Autism Moves Out

Since my blog is designed to showcase life with CJ, it is easy to forget that CJ is, in fact, part of a family, not the center of his own homecoming king , football star , media hound, own private avatar world .  CJ has a sister.  A 13 year old, glorious long haired, smart, sassy, gets the grades, cheerleader, tumbling, “Don’t touch my stuff”, funny, full of attitude younger sister.

She annoys the crap out of him and he returns the favor. In fact, he “ruins her life” on a regular basis, but not for the reasons you think. Elizabeth has never known a life without CJ.  A life without adjustments for autism is unknown. It’s not even relevant.  CJ is her brother just like the sky is blue.

He irritates her. He steals her candy. He cramps her style, gets in the way of her social life and he is rude and obnoxious…which is exactly what I said about my own siblings, growing up.

See, she knows that our lives don’t always look like other people’s lives.  She gets that on a mature level that fills me with awe at times.  But she doesn’t think that special needs make you different, because you are you.  Period.

Most adults don’t get that.

She has a friend with Downs Syndrome.  She gets so mad when her friend gets a “pass” for her disability that let’s her get away with stuff she shouldn’t. She has actually uttered the words, “Bonnie is just like everyone else.  She is no different and it is not OK for her to get away with it.”  It may sound a bit tough at first, but think about it.  Elizabeth know exactly what Bonnie can and can’t do, and she’s not looking at Bonnie any differently that any other friend working the system.  She sees the whole person and not just the overlay of the disability.

I let Bonnie’s mom know that she is “just like everyone else”.  She loved the moment.

Elizabeth has started taking some creative writing classes, and I’ve encouraged her to add her voice to the family story by writing about her life, and part of that includes life with CJ.  So today, she’s my guest blogger.

Here, in her own words, is a slice of a 13-year-old’s life with a brother’s autism.

“Many of you don’t know this about me, but I have an autistic brother. I’m sure you are wondering what even is autism? Well, no one really knows what it is, but we have found out that it is an intellectual learning disability. This means that it takes longer for the brain to comprehend things then an average brain. This is not a disease, it’s not something you can spread, cure, or catch. It is something you are born with. It is very different for everyone who has it. It is not something someone “suffers” from. It is a pretty amazing thing.

Some people that have it are socially awkward, but some fit in perfectly fine. In my brother’s case, it is a blessing. He does not “suffer”.  He has had some pretty amazing things happen to him because of this. He has met incredible people and done things that an average guy would not have been able to do.

My brother’s name is CJ and he is 20 years old. He goes to Lake Howell High School. This is his 2nd year being a senior. He still lives at home, because he can not be left alone. He is not able to call 911, if there was an emergency. So, he still lives at home when most normal 20 year olds are out of the house. We are making CJ as “normal” as he can be. He is currently working on getting a job, as many 20-year-olds would either have a job or be working on getting a job.  We have also, been working on moving him out of the house and into more independent living for the past couple of years. 

What is it like having an autistic brother? Not very many people have asked me that to be honest.  If I had to sum it up in one word, I would say amazing. It is pretty amazing having an autistic brother because I get to do some pretty cool things and be part of an amazing world. I get to see him and his friends change to become better people.

When I was little I didn’t really think CJ was very different from anyone else. Then, I gradually started to notice that my friends brothers didn’t need someone to stay with them at the house. Their brothers were different or that CJ was different then them. I don’t really see it as a bad thing. It’s just hard sometimes when we want to do things or I want to have my friends over to the house. My house is not quiet. It’s never quiet. Some of my friends get intimidated by CJ, but most of my friends like him or just don’t really get bothered by him.

I get really offended when people talk about autism and they aren’t a scientist. They talk about how it affects people or how it feels to have it. I can get really worked up about it. It also bothers me when my friends talk about CJ in a bad way. It’s like I’m the only one that can talk about him that way, you know? I have told some of my friends that I don’t like it when people talk about CJ like that and they say that they are the same way with their brother.

I get very protective about CJ. Even if someone looks at CJ with a nasty look, I get pretty protective. One time I was ranting on to my friend about how annoying CJ was being and he asked me, “What kind of things does he do that make you so mad?” .  When he said that I wasn’t really sure what to say, because it’s complicated to explain. When I say what he does people don’t think it’s that bad, but when he does it everyday for years and years and years it gets old and irritating pretty fast.

CJ had never been away from home before until a few years ago what he went to his first camp in the summer for a weekend. He did awesome and so did the rest of my family. We got to be away from him and alone for more than a couple of hours. Then, a few months later, there was another camp and this one was for almost a week. As soon as my mom heard about it, she quickly signed him up, because he loved it so much. He did great on that too.

Now, for a couple of years we have tried to sign him up for as many camps we can in the summer. Some are for a weekend, some are a week and some are day camps. Well, this summer we found a camp that is at a college campus and is for 4 weeks. We signed him up as soon as possible and the other day we found out that he got in and is going. We also found out the he is eligible to live at an assisted independent living place in Jacksonville. This is going to be such a new experience and is such an amazing thing.

Now, there are a lot of incredible things about being CJ’s sister.  When I am at the high school I am automatically known as CJ’s sister.  It’s okay to be known for that, because a lot of people know who I am so I already know the football players and baseball players. It’s a nice way to get my name around. I also, get to know people like Blake Bortles. He is a pretty great guy that does amazing things for CJ and our family. Also, I have met a few of my friends through CJ, like one of my best friends, McKenzie. Her brother did Challenger with CJ so we started talking and hit it off. My friend, Hollyn’s, brother also did Challenger with CJ.

I’m okay with one of my titles as CJ’s sister.  CJ is basically a rock star and pretty much everyone loves him, so being known as CJ’s sister is not a bad thing. Most things that CJ does most brothers do so I can relate a little bit when my friends and I are complaining about our brothers. Being CJ’s sister is a pretty great thing, though. I get to learn about different types of disabilities that people all over the world have.

I have learned so much by being CJ’s sister. I have learned about how to be patient, not only with CJ but with other kids also. I have also learned about autism, especially and things like Angelmans Syndrome and Down’s Syndrome. So to sum this all up, being CJ’s sister is pretty cool. I would never be the person that I am and know the things that I know if it wasn’t for him. I love you CJ.” Elizabeth Williams, age 13

Sometimes you forget how cool it is to have a 13 year old teenage girl who can really understand and love this much.  I love you both!