I had a weekend of freedom and have spent the past two days paying for it.
Red participated in a retreat with his church. He spent the nights in a host home with other high school boys. They traveled to and from the church for worship and socialization and then spent Saturday doing a service project. They made lunches for the homeless and then went into downtown Austin to meet them and pass out lunches to them.
Tears filled my eyes on Saturday night when he called me to tell me about what he had done that day. He was absolutely beaming about helping these people. "I went up to this guy who was living under the freeway. I shook his hand and asked him where he was from. He was from Michigan. Mom! It was so awesome to help these people!" He felt really good and proud of himself. I was so proud and happy for him. I thought to myself, maybe this is his calling. Maybe the way to fill up his emptiness is by serving others.
For me, it was a weekend of peace. There was no, 'Put the dog down! Stop fighting with your brother! Enough with the singing already.'
There was no one knocking on my door early in the morning or late at night wanting to talk.
I thought about him often, wondering what he was doing at certain moments of the day. Is he talking their heads off and driving everyone crazy?
I quickly dismissed the thought ...just so glad to have my own slice of quiet time.
There was no one knocking on my door early in the morning or late at night wanting to talk.
I thought about him often, wondering what he was doing at certain moments of the day. Is he talking their heads off and driving everyone crazy?
I quickly dismissed the thought ...just so glad to have my own slice of quiet time.
He spent most of Sunday afternoon when he got home sleeping. I had to wake him up to eat dinner, worrying that he may not be able to get back to sleep for the night. He does. He passes out without me having to ask him to go to bed.
Yay me! More rest! Let's pain in the ass.
That is, until Monday morning when it is time for school.
Yay me! More rest! Let's pain in the ass.
That is, until Monday morning when it is time for school.
Of course, he does not want to get up. He makes it to school however, shortly after arriving he got into a major argument with his special education teacher. He did not want to follow directions.
I end up picking him up from school early. Mama bear instinct told me ...the day wasn't going to get any better. I couldn't focus on anything anyway. I kept wondering when the phone would ring. What did he do now to dig himself in deeper. He had run out of one of his medications (my fault I guess). I figured that he was still really tired from the weekend.
It turns out that he slept in a chair at his host's home because he thought it would be more comfortable than the floor. Which means, he probably got little to no sound sleep for the 2 and a half days he was there.
He came home after I picked him up and passed out, sleeping deeply from 11:30 until 2:30 p.m. I took him in to see his doctor. After his appointment we got a bite to eat. He came home and slept from 5:00 until 8:30 p.m. He then went back to bed by 11 p.m. He slept through his alarm at 7 a.m. refusing to get up for school. I didn't have the energy to fight him. My new motto is this...
It's your life!
If you want to live it in a box ...you don't have to do anything.
People who live in a box don't have to go to school or to work.
They don't have any responsibilities.
They don't have to be on time for anything.
They don't have to try when things are hard.
They don't have to deal with life and getting ahead.
They can just live in the box.
You don't have to worry about having the latest electronics.
There's no HDTV, computers or cell phones in a box.
No worries about finding a girlfriend, unless she wants to live with you in the box.
You don't have to pay rent or a car note.
You don't have to cook for yourself.
You can depend on the kindness of strangers to come down to your box and hopefully, give you lunch.
You know...just like you did for those nice homeless people this weekend in downtown Austin.
Tonight we have a PCP (Person Centered Planning) meeting scheduled, where all of his support system shows up here at our house to help him set goals and plans for his life. All of these people show up on their own time, they are not getting paid. His friend and ex Pastor comes. Last month his Video Tech mentor came. This time three of his teachers are scheduled to come. Also, the top Transition Coordinator for our school district is his Facilitator.
He plans this meeting, sets the schedule and invites those that he wants to help him. He really loves the attention that he gets during this process.
This morning, he sits at the kitchen table complaining. "I hate school! If it weren't for you making me go...I wouldn't!"
He is already an hour late. I ask him, "So you don't want to go to school? Would you like me to cancel this evening's meeting? People who live in a box don't need to set goals. I can just call everyone and tell them life is too hard. You don't want to go to school. You've given up. They don't need to waste their time coming over here tonight."
He made it to school ...finally. Once he was there, I received this text message ...
"I apologize for my behavior this morning. I was really tired and cranky. :/ I may need to start taking 5 hour energy in the mornings."
I missed Yoga today since I spent a good part of my morning getting him to school. By the time I wrapped dropping him off and speaking with the school Psychologist (making plans for helping him get to school on time and make the right choices once he gets there for his 17 year-old self)...my free-time for the day is half-way over. By free time, I mean the opportunity to exercise, write, grocery shop and get my gray hair dyed. Yes...it's getting more gray by the minute. Hmm...I wonder why?
I will also preparing the house and snacks for his meeting this evening.
It turns out he doesn't want to live his life in a box after all.
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 · 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