Look. I get it. Four years later —you’re sick of my son. He’s combative and
argumentative. He can be straight out rude when all you’re trying to do is help him. He will argue with you the whole time that he's doing exactly what you're asking him to do, but it's still a time destroyer and a major energy drain.
Guess what? Twenty-two-years-later, I’m sick of him too.
Don’t get me wrong. I am your biggest fan. I appreciate the work you have done with him. While he was no picnic, you have always had his best interests at heart. You have worked with him patiently, with love and kindness. You have carried him a long way from where he was at the age of 18 when he entered your program. A program by the way, that I thought he didn't need, but I let go of my ego and pride and did what was best for him.
We all know that behavior is communication. Okay, I’ll admit some of his behavior is just pure asshatery. What can I say? He’s a dude. He’s 22 and full of testosterone. He hasn’t had a real girlfriend yet (if you know what I mean...wink wink).
However, most of his behavior is based on autism, lack of filter, fear, anxiety, and self-loathing. His fear is based on the unknowns of exactly what the next chapter of his life will look like. Most of his anger is because of mood dysregulation. Also, he doesn’t really like himself. He doesn't even fully appreciate the gorgeous body he has sculpted and developed through weight-lifting and a healthy diet. The kid dropped 100 pounds and he still focuses on his problem areas and why he's just not good enough.
He is quite aware that he is different and has always been treated that way by many of his peers. He has insecurities because things that are simple for others are quite difficult for him. He still deals with the trauma of his entire high-school experience.
I’m sure you know how much our experiences in middle and high school can affect us for the rest of our lives. I still remember the names they used to call me. I think I finally started to get over high- school in my forties. I finally realized exactly who I am, authentically. Screw those high-school bitches who were insecure and tried to make me feel the same.
Okay. You are tired of trying to help him. I’m tired of trying to help him. You’re tired of his entitled, unappreciative attitude. I’m sick of it too. You've had enough of his endless rants about why everything in this world sucks. I’m actually like, way beyond sick of it.
The difference between us? I don’t have the option of being done with him. There is no option of giving up. My time with him doesn’t expire at the end of this school year. I have a lifetime commitment here.
I pray every day that eventually he will meet the wonderful open-hearted woman of MY dreams who will love him and put up with his shit for the rest of her life. But based on his behavior right now, that seems like a long shot. For now, it’s me. I am his person. He has his father, his brothers and a few good friends, but I am the bank in which he deposits of all of his worst crap.
So recently your team came up with this job option for him that I didn’t feel was workable. Frankly, there were red flags all over it. You’ll have to forgive me for speaking up and saying, “No that’s not going to work.” Actually, you don’t have to forgive me. That is my job.
You see, I would be on the receiving in of the middle of the night phone calls when the shit hits the fan. His father and me, we pay the legal bills, and the hospital bills when he falls apart and has a major meltdown.
According to what I read about this job and this particular moving company (Yes. I vetted them by doing my own research. Actually, my son did the same. Only he doesn't always make the best decisions and look at the whole picture. ) Money is his motivation. My motivation is his overall mental health. He has had friends who have worked for this company and they did not have anything pleasant thing to say about the experience.
Let's make a list of the red flags:
There are so many things that need to be taken into consideration before we throw a boy with autism, ADHD and mood disorder, into the fire of a job that is a pure set up for failure. He has two part-time jobs currently. Is either of them the ideal situation? No. Sometimes they change or cut back his hours. But for the most part, these two jobs are working for him so far. And mind you …he has those two jobs because I insisted that he fill his time constructively.
I would love to see him in full-time employment and have him live on his own, but he is showing me in more ways than one lately, that he is not ready for all of that. He will get there but he’s not there. It’s quite frustrating and disappointing for all of us.
I felt a subtle insinuation from our recent text messages and e-mail threads, that you and frankly other professionals, who work with him think that maybe I am too “overprotective.”
"We just need to let him feel the “natural consequences of his actions. Let's just see what happens." Sink or swim. Throw him into the deep water. He's a man after all!
Well, he gets plenty of natural consequences. Trust me. However, as his mother, I can not and will not throw him into a situation that is not healthy for him if I can help it. He has enough of that in his life already.
I mean do you think I want him living in a group home? Hell no! I don’t. But it was a boundary issue for us and an excruciatingly tough decision that had to be made, both for my mental health and his. The experience of living there has been a cross between hell and life on earth, but he is growing despite the less than ideal environment. The staff and their program at the group home really suck eggs. They don't get paid well and you can tell by the job they do.
Fortunately, he knows how to speak up for himself and he has his father and me to continually advocate for him. God always seems to put other positive resources into his life, like you have been to him over the past several years. I can’t be all things to him that he needs. It really does take a village to raise a difficult child. I will continue to be as much to him as I humanly can, until the time that I leave this earth. And at this rate, it may be sooner than later.
Meanwhile, I will continue working to maintain boundaries with my son. I will continue to protect and nurture myself, while always trying to do what is best for both of my young adult children.
Have I mentioned that I have another high-maintenance son with a whole additional set of transition issues going on at the same time? My life is a real recipe for nut soup.
Yes. I want him to work. He thrives in a work environment more than any other place. Yes. I want him to be as independent as humanly possible and not just sit around taking handouts from the government because let’s face it, they suck too.
You’re going to have to trust that I know what’s best for him, despite the deadline for your services. Luckily for you …you get to say goodbye to him in May. I can’t lie. I wish there was a deadline when I could say goodbye or at least farewell, see you next year. I'm still praying for that angel to come into his life and take over.
I am confident that together we will figure out a path to get my son through his last few months with you. We will set him up for the additional services and resources that he will need to get himself through to the next phase of his adult life.
Again, thanks from the bottom of my heart for all that you have done and continue to do for young adults with special needs in our community. Some things in life, just take longer than the designated time that you have to give them.
By the way, I have still have my insecure moments when I think I am doing this all wrong. But I know deep inside, I am one hell of a mother. I stand by all of my decisions, all of my actions and inactions, my protecting, advocating, my stepping up and stepping back, drawing boundaries and sometimes having them crossed.
I am doing the best that I can for a very difficult young man who will always be my child. A lot of mothers would have just walked away by now. Don’t think there are not days when I want to run screaming. But I’m still here and will be when you’re gone.
Sincerely,
Karen
p.s. You can tell from this post how much I like the word suck. :) Feeling a lot of suckiness lately.
argumentative. He can be straight out rude when all you’re trying to do is help him. He will argue with you the whole time that he's doing exactly what you're asking him to do, but it's still a time destroyer and a major energy drain.
Guess what? Twenty-two-years-later, I’m sick of him too.
Don’t get me wrong. I am your biggest fan. I appreciate the work you have done with him. While he was no picnic, you have always had his best interests at heart. You have worked with him patiently, with love and kindness. You have carried him a long way from where he was at the age of 18 when he entered your program. A program by the way, that I thought he didn't need, but I let go of my ego and pride and did what was best for him.
We all know that behavior is communication. Okay, I’ll admit some of his behavior is just pure asshatery. What can I say? He’s a dude. He’s 22 and full of testosterone. He hasn’t had a real girlfriend yet (if you know what I mean...wink wink).
However, most of his behavior is based on autism, lack of filter, fear, anxiety, and self-loathing. His fear is based on the unknowns of exactly what the next chapter of his life will look like. Most of his anger is because of mood dysregulation. Also, he doesn’t really like himself. He doesn't even fully appreciate the gorgeous body he has sculpted and developed through weight-lifting and a healthy diet. The kid dropped 100 pounds and he still focuses on his problem areas and why he's just not good enough.
He is quite aware that he is different and has always been treated that way by many of his peers. He has insecurities because things that are simple for others are quite difficult for him. He still deals with the trauma of his entire high-school experience.
I’m sure you know how much our experiences in middle and high school can affect us for the rest of our lives. I still remember the names they used to call me. I think I finally started to get over high- school in my forties. I finally realized exactly who I am, authentically. Screw those high-school bitches who were insecure and tried to make me feel the same.
Okay. You are tired of trying to help him. I’m tired of trying to help him. You’re tired of his entitled, unappreciative attitude. I’m sick of it too. You've had enough of his endless rants about why everything in this world sucks. I’m actually like, way beyond sick of it.
The difference between us? I don’t have the option of being done with him. There is no option of giving up. My time with him doesn’t expire at the end of this school year. I have a lifetime commitment here.
I pray every day that eventually he will meet the wonderful open-hearted woman of MY dreams who will love him and put up with his shit for the rest of her life. But based on his behavior right now, that seems like a long shot. For now, it’s me. I am his person. He has his father, his brothers and a few good friends, but I am the bank in which he deposits of all of his worst crap.
So recently your team came up with this job option for him that I didn’t feel was workable. Frankly, there were red flags all over it. You’ll have to forgive me for speaking up and saying, “No that’s not going to work.” Actually, you don’t have to forgive me. That is my job.
You see, I would be on the receiving in of the middle of the night phone calls when the shit hits the fan. His father and me, we pay the legal bills, and the hospital bills when he falls apart and has a major meltdown.
According to what I read about this job and this particular moving company (Yes. I vetted them by doing my own research. Actually, my son did the same. Only he doesn't always make the best decisions and look at the whole picture. ) Money is his motivation. My motivation is his overall mental health. He has had friends who have worked for this company and they did not have anything pleasant thing to say about the experience.
Let's make a list of the red flags:
- He would not know his schedule from day to day. (They call in the day before to see if they’re on the schedule). For a person who thrives on routine and knowing what to expect, constant schedule changes would suck.
- It's not exactly full-time but there "could be overtime" and yet there are no benefits such as paid time-off. How is this even legal?
- They can doc your pay if you break anything during a move. (He damn near broke his toe in the first weeks of his current job by dropping a door on it.) Remember? Focusing is not his strong suit.
- There is also possible interstate travel. Now I’ll admit at first I got excited about the opportunity for him to travel —far away from me, but then I woke up. I realized this dude can’t remember his phone charger to save his life! His phone is always dead. He thinks the best option when he leaves his phone charger somewhere is to go buy another one, even if buying another one, leaves him completely broke with no money for a ride to get home from work at 10 p.m. (the time for him to take his meds.)
- This is a guy who impulsively spends money and rides across town to get something to eat, also spending his last dime. Managing his finances is a constant work in progress.
There are so many things that need to be taken into consideration before we throw a boy with autism, ADHD and mood disorder, into the fire of a job that is a pure set up for failure. He has two part-time jobs currently. Is either of them the ideal situation? No. Sometimes they change or cut back his hours. But for the most part, these two jobs are working for him so far. And mind you …he has those two jobs because I insisted that he fill his time constructively.
I would love to see him in full-time employment and have him live on his own, but he is showing me in more ways than one lately, that he is not ready for all of that. He will get there but he’s not there. It’s quite frustrating and disappointing for all of us.
I felt a subtle insinuation from our recent text messages and e-mail threads, that you and frankly other professionals, who work with him think that maybe I am too “overprotective.”
"We just need to let him feel the “natural consequences of his actions. Let's just see what happens." Sink or swim. Throw him into the deep water. He's a man after all!
Well, he gets plenty of natural consequences. Trust me. However, as his mother, I can not and will not throw him into a situation that is not healthy for him if I can help it. He has enough of that in his life already.
I mean do you think I want him living in a group home? Hell no! I don’t. But it was a boundary issue for us and an excruciatingly tough decision that had to be made, both for my mental health and his. The experience of living there has been a cross between hell and life on earth, but he is growing despite the less than ideal environment. The staff and their program at the group home really suck eggs. They don't get paid well and you can tell by the job they do.
Fortunately, he knows how to speak up for himself and he has his father and me to continually advocate for him. God always seems to put other positive resources into his life, like you have been to him over the past several years. I can’t be all things to him that he needs. It really does take a village to raise a difficult child. I will continue to be as much to him as I humanly can, until the time that I leave this earth. And at this rate, it may be sooner than later.
Meanwhile, I will continue working to maintain boundaries with my son. I will continue to protect and nurture myself, while always trying to do what is best for both of my young adult children.
Have I mentioned that I have another high-maintenance son with a whole additional set of transition issues going on at the same time? My life is a real recipe for nut soup.
Yes. I want him to work. He thrives in a work environment more than any other place. Yes. I want him to be as independent as humanly possible and not just sit around taking handouts from the government because let’s face it, they suck too.
You’re going to have to trust that I know what’s best for him, despite the deadline for your services. Luckily for you …you get to say goodbye to him in May. I can’t lie. I wish there was a deadline when I could say goodbye or at least farewell, see you next year. I'm still praying for that angel to come into his life and take over.
I am confident that together we will figure out a path to get my son through his last few months with you. We will set him up for the additional services and resources that he will need to get himself through to the next phase of his adult life.
Again, thanks from the bottom of my heart for all that you have done and continue to do for young adults with special needs in our community. Some things in life, just take longer than the designated time that you have to give them.
By the way, I have still have my insecure moments when I think I am doing this all wrong. But I know deep inside, I am one hell of a mother. I stand by all of my decisions, all of my actions and inactions, my protecting, advocating, my stepping up and stepping back, drawing boundaries and sometimes having them crossed.
I am doing the best that I can for a very difficult young man who will always be my child. A lot of mothers would have just walked away by now. Don’t think there are not days when I want to run screaming. But I’m still here and will be when you’re gone.
Sincerely,
Karen
p.s. You can tell from this post how much I like the word suck. :) Feeling a lot of suckiness lately.
Adelaide Dupont · 284 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 · 208 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 · 191 weeks ago
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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 · 111 weeks ago