Blue is a lot like me. He's a crusader. He wants to help others...and by others I mean anyone OTHER than me...his mother. Tomorrow he wants to get up in the morning and walk for Autism Speaks. On a Saturday --at 8:30 a.m. Now even me ...his autism-advocating, saving- the-world-mother, doesn't want to get up early on a Saturday morning to walk for anybody. Me and early mornings just don't get along very well these days. I mean we tolerate each other --kind of like being in a bad marriage. You know you have to be together, but we don't have to enjoy every minute of it. Of course, like everything else in my life ...I will get up and walk to help teach my son the lesson of giving, and sacrificing for the greater good of the community. Yada yada yada.
Blue and his friends are the very definition of spectrum ...they are very different. Blue wants to know all there is to know about autism. He wants to create awareness so that others understand it. He will talk about being on the spectrum almost immediately after meeting someone. You may remember he actually read an essay about it over the P.A. system at school last year called, "Freaks Geeks and Aspergers"
His best friend is somewhere in the middle of the spectrum. At this point, he doesn't want much to do with autism. He doesn't want to talk about it. He doesn't necessarily want people to know he has it. He definitely does not want it to define who he is. He wants to slide under the radar, fit in as best he can and not be identified as the "kid with autism." It is more than o.k. for him to feel this way. This is his journey --his life and he is entitled to define it as he sees fit.
His twin brother is in another place on the spectrum. He spends a lot of his time in his own universe and he's pretty damned happy right where he is. He is not all that aware of what other people think and I don't think he really cares. When you think about it...what a great place to be -knowing and being happy with exactly who you are.
I love these boys as if they are my own. They are lights in my life.
So here's the conversation....
"Do you want to walk with me tomorrow for Autism Speaks."
"No thanks. I don't really like walking."
"Dude, come on! It's a walk to help kids with autism."
"Help them do what?"
"Help them get money to help with their autism. That's what Autism Speaks does."
I stay out of the conversation just to see where it will go.
"I don't understand. I'm confused. What do they do?" asks his friend.
I think to myself...you're not he only one who doesn't really know what exactly what Autism Speaks does other than raise awareness, and fund research, which is important. However, I would like to see some of that money raised get directly into the hands of families who are actually struggling with the high COSTS of autism for therapies, summer camps, etc. Of course, I'm not going to go down this road with the boys. For once, I'm going to keep my 2 cents to myself.
We have been doing the walk for several years. Even Aspergers Dad is involved and is raising funds with his family and co-workers.
"Basically..they help kids like us,"Blue says.
"So you walk and you give them money and other people give them money...to walk?" His friend asks with genuine skepticism...trying to gather and process this in his mind.
"Yeah...something like that," says Blue.
"Um....If I'm going to raise the money for kids with autism...I think I'd rather keep it myself."
I laugh cynically to myself thinking ...the kid does have a point.
Here is the link if you would like to help us meet our goal: Walk For Autisms Speaks -Our Family Goal Page
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