The road to adulthood is long and hard. The transition to middle school was not easy, but we made it. High school was pretty god-awful. We've had a transition to adulthood plan in the works for a few years now for Red. I wrote about this Transition to Adulthood Plan not long after graduation. All I can say is boy, was I naive. This shit is hard!
Red has been holding the same job for 8 months now. That is huge! He still loves it and they seem to love him. There have been zero incidents at work. Zero. He has been on time everyday, with the exception of the school bus being late once. He handled that responsibly by calling in to let his supervisor know what was going on. He has never missed a scheduled day. Once, recently he decided he wanted the day off to go to Six Flags with his girlfriend. He used the employee scheduling text message system to find someone to cover his shift ahead of time.
One of the issues that I am seeing recently, is that he seems to be getting up later and later to catch his ride to work. As in, literally 5 or 10 minutes before they get here is when his feet finally hit the floor. He is also back to needing a couple of prompts in order to get up.
If you get up only a few minutes before your ride, you can't possibly do everything you're supposed to do to with your hygiene before leaving the house. You don't have time to eat. There has been a time or two that he has gone out without taking his meds. He usually catches his ride by the skin of his unbrushed teeth. All of these are independent living skills that he will need if he ever wants to live on his own and actually to be able to maintain employment or go to college. I won't be around to prompt him for the rest of his life. I can't come to his rescue when he forgets his meds. Again ...his motivation needs to be internal, as it is when he gets up for church every Sunday morning (zero prompts).
We still encounter pretty awful behavior here at home. Our biggest issues are boundaries, plain old rudeness and disrespect. Of course, all of this is everyone else's fault. We all need to change and stop "pissing him off." He is the person who sings loudly when others are sleeping, watching television, working or studying, but WE all need to change and stop "pissing him off!" For the most part, the outside world does not see this ugliness. It is reserved especially for those of us who love him and provide a safe place to lay his head every night.
Another thing that has improved, is the actual fighting with Blue. (Instead he fights with my mom, who will NEVER back down by the way). Blue has softened just a little bit and doesn't accept every invitation to fight (unlike my mom). Blue has become more willing to engage with Red in some positive ways. They occasionally play games together. Sometimes, they may watch videos on You-tube or maybe even a movie together.
What's next?
I have been looking into various Adult Transitional Living programs for adults with autism, Americorps, Minnesota College of Life, etc. The feedback that I have received is that since he is 18, and his own legal guardian, he must to be 100% willing to participate. He must be self-motivated, free of aggressive or threatening behavior, able to get along with others in a living environment, be able to and willing accept direction.
He is not demonstrating any of this at home currently. One intake counselor said to me, "If he can't get along with his 4 family members, how do we expect him to get along with a larger group of strangers?" Well, the truth is that he is usually better with strangers than he is with us! Of course there are no guarantees that this behavior won't transfer in another living environment.
The word I've been getting from admissions counselors is, "Why don't you keep in the 18 plus program through the school district as long as possible, so that he can do some maturing? There is nothing as intensive as the services that the school district provides ...for free." He is receiving transportation to work through the school district. He gets job coaching, social skills training, life management, Occupational therapy and person centered planning, which is great! The problem is ...none of this gets him out of my house or away from his dependence on me. Not to mention his sort of obsession with getting my undivided attention all.of.the.time!
I am still in the process of getting him connected with our local department of Mental Health agency for autism support services. They can help with community support, counseling, supportive housing (group homes) and several other services. This is all great however, dealing with any agency that is funded by the government is always a slow, arduous process. After our initial intake meeting with them over 2 months ago, we finally have a psych evaluation scheduled next week. He will need that before he can move into any supportive living arrangement.
I am also working on getting him connected with DARS (Department of Rehabilitative Services). We finally have our second meeting with them at the end of this month. (As I said, slow and arduous.) They will hopefully help pay for some of his education, training, therapy and quite possibly independent living services needed in order to obtain and maintain full-time work, which he says is his ultimate goal.
Meanwhile, we deal with excessive behavior caused by his severe anxiety because of the uncertainty of everything that he is facing in this transition. He has to make a decision about college or trade school. Where will he end up living? He's still looking into driving, but afraid of the costs and the responsibility that comes along with that. Of course, he is also learning financial responsibility as an adult. Period. OMG! He will he not be able to buy everything that he wants, the second he wants it! Will he have to struggle like every young adult does while they are getting their education and finding their way in life? This will be surely be tragic! Unimaginable!
Oh and of course, the dreaded trying to run a video editing business, with plenty of talent but absolutely no clue about expenses, profit and loss and record keeping. In other words, he is trying to run a business with no idea how business ACTUALLY works! He is fixating more than ever on what the next gadget is that he needs to buy, in order to make this business a success! Because equipment is like magic! It will help you "look more professional and be able to charge more money."
Even though he is getting support from his job coaches, his Occupational Therapist and Ms. E. one of his old high school teachers, who comes here to work with him on his business ...none of them know what they are talking about! We are all just conspiring to not let him spend all of his money!
On progress...
As I said, he has been holding this job for 8 months now. When he got his first paycheck, he was furious with me when I made him take money out of he bank to pay for his own expenses, such as eating out, transportation and entertainment. Now that he is receiving SSI, his Occupational Therapist has helped him set up a budget. He is buying his own groceries (specialty items) that the rest of us don't eat. He pays for all of his entertainment, eating out and dating (yes...6 months later, he still has a girlfriend). He is also paying rent!!! I've been working with him for 3 months on balancing his checkbook and keeping up with his spending.
Just the other day, he took out his checkbook on his own, balanced it and wrote out a check for his rent with zero prompts! Then he went to take a shower. And then I passed out from shock!
The struggle is real folks. There are so many steps on the road to independence, I must admit, I was extremely naive about how much work this is. Not to mention, how much anxiety and behavior we would have to deal with as a result. I really feel like this is the hardest stage of life yet.
There is however, incremental ...progress.
p.s. I appreciate your comments. I really do. Helpful suggestions are always welcome. However ...if you just want to tell me how I'm doing this all wrong, send me a direct message. I will then send you my address so you can come and let Red live with you!
Red has been holding the same job for 8 months now. That is huge! He still loves it and they seem to love him. There have been zero incidents at work. Zero. He has been on time everyday, with the exception of the school bus being late once. He handled that responsibly by calling in to let his supervisor know what was going on. He has never missed a scheduled day. Once, recently he decided he wanted the day off to go to Six Flags with his girlfriend. He used the employee scheduling text message system to find someone to cover his shift ahead of time.
One of the issues that I am seeing recently, is that he seems to be getting up later and later to catch his ride to work. As in, literally 5 or 10 minutes before they get here is when his feet finally hit the floor. He is also back to needing a couple of prompts in order to get up.
If you get up only a few minutes before your ride, you can't possibly do everything you're supposed to do to with your hygiene before leaving the house. You don't have time to eat. There has been a time or two that he has gone out without taking his meds. He usually catches his ride by the skin of his unbrushed teeth. All of these are independent living skills that he will need if he ever wants to live on his own and actually to be able to maintain employment or go to college. I won't be around to prompt him for the rest of his life. I can't come to his rescue when he forgets his meds. Again ...his motivation needs to be internal, as it is when he gets up for church every Sunday morning (zero prompts).
We still encounter pretty awful behavior here at home. Our biggest issues are boundaries, plain old rudeness and disrespect. Of course, all of this is everyone else's fault. We all need to change and stop "pissing him off." He is the person who sings loudly when others are sleeping, watching television, working or studying, but WE all need to change and stop "pissing him off!" For the most part, the outside world does not see this ugliness. It is reserved especially for those of us who love him and provide a safe place to lay his head every night.
Another thing that has improved, is the actual fighting with Blue. (Instead he fights with my mom, who will NEVER back down by the way). Blue has softened just a little bit and doesn't accept every invitation to fight (unlike my mom). Blue has become more willing to engage with Red in some positive ways. They occasionally play games together. Sometimes, they may watch videos on You-tube or maybe even a movie together.
What's next?
I have been looking into various Adult Transitional Living programs for adults with autism, Americorps, Minnesota College of Life, etc. The feedback that I have received is that since he is 18, and his own legal guardian, he must to be 100% willing to participate. He must be self-motivated, free of aggressive or threatening behavior, able to get along with others in a living environment, be able to and willing accept direction.
He is not demonstrating any of this at home currently. One intake counselor said to me, "If he can't get along with his 4 family members, how do we expect him to get along with a larger group of strangers?" Well, the truth is that he is usually better with strangers than he is with us! Of course there are no guarantees that this behavior won't transfer in another living environment.
The word I've been getting from admissions counselors is, "Why don't you keep in the 18 plus program through the school district as long as possible, so that he can do some maturing? There is nothing as intensive as the services that the school district provides ...for free." He is receiving transportation to work through the school district. He gets job coaching, social skills training, life management, Occupational therapy and person centered planning, which is great! The problem is ...none of this gets him out of my house or away from his dependence on me. Not to mention his sort of obsession with getting my undivided attention all.of.the.time!
I am still in the process of getting him connected with our local department of Mental Health agency for autism support services. They can help with community support, counseling, supportive housing (group homes) and several other services. This is all great however, dealing with any agency that is funded by the government is always a slow, arduous process. After our initial intake meeting with them over 2 months ago, we finally have a psych evaluation scheduled next week. He will need that before he can move into any supportive living arrangement.
I am also working on getting him connected with DARS (Department of Rehabilitative Services). We finally have our second meeting with them at the end of this month. (As I said, slow and arduous.) They will hopefully help pay for some of his education, training, therapy and quite possibly independent living services needed in order to obtain and maintain full-time work, which he says is his ultimate goal.
Meanwhile, we deal with excessive behavior caused by his severe anxiety because of the uncertainty of everything that he is facing in this transition. He has to make a decision about college or trade school. Where will he end up living? He's still looking into driving, but afraid of the costs and the responsibility that comes along with that. Of course, he is also learning financial responsibility as an adult. Period. OMG! He will he not be able to buy everything that he wants, the second he wants it! Will he have to struggle like every young adult does while they are getting their education and finding their way in life? This will be surely be tragic! Unimaginable!
Oh and of course, the dreaded trying to run a video editing business, with plenty of talent but absolutely no clue about expenses, profit and loss and record keeping. In other words, he is trying to run a business with no idea how business ACTUALLY works! He is fixating more than ever on what the next gadget is that he needs to buy, in order to make this business a success! Because equipment is like magic! It will help you "look more professional and be able to charge more money."
Even though he is getting support from his job coaches, his Occupational Therapist and Ms. E. one of his old high school teachers, who comes here to work with him on his business ...none of them know what they are talking about! We are all just conspiring to not let him spend all of his money!
On progress...
As I said, he has been holding this job for 8 months now. When he got his first paycheck, he was furious with me when I made him take money out of he bank to pay for his own expenses, such as eating out, transportation and entertainment. Now that he is receiving SSI, his Occupational Therapist has helped him set up a budget. He is buying his own groceries (specialty items) that the rest of us don't eat. He pays for all of his entertainment, eating out and dating (yes...6 months later, he still has a girlfriend). He is also paying rent!!! I've been working with him for 3 months on balancing his checkbook and keeping up with his spending.
Just the other day, he took out his checkbook on his own, balanced it and wrote out a check for his rent with zero prompts! Then he went to take a shower. And then I passed out from shock!
The struggle is real folks. There are so many steps on the road to independence, I must admit, I was extremely naive about how much work this is. Not to mention, how much anxiety and behavior we would have to deal with as a result. I really feel like this is the hardest stage of life yet.
There is however, incremental ...progress.
p.s. I appreciate your comments. I really do. Helpful suggestions are always welcome. However ...if you just want to tell me how I'm doing this all wrong, send me a direct message. I will then send you my address so you can come and let Red live with you!
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