Early morning, before the crack of dawn...
I think I hear "Mom!" being screamed from another room.
Afterward, I lay in bed awake —perturbed that my sleep has been interrupted.
My mind starts rambling...
Afterward, I lay in bed awake —perturbed that my sleep has been interrupted.
My mind starts rambling...
How am I going to do this?
We can’t go on like this.
I am by definition a nurturer, a fixer, an easer of pain for those I love especially, my children. This is who I have become in the past 20 years and probably, some years before that with my siblings and even my parents. Even though they are all older, I have always been the one that they count on to help facilitate communication.
I keep the family together when they start to lose touch with one another.
I keep the family together when they start to lose touch with one another.
With my immediate family, my husband, children and my mother, my role is the same —the facilitator, referee, coordinator and problem solver.
But no one can be everything to everyone.
But no one can be everything to everyone.
This is not a sustainable life.
When it comes to my children, intellectually, I know that I am operating out of fear, anxiety and quite frankly, intimidation.
When it comes to my children, intellectually, I know that I am operating out of fear, anxiety and quite frankly, intimidation.
I know that what I’m doing, is trying to cushion Red's fall.
I’m trying to silence the explosion.
The bough is hanging by a thin thread.
It’s about to break.
This is not a sustainable life.
This is not a sustainable life.
My husband and I are stressed beyond recognition.
He walked into his doctor's office the other day. She said, "What the hell happened to you?"
We have the same doctor.
I've probably been subconsciously avoiding her for the past few months because I know she will say the same thing to me.
He walked into his doctor's office the other day. She said, "What the hell happened to you?"
We have the same doctor.
I've probably been subconsciously avoiding her for the past few months because I know she will say the same thing to me.
All of this haunts me.
This is not a sustainable life.
I've said this before. I know, I’m like the mother bird who wants to push my little fledgling out of the nest.
“You can fly! I know you can do it!”
But as soon as he starts plummeting towards the earth, I fly in to scoop him up, never giving him the chance to figure it out for himself.
This is not a sustainable life.
This is not a sustainable life.
He’s an adult.
He’s twice my size.
I literally can not cushion his fall.
He will smash me!
In an attempt to save him, I will kill myself!
I will disappear.
As it is, there are only traces of my former self.
I have allowed one of my children to absorb about sixty to seventy percent of my energy.
That leaves about thirty to forty percent for everything and everyone else, including myself.
This is not a sustainable life.
I can not breathe.
I can not exhale.
Most days I can feel the vibration of my heart beating, like a bass drum.
I attempt deep breaths, trying to slow my heart rate. The fix is only momentary.
I’m living in PTSD mode.
Always preparing for the next explosion.
This is not a sustainable life.
I have to think about the rest of my family.
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I would like to give photo credit however, this was sent to me by a friend. Arthur Unknown |
I must think of our health and safety.
I keep things moving along mostly on automatic pilot.
I keep things moving along mostly on automatic pilot.
I try to keep my sense of humor.
I attempt to find some semblance of enjoyment in my life.
I color in one of my adult coloring books while feeling a mixture of guilt and self-loathing because I'm not writing.
The truth is most of the time, I can't string two thoughts together, much less a full story.
This is not a sustainable life.
I color in one of my adult coloring books while feeling a mixture of guilt and self-loathing because I'm not writing.
The truth is most of the time, I can't string two thoughts together, much less a full story.
This is not a sustainable life.
![]() |
Colored by me! To Order Your own click the ad below |
In quiet moments, the enormity of it all overwhelms me.
It’s crushing me.
I’m drowning.
I’m drowning.
I remind myself that I've done everything I know how to do.
I have pulled out every big gun in my arsenal.
I have pulled out every big gun in my arsenal.
I’ve tried.
I’m not a doctor, a pharmacist or a therapist.
I’m not a doctor, a pharmacist or a therapist.
I have played all of these roles in real life, for a long time.
This is not a sustainable life.
He fights everything and everyone who tries to help him.
He fights everything and everyone who tries to help him.
I realize that his behaviors are mostly based in fear, anxiety and his autistic, different way of thinking.
That doesn’t change what it’s doing to the rest of us, physically and emotionally.
This is not a sustainable life.
This is not a sustainable life.
In a phone call the other day I told him, “It's time for you to change your own life. I can not make it happen for you anymore than I could make you lose weight.
(Recently, he made that decision for himself and he’s lost a considerable amount.)
(Recently, he made that decision for himself and he’s lost a considerable amount.)
I told him, “When you finally decided to do it, YOU made it happen. I have faith that you will be able to do that with the rest of your life.”
Every experience in life changes who you are.
I’m going to have to believe that in the end, all of us will be changed for the better.
All of us will be stronger.
In the end this will be a long, incredibly painful, success story, with a few cautionary tales weaved in between.
It is not a story that I can contrive or create like the novelist I once wanted to be.
This story has to play itself out, one long, excruciating chapter at a time.
I have to let go and let God write this script.
All this time, I’ve been thinking God needed my help.
He doesn’t.
He’s in charge.
Until this story reaches it's climax, God will sustain me.
Click here to order your own adult coloring book. Here are two of my favorites:
All this time, I’ve been thinking God needed my help.
He doesn’t.
He’s in charge.
Until this story reaches it's climax, God will sustain me.
Click here to order your own adult coloring book. Here are two of my favorites:
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