Every day since I got here, I have spent time at his bedside listening to his dialogue about how the world owes him everything and who he is going to take to court next. It's a bit like listening to Red talk. I have laughed with him and his sick sense of humor. I have watched him gain his strength and fight his way back to health. He's not there completely. In fact, he may never be again. But so far, he's not ready to give up.
So we face the huge challenge of figuring out his care. In the meantime, everyone is a little stressed. One of my brothers is trying to use me up before I leave. A couple of statements have been made about "you don't have to work" so you can do this our that. Or, "You're living the life because you don't have to work." Excuse me! I guess you don't realize how much work my life really is.
I have two boys with autism. Their needs are extremely challenging. I have my mother with me who also needs care. I am her administrative and medical assistant. I am her driver, to all medical and other appointments. I am the listening ear that she has to talk to on a daily basis, because she has decided not to have a social life at all anymore. Having my mother living with me makes my life even more challenging because she doesn't always "get" the boys, so I have to constantly referee between them.
My husband works non-stop and travels, which leaves me there to deal with all of the boys issues from doctors, therapists, medicine, school, social interactions and extra-curricular activities. I have no extended family in Texas to support me.
By the way, both boys have been on relatively good behavior while I've been gone. However, my mother tells me this morning that Red is amping up a little more every day. He's ranting about how unfair the government is for making school hours so long. Then he gets into jails...and how they don't help anything. So I'm sure by the time I get home he will be ready to explode.
I am reminded that my family who lives several states away, does not live my life. Not everyone reads this blog to understand what I go through from day to day. They have no idea how drained I am from constantly living on the edge of meltdowns, fights, and drama. They just want to suck me dry before I leave here because they are left dealing with the mess of my father.
Well guess what? We all have our challenges in life. When my mother came to Texas two years ago, it wasn't to live with me permanently, but that's what it has turned into. When I had two children, the thought of autism had never crossed my mind, but it's here, and I am dealing with it. It's not all warm and fuzzy. My boys are now these huge, hormonal teenagers, with learning challenges, depression, anxiety and at times, explosive meltdowns. I still have the holes in my walls to prove it.
"I hate myself! I hate my life! I just want to die," are words none of my siblings have had to hear come out of the mouths of their children.
So I won't take it personally when it is insinuated that, "I don't work." But on this last day in California, I will not be used up. I will do my laundry and rest before I go back home to WORK...to deal with my own drama and sleep with my own down pillows!
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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