When I wake up each morning, I try to have a game plan for my day. Giving my son a ride to campus twenty miles away was not a part of my plan. I told him I would not be involved in his daily transportation when he registered for these classes months ago. It's a daily piece of friction that neither of us needs.
After the week that I’ve had with him when he persisted, asking me more than once, and then he threw in the extra part about having a test today and not wanting to be late for it, I agreed to take him. A decision I almost immediately regretted.
You know that feeling in your gut when you say yes when you mean really mean no? That feeling is getting bigger lately. My body is no longer giving me a pass on going against my gut. Every fiber of my being tells me, this is wrong. This is not serving you. What’s more, it isn’t serving him on his journey to adulthood. Doing things for him that he should be doing for himself
I found myself on the road this morning so angry with him and with myself. I could hardly see straight. This is definitely not healthy for either one of us. I dropped him off without speaking too many words (aloud). There was plenty of cursing inside my head.
I made it to yoga class but found my frustration hidden in the corners of every quiet space.
My dear friend Rebecca |
It wasn’t until I sat down to write at the library that I found a little relief. I texted my friend Rebecca (lovebecca.com) my very wise younger friend. She reminded me of something that my therapist has been working on with me for months. “Forgive yourself. Show yourself some grace."
I'm doing my best on any given day. Tomorrow I’ll do even better. One thing for sure is I can’t give up, or give in. Every single thing that happens on this journey is teaching me something. Total course correction is not going to happen overnight.
My "yes" today came behind what was already not a good week with him. There was an ugly meltdown with some serious implications. He had to leave the house and wasn’t allowed to return for the night. Luckily, we have a neighbor and friend who was gracious enough to allow him to spend the night in her home. Things are getting to the point where I know for sure, that he is going to need to live away from me sooner than later.
Unfortunately, it seems like our relationship is a trigger for him. Hopefully living away from each other will help reduce these incidents. I just don’t know where he can go at this point. He will not qualify for some of the same programs we used for his brother.
Autism meltdowns are ugly. Autism combined with a mood disorder can be a nightmare. Blue is nineteen. Some of the behaviors that occur during a meltdown could get a person into legal problems if they occur in an uncontrolled environment.
Where is the line? What is he in control of? What can we do to stress to him, this behavior could cause you big problems? He is a male. He is black. If law enforcement gets involved in any way, will they have the proper training to realize that this is a neurological and mental health issue? We’ve been there before. I don’t trust law enforcement.
Where is the line? What is he in control of? What can we do to stress to him, this behavior could cause you big problems? He is a male. He is black. If law enforcement gets involved in any way, will they have the proper training to realize that this is a neurological and mental health issue? We’ve been there before. I don’t trust law enforcement.
If you’re lucky, you end up in the hospital and not in jail. Will the hospital really help you? Or will they try some new med that makes matters worse? It's a coin toss. Who wants to toss their kid into a mental health ward?
Both boys seem to see me as an extension of themselves ...like I’m either the other half of their brain, their legs, or their arms or one of their feet. They don’t believe they can operate without me. If something goes wrong in their lives, surely it must be because I’m not doing my part.
Kendal doesn’t live at home but in this transition to living with his older brother, he reaches back to me more and more, obsessively, compulsively.
As Blue goes through his transition, it feels like he didn’t get the memo that my role in his life has changed. He is an adult who is primarily responsible for himself. He still has this natural inclination to call on me to do things that I did for him as a child and yet he wants the autonomy of being an adult.
At least once a week he says to me, “Why is everything about responsibility with you?”
My question is, “Why isn’t anything about responsibility with you?”
The mental energy that I spend just trying to maintain boundaries is exhausting. The more I draw the line for my time and availability, the harder they push the boundary with phone calls, text messages, and requests. If I give them an inch, they run me over with a truck.
It makes me want to run and hide. When they were younger, I would hide in the bathroom, just to center myself. I would play on my phone, read a blog or chat with some of my autism mama friends who understand and make me feel less alone ...less crazy.
Today it feels like I need much more than a bathroom between us. I need my own apartment, without a forwarding address, and a new unlisted telephone number. Either that or the last adult child in the house needs his own place.
There are too many questions and not enough answers. Add on my irrational, sometimes incapacitating anxiety and forward movement feels next to impossible. There is no choice but to keep it moving.
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 · 121 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