It's so many things right now. I'm constantly fighting fatigue. Having difficulty focusing. Feeling like very little is being accomplished on my long list of "to-do's". It's the searching, hoping, praying, collaborating with doctors, and teachers, insurance companies and therapists. It's the walking on eggshells, the barrage of negativity surrounding me, the field of landmines I walk through daily, trying not to trigger an explosion. It's not natural...it's not human inclination. It totally goes against the grain of "fight or flight" that we are inclined to do when we feel like we're under attack. It's the maintaining control because he's out of control. It's the loss of the dream -that he would be my easy child.
You see...his light shines so brightly. There is so much intelligence and so much love in his heart, so much kindness and yes...empathy. He is the one who I KNOW for sure will be all he can be. He is the one with the internal motivation. He is the one who wants so much to help others. He is the one who already has goals of getting a Masters Degree and maybe a Ph. D. I mean who talks about that when they're 12?
He is the one who use to be the attorney for his brother, when he was acting out. "Mom he doesn't mean that. He's just trying to... Don't be angry with him." He is the one who said, "I don't want to turn into one of those disgusting teenagers, who curses and disrespects their parents."
He's the one who is this wonderful artist, this deep thinker, who always thinks outside of the box. He's the one who wrote this wonderful essay, Freaks Geeks & Aspergers about autism acceptance. He wrote this of his own volition, just a few weeks ago, and read it on the P.A. system for the entire school to hear. He is the one who gets notes sent home about what a wonderful student he is...what a great leader he is.
And yet...right now he is in such pain that it's palpable. He's falling apart, yet he's wound up tight, like a sling shot. He clenches his fist ...his body trembles with anger. He's a stick of dynamite with a short fuse.
So...I speak softly. I indulge him. I try to make him more comfortable in his own skin. I attempt to surround him in a protective bubble, keeping him away from the triggers as much as possible. It's a lot of work! And it's feels like all for naught.
I lay in bed next to him...trying to massage the stress away with lavender oil and a soft voice of reassurance. He turns around and starts biting the sheets, to show me, 'What you are doing is not working. Just leave me the fuck alone! I'm miserable! And you can't rub it away with lavender oil or Gaba cream!'
"I'm working on getting you a new therapist who really knows Aspergers," I say.
"I can't do it! I can't do anything. It won't work. I can't start anything new right now. I'm tired of this. I'm tired of feeling this way. Nothing helps! I want to feel better now!"
And with that...the tears well up within me.
"I just need to be locked away from people! I can't go to school like this!" he says.
That's it. The tears stream down my face. I loose my voice. I can not speak.
I hug him. He feels my tears on his shoulder.
"Don't cry mom. I don't want you to cry. Why are you crying?"
"I just want to make this better for you and I don't know what else to do."
He can't handle my emotion. I can't control it, although I try.
He asks for his father. He needs someone who will stay in control right now. He needs someone to help him understand, Why in the heck is mom crying?
I am crying because in this moment...I feel the loss of the dream. The dream that he is the one. The one who doesn't have the problems like his brothers. Red -with his autism, anger, outburst and difficulty with school. Slim -with his anger intelligence, and dumb life choices.
But alas Blue is not perfection personified. He is human. He has autism, anger and anxiety. He is a teenager and he's got crap to deal with just like the rest of us.
As I tell him, I also have to remind myself...
This will get better.
I don't have the magic answer
I can't snap my fingers and make this all go away.
It's not the loss of the dream.
It's just life.
It's a dream deferred.
________________________________
Editorial note:
Today, I'm supposed to be posting this dynamic piece about I.E.P's that one of my Asperger Mom pals from my Confessions Facebook Community wrote for us. Only...I can't focus long enough to edit it and get it up on the blog. I needed to vent today. Look out for this article, full of helpful hints on Monday. That is...unless all hell breaks loose before then.
You see...his light shines so brightly. There is so much intelligence and so much love in his heart, so much kindness and yes...empathy. He is the one who I KNOW for sure will be all he can be. He is the one with the internal motivation. He is the one who wants so much to help others. He is the one who already has goals of getting a Masters Degree and maybe a Ph. D. I mean who talks about that when they're 12?
He is the one who use to be the attorney for his brother, when he was acting out. "Mom he doesn't mean that. He's just trying to... Don't be angry with him." He is the one who said, "I don't want to turn into one of those disgusting teenagers, who curses and disrespects their parents."
He's the one who is this wonderful artist, this deep thinker, who always thinks outside of the box. He's the one who wrote this wonderful essay, Freaks Geeks & Aspergers about autism acceptance. He wrote this of his own volition, just a few weeks ago, and read it on the P.A. system for the entire school to hear. He is the one who gets notes sent home about what a wonderful student he is...what a great leader he is.
And yet...right now he is in such pain that it's palpable. He's falling apart, yet he's wound up tight, like a sling shot. He clenches his fist ...his body trembles with anger. He's a stick of dynamite with a short fuse.
So...I speak softly. I indulge him. I try to make him more comfortable in his own skin. I attempt to surround him in a protective bubble, keeping him away from the triggers as much as possible. It's a lot of work! And it's feels like all for naught.
I lay in bed next to him...trying to massage the stress away with lavender oil and a soft voice of reassurance. He turns around and starts biting the sheets, to show me, 'What you are doing is not working. Just leave me the fuck alone! I'm miserable! And you can't rub it away with lavender oil or Gaba cream!'
"I'm working on getting you a new therapist who really knows Aspergers," I say.
"I can't do it! I can't do anything. It won't work. I can't start anything new right now. I'm tired of this. I'm tired of feeling this way. Nothing helps! I want to feel better now!"
And with that...the tears well up within me.
"I just need to be locked away from people! I can't go to school like this!" he says.
That's it. The tears stream down my face. I loose my voice. I can not speak.
I hug him. He feels my tears on his shoulder.
"Don't cry mom. I don't want you to cry. Why are you crying?"
"I just want to make this better for you and I don't know what else to do."
He can't handle my emotion. I can't control it, although I try.
He asks for his father. He needs someone who will stay in control right now. He needs someone to help him understand, Why in the heck is mom crying?
I am crying because in this moment...I feel the loss of the dream. The dream that he is the one. The one who doesn't have the problems like his brothers. Red -with his autism, anger, outburst and difficulty with school. Slim -with his anger intelligence, and dumb life choices.
But alas Blue is not perfection personified. He is human. He has autism, anger and anxiety. He is a teenager and he's got crap to deal with just like the rest of us.
As I tell him, I also have to remind myself...
This will get better.
I don't have the magic answer
I can't snap my fingers and make this all go away.
It's not the loss of the dream.
It's just life.
It's a dream deferred.
________________________________
Editorial note:
Today, I'm supposed to be posting this dynamic piece about I.E.P's that one of my Asperger Mom pals from my Confessions Facebook Community wrote for us. Only...I can't focus long enough to edit it and get it up on the blog. I needed to vent today. Look out for this article, full of helpful hints on Monday. That is...unless all hell breaks loose before then.
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