Everything starts out normally on this ordinary Monday morning.
I'm too tired to get up when the alarm rings at 6:50 a.m..
I hit snooze and I'm up by 7.
I try to get Red up.
It takes him a few minutes to get going.
I put new clothes on his bed last night.
Within a few minutes he's sitting up pulling the tags off and getting dressed.
He goes down for breakfast.
I hear silence --I know that he has finished eating and he's sitting there biting his nails.
I awaken Blue -the independent one.
I can leave him and know that he will follow through.
I head down stairs to put a fire underneath Red.
I give him his meds and send him upstairs, so that Blue can come down.
We have to keep them on opposite floors in the morning.
Unfortunately, upstairs they meet.
A few punches and dirty remarks later...
I march up the stairs to break up the non-sense.
Blue comes down to eat.
I follow him down to put Red's lunch together and make coffee.
The bus arrives.
I call for Red.
No answer.
I march back up the stairs.
There he is laying back down underneath the freaking covers!
I can physically feel my blood pressure going up --my heart pounding. I am pissed!
"What are you doing!?
The bus is here!
GET UP NOW!"
"I'm too tired," he says flatly.
He has not brushed his teeth, washed his face, put on socks or shoes.
I stomp back down the stairs and wave the bus on.
It's not fair to make EVERYBODY late just because my child is being lazy.
After they leave -I head back up to his room.
"Would you like to loose your computer or get ready for school?"
"I'm too tired."
The computer is removed.
He doesn't put up a fight.
He doesn't move.
I make a series of phone calls to the school -trying to find someone to talk to him.
No luck -no one is answering.
I am on carpool duty for Blue and his middle-school friends. I have to leave.
Dad makes an attempt to get him up. Still -no movement. Dad has to leave for an appointment.
When I get in the car, suddenly, I realize that I have a meeting at the middle-school this morning.
I have to discuss a game-plan to get Blue through the next 5 weeks of school without feeling so totally overwhelmed that we end up back in the Psychiatrists office.
I run back into the house and yell back up the stairs to Red,
"I have a meeting this morning. You better be ready by the time I get back!"
When I pull back up to the house, he comes out immediately.
"Why don't you understand mom? I am just tired this morning."
"You say you want a job. Yet, you have worked-based learning this morning where they are teaching you work skills and evaluating your job readiness and you decide not to show up this morning.
You are showing us, that you are not ready for employment.
People who hold good jobs, push through being tired.
They show up for work...on time!"
"Well...employers are unfair! Why can't they understand that someone is just tired."
"If you're running a store ...you open the doors and customers come in, but you don't have any employees there to help the customers...YOU LOOSE MONEY.
The employer has to make money to stay in business and to pay their employees!
You say you want to work on movies. A movie has a budget.
They need everyone on the set, or involved with the movie to show up and do their job on time or they run out of money and they can't finish the movie.
They need people who are dependable!"
"Well...people just need to understand that I'm tired."
"Guess what dude, I'm tired. I didn't feel like getting up this morning either. But I push through it.
I didn't feel like picking your friends up yesterday and spending 3 hours at the pool
--but I pushed through it.
This week...I'm going to show you what it's like for me to be too tired to do my job of taking care of you.
'Mom can you make me something to eat?'
'No -I'm too tired?'
'Mom can I have a friend over?'
'No...I'm too tired.'
I'm going to be too tired to do my job and lets see how that works out."
"NOOOO!"
"You know what ...it's your life and if that's the way you choose to live it...that's fine.
There are lots of people who are just too tired to go to work on time everyday.
But if you want a good life, you push through being tired to go get your education so that you can get a good job.
If you want to lie around because you're tired --you will have a Lie-Around Life.
You won't have your own apartment, with all the nice things that you like.
You can live with the Lie-Around people in a group home, because I will not support laziness."
"I don't want to be poor and not be able to eat whatever I want."
"Well that's what people who are too tired to go to work and school have to deal with."
"Well...why do I have to go to school all-day? There are people who have half-days."
"Those are the Lie-Around people...unless they have jobs the other half of the day."
As we arrive at school and he finally gets out of the car he asks,
"When can I have my computer back?"
"I don't know...Lie-around people don't have their own computers in their rooms."
"But what am I supposed to do?
I'm going to be bored!"
"Well...you're so tired --you can get some rest."
And this is my life all before 10 a.m. on a Monday.
I'm too tired to get up when the alarm rings at 6:50 a.m..
I hit snooze and I'm up by 7.
I try to get Red up.
It takes him a few minutes to get going.
I put new clothes on his bed last night.
Within a few minutes he's sitting up pulling the tags off and getting dressed.
He goes down for breakfast.
I hear silence --I know that he has finished eating and he's sitting there biting his nails.
I awaken Blue -the independent one.
I can leave him and know that he will follow through.
I head down stairs to put a fire underneath Red.
I give him his meds and send him upstairs, so that Blue can come down.
We have to keep them on opposite floors in the morning.
Unfortunately, upstairs they meet.
A few punches and dirty remarks later...
I march up the stairs to break up the non-sense.
Blue comes down to eat.
I follow him down to put Red's lunch together and make coffee.
The bus arrives.
I call for Red.
No answer.
I march back up the stairs.
There he is laying back down underneath the freaking covers!
I can physically feel my blood pressure going up --my heart pounding. I am pissed!
"What are you doing!?
The bus is here!
GET UP NOW!"
"I'm too tired," he says flatly.
He has not brushed his teeth, washed his face, put on socks or shoes.
I stomp back down the stairs and wave the bus on.
It's not fair to make EVERYBODY late just because my child is being lazy.
After they leave -I head back up to his room.
"Would you like to loose your computer or get ready for school?"
"I'm too tired."
The computer is removed.
He doesn't put up a fight.
He doesn't move.
I make a series of phone calls to the school -trying to find someone to talk to him.
No luck -no one is answering.
I am on carpool duty for Blue and his middle-school friends. I have to leave.
Dad makes an attempt to get him up. Still -no movement. Dad has to leave for an appointment.
When I get in the car, suddenly, I realize that I have a meeting at the middle-school this morning.
I have to discuss a game-plan to get Blue through the next 5 weeks of school without feeling so totally overwhelmed that we end up back in the Psychiatrists office.
I run back into the house and yell back up the stairs to Red,
"I have a meeting this morning. You better be ready by the time I get back!"
When I pull back up to the house, he comes out immediately.
"Why don't you understand mom? I am just tired this morning."
"You say you want a job. Yet, you have worked-based learning this morning where they are teaching you work skills and evaluating your job readiness and you decide not to show up this morning.
You are showing us, that you are not ready for employment.
People who hold good jobs, push through being tired.
They show up for work...on time!"
"Well...employers are unfair! Why can't they understand that someone is just tired."
"If you're running a store ...you open the doors and customers come in, but you don't have any employees there to help the customers...YOU LOOSE MONEY.
The employer has to make money to stay in business and to pay their employees!
You say you want to work on movies. A movie has a budget.
They need everyone on the set, or involved with the movie to show up and do their job on time or they run out of money and they can't finish the movie.
They need people who are dependable!"
"Well...people just need to understand that I'm tired."
"Guess what dude, I'm tired. I didn't feel like getting up this morning either. But I push through it.
I didn't feel like picking your friends up yesterday and spending 3 hours at the pool
--but I pushed through it.
This week...I'm going to show you what it's like for me to be too tired to do my job of taking care of you.
'Mom can you make me something to eat?'
'No -I'm too tired?'
'Mom can I have a friend over?'
'No...I'm too tired.'
I'm going to be too tired to do my job and lets see how that works out."
"NOOOO!"
"You know what ...it's your life and if that's the way you choose to live it...that's fine.
There are lots of people who are just too tired to go to work on time everyday.
But if you want a good life, you push through being tired to go get your education so that you can get a good job.
If you want to lie around because you're tired --you will have a Lie-Around Life.
You won't have your own apartment, with all the nice things that you like.
You can live with the Lie-Around people in a group home, because I will not support laziness."
"I don't want to be poor and not be able to eat whatever I want."
"Well that's what people who are too tired to go to work and school have to deal with."
"Well...why do I have to go to school all-day? There are people who have half-days."
"Those are the Lie-Around people...unless they have jobs the other half of the day."
As we arrive at school and he finally gets out of the car he asks,
"When can I have my computer back?"
"I don't know...Lie-around people don't have their own computers in their rooms."
"But what am I supposed to do?
I'm going to be bored!"
"Well...you're so tired --you can get some rest."
And this is my life all before 10 a.m. on a Monday.
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