I have been plagued all day long with eight questions. Eight questions asked over and over again, in a loop. All.Day.Long.
It's Monday, Memorial Day. Here in central Texas it has been storming all night and all day. There have been flash flood warnings. There have been bogus tornado warnings in our direct area at least 3 times today.
Around noon Red asks me if his therapy appointment is on for today. I told him to call his therapist. His therapist calls back and says, "Yes. I'm working today."
Well, we have flash flood warnings and I'm not about to get into my car with Red to drive forty minutes to an appointment. I told him to let his therapist know we would not be coming due to the flooding in our area. I suggested that he ask him if they could just talk on the phone. That wasn't possible.
So then it began, the questions. The same questions that he has been asking for months. The same questions that I have answered backwards, forwards and upside down. The same questions that he has asked countless other resources and has received again, basically the same answers.
He followed me around all day long asking these questions.
I answered them once.
I hummed, "Kumbaya."
I wrote my own version of it:
Come on by Lord!
Come on by.
I'm about to
start to cry.
Come on by Lord.
Come on by.
Oh Lord!
Come on by.
Ain't got no secrets Lord.
Ain't got no lies
I'm about to
start to cry.
Give me peace Lord.
Help me out.
I need you Lord
Without a doubt!
Come on by Lord!
Come on by!
Oh Lord!
Come on by.
I sang.
I colored in my coloring book.
I ignored.
He continued for hours.
Finally, I made him write the questions down. I answered each of them in writing.
1) How can I buy equipment if I have to pay gas and car insurance if I had a car?
You can only buy equipment when you make extra money. Your job and disability can help pay for your life, including a car or transportation.
2) Can I still save up to buy equipment if I had an apartment and a car?
If you have an apartment, you can only buy equipment if make extra money from video editing or working more hours. You can only buy things when you have extra money after all of your life expenses are paid.
3) Do I have to pay insurance if I had a car when I’m living with you guys?
We will only help you with car insurance if you don’t have enough money to pay it yourself from your job. We will only help you when you have no other resources for money. We will not pay your bills so that you can keep buying equipment.
4) What number can I call when I’m having problems at home?
I don’t have a number for you to call. You can ask your case manager if she has a number for you to call from home.
5) Do you like to push my buttons?
I use jokes and laughter when you are trying to push my buttons. I joke around when my nerves are shot to hell, instead of yelling at you.
6) Do you hate me?
I do not hate you. I HATE YOUR BEHAVIOR!
7) Why do I have to have a hard life and not get along with my family?
You cannot continue to stress me out all of the time and live here. I am no longer obligated to have you in my house if my health and sanity are in danger.
8) Do you want my life to be horrible and to ruin my life?
I want your life to be good. I want you to be independent. I want to live in peace. Your life being good does not depend on THINGS that you BUY such as equipment. THINGS do not make you happy. You are never happy even when you buy things for more than a few minutes. What makes you happy comes from your relationship with God and from helping others. You also seem happy when you are with friends and your girlfriend or anyone other than this family! You are NEVER happy when you are in this house unless your friends or girlfriend is here. I can not make you happy.
The END
Ten minutes later, he was back at my bedroom door.
I need to talk to you.
I need to see you.
He knocked, louder and louder.
I get it.
Anxiety.
O.K.
I can not help him anymore.
It feels like he is trying to drive me crazy and he's doing a bang up job.
It's 9 p.m.
I have heartburn.
It's Monday, Memorial Day. Here in central Texas it has been storming all night and all day. There have been flash flood warnings. There have been bogus tornado warnings in our direct area at least 3 times today.
Around noon Red asks me if his therapy appointment is on for today. I told him to call his therapist. His therapist calls back and says, "Yes. I'm working today."
Well, we have flash flood warnings and I'm not about to get into my car with Red to drive forty minutes to an appointment. I told him to let his therapist know we would not be coming due to the flooding in our area. I suggested that he ask him if they could just talk on the phone. That wasn't possible.
So then it began, the questions. The same questions that he has been asking for months. The same questions that I have answered backwards, forwards and upside down. The same questions that he has asked countless other resources and has received again, basically the same answers.
He followed me around all day long asking these questions.
I answered them once.
I hummed, "Kumbaya."
I wrote my own version of it:
Come on by Lord!
Come on by.
I'm about to
start to cry.
Come on by Lord.
Come on by.
Oh Lord!
Come on by.
Ain't got no secrets Lord.
Ain't got no lies
I'm about to
start to cry.
Give me peace Lord.
Help me out.
I need you Lord
Without a doubt!
Come on by Lord!
Come on by!
Oh Lord!
Come on by.
I sang.
I colored in my coloring book.
I ignored.
He continued for hours.
Finally, I made him write the questions down. I answered each of them in writing.
1) How can I buy equipment if I have to pay gas and car insurance if I had a car?
You can only buy equipment when you make extra money. Your job and disability can help pay for your life, including a car or transportation.
2) Can I still save up to buy equipment if I had an apartment and a car?
If you have an apartment, you can only buy equipment if make extra money from video editing or working more hours. You can only buy things when you have extra money after all of your life expenses are paid.
3) Do I have to pay insurance if I had a car when I’m living with you guys?
We will only help you with car insurance if you don’t have enough money to pay it yourself from your job. We will only help you when you have no other resources for money. We will not pay your bills so that you can keep buying equipment.
4) What number can I call when I’m having problems at home?
I don’t have a number for you to call. You can ask your case manager if she has a number for you to call from home.
5) Do you like to push my buttons?
I use jokes and laughter when you are trying to push my buttons. I joke around when my nerves are shot to hell, instead of yelling at you.
6) Do you hate me?
I do not hate you. I HATE YOUR BEHAVIOR!
7) Why do I have to have a hard life and not get along with my family?
You cannot continue to stress me out all of the time and live here. I am no longer obligated to have you in my house if my health and sanity are in danger.
8) Do you want my life to be horrible and to ruin my life?
I want your life to be good. I want you to be independent. I want to live in peace. Your life being good does not depend on THINGS that you BUY such as equipment. THINGS do not make you happy. You are never happy even when you buy things for more than a few minutes. What makes you happy comes from your relationship with God and from helping others. You also seem happy when you are with friends and your girlfriend or anyone other than this family! You are NEVER happy when you are in this house unless your friends or girlfriend is here. I can not make you happy.
The END
Ten minutes later, he was back at my bedroom door.
I need to talk to you.
I need to see you.
He knocked, louder and louder.
I get it.
Anxiety.
O.K.
I can not help him anymore.
It feels like he is trying to drive me crazy and he's doing a bang up job.
It's 9 p.m.
I have heartburn.
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.
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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