Autism does not go away, not today or any day. Occasionally, I take vacations from it as a way of saving what is left of my sanity, but it usually sneaks it's way into my suitcase and comes along for the ride. It comes out and makes its appearance in the middle of dinner out on the town. There it is -that phone call that autism is out of control again back at home. It needs your help Mom. Only you can fix it!
It rears its ugly head in the middle of a romantic movie. What does romance have to do with autism? Well lets see. I'm watching Les Miserables and there is a scene about a girl who is so deeply in love with the boy, yet the boy is deeply in love with someone else. She is devastated by this, of course. She sings about it. She cries about it, and so do I --wondering if autism will ever allow my boys to love deeply and be loved. I cry out in fear of the day when my son has a broken heart. When he couldn't see it coming ...that the girl doesn't love him anymore. How will he handle that when he can't even handle it right now when a friend, doesn't want to be his friend anymore? He completely falls apart and can't stop the perseverating thoughts --his feelings so intense that he is pushing friends further and further away because they just don't know what to do with him and his ardency.
Autism can make the simplest things so much harder than they have to be. Going to high school is a simple thing really. Or is it? Not for my boy. I spent the Autism Awareness day rearranging his school schedule so that his days are shorter --more simple. Because the unstructured times of the day, walking through the hallways and lunchtime are pure, torturous, hell for him. He becomes frustrated because he sees what he perceives as 'the happy people who have it all' and he wants it too! Only he has no idea of how to get it! So he bangs his head up against the wall over and over again, trying to make things happen, make friends, find a girlfriend, only what he is doing isn't working. It's just making him more frustrated. Then he's cursing and screaming and angry thus, working against himself to accomplish his goal.
For my above average intelligence middle-schooler...autism wreaks havoc on his hormonally charged body. It causes him anxiety. Anxiety causes him depression. Depression causes extreme anger and self-loathing. Yes this -even for a boy who seemingly has it all. He has friends, most teachers love him, he has good grades, he has a nice home, full of every electronic contraption that he could ever want. His life is full of love yet, he can't see it. He can't feel it.
I am constantly putting out the autism fires. Each time I put one out, another starts smoldering. It's an endless fight. It's an incessant search for answers ...the right therapies, the right doctors, the right medicines, the right education plan, not to mention how to pay for it all.
So yes...today and everyday I am painfully aware of Autism. It lives here like an uninvited house guest, who apparently does not know how to read these damned eviction papers!
Logging you in...
Adelaide Dupont · 286 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 · 244 weeks ago
Risa · 231 weeks ago
LAH · 222 weeks ago
Maira L. Coral · 217 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 · 210 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.
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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 · 113 weeks ago