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Weekly Meal Prep |
It was toxic when we lived under the same roof. He could not get along with anyone in our family. Even the dog would run and hide when he saw him coming. He was unhappy and he felt he had the right to constantly disrupt any semblance of peace. He was miserable and determined to take us all down with him. There was constant turmoil and if there wasn't, I was sitting on the edge of my seat waiting for the next bomb to drop. Our home was not the haven. It was the storm.
Intellectually, I know it’s not my fault that he lives in a group home and not in a dormitory or a cool little apartment somewhere. It’s not anyone’s fault. It just is, what it is. This is his path.
We gave him every possible opportunity to choose another path. He wasn’t capable of doing that. He sees me as an extension of himself. As long as I am within arm's reach, and eye's view, he would prefer that I do the work to help him grow up. The distance between us has given him no choice but to do the work for himself.
He liked the group home at first. Then he hated it, and now, he is somewhere in-between. It's definitely is not the comfort zone of the cushy home he grew up in. However, his discomfort there is making him grow. Whereas the comfort here with his mama at his beck and call, was keeping him stagnate.
Sometimes it almost like the universe has to take these drastic measures to make me do the hard thing for these boys. I am resistant to making the tough decisions. I want to coddle and comfort when what they need is a little discomfort so that they can grow. They need that gentle push out of the nest so that they can fly.
It’s been almost a year now, and Red has grown. I've written in detail about his progress. He's not driving yet, but he is beginning to fly.
He is still not quite where he needs to be in order to live totally independently, but he has maintained employment for almost 3 years now. However, he doesn’t have enough income to live on his own. He still requires assistance with budgeting, transportation, remembering to take meds, remembering to wash his clothes, change his sheets, and things of that nature in a timely manner.
He is still not quite where he needs to be in order to live totally independently, but he has maintained employment for almost 3 years now. However, he doesn’t have enough income to live on his own. He still requires assistance with budgeting, transportation, remembering to take meds, remembering to wash his clothes, change his sheets, and things of that nature in a timely manner.
When he lived with me, I was never sure if he would remember to actually lock the front door every time he left the house. He can be so forgetful and absent-minded at times. (I have no idea where he gets that from. I'm not forgetful at.all.) There were and still are, a few things that make me wonder if he is ready to live outside of a supported environment.
I opt out of the dozens of panicky phone calls that I can get from him on a daily basis. I know that his complaints are not anything new. He is only allowed a maximum of two phone calls to me per day. Every since the group home changed management, he has been complaining.
One night, he made his last acceptable call to me at 6:30 p.m. instead of the usual 8:30. I answered, "Last call for alcohol!" He laughed but sure enough, later he would call again.
One night, he made his last acceptable call to me at 6:30 p.m. instead of the usual 8:30. I answered, "Last call for alcohol!" He laughed but sure enough, later he would call again.
I don't take his superfluous call. When I don't answer, he calls his father. Eventually, he asks to speak to me again. The answer is still, no. We are done talking for the night. I knew that all he wanted was to complain about what they "might do" at the group home. The infamous, "What if's?"
When he first moved, the home was operating in more of an independent style which suited him. He was used to a certain amount of autonomy at our house. We had been working on independent living skills over the past several years. He knew how to cook for himself (although he didn't like to). He was responsible for his own laundry, keeping his room and his bathroom clean. He would go out with friends to church, to the movies and things like that.
The agency that was initially running the house when he moved in, ended up acquiring additional group homes. Subsequently, over the past few months, they have transferred the management of the home where Red lives to another division of their agency. The new management has been making changes to the program. They are trying to get things in order to meet State guidelines.
The proposed changes, like doing an in-house day hab, are putting Red into a panic. He is used to his schedule. He’s used to his routine and doesn’t want anyone coming in and messing with it. He’s goes to school, then to work at the gym. He does his workout afterwards. He goes to church on Wednesday nights and Sundays, and occasionally he gets together with friends for the movies and other recreational activities.
I am actually proud of the fact that he keeps his schedule pretty busy and takes initiative to get together with friends when he has free time. That is something he would not do when he lived here. He would just sit around complaining, waiting for his very few friends to make plans with him.
He’s beginning to get angsty with the changes that are being put in place, even though most of them won’t really effect him because he already has such a busy schedule. He is functioning well and his goals are not the same as some of his roommates. This doesn't stop all the "What if" questions.
“What if they say I can’t cook my own meals now?”
“What if they start making me eat their high fat, high-salt, unhealthy menu?"
“What if they say I can't work out after work!”
“I’m not doing this!”
“They are trying to take away my rights! I am adult! They can’t control me!”
“I’m not some helpless kid they can push around!”
Naturally, his anxiety sparks my anxiety. It doesn’t take much for me to start worrying. I’m really good at it. I start thinking, What are we going to do next? How much longer is this situation going to continue working for him?
Of course, he takes anxiety to a whole new level. Then he becomes increasingly defensive, angry and defiant.
Of course, he takes anxiety to a whole new level. Then he becomes increasingly defensive, angry and defiant.
I don’t think the new staff are used to a consumer who is quite so independent, vocal and articulate about his wants and needs. He is not the one (just like his mama) who goes along with the program, especially if the program doesn’t make any sense to him.
A few weeks ago, after a heated exchange between Red and a Case Manager he was told, “Maybe you shouldn’t be here if you’re so independent.” Yeah! She actually went there.
A few days later, we ended up having a meeting with the Area Director of the agency. He assured us that the staff member needed some additional training and should never have used those words. He assured us that none of the things Red was worried about were going to happen. He said they would find a way to make things work. They would set his goals for independence in preparation for his moving forward into a more independent living situation within the coming year.
The latest panic phone calls were about him using Lyft from the group home when no one there is willing to give him a ride to go to church or to go hang out with friends or his new girlfriend. (Yes. There is a new girlfriend. That’s a whole other blog.) He uses the money from his paycheck to pay for this additional transportation, since he doesn't drive yet.
He says, his Case Manager told him that he can't use Lyft. They have to know who he is leaving with, do a background check.
Now, let’s think about that for a second. If he were to get on a city bus, would they background check every driver?
Currently, he goes from school to work and to work out. This is essentially an 8 hour day that he is managing on his own. If he gets off early he could walk or meet up with a friend to do whatever he wants and they would have no idea who he is with or what he is doing. So really? What is the problem here?
We don't have many busses in this area. Using Lyft in my opinion, is a great independent living skill. He had been using an inexpensive Taxi service. When I found out that Lyft operated in our area, and was less expensive, I suggested he try it. Blue is only 17 and he uses it, when I'm not available.
Over time I have found that when I don't accept one of his calls when he is upset, often by the time he calls again he has either forgotten about the problem, or he has resolved it.
This time, it turns out that he called the state 800 number for the State of Texas agency that supervises group homes, to advocate for his perceived rights violations. I don’t think this was the first call to them (which I'm sure is not thrilling to the managing agency).
He told me that the state told him that he had every right to use Lyft. All of the other concerns he had, like they were not buying his protein and vegetables because he wasn't eating from their menu, was also resolved. The State would be contacting group home management about his rights to ensure they are not being violated.
Currently, he goes from school to work and to work out. This is essentially an 8 hour day that he is managing on his own. If he gets off early he could walk or meet up with a friend to do whatever he wants and they would have no idea who he is with or what he is doing. So really? What is the problem here?
We don't have many busses in this area. Using Lyft in my opinion, is a great independent living skill. He had been using an inexpensive Taxi service. When I found out that Lyft operated in our area, and was less expensive, I suggested he try it. Blue is only 17 and he uses it, when I'm not available.
Over time I have found that when I don't accept one of his calls when he is upset, often by the time he calls again he has either forgotten about the problem, or he has resolved it.
This time, it turns out that he called the state 800 number for the State of Texas agency that supervises group homes, to advocate for his perceived rights violations. I don’t think this was the first call to them (which I'm sure is not thrilling to the managing agency).
He told me that the state told him that he had every right to use Lyft. All of the other concerns he had, like they were not buying his protein and vegetables because he wasn't eating from their menu, was also resolved. The State would be contacting group home management about his rights to ensure they are not being violated.
I would venture to say, he has this whole self-advocacy skill in check.
p.s. -We are looking into other living options, but nothing happens fast enough for him.
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