxiety is my anxiety.
After this particular call, I jump into action, sewing open wounds, putting on anesthetic and Band-Aids to stop the bleeding. I jump to help minimize and problem solve however temporarily, until the next time they fall...backward, onto a bed of nails.
The boys are adults now. Means nothing --besides parenting harder because they think they know everything, but they are so clueless when it comes to many things. There are still so many intricacies, nuances, and things about this adult world that they have yet to learn.
Yet, the world sees them as adults who must play by the same rules that everyone else does, even though their autism is an obstacle that makes the road more difficult to navigate.
We are parents who live by example. We consider ourselves to be upstanding citizens of our community. We've been married twenty-three years. We are hanging in there ...together...by a string. Dad is working incredibly hard to provide. I put every ounce of my energy into advocating for them and making sure their needs are met, giving up all kinds of pieces of myself in the process. We give them every ounce of support and opportunity that we can muster to give and still ...they fall.
And when they fall ...it still knocks the wind out of me. Yet, there is no time for attending to my own wounds or catching my breath. I immediately move into action --problem-solving, advocating, teaching the additional lesson we've been dealt for the moment.
After the marathon of action to stop the bleeding, there was no energy for going to see a movie. Instead, I tried to catch my own breath from the gut punch that had been thrown. Dad can compartmentalize this stuff much better than I can. I sit in a stupor for a few days wondering what the hell just happened and what the hell is going to happen next? Will I ever be able to just fucking exhale and live like a normal human being?
But on this Tuesday, it is my husband's birthday. I have to pull it together. I have to put away the mom-to-the- rescue-advocate face and put on the loving wife face. The husband has been neglected over the past months of exacerbated stress with the one who just about killed me getting through his senior year. If I don't water the garden, our marriage, the relationship dies. It has been on life support for weeks now.
So, I go with him to see "Wonder Woman" for his birthday. I am not feeling witty or the least bit excited by the action of the film. I can't focus. Everything that happens in the movie somehow reminds me of the fight that I've been fighting for so many years. I am exhausted.
My mind drifts. In one scene, Wonder Woman takes a lick from an ice-cream cone for the first time and I think of my boy --the first time I watched the joy on his face as he licked an ice cream cone. I miss those days of innocence. I ache for them.
I wonder if I will ever be able to truly relax again in this lifetime?
How many more lessons of life do we have to support these boys through? Right now, the list feels infinite.
I made it through the movie and dinner. Afterwards we walk the promenade of a popular dining and shopping area. The summer wind is blowing in the breeze from the south.
In this moment, I am grateful that I have this man by my side. Thanks to him and champagne cocktails, I exhale.
Me -"What would you like to do for your birthday?"
Hubby -"I want to see "Wonder Woman,"
Me -"You're looking at her. Lucky you, you're married to her."
A quick, witty response is my automatic mode of communication. I get it from my daddy, Ward Hollywood Wesley. In our house, it is referred to as Wesley humor and it is not meant as a compliment. Personally, I think it's so much better than biting someone's head off, although, I am known to do that too on occasion. Luckily for my family, I chose humor more often than I choose violence and yet, they still don't appreciate it.
I referred to myself as Wonder Woman in jest. It just kind of danced out of my mouth as the perfect response.
I've had friends and people who read this blog who actually see me as this superhero kind of mom.
"You are such an awesome mom. I admire your strength," they say.
I'm all like, Who are they talking about?
I feel like a fake and a fraud --so weak and beaten down --like I'm barely holding on. Most days I'm inches from running away and changing my name because I just can't do this anymore. And yet somehow, I'm still here trying to survive each day.
We were supposed to see "Wonder Woman" over the weekend. We didn't make it because Saturday morning I got one of those phone calls. You know one of those heart-stopping, double palpitation -calls, where the world is turned upside down in a moment's time.
Even when things seem to be moving along --progress being made every single day. You can still get one of those calls. As a mother of African-American sons who have autism and mood dysregulation, which clouds their thinking and judgment at times, I am always just a little on edge, waiting for that shoe to drop.
My boys live in a mostly white, somewhat alien world filled with all kinds of landmines that can easily make their path more dangerous. I never know when everything could suddenly go wrong. Have you seen the news lately? Are you aware of how high racial tensions are in the United States of America right now? And we live in Texas...very white, primarily Republican, Texas.
Things go wrong every day. So many small things that happen become heightened by their anxiety. They worry constantly. They worry me constantly. Stress on high is the norm around here. Their anxiety is my anxiety.
After this particular call, I jump into action, sewing open wounds, putting on anesthetic and Band-Aids to stop the bleeding. I jump to help minimize and problem solve however temporarily, until the next time they fall...backward, onto a bed of nails.
The boys are adults now. Means nothing --besides parenting harder because they think they know everything, but they are so clueless when it comes to many things. There are still so many intricacies, nuances, and things about this adult world that they have yet to learn.
Yet, the world sees them as adults who must play by the same rules that everyone else does, even though their autism is an obstacle that makes the road more difficult to navigate.
We are parents who live by example. We consider ourselves to be upstanding citizens of our community. We've been married twenty-three years. We are hanging in there ...together...by a string. Dad is working incredibly hard to provide. I put every ounce of my energy into advocating for them and making sure their needs are met, giving up all kinds of pieces of myself in the process. We give them every ounce of support and opportunity that we can muster to give and still ...they fall.
And when they fall ...it still knocks the wind out of me. Yet, there is no time for attending to my own wounds or catching my breath. I immediately move into action --problem-solving, advocating, teaching the additional lesson we've been dealt for the moment.
After the marathon of action to stop the bleeding, there was no energy for going to see a movie. Instead, I tried to catch my own breath from the gut punch that had been thrown. Dad can compartmentalize this stuff much better than I can. I sit in a stupor for a few days wondering what the hell just happened and what the hell is going to happen next? Will I ever be able to just fucking exhale and live like a normal human being?
But on this Tuesday, it is my husband's birthday. I have to pull it together. I have to put away the mom-to-the- rescue-advocate face and put on the loving wife face. The husband has been neglected over the past months of exacerbated stress with the one who just about killed me getting through his senior year. If I don't water the garden, our marriage, the relationship dies. It has been on life support for weeks now.
My mind drifts. In one scene, Wonder Woman takes a lick from an ice-cream cone for the first time and I think of my boy --the first time I watched the joy on his face as he licked an ice cream cone. I miss those days of innocence. I ache for them.
I wonder if I will ever be able to truly relax again in this lifetime?
How many more lessons of life do we have to support these boys through? Right now, the list feels infinite.
I made it through the movie and dinner. Afterwards we walk the promenade of a popular dining and shopping area. The summer wind is blowing in the breeze from the south.
In this moment, I am grateful that I have this man by my side. Thanks to him and champagne cocktails, I exhale.
Logging you in...
Adelaide Dupont · 285 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 · 209 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.
diyalabs6192603 11p · 192 weeks ago
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Spoil your cat · 122 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 · 112 weeks ago