I spent most of my birthday this year getting ready for an emergency trip to see my 82 year-old father in California, in the hospital. My siblings call the night before, after spending the entire night in the emergency room with him, with high blood pressure, high-fever and disorientation. He's on oxygen, his fever is showing no signs of breaking, the blood pressure is through the roof. Naturally, they are concerned that at his age, and being a diabetic, that anything could happen, a stroke, heart-attack, or even the inevitable.
Not such a happy birthday, which is kind of par for the course the last few years. There is usually something about my birthday that makes Red act out. This year Blue is full of anxiety, and for some reason tells me, "You know...it's not all about you today. You're not the only person on earth with a birthday on April 6th." Yeah...really nice.
Instead of disappearing for the day, which I desperately want to do, I spend the day with Red, while dad spends the day with Blue. We do errands, and a little shopping. He just can't seem to help himself from getting into the looping conversations about all the things we should be doing for him...which ends up making me sorry I chose to take him with me, instead of leaving him at home.
Hubby and I are able to sneak away to have cocktails and appetizers that night. A couple of martinis, appetizers and creme brulee helps ease my pain.
I make it in to Los Angeles the following day. My dad is sitting up in the bed by now. The fever is broken, the blood pressure is down. He is refusing to lay down, giving the nurses a hard time and talking non-stop. He is in his glory I think, being surrounded by most of his children. There are 5 of us in total. He makes me laugh with his warped sense of humor. Yep...that's where I get it from.
But as I listen to him talk, I realize that he has this sense of entitlement. He thinks that the world owes him something. He has little to no respect for women and his favorite way of communication is using foul, offensive language. I'm used to it. Sometimes, I check him on it. Sometimes, I laugh at it. I cringe at the least possibility that I will be like him when I get older. I don't think I will go all the way there.
My dad has no religious upbringing. He has told my children, there is no God, which really confused them. Thanks to my mom, I was raised in Christianity. I try to follow the example of Christ. I do treat people with respect. I feel so awful for the nurses and staff who are trying their best to take care of him. Talking to him about being nice and respectful is futile at this point. His will be 83 years-old soon. He's not about to change, for the better.
The funny thing is, when he gets to talking in circles, not connecting thoughts, and having this odd-outlook on the world... I don't loose it, like my sister does. She gets so frustrated with him. I'm pretty used to crazy talk. I live with it everyday. I gently let him know how I feel and what I think is inappropriate and what I do not appreciate.
The better my dad gets each day...the filthier the mouth. I fear for the day when he needs others...strangers, nurses, health-workers to take care of him. When we can not be there to ensure his daily care and he feels that he can say anything and still be served well.
Life is one endless stream of taking care of loved ones. Children, Mothers, Fathers, Husbands. Good thing I have my happy pills and the occasional glass of wine. And by occasional I mean --nightly!
Not such a happy birthday, which is kind of par for the course the last few years. There is usually something about my birthday that makes Red act out. This year Blue is full of anxiety, and for some reason tells me, "You know...it's not all about you today. You're not the only person on earth with a birthday on April 6th." Yeah...really nice.
Instead of disappearing for the day, which I desperately want to do, I spend the day with Red, while dad spends the day with Blue. We do errands, and a little shopping. He just can't seem to help himself from getting into the looping conversations about all the things we should be doing for him...which ends up making me sorry I chose to take him with me, instead of leaving him at home.
Hubby and I are able to sneak away to have cocktails and appetizers that night. A couple of martinis, appetizers and creme brulee helps ease my pain.
I make it in to Los Angeles the following day. My dad is sitting up in the bed by now. The fever is broken, the blood pressure is down. He is refusing to lay down, giving the nurses a hard time and talking non-stop. He is in his glory I think, being surrounded by most of his children. There are 5 of us in total. He makes me laugh with his warped sense of humor. Yep...that's where I get it from.
But as I listen to him talk, I realize that he has this sense of entitlement. He thinks that the world owes him something. He has little to no respect for women and his favorite way of communication is using foul, offensive language. I'm used to it. Sometimes, I check him on it. Sometimes, I laugh at it. I cringe at the least possibility that I will be like him when I get older. I don't think I will go all the way there.
My dad has no religious upbringing. He has told my children, there is no God, which really confused them. Thanks to my mom, I was raised in Christianity. I try to follow the example of Christ. I do treat people with respect. I feel so awful for the nurses and staff who are trying their best to take care of him. Talking to him about being nice and respectful is futile at this point. His will be 83 years-old soon. He's not about to change, for the better.
The funny thing is, when he gets to talking in circles, not connecting thoughts, and having this odd-outlook on the world... I don't loose it, like my sister does. She gets so frustrated with him. I'm pretty used to crazy talk. I live with it everyday. I gently let him know how I feel and what I think is inappropriate and what I do not appreciate.
The better my dad gets each day...the filthier the mouth. I fear for the day when he needs others...strangers, nurses, health-workers to take care of him. When we can not be there to ensure his daily care and he feels that he can say anything and still be served well.
Life is one endless stream of taking care of loved ones. Children, Mothers, Fathers, Husbands. Good thing I have my happy pills and the occasional glass of wine. And by occasional I mean --nightly!
Adelaide Dupont · 273 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 · 231 weeks ago
Risa · 218 weeks ago
LAH · 209 weeks ago
Maira L. Coral · 204 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 · 197 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 · 179 weeks ago
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Spoil your cat · 109 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 · 100 weeks ago