Every morning when I drop Darwin at school, there’s a group of kids there that seem happy to see him. Smiles with big “HI Darwin!” greetings. And at the end of the day, it’s the same. He walks through the doors with a whole posse of slightly older kids happily sending him on his way.
He just keeps on walking. It’s like he doesn’t even hear it. When he gets to me, I give him the same warm greeting. Nothing. He just grabs my hand and we walk to the car.
I’m used to it, and I love that he holds my hand, but I fear that eventually the kids will just get tired of being ignored and not bother to be so kind to him. How I would love to see him just share some of those simple interactions with his peers.
A touching video. These damn videos always bring a tear to my eye.
If I were to select one Autism-related organization to benefit from a musical project, which one should it be?
*EDIT: So far, most of the messages I’m getting are for ASAN (Autism Self Advocacy Network). I won’t need to make a decision until Spring probably, but they seem to be the favorite from the Tumblr crowd.
I recently had a conversation (online) with a young man named Kerry Magro. He was diagnosed with Autism as a small child, and is now working on his Master’s Degree. Oh yeah… I found him through Autism Speaks. He’d written quite a few things on their website and elsewhere, so I decided to contact him to ask for his perspective on the organization (because god knows Tumblr isn’t the best place to find it). Kerry credited Autism Speaks with helping him to progress to who he is today. He also pointed me in the direction of a man named John Elder Robison.
Based on what I’ve seen repeated over and over again on here, I’ll assume most of the Autism community on Tumblr is not familiar with him. Well, here’s a small bit of one of his posts from back in 2010:
“Last year, I was invited to join the Public Review Board for the National Institutes of Mental Health. Today I have agreed to join the Scientific and Treatment Advisory Boards of Autism Speaks. Founded in 2005, Autism Speaks quickly became the largest non-government source of autism funding in this country. Last year, they allocated 37 million dollars for autism research.
In the past, Autism Speaks has been criticized for not having any autistic people in its organization. They do have autism parents and grandparents, of course, but the views of parents are often at odds with those of their autistic offspring. People on the spectrum rightly feel that we – the affected individuals – should be at the heart of any funding decisions that may affect us. I agree with that, so I decided to take an active role.”
So, for literally YEARS now, a bunch of know-it-alls have been shooting their mouths off against Autism Speaks, using the fact that they have no Autistic people on their board as a major talking point. And wouldn’t you know it… they were totally wrong. I have no idea if he’s the only one, but even if he is, the argument is invalid.
I’ll continue to educate myself, and I can only hope that others do also.
This miserable parent was letting her kids scream inside of Love’s Yogurt. I can’t tell parents about my sound sensitivity, they’ll just say it’s my fault. I don’t want to be bullied by them anymore, but they say such cruel things, like if I don’t like it I should stay at home.
I then feel like,…
Maybe that child was autistic. Maybe he was having a meltdown. Maybe he HAD to scream in order to feel better. You should probably stop judging children and parents without knowing a single thing about them.
It would be fucking rude for me, coming from a relatively well-off family, to tell people that they HAD to spend thousands of dollars on a diagnostic test or I wouldn’t accept them into the autistic community.
If a family is well-off, they can afford an evaluation, and if they aren’t well-off (like me) they can get one for free. We have never paid a cent out of pocket for any of our evaluations or services.
Accepting or not accepting someone into any certain community is a limited social issue. Diagnosis of a medical condition (or any condition that requires a diagnosis) is more serious. Put simply, self-diagnosis is… well, it’s basically bullshit. There’s no good reason not to have an evaluation done, unless the person is actually afraid of not actually being the thing they chose to diagnose themselves as.
In case you haven’t heard, a woman named Yodi Jackson has been charged with second-degree murder and second-degree felony abuse in the death of her 25 year old son, Chad. Chad had Autism. Court records show Jackson’s “Failure to insure that he (the victim) receive proper nutrition, hydration and or medical care.”
When these cases arise, the same inevitable arguments happen. One group freaks out with knee-jerk reactions like “SEE, neurotypical people want to kill autistics!” And then on the other side you have people who chime in sounding just a little too sympathetic for the parent who allegedly caused the death. Both are narrow minded and missing the point.
The fact is, people are killed every day. For what it’s worth, most of them are “neurotypical”. Some are autistic. Some are children. Some are old, black, white, asian, ugly, fat, pretty, smart, etc. People sometimes kill people. And in the vast majority* of these instances, that killing is wrong and unjustified.
A parents job is to care for their children and protect them as best you can. Parenting is an incredibly challenging thing. If you don’t have a child of your own, you can’t even begin to relate or understand it in the slightest. Not even close. If you have a child with special needs, then your job is even harder. But it is your job. I can’t imagine not doing that job. In fact, no one ever told me to do it, or explained how it should be done. My son was born, and I just naturally felt the connection that binds me to him. I loved him before I ever even saw him. I have to think that’s the way the vast majority of parents feel. I would hope so anyway.
My point is, the case of Chad Jackson’s death isn’t an Autism issue at all. Chad and his mother are black, does that make this a black issue? No. He was a man, allegedly killed by a woman, so should this be classified as a women-killing-men issue? No. This is a HUMAN issue. A PARENT issue. A NEGLECT issue. Don’t confuse that by picking out whichever specific part of Chad you may relate to or identify with. His death is a tragedy. And if it turns out that his mother is in fact guilty of neglecting him, then she should absolutely be punished according to the law. I tend to think she may already be being punished. Yodi likely falls into one of two scenarios:
1) she made a conscious decision to stop caring for her son after 25 years and willingly allowed/caused him to die.
2) she did love her son and lacked the ability to properly care for him anymore, despite her best efforts.
I don’t know which is true, and neither does anyone else. Regardless, if she caused his death, intentionally or otherwise, she should be punished.
* You’re saying, “WTF? The vast majority? No, ALL killing is wrong!” Well I disagree. If someone broke into my home I would defend myself with lethal force if possible. If my own life or the life of my loved ones were threatened I would defend us with lethal force, and I would feel absolutely justified. Take it or leave it, that’s how I feel.
Sometimes, I think NT’s tolerate bad behaviour from autistics and other neuroatypical because of the assumption that we don’t know any better and can’t help it. Which I guess is nice, in theory. In practice, I think the result is more often that we get away with behaving badly because no one is telling us that what we’re doing is bad and we don’t have to deal with the consequences of behaving badly. That actually sucks, because dealing with those consequences is actually a way to learn how to behave.
If Darwin were a “typical” kid, this would be his Summer vacation before entering kindergarten at the local elementary school. But as it is, we’ve been faced with other options and tough decisions that need to be made about his immediate educational future. The main choices were moving him to the “Autism Support Class” at his current pre-school, or sending him to the school district in a specialized class. As for the school district option, they also had an Autism Support Class, but they suggested that it would probably be too advanced or “high functioning” for D. Instead they recommended a “Learning Support Class”.
I visited both classes, met the teachers, and tried to learn a bit about what Darwin’s time there would be like. It took a long time to make the choice. In fact, people at the schools were getting pretty annoyed with how long it was taking. I wanted to be sure I did the right thing! In the end, the choice was made to send him over to the Learning Support Class. The class should have around 6 kids, and the teacher has experience working with Autistic children.
My fears, well, some of them, are that Darwin won’t get the amount of positive individual attention that he needs, and that he’ll lag behind the class in terms of learning and behavior. I’m also constantly worried about the possibility of him being mistreated somehow, because he’s basically unable to report anything that happens to him. Not to mention, this will be a full day program. That’s a big change from the pre-school class he’s been in which was less than 3 hours, 4 days per week. I’m almost as worried about myself as I am for Darwin! I’m used to spending a large portion of the day with him, and this will surely take some getting used to.
Anyway, he’ll finish out the Summer at his current school and make the big change in September. Let’s hope it goes well.