He belongs to a very small church that he found through one of his friends. He has become close to the Pastor and even calls him up when he's going through a really rough day. Talking to his Pastor seems to soothe him. He listens and calms down ...at least for the short run. He also attends a youth group at his friend's church on Wednesday nights. It's a little more lively with more teens than his own church. He really seems to enjoy it. But no sooner than he crosses our threshold, does everything he learned at church seem to fly out the window.
He is no longer isolated in a behavior program. This school year, we are giving him even more flexibility to have lunch in the cafeteria and roam the hallways, being shadowed by staff and administration. They all know him by name and their eyes are always open. He is a big tall, good looking black dude in a sea of mostly white and brown. He does stand out in a crowd. That has always been the case in whatever school he's been in. He is popular alright...but not in the way he would like to be.
Red has this pattern of thinking, perseveration and fixation right now on a particular group that he would like to become a part of. Even more in particular, there are a couple of young ladies in this group that he thinks are the only "hot girls" on the planet, even though I have pointed out several others who he agreed were attractive. "I want to be popular!" he yells at me, as if I can make that magically happen in an instant. Even though I have talked to him till I'm blue in the face (and that's a feat because I'm black) about how interpersonal relationships work. Even though, his Pastor has talked to him, his brother, my nephew, his father, his uncles, his cousins...he remains stuck in his out of touch with reality thinking. He even said to me, "Everyone keeps telling me the same thing. I'm beginning to think I'm the only one who thinks this way." YA THINK! He is so not ready for a male/female interpersonal relationship, even though that's all he can think about. He doesn't have a clue about how they really work.
One of his good friends who is also on the spectrum, is affiliated with this group, but it's more of a "on the surface" affiliation. This friend of his is just a friendly person. He says, "What's up?" to damn near everyone and a lot of people know who he is, partly because of his friendliness, but also because his family is well known in the community. It doesn't mean he has deep, meaningful relationships with all of these people.
Whatever the case may be...Red has his focus on this group to the point of blindness. I tried to illustrate this to him by putting a solid book in front of his eyes and asking, "Can you see everything that's going on in the room?"
"No."
"Well...this is what you're doing by focusing on this group. You can't see all of the other people around you who you could be connecting with. People who you actually have more in common with. People who will like you for exactly who you are."
I may as well have been talking to that book. He didn't hear me any more than the book did...at least not enough to change his rigid thinking.
He can not see all of the opportunities to meet and become friends with people whom he could have more meaningful relationships. He wants what looks good to him on the surface. The blindness extends to not even seeing what he already has, in the couple of close friends. He doesn't seem to soak it in and feel the blessing of it, because he is too busy yearning for what he doesn't have. It has to be an extremely frustrating head-space to be in --to never, ever (well hardly ever) be satisfied or happy with what you have.
We at home get to deal with the brunt of that frustration. He is angry, agitated, argumentative, annoying, irritable...combustable. It's like he wants to share the love of his misery with all of us. NO ONE in the house has the patience for him or what he is going through right now. I feel like the chief-referree of all fighting...constantly running interference, trying to keep everyone from blowing their top. Meanwhile...I'm loosing it! I can't keep the wine flowing fast enough!
I try my best to keep it calm with him. I try to use the extremely low, calm voice to get his attention and often take him out of a hot bed situation. But I can only stay calm for so long. I feel like a rat trapped in a maze...of craziness and I can't find my way out. It's not a fun way to live...AT ALL.
I am working on getting him into the right therapist. We had an emergency session with his Psychiatrist today. She believes everything we are seeing now is behavioral ...not chemical. So, I'm off to get him into the right therapist, which of course is not on our insurance plan, so I have to go through a few hoops to make it happen.
I used to look forward to aging. I wasn't afraid of heading towards my late 40's and 50's. Age does have some benefits. I definitely am more comfortable with who I am and I will be damned if I let the opinion of others change me. I know what makes me happy and I will not give up on the few things that I have that give me happiness. However, I thought age would mean that I would be closer to the finish line of raising these kids. I thought...as they get older, become teenagers heading into adulthood, I will have to do less and less for them. This will mean I'll have more time for myself. I couldn't have been more wrong.
Do you feel 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
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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