7:25 a.m. -five minutes before it's time to get up for school, Blue hears singing coming through the walls of his bedroom. He comes running, "Mom! He's singing! He woke me up! Why do I have to wake up to this? He's ruining my morning! Why does he have to live here!!???"
I try to explain that it's time to get up anyway. I ask him to lay down and let Daddy rub his back for a minute so that he can calm down.
He's had it with his brother. He went to bed, not exactly happy because in his opinion --his brother ruined my birthday the night before with his antics. Now he wakes up to this irritation.
A couple of nights before that Red had a meltdown at bedtime that ruined Blue's nightly routine. When Red melts down it's hard to tell what is acting and what is real. He screams like Chester from Linkin Park in a rock song. He can make himself cry. His words are full of drama. He blames everyone else for his problems and turns the table on the issue at hand.
"Why are you guys being mean to me? Why do you only care about yourself? Why are you making me suffer? Why are you abusing me? Why do you have to force me to do things? You're not being fair! You're being selfish! This is your fault! This is Blue's fault!"
He balls his fist and hits doors, tables, pounds his bed, harasses the dog, he invades my personal space, follows me around closely. I assure him that any physical damage will be paid for with his money. If he doesn't have enough, we will sell something that belongs to him to pay for it.
He doesn't scare me in the least, because I mostly see it as drama -a way of acting out his pain or frustration with himself. I have what may very well be a delusional attitude that I will knock the shit out of him if he goes too far. Mind you -I am 5 ft. nothing and he is 5ft 10" and weighs twice as much as I do.
Blue however, sees Red's behavior as a threat to our safety and security. It isn't fair that he has to live with this. Blue suffers from anxiety and these antics make him nervous. He told his dad the other night, "I'm just afraid that one of these days, he's going to break something or hurt someone."
My husband says to me, "Blue is really nervous and anxious about his brother's behavior. He says, Red needs to go. He doesn't want him to live here anymore."
I respond, "He's also nervous and anxious about thunderstorms. We can't make those go away. We can't just give up on his brother." Of course, that's not what my husband was asking but he and Blue are both right, he shouldn't have to grow up with this.
Fortunately for Blue, a very low dosage of medication keeps his tantrums under control. Where his brother who is on several meds, at maximum dosage, is anything but under control. He does manage to hold things together very well when he's at school. Here at home is another story all together. I swear I hate this whole trial and error psychiatric medication crap!
What is choice, what is real, and what do we do about it? I find myself pondering that all too often. Blue thinks the answer is to send his brother away -give him to another family. Give him to the circus! The only problem with that is we live in the Circus. Just call me the Ringmaster.
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I try to explain that it's time to get up anyway. I ask him to lay down and let Daddy rub his back for a minute so that he can calm down.
He's had it with his brother. He went to bed, not exactly happy because in his opinion --his brother ruined my birthday the night before with his antics. Now he wakes up to this irritation.
A couple of nights before that Red had a meltdown at bedtime that ruined Blue's nightly routine. When Red melts down it's hard to tell what is acting and what is real. He screams like Chester from Linkin Park in a rock song. He can make himself cry. His words are full of drama. He blames everyone else for his problems and turns the table on the issue at hand.
"Why are you guys being mean to me? Why do you only care about yourself? Why are you making me suffer? Why are you abusing me? Why do you have to force me to do things? You're not being fair! You're being selfish! This is your fault! This is Blue's fault!"
He balls his fist and hits doors, tables, pounds his bed, harasses the dog, he invades my personal space, follows me around closely. I assure him that any physical damage will be paid for with his money. If he doesn't have enough, we will sell something that belongs to him to pay for it.
He doesn't scare me in the least, because I mostly see it as drama -a way of acting out his pain or frustration with himself. I have what may very well be a delusional attitude that I will knock the shit out of him if he goes too far. Mind you -I am 5 ft. nothing and he is 5ft 10" and weighs twice as much as I do.
Blue however, sees Red's behavior as a threat to our safety and security. It isn't fair that he has to live with this. Blue suffers from anxiety and these antics make him nervous. He told his dad the other night, "I'm just afraid that one of these days, he's going to break something or hurt someone."
My husband says to me, "Blue is really nervous and anxious about his brother's behavior. He says, Red needs to go. He doesn't want him to live here anymore."
I respond, "He's also nervous and anxious about thunderstorms. We can't make those go away. We can't just give up on his brother." Of course, that's not what my husband was asking but he and Blue are both right, he shouldn't have to grow up with this.
Fortunately for Blue, a very low dosage of medication keeps his tantrums under control. Where his brother who is on several meds, at maximum dosage, is anything but under control. He does manage to hold things together very well when he's at school. Here at home is another story all together. I swear I hate this whole trial and error psychiatric medication crap!
What is choice, what is real, and what do we do about it? I find myself pondering that all too often. Blue thinks the answer is to send his brother away -give him to another family. Give him to the circus! The only problem with that is we live in the Circus. Just call me the Ringmaster.
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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