"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."
-Eleanor Roosevelt
One day I would like my home to be the haven that it is supposed to be. I know that's a bit much to ask when you have two teenagers with Aspergers. I'm reaching for the stars and I will never stop reaching.
So my insurance company reaches out to me to find out what Red needs post hospitalization. When I tell them we are still having some meltdowns and that our household is still being disrupted on a fairly regular basis, they offer a day program where he would be monitored by nurses, doctors and receive therapy on a daily basis. There is also a charter school attached to the program where he can finish his school year. Great! I'm excited at the prospect of this.
I start making phone calls. I am given the run around by the program I am most interested in. "We don't have any space right now, but you are next on our list. We will call you tomorrow." blah blah blah! I finally get an appointment with another one of the referrals. We go for an evaluation. They show me around, I'm not super impressed with their so-called evaluation process. They basically have me sign a few papers, ask him some general questions and then ask me for my portion of the payment.
He is super anxious about this. He's telling me all the reasons why he doesn't need to do this. "I can just go back to my school. Everything was fine at my school. I'm not going to like this!" Everything was fine at my school!? You've got to be kidding me. I have two holes in my doors from a meltdown that began with, "I hate that school! You don't understand! I can't go back there!" He has been complaining about his school for the entire year!
He is so nervous and full of anxiety that it's actually pretty hard to get through the evaluation process. He's constantly interrupting, saying the same things over and over again. This is another change for him. He doesn't know quite what to expect -new peers, new counselors, new program, new rules. Change is a very scary thing for Aspies.
After our evaluation appointment, we stop by his high school to take care of some paperwork. Moments earlier he is telling me that all he wants is to go back to his school. When we get there, he doesn't even want to get out of the car. Anxiety has encapsulated him. He's fine to go back to school, yet he doesn't want to get out of the car because people may be staring at him and asking him questions about where he has been. How exactly was he going to handle this if he returned to school?"
After I have signed him up for the program, I find out that the van service wants him to be at the pick-up location at 6:30 a.m. The pick-up location is about 20 minutes from our house. How in the hell am I supposed to make that happen? I haven't been able to get him outside of our front door by 8 a.m. to catch the school bus. That has been a struggle everyday for the entire school year. Not to mention, I have another child that I have to get up and ready for school and hubby is out of town.
I decide I will have to drive him all the way down to South Austin and he may not get there exactly on time. This is a good 45 minute drive without traffic. I would be a complete nervous wreck fighting to get him up at 5:30 a.m. to be somewhere on a deadline by 6:30. Not to mention I would have to figure out how I'm going to get Blue to school by 8:30 a.m.
Of course, I am still a complete nervous wreck listening to him bitch and moan in the car about how he doesn't want to to this and all of the idiotic reasons why. To top it all off, it's a PMS week. My nerves are seriously fried. I finagle getting Blue to school by the skin of my teeth. I get on the highway with Red. He's driving me completely batty with the complaining.
"Why are you doing this mom?"
"Why can't I just go back to my school? There was nothing wrong with my school?"
"Why is there so much traffic. It's ridiculous for us to drive down here in all of this traffic!"
"You will just do anything to get me out of the house won't you? You just hate me don't you?"
I try to tune him out. I have gone back and forth with him long enough. I stop answering. I'm trying to focus on the traffic, trying to listen to the navigation system, and he's freaking screeching in my ear! He goes from screeching to a loud piercing scream...while I'm driving! I loose it! Screaming while I'm driving + PMS = recipe for getting cursed out.
"Have you lost your f-ing mind? Do you want me to crash this damn car? I am trying to help you! I'm the only one who is constantly trying to help you and I am sick and tired of you treating me like shit! I do everything for you! I am the person who just 2 weeks ago took your ass out of town for a weekend so that you could go to Six Flags! Your father NEVER would have done that! I do EVERYTHING! Yes...it would be easier to send you back to your high school to put your ass on the bus and just let you go crazy there so you can end up back at the hospital! Maybe I should just get off the highway right now and drive you straight to the hospital myself!!!"
I swear I wanted to just drive the freakin' car right into the median -drive off a cliff if I could find one "Thelma and Louise" style!
He looks at me as if I am from Mars. He calmly says, "Well you don't have to get so mad? See mom, I'm not the only one who looses it." He gets quiet. Five minutes later he says, "I'm sorry." Ya think! You should be sorry! I think but do not say.
On my way back home I call hubby. "I can't do this! I'm loosing it." My hormones and emotions are all over the place. I feel like I'm at the end of my rope. Hubby says, "Do you want me to cancel my trip for next week?" What do you think?
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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.
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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