Excuse me while I think out loud.
“This job is stupid.” Driving grown-ass people around all day. For free.
It feels like a waste of brain power.
It's a huge time suck and takes a lot of energy.
I want to use my brain for more than this.
I’ve had plenty of jobs throughout my 52 years of life and I’ve always had the privilege of walking away when I was ready to move on. Turns out you can’t quit motherhood when you’re burnt out. I’ve been a mom 24 years and I’m over it already. I love my kids more than life, but I’m ready to love them from more of a distance.
It’s hard to have a front-row seat to this movie that is transitioning to adulthood. Autism makes it seem like it’s moving in extra, painfully, slow motion.
The boys are technically adults now (18 and 22). Because of their autism and anxiety, neither of them drive yet.
It seems like all I do is drive them, give them money, and supervise the spending of money. I’m just so over it. Especially, since they don’t really want to listen to anything I say.
It seems like all I do is drive them, give them money, and supervise the spending of money. I’m just so over it. Especially, since they don’t really want to listen to anything I say.
When kids turn into teenagers, it's like your voice is on mute. You're constantly talking, but nobody hears a word you're saying. Yet, they still need your help.
Kendal is 22 and would very much like for us to stay out of his financial business.
“Don’t be monitoring my account and looking at my spending!”
That is until he runs out of money and needs help. Then it’s...
“You’re going to let me suffer?”
“Don’t be monitoring my account and looking at my spending!”
That is until he runs out of money and needs help. Then it’s...
“You’re going to let me suffer?”
Um …dude, I don’t have anything to do with your suffering. You make choices, YOU live with the consequences. You can’t keep screwing off your money and then ask us to fix it.
The 18-year-old, Blue, is really just getting a taste of money management and budgeting. He's kind of a big spender for a dude without a job. He loves to eat out. He doesn't want to cook, although he knows how, because he doesn't want to clean up after himself. Right now it feels like all of those independent living skills I spent years teaching him are blowing in the wind.
His executive planning is crap. I must admit, mine isn’t much better. I am definitely not the most organized, methodical person in the world. But it's my job as his mother, to help him. Whose bright idea was it for me to help other adults manage their lives? I'm clearly unqualified.
Blue seems to have no concept of cause and effect. I try to help him keep his life in order because his lack of planning ends up affecting my life —costing ME time and money.
For example, he doesn't get up on time.
Which means he doesn't have time for a proper breakfast.
He ends up eating on the run (this costs money).
He doesn't take meds because he didn't eat and rushed out the door.
He ends up not taking morning meds at all that day.
He ends up having trouble sleeping that night and subsequently getting up the following morning.
He has an early appointment the next morning and needs a ride, which includes a stop for breakfast (more money) so that he can make it to the train station on time.
This means I get up extra early to take him to the station (5 miles away) because I don't want him to miss the appointment with the Academic Coach.
For example, he doesn't get up on time.
Which means he doesn't have time for a proper breakfast.
He ends up eating on the run (this costs money).
He doesn't take meds because he didn't eat and rushed out the door.
He ends up not taking morning meds at all that day.
He ends up having trouble sleeping that night and subsequently getting up the following morning.
He has an early appointment the next morning and needs a ride, which includes a stop for breakfast (more money) so that he can make it to the train station on time.
This means I get up extra early to take him to the station (5 miles away) because I don't want him to miss the appointment with the Academic Coach.
Of course, he doesn't want to listen to me when I try to get him to plan because I’m nagging him.
Believe me, dude, the last thing I want to do is nag you. Please run your own life, so I don't have to help! Only you don’t seem to have any idea of how to do that.
Believe me, dude, the last thing I want to do is nag you. Please run your own life, so I don't have to help! Only you don’t seem to have any idea of how to do that.
Sometimes I want to say f*#%-it-all!
I want to run and hide…
One --so I don’t have to watch this bad movie anymore…
and two --so they will stop asking me to do stuff.
I think that Blue would function better if he didn't have me around as his safety net.
I think that Blue would function better if he didn't have me around as his safety net.
I don’t remember anybody teaching me budgeting, and planning or even driving for that matter. I learned out of necessity for survival. I learned by doing. I wanted to spend. I got a job. I wanted to go to college, I applied and figured out how to pay for it. Of course, I didn't have autism, but I'm pretty sure I had undiagnosed A.D.D.
Maybe I coddled them more than I should have. I’ve always been here for them. The stay at home mom —their advocate, their beck and call girl. Now I’m pissed because I’m ready to quit and they seem to be in no hurry to grow up and be independent.
Wait a minute. That's not exactly true. Blue has been taught to advocate for himself. He has always set goals and gone after them, most of the time without prompt. He has actually always been VERY independent. Maybe that's why this is hitting me so hard.
The past two years there has been a kind of regression with those independent skills. Part of that reason has been social dynamics, heavy on the male/female relationship learning curve. The other part I think, is that growing up just plain scares him.
Kendal has come a very long way in the past few years. Having him move out, to the group home, which I still hate, did kick him into grown-ass-man gear. He's working two jobs and now looking at apartments.
They both have their driver's permits, but neither is in any hurry to drive. Anxiety is the main culprit. For Kendal, most of his anxiety is related to the actual cost of driving. He doesn’t want to pay for insurance, gas and, “What if I get a ticket?”
They both use Uber until they run out of money or the ride is too far and too expensive to pay for. Then I become their personal driver for appointments and errands. Knowing how much Uber charges, I realize I could be rich from all the rides I give alone!
There is essentially no public transportation in our small city (a suburb of Austin) besides Uber and Lyft, which is better than before when there was nothing. Some of these damn roads don’t even have sidewalks.
There is a train and bus station about 5 miles from here that will get you down into the city of Austin. But you have to be able to get to the station on your own, via bike, a ride or whatever.
If you’re on a limited budget, or you have a disability and you don’t drive in this little city, you're screwed. I don't even know why they call it a city. What kind of city has NO PUBLIC TRANSPORTATION?
There is a train and bus station about 5 miles from here that will get you down into the city of Austin. But you have to be able to get to the station on your own, via bike, a ride or whatever.
If you’re on a limited budget, or you have a disability and you don’t drive in this little city, you're screwed. I don't even know why they call it a city. What kind of city has NO PUBLIC TRANSPORTATION?
Of course, I also drive Ms. Daisy (my mother) to her appointments, grocery shopping and wherever else she needs to go. I do all of her errands, picking up meds, doctors appointments, going to the post office and such.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I know. I'm whining. I'm venting. That's what I do here sometimes...well, a lot of the time. But, hey these are my confessions.
Driving is but a metaphor for my life.
Driving is but a metaphor for my life.
I could easily change it to cooking, grocery shopping, laundry, the care and feeding of adults who don't appreciate it. All of the ordinary things that I do on any given day, none of which, stir my soul or leave me with a sense of fulfillment.
I am an age where I am longing for something more.
My authentic-self is screaming to come out from behind these layers of other people's crap.
I have some ideas about what I want.
My authentic-self is screaming to come out from behind these layers of other people's crap.
I have some ideas about what I want.
But I can’t help but wonder, is there enough time in between drop-offs and pick-ups to fulfill my dreams?
It seems like there is always an interruption, a need to be met, that does not belong to me.
Is fear holding me back?
Am I holding my self back?
I am learning to say no more.
I am learning that self-care is like water, essential to life.
I am determined to feed my soul with more education, whether it be reading or going to listen to a group of women speaking about empowerment. I did this last week. I felt like such a grown-up woman.
I am learning to say no more.
I am learning that self-care is like water, essential to life.
I am determined to feed my soul with more education, whether it be reading or going to listen to a group of women speaking about empowerment. I did this last week. I felt like such a grown-up woman.
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In my head I know, just do it. Take one step and then another —one at a time. I don't have to have a map. I just need to get moving.
It's just kind of hard to figure out my life when I'm so busy helping my young adults figure out theirs.
Aren't their people you can hire for this?
There should be.
I have this feeling that it will never be my turn if I don't take it.
No one is going to hand it over willingly.
It's just kind of hard to figure out my life when I'm so busy helping my young adults figure out theirs.
Aren't their people you can hire for this?
There should be.
I have this feeling that it will never be my turn if I don't take it.
No one is going to hand it over willingly.
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