It must be a miserable thing when the world doesn't work according to the way you think it should as in, it should really revolve around you. Work schedules should be convenient for your need for extra sleep or lazing about the house as you please. Yet, you should have all of the money necessary for whatever your pleasure.
People should be at your beck and call -waiting by the phone to find out what you need. Since they have cell phones, they should be able to answer your call 24/7. When they answer, they should tell you exactly what you want to hear. You don't want to hear what is truth for the rest of the world. That does not apply to you. The reality that the rest of the world lives by is far to inconvenient for you to deal with.
While we're at it, let's face it, other people really should not have needs or feelings if they disrupt your needs being met at every second of the day. Other people should never be tired or sick. Why should they need any rest? Why can't they be available 24/7 to answer your every question and listen to your every thought for the 9 millionth time. Too tired to chauffeur you around? That's ridiculous! All you have to do is sit there and push the pedal. How hard could that be? It's not going to kill you. Of course, this begs the question, How would you know since YOU'VE NEVER DONE IT?!
Why on earth would parents need to go on a date or hang out with their friends? Why can't they just be there for you in case you need someone to yell at?
Know anyone who thinks this way?
Well in my last post, "A Brilliant Mind," Red found out that his hours at work had been reduced from 20 to 10 hours per week. I was not happy because that would give him too much time on his hands to sit around the house, idle, bored, inevitably bugging the crap out of me.
His brilliant mind told him that the solution was for us to reduce the amount of rent he pays. So NOT Happening Dude!
The rants and rages went on for days.
He spoke to his Adult Transition teacher about it. She suggested the same thing I did. That he open up his availability at work so they would give him more hours. He had his availability pretty limited to what would be convenient for him because after all, he needs time to his self ...so that he can be bored and bug the shit out of everyone in this house.
He was livid when he came home from the meeting with his teacher!
"She made me put down that I want to work on Saturdays! She made me do it! If I didn't do it, she was going to yell at me! I'm afraid of her, so I just did it!"
This went on all day long!
Later that evening, he spoke on the phone with another adult mentor who gave him the same story and advice that his teacher did. He listened but was not happy.
The following day he met with his Occupational Therapist. She is a very soft spoken, lovely woman who has lots of experience with teenagers and young adults with various abilities. She also has had personal experience with her own children who had special needs. (They are now adults and all out of her house.) She wrote me an e-mail after their appointment:
"My commits to him regarding his work decision.
You are the one who must live with the decisions you make.
Less hours is less money. You’ll need to adjust for that.
Life is not predictable, you need to learn to practice flexibility.
Have faith in yourself to handle it.
He got upset with me a few times, face flushing, biting his lip, and tears in his eyes. He held it together, took some deep breaths and calmed himself. I was proud of the control he managed. He was able to reflect, If my Mom had just said that to me, I’d probably be yelling about now.
He’s starting to show some insights and maturity. "
He held back with her, but continued to give me hell for several days. He hates change! It brings about fear and anxiety. It just really pisses him off that the world doesn't work perfectly, according to his plans.
Changes happen and you have to roll with them, but that feels impossible for him. He needs to work through all of that, mostly by yelling at me!
He did however, keep his additional hours of availability for work open. When he received his new schedule for next week, he was scheduled for additional hours, consistently, in the mornings. No Saturdays ...yet!
He was sick with a pretty bad sore throat the day he got the new schedule. He seemed to take it all in stride, keeping a very calm demeanor. Either that or his throat was hurting so bad, he didn't want to scream. Either way I say,
Dear God,
Good lookin out! You always come right on time.
People should be at your beck and call -waiting by the phone to find out what you need. Since they have cell phones, they should be able to answer your call 24/7. When they answer, they should tell you exactly what you want to hear. You don't want to hear what is truth for the rest of the world. That does not apply to you. The reality that the rest of the world lives by is far to inconvenient for you to deal with.
 |
| One of the thousands of text message conversations with Red |
While we're at it, let's face it, other people really should not have needs or feelings if they disrupt your needs being met at every second of the day. Other people should never be tired or sick. Why should they need any rest? Why can't they be available 24/7 to answer your every question and listen to your every thought for the 9 millionth time. Too tired to chauffeur you around? That's ridiculous! All you have to do is sit there and push the pedal. How hard could that be? It's not going to kill you. Of course, this begs the question, How would you know since YOU'VE NEVER DONE IT?!
Why on earth would parents need to go on a date or hang out with their friends? Why can't they just be there for you in case you need someone to yell at?
Know anyone who thinks this way?
Well in my last post, "A Brilliant Mind," Red found out that his hours at work had been reduced from 20 to 10 hours per week. I was not happy because that would give him too much time on his hands to sit around the house, idle, bored, inevitably bugging the crap out of me.
His brilliant mind told him that the solution was for us to reduce the amount of rent he pays. So NOT Happening Dude!
The rants and rages went on for days.
He spoke to his Adult Transition teacher about it. She suggested the same thing I did. That he open up his availability at work so they would give him more hours. He had his availability pretty limited to what would be convenient for him because after all, he needs time to his self ...so that he can be bored and bug the shit out of everyone in this house.
He was livid when he came home from the meeting with his teacher!
"She made me put down that I want to work on Saturdays! She made me do it! If I didn't do it, she was going to yell at me! I'm afraid of her, so I just did it!"
This went on all day long!
Later that evening, he spoke on the phone with another adult mentor who gave him the same story and advice that his teacher did. He listened but was not happy.
The following day he met with his Occupational Therapist. She is a very soft spoken, lovely woman who has lots of experience with teenagers and young adults with various abilities. She also has had personal experience with her own children who had special needs. (They are now adults and all out of her house.) She wrote me an e-mail after their appointment:
"My commits to him regarding his work decision.
You are the one who must live with the decisions you make.
Less hours is less money. You’ll need to adjust for that.
Life is not predictable, you need to learn to practice flexibility.
Have faith in yourself to handle it.
He got upset with me a few times, face flushing, biting his lip, and tears in his eyes. He held it together, took some deep breaths and calmed himself. I was proud of the control he managed. He was able to reflect, If my Mom had just said that to me, I’d probably be yelling about now.
He’s starting to show some insights and maturity. "
He held back with her, but continued to give me hell for several days. He hates change! It brings about fear and anxiety. It just really pisses him off that the world doesn't work perfectly, according to his plans.
Changes happen and you have to roll with them, but that feels impossible for him. He needs to work through all of that, mostly by yelling at me!
He did however, keep his additional hours of availability for work open. When he received his new schedule for next week, he was scheduled for additional hours, consistently, in the mornings. No Saturdays ...yet!
He was sick with a pretty bad sore throat the day he got the new schedule. He seemed to take it all in stride, keeping a very calm demeanor. Either that or his throat was hurting so bad, he didn't want to scream. Either way I say,
Dear God,
Good lookin out! You always come right on time.
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