"I can't do it! There's no way. I'm gonna loose it, " I say to my husband.
"I can't drink my way out of this one!" I say to my mom.
My doubt is palpable. The talking, perseverating was non-stop at top speed. The subject? Our impending trip to Six Flags -just me and my 15 year-old Aspergers teen for the entire day!
"I'm going to set my clock for 8 a.m.
"We have to leave early."
"We have to get there on time."
"I want to stay there for at least 8 hours!"
"You don't understand!!!"
"Can I set my clock for 8 a.m.?"
"Do you have enough gas?"
"Did you print out your ticket?"
"You can't wait until the morning to print out your ticket!"
"This is really important to me. We have to go!! I have to shoot this video footage for my project at school. Ms. R- is depending on me to do this project."
"What time are we going to leave?"
"I have to know the exact plan ahead of time."
"I'm not going to eat any breakfast so we can just get out of here."
"We're not going to go are we? You're going to find some excuse."
This endless loop of questions and statements goes on for hours at max volume. I am beginning to tremble and shake. I have a glass of wine to calm my nerves. I close my door and turn up the volume of my television. My husband stands guard outside my door, not allowing anyone in or out. He knows --I'm done!
I update my Facebook status. "Would anyone like to go to Six Flags tomorrow in my place? I'd do anything not to have to walk around that park tomorrow!" In the ninety degree steamy, San Antonio heat with this boy who's on overload! Just me and him All Freaking Day! I'm thinking -I swear I would pay someone to go in my place. Can't I hire a big brother since the one he has isn't worth a damn?!!
I even barter sexual favors with my husband if he would trade places with me. Of course he was glad to oblige! But I knew that he wouldn't have the patience that I would. His fuse is even shorter than mine -not to mention his infamous bad knee. It would be so hard for him to walk all over that park. Between the knee and the lack of patience, Red wouldn't be able to have much fun at all.
Cut to the park. A friend of mine tells me that you can get a pass from Hospitality so that your child with autism doesn't have to stand in line. It's a very simple process. They give us this little blue pass that allows him to go through the exit and give this pass to the operator, who will let them on the ride. I go through this process with him for several rides, walking across the sauna like park . He gets the swing of things. I then find a comfortable cool seat where I play word games on my Kindle as I sit in the shade. We are in touch with each other via cell phone. He checks in with me periodically.
He finishes up his day of riding and video taping. We have dinner at his favorite restaurant BJ's and then we hightail it to our hotel. It's a 90 minute drive back home. However, I knew after a day at the park, I wouldn't feel up to driving back home. We used points to book a hotel suite so that I could drive 10 minutes to go pass out afterward.
One may wonder...why are you going by yourself? What about your husband, your other kids? Yes...I have three children and a husband. My eldest atypical son (age 23) I don't talk about much here. He is off living his life without much regard to the family who raised him, including his teenage brother who could really use a big brother. Well, we are not your typical family who can go off for a day of family fun and actually enjoy it.
Blue got to spend the day with his dad -alone! Breakfast at I-Hop followed by going to the movies to see "Fast Five." They went to the mall and then bowling. They had a fun-filled day together.
This option kept the day simple. I didn't have to be pulled in 2 directions as one child wants to go one way and the other child wants to go another. I didn't have to deal with my husband's complaining about his bad knee. We could listen to Linken Park in the car without anyone complaining.
I had the flexibility to march to Red's beat for the day -to only have one high maintenance being to deal with.
I am proud to say...I survived without incident. He was cooperative. He didn't complain (much) about anything. For the day, he was able to have things HIS WAY.
The following morning I listen as Red is singing in the shower. Blue hates when his brother sings. He would have been having a fit if he were there. I smile as I hear him singing. The boy who usually talks about how horrible his life is...is singing. Singing ='s happiness...at least for the moment!.
Here is the video that he made:
Please help keep my self-esteem in place...Click below! "You like me! You really like me!"
"I can't drink my way out of this one!" I say to my mom.
My doubt is palpable. The talking, perseverating was non-stop at top speed. The subject? Our impending trip to Six Flags -just me and my 15 year-old Aspergers teen for the entire day!
"I'm going to set my clock for 8 a.m.
"We have to leave early."
"We have to get there on time."
"I want to stay there for at least 8 hours!"
"You don't understand!!!"
"Can I set my clock for 8 a.m.?"
"Do you have enough gas?"
"Did you print out your ticket?"
"You can't wait until the morning to print out your ticket!"
"This is really important to me. We have to go!! I have to shoot this video footage for my project at school. Ms. R- is depending on me to do this project."
"What time are we going to leave?"
"I have to know the exact plan ahead of time."
"I'm not going to eat any breakfast so we can just get out of here."
"We're not going to go are we? You're going to find some excuse."
This endless loop of questions and statements goes on for hours at max volume. I am beginning to tremble and shake. I have a glass of wine to calm my nerves. I close my door and turn up the volume of my television. My husband stands guard outside my door, not allowing anyone in or out. He knows --I'm done!
I update my Facebook status. "Would anyone like to go to Six Flags tomorrow in my place? I'd do anything not to have to walk around that park tomorrow!" In the ninety degree steamy, San Antonio heat with this boy who's on overload! Just me and him All Freaking Day! I'm thinking -I swear I would pay someone to go in my place. Can't I hire a big brother since the one he has isn't worth a damn?!!
I even barter sexual favors with my husband if he would trade places with me. Of course he was glad to oblige! But I knew that he wouldn't have the patience that I would. His fuse is even shorter than mine -not to mention his infamous bad knee. It would be so hard for him to walk all over that park. Between the knee and the lack of patience, Red wouldn't be able to have much fun at all.
Cut to the park. A friend of mine tells me that you can get a pass from Hospitality so that your child with autism doesn't have to stand in line. It's a very simple process. They give us this little blue pass that allows him to go through the exit and give this pass to the operator, who will let them on the ride. I go through this process with him for several rides, walking across the sauna like park . He gets the swing of things. I then find a comfortable cool seat where I play word games on my Kindle as I sit in the shade. We are in touch with each other via cell phone. He checks in with me periodically.
He finishes up his day of riding and video taping. We have dinner at his favorite restaurant BJ's and then we hightail it to our hotel. It's a 90 minute drive back home. However, I knew after a day at the park, I wouldn't feel up to driving back home. We used points to book a hotel suite so that I could drive 10 minutes to go pass out afterward.
One may wonder...why are you going by yourself? What about your husband, your other kids? Yes...I have three children and a husband. My eldest atypical son (age 23) I don't talk about much here. He is off living his life without much regard to the family who raised him, including his teenage brother who could really use a big brother. Well, we are not your typical family who can go off for a day of family fun and actually enjoy it.
Blue got to spend the day with his dad -alone! Breakfast at I-Hop followed by going to the movies to see "Fast Five." They went to the mall and then bowling. They had a fun-filled day together.
 |
| Just the 2 of Us! |
I had the flexibility to march to Red's beat for the day -to only have one high maintenance being to deal with.
I am proud to say...I survived without incident. He was cooperative. He didn't complain (much) about anything. For the day, he was able to have things HIS WAY.
The following morning I listen as Red is singing in the shower. Blue hates when his brother sings. He would have been having a fit if he were there. I smile as I hear him singing. The boy who usually talks about how horrible his life is...is singing. Singing ='s happiness...at least for the moment!.
Here is the video that he made:
Please help keep my self-esteem in place...Click below! "You like me! You really like me!"
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.
diyalabs6192603 11p · 192 weeks ago
Robots for kids
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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