I confess. I’ve been holding back on my writing here in this medium. The worst thing you can do as a writer is caring what the perception will be if you write your truth. Okay, maybe not the worst. The worst is not writing at all, but it’s certainly not good to worry about the outcome or what goes on inside someone else's head when they are reading your words.
When writing you have to stay true to your purpose. Keep writing (every day the experts say). I write as often as I can. I write first and foremost for my sanity. I try to keep in mind exactly who I am writing for. I don’t mean the lurkers who are making their own assessments of what they think they are reading in-between the lines. The people I want to touch by my writing, my true audience, are mostly women like me. Women who are tired, who are struggling, who sometimes feel alone in a crowded room, or in a home full of responsibility, children, a husband and perhaps even parent they are caring for.
Some of us can't write our truth, we don't have the time or the energy. Many of us get enough judgment from our extended family, as it is because of our children's behavior and our family's ignorance about autism. Some of us may not see our reality reflected in society. There are a lot of women out there who project as if they have it all together, especially on social media. Look at my perfect life! Chile, please! I know you got lots of dirt hidden behind that smile.
The women I write for may not be able to express their feelings aloud but they are feeling all of the feelings, wanting to scream, curse, cry or laugh at themselves. Maybe you are doing all of these things but you still somehow feel alone. Perhaps you secretly feel like your feelings are wrong. Well, fuck that! You have a right to feel your truth. I'm just the silly girl, that actually writes mine on the internet.
The women I write for may not be able to express their feelings aloud but they are feeling all of the feelings, wanting to scream, curse, cry or laugh at themselves. Maybe you are doing all of these things but you still somehow feel alone. Perhaps you secretly feel like your feelings are wrong. Well, fuck that! You have a right to feel your truth. I'm just the silly girl, that actually writes mine on the internet.
Most of my writing has been about the boys. They are a major focal point and a big part of my purpose in life. However, I feel like I’m about to burst from all of the feelings that have been swimming around in my head and throughout my body over the past few weeks about myself. What about me? I have my own thoughts, feelings, yearnings. With Kendal gone and the house quieter, I have more time to think about myself. What do I want? How do I feel? I am tired of being the beck and call girl for these boys. They think I'm just sitting idle, waiting to do the next thing for them.
Kendal, my 22-year-old had the nerve to say one day while sitting on the couch in my bedroom, "Why are you writing and not paying attention to me? Your writing is just a hobby. It's not like you're getting paid or anything." Mother f*#%er what I decide to do with my time is MY choice and MY business! They think I owe them my undivided attention whenever they want it. Um! No. You're a grown-ass-man. That ship has sailed.
Kendal, my 22-year-old had the nerve to say one day while sitting on the couch in my bedroom, "Why are you writing and not paying attention to me? Your writing is just a hobby. It's not like you're getting paid or anything." Mother f*#%er what I decide to do with my time is MY choice and MY business! They think I owe them my undivided attention whenever they want it. Um! No. You're a grown-ass-man. That ship has sailed.
I can only tell my therapist so much in the less than one hour we have together each week. I feel like I should live with her part-time. I don’t see my friends often and somehow I stopped having telephone conversations after so many years of never having enough peace or quiet to talk on the phone. And if I did have time, I was usually all talked out from the incessant talking, arguing and debating from my children.
The family that I see more often than I would like does not understand my innermost thoughts and feelings, nor do they care to. They are all too busy with their own agenda. And more importantly, they are too busy with what they want and need from me.
My husband is a source of refuge for me. He is my rock. But of course, he is highly focused on his job, and he's a dude. We are very different in our thinking and mindset. He gets me more than most people, but he doesn't totally get me. He thinks I'm cooky. I am cooky but...whatever.
The family that I see more often than I would like does not understand my innermost thoughts and feelings, nor do they care to. They are all too busy with their own agenda. And more importantly, they are too busy with what they want and need from me.
My husband is a source of refuge for me. He is my rock. But of course, he is highly focused on his job, and he's a dude. We are very different in our thinking and mindset. He gets me more than most people, but he doesn't totally get me. He thinks I'm cooky. I am cooky but...whatever.
I am going through some kind of change-of-life, midlife, soon to be empty nest, but not-soon-enough-thing. I’m probably going through some kind of peri-menopausal, hormonal mumbo-jumbo as well. I am somewhere in the mix of letting go of my supposed-to-be young-adult children. Yet, because of their autism, they still want me to do much more for them than I want to do.
I read a quote the other day that said, “I never fit inside a box; no matter how big it is.” I was like damn, that’s it. I am inside of a box that I don’t fit in anymore, that is if I ever did. I allowed myself to be put into this box. I’ve been in it a long time. Parts of this box are cozy, comfortable and familiar. Why leave? But another part of me is dying to get out. Only, a couple of problems…
- I don’t know where exactly to begin.
- I still have obligations inside the box, and those shackles hold me back from my next destination.
What is that syndrome called when you start getting comfortable with being held captive? Stockholm Syndrome —It usually happens when your capturer has agreed to let you live instead of killing you. You start to appreciate and sympathize with them. You don't even try to escape anymore. Well, my capturers have not threatened to kill me, not intentionally anyway, but they nearly have.
My current situation of being everyone’s everything, having little left over for my own personal happiness and fulfillment, as much as I may hate it, it is familiar. It’s what I know. It's who I've been. It’s what I’ve done for a long time. I am used to being the on-call therapist, fire- extinguisher, problem solver.
Leaving this uncomfortable comfort-zone and moving forward into the next phase of life is scary. What if I'm not good at anything else? What if most of my brain cells have already died? For a person with anxiety, it can feel overwhelming —insurmountable.
Leaving this uncomfortable comfort-zone and moving forward into the next phase of life is scary. What if I'm not good at anything else? What if most of my brain cells have already died? For a person with anxiety, it can feel overwhelming —insurmountable.
Being a wife, mother, caregiver, and autism advocate is a part of my destiny. However life has been whispering for a while now, there is something more for me to do. Part of that is really living for myself and enjoying life, doing things that I want to do on a more regular basis. The longer I sit inside of this box, this house, my life in Texas, putting MY life behind everyone else's, the more stir crazy I will be.
I will have no one else to blame except for myself.
Who holds the biggest stake in my life? I do. Change is therefore up to me.
I will have no one else to blame except for myself.
Who holds the biggest stake in my life? I do. Change is therefore up to me.
I went through a pretty huge summer depression. Now I’m going through a too many cloudy, cold, gray days, winter sadness. I take medication for anxiety and depression, but medication only does so much. There is still enough sadness that lingers, which tells me there is more I need to do improve my own mental health.
There are changes that I need to make. The underlying issues of being unfulfilled, wanting more, wanting an escape from this box will keep nudging me until I do something different. It’s hideous to believe that life will improve if I keep doing the same thing.
There are changes that I need to make. The underlying issues of being unfulfilled, wanting more, wanting an escape from this box will keep nudging me until I do something different. It’s hideous to believe that life will improve if I keep doing the same thing.
One of those things is as simple as regular self-care:
- Make myself leave the house even on those cloudy, gray days to go for a walk or to yoga. I need regular exercise
- Make my OWN doctor's appointments. Right now I am overdue for my annual exam. My excuse? My doctor moved to California over a year ago. I should have gone with her.
- Indulge in things that I enjoy more regularly -like painting, visiting with friends, being more social and traveling.
- Figure out my true purpose. Who do I want to help in the next phase of my life?
I know I’m supposed to put myself on the list first. I’ll do it for a while and then shit will hit the fan with one of the boys and I get off track. I am so used to life coming at me hard from different directions. I have forgotten how to take care of myself.
A few years ago I went to hear Oprah speak at a women’s empowerment event. I remember her saying "When there is something that you need to change in your life, the whispers come at you first. Listen to the whispers. If you don’t do anything about it, they get louder like a little thump on the head or a pebble. If you still don’t listen, it gets even louder until it’s like a brick upside your head, which is a crisis. If you still are not listening, the brick becomes a disaster."
I haven’t been paying attention. I’ve been ignoring the whispers. Sometimes I listen and try to find a way to pacify them for a while. It’s like putting on a band-aid when I need stitches.
I have loved taking care of my children. Technically, one of them is still somewhat of a child. He is eighteen, but in many ways, he is actually a few years younger. He has always been the most independent one. So for him to suddenly start walking backward has caught me off guard. I was not expecting this. Part of me may even be feeling a little resentful that he still needs me so much. He yanks my chain. He manipulates me and I let him. He pulls me into areas of his life, where I have no business. He pulls me in and then rejects me in the next moment. I know, I have to draw the line in permanent marker so that he can’t come back and erase it. I had to do the same with his brother and as a result, we have progress.
The whispers have turned into pebbles, thumps upside the head. The next thing will be the bricks and I really don’t like pain. So I better start listening.
I hope that you, my tribe, will learn to make self-care a priority. Pay attention to the whispers that are telling you it’s time for you to do something different. No one cares about your happiness and fulfillment as much as you do.
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.
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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 · 112 weeks ago