Wednesday, March 16, 2011
Haters
I heard this song on Glee last night and I was immediately affected. These lyrics are just a small part from a really great song that says volumes about being bullied and how, one day, the bullies will get theirs.
Last week, Drew was, again, the victim of physical bullying. Two kids scratched him up. No, he doesn't always report this when it happens. He doesn't retaliate either. It's just who Drew is and no matter how many times we tell him that he needs to tell his teacher, he doesn't always. His teacher does know that there are kids in his class who hurt him sometimes so I know she has her eyes on it when she can.
WHY THESE KIDS?
I read somewhere that kids with high-functioning autism are four times more likely to be bullied than a typically-developing kid (I am sorry I don't know the source of this statistic.) High-functioning autistic kids are often socially awkward, display unusual behaviors, are often willing to give up their rights and possessions without question, and can be easily fooled into thinking someone is their friend.
FIGHTING BACK
It makes me physically sick to my stomach and throws me into a new dimension of anger when Drew has an encounter with a bully. All I want to do is retaliate. I am not proud of this but it's my first instinct....to fight back, find their parents and tell them what their kid does to other kids. I know one of the kids who gives Drew trouble lives a couple of streets away from us and it takes a great deal of will-power to not find their house and go all Jets-Sharks on them (apologies for the "West Side Story" reference). From a teacher standpoint, I can remember the bullies in my classes and they often did it because they were having trouble in their own lives and that is how they expressed it. Perhaps these kids who are giving Drew trouble are having issues too. I can sympathize with that, of course, so I mind my manners.
WHAT IS A FRIEND?
Teaching an autistic kid about bullying is really hard. Drew (like many autistic kids) has a hard time distinguishing between friendly and non-friendly behaviors. He thinks that any interaction with someone, positive or negative, means you are friends. Drew does not understand that kids who tease or who physically hurt him are not being friendly. Adding to Drew's confusion, the bully often makes friendly advances towards him (i.e., inviting him to a party). We have to be very clear with Drew what it means to be a friend and what is not a "friend" action.
FIGHTING BACK?
Drew has recently expressed an interest in taking karate classes. I was both happy and apprehensive to hear this. I was happy because Drew hardly ever initiates a willingness to "join in" on something. He will do things when I suggest them but he hardly ever says he "wants" to do something. I am worried too though because of the social disconnect Drew has. Will he be able to understand the karate is not a way to fight when kids pick on him? Will he be able to to "get" the idea behind karate which is focus and discipline but not fighting? I keep thinking back to Mr. Myagi in "The Karate Kid" movies when he was trying to tell Daniel that karate wasn't about winning. That wasn't the point. But....I digress. I do want to find a good place for Drew to take classes especially because he has shown interest in something other than video games.
THE BIG PICTURE
I think that Drew being picked on affects me more than it does him. He has never expressed anxiety about going to school. He's not really afraid of the boys. He DOES seem to like hanging out with the girls more probably because they are gentler spirits. I am glad that it doesn't seem to affect him too much right now. Hopefully, as he gets older, he will began to understand the dynamics better. There will probably be a day when he finally expresses some anger or even gets in trouble because he fought back. He knows that getting physical is the wrong solution but sometimes a person just can't hold back anymore.
My hope for Drew is that he will demonstrate the same characteristics that the song lyrics illustrate...perseverance, courage, success...no matter how much bullies hate on him or take advantage of his retiring nature. Drew is going to be a big success someday not in spite of his struggles but because of them.
Tuesday, March 8, 2011
A No-Stigma Zone
stigma : (noun) a symbol of disgrace or infamy
I started thinking about this blog entry awhile back and I've just been chewing on it and letting it roll around in my head. I've been thinking about how stigmatizing any kind of illness, physical or otherwise, can be. Once someone is labeled as "depressed" or "autistic", we as a society, most often subconsciously, instantly attach all sorts of attributes to that person. Perhaps we expect less from those people. Maybe we expect to see certain behaviors. We might even hold that person in lower esteem. All because of a label.
DISGRACE????
Once I looked up the definition of stigma, I was really surprised. Disgrace???? Never in a million years would I have expected that word to be used in the definition. I think we'd all agree that there is nothing at all disgraceful about having a mental illness. When Drew was diagnosed, I went through (and continue to go through) lots of feelings but disgrace was never one of them. If anything, I felt emboldened by his diagnosis because I was feeling like a poor parent before I knew WHY Drew behaved the way he did. Now that I know better, I parent Drew far better than I ever did before. I really hope that Drew never feels disgraced by being on the spectrum. I am going to do my best to make sure he is proud of who he is as he grows up. At this point in his development, I don't think he really "gets" that he's not a typically-developing kid. He does know that there are some behaviors he "can't help." Once he's older, he will know his diagnosis. There is no point keeping it from him because keeping it from him would imply that we are ashamed of it. I am not and I don't want him to be.
MANAGING EXPECTATIONS
Sometimes, unfortunately, when someone is diagnosed with a mental illness, the stigma manifests itself as lowered expectations. Right now, I am the main navigator of Drew's life but as he gets older he'll be making his own way. I don't want him to have low expectations of himself and I don't want friends or teachers or co-workers to either. The only way to assure that he will have high expectations for himself as an adult is for us to keep them high while he's a kid. He knows a C is unacceptable. He will mind his manners. We may have to tweak how we parent in order to meet these expectations but, so be it. He won't be allowed to use his autism as an excuse for poor behavior. I used to have students who would tell me, "But I have ADHD." That used to frustrate me so much.
Instead of trying to excuse a difficulty with, "Drew has high-functioning autism" and stopping there, I would say, "Drew has high-functioning autism but it's not going to stop him from meeting expectation A. What can we do to make this happen? Is there a modification for this?" My expectations for Drew are the same as for the parents of a typically-developing kid...high school, then college, then whatever would be his next step. Drew's psychologist told us once that, "NASA is full of people just like Drew." Yep!
TO TELL OR NOT TO TELL
Based on my experience, there are two camps when it comes to divulging a child's diagnosis. Either you tell everyone when you are ready or you never tell anyone. I was in the "tell everyone" camp. Maybe some people are not fully on board with my frankness. I think that this was my way of dealing with it....I had to face it...I had to make it real. Telling people and answering their questions was really healing for me. I grieved about this. It was hard to let go of the childhood I thought Drew was going to have. Talking about it was my way of taking away the stigma and making sure people (including myself) understood this was going to be okay and that it was okay to ask me stuff.
Another reason I told people is that it is practical. It would have been unfair to leave grandparents, babysitters, and teachers out of the loop. All of these people take care of Drew at some point and they need to understand how Drew "works." Before he was diagnosed, I would nearly beat my head against a wall because I couldn't figure out what I was doing wrong. I don't want Drew's caregivers to have the same experience and it is only fair to give them a heads up.
Finally, I shared what we learned about Drew because NOT sharing, as I mentioned before, sometimes implies that it's something of which one should be ashamed. I am not ashamed of my son and he isn't autistic because of something he did or something I did. It just happened.
OWNING UP
The only way to de-stigmatize something is to face up to it. Be the poster child for the problem. Offer yourself up as an example. Answer the questions that people ask. When Drew was diagnosed, after the initial icky feelings, I wanted to be honest about it with people and myself too, for that matter.
There is no disgrace in having a child with autism. This was not something we chose but I am thankful that we can have a chance to educate people on what it's like to be someone like Drew and show people that we should accept people how they are. Hopefully, as he grows up, I can help him become a confident, successful, no-excuse-making adult.
I started thinking about this blog entry awhile back and I've just been chewing on it and letting it roll around in my head. I've been thinking about how stigmatizing any kind of illness, physical or otherwise, can be. Once someone is labeled as "depressed" or "autistic", we as a society, most often subconsciously, instantly attach all sorts of attributes to that person. Perhaps we expect less from those people. Maybe we expect to see certain behaviors. We might even hold that person in lower esteem. All because of a label.
DISGRACE????
Once I looked up the definition of stigma, I was really surprised. Disgrace???? Never in a million years would I have expected that word to be used in the definition. I think we'd all agree that there is nothing at all disgraceful about having a mental illness. When Drew was diagnosed, I went through (and continue to go through) lots of feelings but disgrace was never one of them. If anything, I felt emboldened by his diagnosis because I was feeling like a poor parent before I knew WHY Drew behaved the way he did. Now that I know better, I parent Drew far better than I ever did before. I really hope that Drew never feels disgraced by being on the spectrum. I am going to do my best to make sure he is proud of who he is as he grows up. At this point in his development, I don't think he really "gets" that he's not a typically-developing kid. He does know that there are some behaviors he "can't help." Once he's older, he will know his diagnosis. There is no point keeping it from him because keeping it from him would imply that we are ashamed of it. I am not and I don't want him to be.
MANAGING EXPECTATIONS
Sometimes, unfortunately, when someone is diagnosed with a mental illness, the stigma manifests itself as lowered expectations. Right now, I am the main navigator of Drew's life but as he gets older he'll be making his own way. I don't want him to have low expectations of himself and I don't want friends or teachers or co-workers to either. The only way to assure that he will have high expectations for himself as an adult is for us to keep them high while he's a kid. He knows a C is unacceptable. He will mind his manners. We may have to tweak how we parent in order to meet these expectations but, so be it. He won't be allowed to use his autism as an excuse for poor behavior. I used to have students who would tell me, "But I have ADHD." That used to frustrate me so much.
Instead of trying to excuse a difficulty with, "Drew has high-functioning autism" and stopping there, I would say, "Drew has high-functioning autism but it's not going to stop him from meeting expectation A. What can we do to make this happen? Is there a modification for this?" My expectations for Drew are the same as for the parents of a typically-developing kid...high school, then college, then whatever would be his next step. Drew's psychologist told us once that, "NASA is full of people just like Drew." Yep!
TO TELL OR NOT TO TELL
Based on my experience, there are two camps when it comes to divulging a child's diagnosis. Either you tell everyone when you are ready or you never tell anyone. I was in the "tell everyone" camp. Maybe some people are not fully on board with my frankness. I think that this was my way of dealing with it....I had to face it...I had to make it real. Telling people and answering their questions was really healing for me. I grieved about this. It was hard to let go of the childhood I thought Drew was going to have. Talking about it was my way of taking away the stigma and making sure people (including myself) understood this was going to be okay and that it was okay to ask me stuff.
Another reason I told people is that it is practical. It would have been unfair to leave grandparents, babysitters, and teachers out of the loop. All of these people take care of Drew at some point and they need to understand how Drew "works." Before he was diagnosed, I would nearly beat my head against a wall because I couldn't figure out what I was doing wrong. I don't want Drew's caregivers to have the same experience and it is only fair to give them a heads up.
Finally, I shared what we learned about Drew because NOT sharing, as I mentioned before, sometimes implies that it's something of which one should be ashamed. I am not ashamed of my son and he isn't autistic because of something he did or something I did. It just happened.
OWNING UP
The only way to de-stigmatize something is to face up to it. Be the poster child for the problem. Offer yourself up as an example. Answer the questions that people ask. When Drew was diagnosed, after the initial icky feelings, I wanted to be honest about it with people and myself too, for that matter.
There is no disgrace in having a child with autism. This was not something we chose but I am thankful that we can have a chance to educate people on what it's like to be someone like Drew and show people that we should accept people how they are. Hopefully, as he grows up, I can help him become a confident, successful, no-excuse-making adult.
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