Thursday, October 04, 2007

Asperger's is not a bad word

A while ago I found myself reading several blogs by parents who had children like Joseph. Extraordinary children who were facing some difficulties in school and social settings. Some of these parents readily embraced the fact that their children were living on the autism spectrum. Others did not. I found myself bouncing between the two schools of thought.

Some days I was angry when I thought about being told that Joseph had Aspergers. I didn't want to accept that his differences were there and I didn't want to accept that those differences might put a lable on him. I didn't want him to have Aspergers and I didn't want everyone looking at him a certain way and expecting certain things out of him because he of it.

Some days I was ok with the whole thing. Not most days though. Most days I still thought things like "There's nothing wrong with him at all! He's not out of order! The system is out of order! Who cares if he's different! Different is better and everyone one just needs to accept it!"

Right now I feel like I'm in a pretty healthy place as far as dealing with and accepting Aspergers goes. A while back I was talking to someone about Elle and I was saying how different it is raising her, "a neurotypical child" than it is raising Joseph. All of the sudden it just hit me. Elle is neurotypical. Joseph is not. And that's ok.

It's ok that he has Aspergers. It's ok that he does things differently and feels things differently and acts differently. I don't have to change that. I don't have to fix that and I don't have to hide that. But I do have to accept it. And I have to accept that as much as I would like for the rest of the world to get in tune with Joseph it's not going to happen. And Joseph is never going to get in tune with the rest of the world. Because he has Aspergers. And that's ok.

Aspergers is not a bad word. Knowing what my son has going on with him and putting a name to it doesn't have to be scary. The way I see it is this: A diagnosis doesn't change anything about Joseph. It's just a tool to help me help him. It's a stupid sounding word that has helped me to get Joseph extra help at school when he needs it. It's a cue that lets other adults who work with him know that they might need to adjust the way they deal with him. It was a stepping off point for me when it came to learning about how to deal with his melt-downs and sensitivities.

Aspergers is not a bad word. A lot of the things that go along with it can be reframed as real positives for a child. Denying that is exsists deosn't make it go away, it just keeps you from dealing with the truth. The good truth and the not so good truth.

So I've been pulling away from some of the blogs that I used to find a lot of comfort in. I get tired of hearing them repeat over and over "My child doesn't have Aspergers and I won't listen to anyone who says he does. He's just special and he's going to change the world."

I much prefer to read about the lives of people like me. People who say "My child has Aspergers and I'm glad I know that he does. He's special and smart and yes, someday he's going to change the world. And it won't be in spite of the Aspergers. It might just be because of it."


nell said...

I think it's important to do whatever you need to as a parent to maintain a strong relationship with your child, whether they are different or not. Good for you for knowing what you need to do to make it work for you and for Joseph.

Anonymous said...

I've had students with Asperger's and they were truly the best students I've had.

Creative and fun and smart. I miss those kids.

It's just a label. I hate it.

You are so cool.

shyestviolet said...

* much love, much love *

Grandma Judy said...

We all get labels stuck on us. Sometimes I think is the way people "organize their world" including the people in it. We are all different: different shapes, different heights, different colors, different abilities, and I think it is human nature to want to sort in to categories(another term for label). Labels have as much meaning as we let them have. What everyone wants and needs is acceptance. It's just too bad that not everyone realizes this. Joseph has a lot of people in his life who love him dearly and accept him. He is one of my favorite people and I love to spend time with him. I'm so glad that he chose to be in our family!! I think we are all blessed with his presence! He has a wonderful sense of humor and a lot of creativity and brilliance!! You and Jesse are wonderful parents to him and I know Elle loves her "BaBa"... Grandma Judy

Julie said...

Great post. I have an almost 5 year old who has Asperger's and I do believe he is going to do something big with his life because of it! He also has a Grandma Judy who sounds a lot like his Grandma Judy in terms of attitude. Would love to connect with you via email and swap stories. I live in Chicago.

Patricia said...

I have a blog where I write about Asperger's because my 14 year old son has it. I am just starting to look for other blogs so I can see what others are going through/have gone through.

Just letting you know that I'm out there too - in Canada.