As a tribute to what many autism parents maybe be going through this morning after Hurricane Sandy, I am republishing this post. It was originally posted in April, 2011. Blue was still in the heart of his storm anxiety. Here we are a year and 1/2 later. He is nearly 14 years-old, and that anxiety has mostly been alleviated. Maturity, time, Abilify and facing those fears head on by actually being out in the middle of storm, all helped him to put the squash on what was once crippling storm anxiety. I just want you all to know...there is always hope!
April 11, 2007,
I get on Facebook this morning -all my Central Texas friends are happy because we got rain last night. It cooled our temperatures a few degrees. Our grass and trees appreciate the free water. Blue is not happy with the rain. I thought things were getting better with the anxiety over thunderstorms -no such luck.
It's starting to warm up here in Central Texas. Cold air coming down from the north mixing with our warm air = thunder and lightening. Thunder and lightening = frightening to my little boy Blue.
He checks the weather and radar with regularity. If there is more than a 20% chance -he worries, especially if its overnight. He doesn't want to be awakened by a loud clap of thunder and the house vibrating. He wants to control his environment, especially when it's time to go to sleep. He doesn't like loud sounds, and he certainly doesn't want to be surprised and awakened by one in the middle of the night.
Things are better since he's on a low dosage of Abilify -meaning he's not hiding out throughout the day when the sun is still shining. But overnight -if there's a good chance of a storm -he camps out in the bathroom. Loud fan blowing, layers of blankets and pillows, sleeping bag, Ipod, earplugs, earphones and a lamp for soft lighting. He'd rather sleep next to a toilet than be awakened by a storm. That is really sad. One day we will look back on this and laugh --not today.
We have tried the whole ordering him to sleep in his bed -no matter what. All that means is once we're asleep, he sneaks into the bathroom anyway. His fear is very real to him. No matter how logical we try to be in our explanation, "It's not going to hurt you. Have you ever been hurt by a storm? We are here...we will keep you safe. We won't let anything bad happen to you." It doesn't matter what we say. If I can't crawl into his head and flip a switch...it doesn't work. He has to come out of this on his own.
Last night he sets up camp while there isn't a cloud in the sky, but the radar says there is a 40% chance that a storm is coming. He comes into our bedroom around 12:30 a.m. and asks me if I will come in the bathroom with him if it starts. There is nothing but a little wind at this point. I beg him to go back to sleep and not worry. I may as well have told him to fly around the room like a bird.
The thunder claps start around 4 a.m. They are short lived, but the build up in waiting for it kept him awake most of the night. As I write this, he's sleeping it off, unable to go to school on time because he probably didn't go to sleep until 5 a.m. He will not miss the entire day. He refuses to get behind in his schoolwork.
For now I wait -until he wakes. Thankfully -he will wake up to sunny skies, fresh green grass and blooming plants...not that he cares one damn bit.

April 11, 2007,
I get on Facebook this morning -all my Central Texas friends are happy because we got rain last night. It cooled our temperatures a few degrees. Our grass and trees appreciate the free water. Blue is not happy with the rain. I thought things were getting better with the anxiety over thunderstorms -no such luck.
It's starting to warm up here in Central Texas. Cold air coming down from the north mixing with our warm air = thunder and lightening. Thunder and lightening = frightening to my little boy Blue.
He checks the weather and radar with regularity. If there is more than a 20% chance -he worries, especially if its overnight. He doesn't want to be awakened by a loud clap of thunder and the house vibrating. He wants to control his environment, especially when it's time to go to sleep. He doesn't like loud sounds, and he certainly doesn't want to be surprised and awakened by one in the middle of the night.
Things are better since he's on a low dosage of Abilify -meaning he's not hiding out throughout the day when the sun is still shining. But overnight -if there's a good chance of a storm -he camps out in the bathroom. Loud fan blowing, layers of blankets and pillows, sleeping bag, Ipod, earplugs, earphones and a lamp for soft lighting. He'd rather sleep next to a toilet than be awakened by a storm. That is really sad. One day we will look back on this and laugh --not today.
We have tried the whole ordering him to sleep in his bed -no matter what. All that means is once we're asleep, he sneaks into the bathroom anyway. His fear is very real to him. No matter how logical we try to be in our explanation, "It's not going to hurt you. Have you ever been hurt by a storm? We are here...we will keep you safe. We won't let anything bad happen to you." It doesn't matter what we say. If I can't crawl into his head and flip a switch...it doesn't work. He has to come out of this on his own.
Last night he sets up camp while there isn't a cloud in the sky, but the radar says there is a 40% chance that a storm is coming. He comes into our bedroom around 12:30 a.m. and asks me if I will come in the bathroom with him if it starts. There is nothing but a little wind at this point. I beg him to go back to sleep and not worry. I may as well have told him to fly around the room like a bird.
The thunder claps start around 4 a.m. They are short lived, but the build up in waiting for it kept him awake most of the night. As I write this, he's sleeping it off, unable to go to school on time because he probably didn't go to sleep until 5 a.m. He will not miss the entire day. He refuses to get behind in his schoolwork.
For now I wait -until he wakes. Thankfully -he will wake up to sunny skies, fresh green grass and blooming plants...not that he cares one damn bit.

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 · 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 · 112 weeks ago