Why do I blog and Facebook so ferociously? I am desperately trying to understand and be understood. I'm connecting with people who get me, and I get them. I feel their pain and I know that so many of them authentically feel mine. It's crazy to feel connected to so many people all over the world who are going through some of the exact same things that I am going through. I know it's insane, but it's also incredibly real. We laugh together. We cry together. I absolutely get high from the laughter everyday. It makes this crazy life seem a little less crazy when you can find the humor in it. Oh ...and the high of sharing the laughter and brightening someone's otherwise dark day, gives me a buzz. I'll admit it. I'm addicted. It's like one of the genuinely good feelings in my lonely days.
It's also sad. Sometimes it even feels pathetic, that some of the people I feel closest to, I've actually never met. It just is what it is for now. I feel like the good things that come from it, far outweigh the negatives.
No one in my real life, totally gets what I'm dealing with. I'm always out there searching, trying to understand, trying to do whatever I can to help my boys. I'm looking for answers to their questions, to my questions, looking for the right things to say and what not to say to make things worse.
My husband gets it but doesn't get it. He's too busy working to really get it. Then he thinks I'm always making excuses or them. That really pisses me off.
O.k. so maybe at some point I made excuses for them, but I've learned that lesson. Time is short! One is an adult, and the other one will be sixteen before I can blink my eyes! The last thing I want to do is make excuses for them. Their issues are real. They're not imagined. They have huge pockets of intelligence. That doesn't take away their challenges, their different way of seeing and experiencing the world. Their intelligence does not deem their challenges null and void. I want to understand how to help them to help themselves!
My mother (another story altogether) really doesn't get it as much as she may want to. I know I've said this before, but this is my rant. She actually ends up adding to the headache. Imagine having your mother as an audience to all of your conversations with your teenagers. Then top that with their autism and lack of filter. Oh and the cherry is that she also has no restraint and will say anything at anytime. She's like uninvited audience participation in my own house. How the hell did I get myself into this situation? How did this become my life?
Yeah. Don't answer that. I love her. I'm blessed to have her. Yada. Yada. Yada. I'd like to have her down the street, in an apartment.
I work to put their supports in place and I'm actually quite proud of our team. Just last night I had his Job Coach, his Occupational Therapist, one of his high school teachers, and our Transition Coordinator at our house for a meeting. All here on their time off, supporting him! I am eternally grateful for this team of people. There are so many kids left out there hanging, with ignorant parents who don't get them and have no idea how to help them.
My Facebook and blog community parents, mostly moms and a few awesome dads of kids on the spectrum actually understand this life.
Damn right! I don't want to hear the opinions of ANYONE who doesn't actually live my reality. And my reality is different than anybody else's reality because these are MY children with autism. Each of them is uniquely challenged. There is no one else exactly like them, so if you're not an expert who's studied, or worked with them. If you're not some one who's actually living this, you really can just shut the f- up! I don't want your 2 cents.
If you want to give your 2 cents to the help pay the experts, pay for medications and many other bills that come along with autism, you can do so by shopping Amazon with me. Just Click the link below or use Amazon Search above.
End rant...
Shop Amazon with Confessions
It's also sad. Sometimes it even feels pathetic, that some of the people I feel closest to, I've actually never met. It just is what it is for now. I feel like the good things that come from it, far outweigh the negatives.
No one in my real life, totally gets what I'm dealing with. I'm always out there searching, trying to understand, trying to do whatever I can to help my boys. I'm looking for answers to their questions, to my questions, looking for the right things to say and what not to say to make things worse.
My husband gets it but doesn't get it. He's too busy working to really get it. Then he thinks I'm always making excuses or them. That really pisses me off.
O.k. so maybe at some point I made excuses for them, but I've learned that lesson. Time is short! One is an adult, and the other one will be sixteen before I can blink my eyes! The last thing I want to do is make excuses for them. Their issues are real. They're not imagined. They have huge pockets of intelligence. That doesn't take away their challenges, their different way of seeing and experiencing the world. Their intelligence does not deem their challenges null and void. I want to understand how to help them to help themselves!
My mother (another story altogether) really doesn't get it as much as she may want to. I know I've said this before, but this is my rant. She actually ends up adding to the headache. Imagine having your mother as an audience to all of your conversations with your teenagers. Then top that with their autism and lack of filter. Oh and the cherry is that she also has no restraint and will say anything at anytime. She's like uninvited audience participation in my own house. How the hell did I get myself into this situation? How did this become my life?
Yeah. Don't answer that. I love her. I'm blessed to have her. Yada. Yada. Yada. I'd like to have her down the street, in an apartment.
I work to put their supports in place and I'm actually quite proud of our team. Just last night I had his Job Coach, his Occupational Therapist, one of his high school teachers, and our Transition Coordinator at our house for a meeting. All here on their time off, supporting him! I am eternally grateful for this team of people. There are so many kids left out there hanging, with ignorant parents who don't get them and have no idea how to help them.
Damn right! I don't want to hear the opinions of ANYONE who doesn't actually live my reality. And my reality is different than anybody else's reality because these are MY children with autism. Each of them is uniquely challenged. There is no one else exactly like them, so if you're not an expert who's studied, or worked with them. If you're not some one who's actually living this, you really can just shut the f- up! I don't want your 2 cents.
If you want to give your 2 cents to the help pay the experts, pay for medications and many other bills that come along with autism, you can do so by shopping Amazon with me. Just Click the link below or use Amazon Search above.
End rant...
Shop Amazon with Confessions
Logging you in...
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