The “label” thing

Autistics, Aspies, Special Needs, a Disorder, my Daughter, my Son, Other:

What do you label your child? Or better yet, what does your special needs child (or adult) prefer to be tagged with?

This is not a hostile post, but I’ve noticed that people call their child (or themselves) with at least one of the aforementioned tags. And it’s interesting to note.

Personally, I’ve never liked hearing the “autistics” and “aspie” label, it has always rubbed me the wrong way--not sure why, but it just does, but I’m not a person with autism or asperger’s. However, I have read recently through another blog that a few people with Asperger’s syndrome do not like to be called aspies--someone actually said that, for them, it was like being called the “R” word. Interesting.

I’ve mentioned before that I don’t like labels and I have not labeled Nick with autism. That is, he does not know that he is on the autism spectrum--like his sister. He does not know what PDD is, nor does he know about MR or even that “R” is used in a derogatory manner--by horrible people. I know this because he has never come home and asked what the R-word means, but he has come home and asked me what: dork, butt head, idiot, nerd …all mean … No, I don’t like it either, but he hears it and wants more input. And it was lesson one in labels.

He knows his sister has “autism” because she is on the severe end of the spectrum and we use the label as a mere explanation for why she cannot talk and has behavioral issues. And why she had to go to a residential school.

Nick doesn’t question labels for himself. He just knows that he has an aide in school because he needs the “special help” and he wants the help, for now. But I am thinking that this may change for him. He might want a further explanation for the “special help” -- someday. Or perhaps some “bully” might offer him an explanation for him and open his eyes further into the world of labels.

I do know that my brother wanted an explanation for his “disorder” because of a childhood troubled by bullies. But he never got this conclusive label until he was an adult. He pursued it and was tagged with ADHD. And to me -- his sister, and someone who understand disorders -- I was relieved for him; I was relieved that he had the "diagnosis." It provided him with the explanation for his behavioral problems growing up -- the remedy; the “why” he was so different from the other kids; the mystery solved. It was a revelation for him and a diagnosis that happens to come with its own label -- like a present. Or is it?

I suppose it’s up to him if he wants to use the "label thing" -- it’s his label. I guess the choices are that he could ignore it and continue on with life with satisfaction that he understands more about himself and his DNA, or he could use it and tell the judging world that he has a disorder so give a little won’t ya…

To note, he has always used the I have “special needs” tag before he was diagnosed and sometimes I believed he used it as an excuse for fearing the world or not getting what he wants. And, as of late, I’ve often wondered if he’d switched to the I have “ADHD” tag to let the world know that he’s now "officially" at some kind of a disadvantage than his competing peer. Or perhaps he’s learned that a “label” really doesn’t get him very far.

I don’t know.

The Bully Factor

I was visiting another blog and one that I like very much called Teen Autism and she talked about a topic that sent me back many years ago. It’s about bullies and that this mom has to homeschool her autistic son because of the unrelenting bullying at school. I commented that, thankfully, I don’t have that going on with my son, but I certainly had with my younger brother when we were kids. He has ADD/ADHD but we didn’t know it back then (1970s-1980s); instead it seemed to be a learning disability and a bit of quirky behavior; but he just couldn’t catch a break with his fellow peers. Some of the boys in the neighborhood would be so mean and violent, too. I remember kids would make slingshots and my brother was always the human target. Sure, they wouldn’t be mean to him while I was around, but I couldn’t always be around. They would steal his bike and toss it in the woods; throw things at him in passing; and yell and jeer at him.

One day my parents had the presence of mind to send him to a psychologist, but they weren’t happy about it. I think the school psychologist suggested it, so they thought it would be best to take him. I think that my parents wanted everything to just stay simple and be okay. Then one day I was asked (perhaps told) to be the guest visitor and speaker. On that day, the psychologist asked me about my brother and what I thought about the bullying. I was in the room with both my parents and my brother and felt like I was some specimen sitting there under a microscope being examined by all. The psychologist told me that my brother thought that he embarrassed me most of the time. How dreadful. I remember that I tried to play it cool, and that I didn’t want my emotions to show. I told him that it wasn’t a big deal to me that he was teased. I lied. But I didn’t want to tell the psychologist, my brother and my parents, for that matter, that I felt bad for him (and for me) that I had to witness kids mocking him behind his back. I didn’t want to tell them that I remembered the day that my brother rode his bike to McDonalds to get us both a burger and fries, and that he came back with barely anything left in his bag because the bullies got him. That I wanted to run to my room and cry my eyes out because this poor kid couldn’t even take a bike ride without being on some bully’s radar. Did he cry or complain? No. He just accepted it as if it were a mere fact of life. He told me, most matter-of-factly, that “they were after me and I couldn’t make it home with the full bag” of goodies.

I don’t know exactly when it ended. If the inauguration into manhood thwarted the bullies and that they had just found something better to do like “date” and “girls.” I think girls had something to do with it. In high school I had good friends and when my brother became a freshman, the rules changed. My brother became off limits in respect, perhaps, to his older sister: trust me, there were comments. But one of the most interesting days was when my brother’s number one adversary (if not the leader of the bullying pack himself) offered to walk with my brother, as a friend, the half mile from the school bus stop to home and, from what I understood, they had a nice greeting, shared some good peer conversation and ended on this high note: “By the way, tell your sister that I like her.” Who had the power now, baby!! ;)