For some reason, this weekend I have been feeling the isolation that comes with having an autistic child more intensely than usual. Most of the time, I am okay with being a bit isolated. I am a bit of a loner, although I have wonderful friends I very much enjoy spending time with, but I enjoy my time alone, too. I can usually be happy for days if I have enough books to read or some good TV to watch or a game to play. But lately, I have been thinking about how hard it is to connect with others with the restraints that autism puts on a family. The kind of interaction that come naturally to most people and families doesn't for us, and I am feeling it more lately.
There's a lot of ways autism isolates. I'd say the main one is obvious---just how hard it is to take Janey or other autistic kids any place. We can't take off for a weekend to visit people, we can't get together casually with other families, we can't decide to go out to eat or to a museum or event or even shopping, without figuring out first how Janey will do, if she will tolerate however long it takes to get there, if she will freak out when she gets there, who will be responsible for keeping an eye on her at all, all times, who will hold her hand, what we will do if we need to leave---all that. Most of the time, we don't even consider such expeditions. They just are out of the realm of our lives. We necessarily center our lives around our house, which is fine, most of the time, but it certainly gets closed in feeling now and then.
Also, when you have young kids, the main way you meet friends is through your children. Your kids go to a friend's house, you take them there or pick them up and talk to the parents, and sometimes, you become friends. You take your child to the playground, to lessons, to sports, to activities, and you meet people. With Janey, that doesn't happen. She doesn't get invited to people's houses. We can't casually go to the playground. The activities she can do often cost a great deal of money, which we can't afford. We take her to school and bring her home. That is what she does.
Autism also puts a strain on old friendships. It takes a special kind of friend to understand how autism has changed my life, why I can't be the friend I used to be. I forget birthdays, I am not there to listen, I can't get together without planning. I am lucky to have friends that have adapted, but I can't spend the time with them I wish to.
As for couples events, that just doesn't happen. Tony often gets together with friends from high school. I have never met most of these people, although they sound great. If Tony is going out at night, I must stay home with Janey, unless the boys can watch her. During the school year, that is mostly impossible. They have tons of homework, or their own activities. If we are going to be out at all late, we don't feel right leaving Janey home with them either. So I stay with Janey.
There's also just the exhaustion autism brings. During the day, when Janey is at school, I either work at home, do housework or nap. I don't use the time for socializing much, or nothing gets done. It's very hard to do laundry or on-line work or catch up on night sleep I don't get while Janey is home.
I am very thankful for social media, but I do have to admit it doesn't replace actual getting together with friends. Last night, I felt frustrated and alone and needing to talk to someone. That's not the kind of thing I'm going to post on Facebook, or email people about. I could have called a friend, but it was late. That would be the case with or without Janey, of course, but I had reached that point due to the isolation that is there all the time. I felt alone, I think, due to the restrictions on my life that keep me from being able to connect in person with people much.
So do I have a solution or point here? Not really. It's just the way it is. To have friends, you need to be a friend. We tell that to kids, and that's the problem. I don't think I am able to be the friend I want to be to people any more, and that is maybe one of the hardest parts of this autism gig.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
3 comments:
I completely relate this exact weekend... I'm feeling increasingly different from regular people with regular kids, as Tate gets older and is more noticeably different. We went to a toy store that has a big playhouse/train area, something we have always liked to do with her, but she went around trying to hug all the adults, and stalking toddlers, and speaking too loudly, and I could just feel our otherness. Other parents were trying to get away from her. She used to pass as cute and friendly when she was two or even three, but now that she's almost five, she's too big to pass anymore. I always knew this time would come, but now that it's here, it is so devastating to me. I want to not care, just let her be her and if she is enjoying herself nothing else matters, but I can't. I can't relax around her in public, I can't stand people staring at me, I am totally not cut out for this... I've always been the 'try to fade in to the background' type. I can't think of a person I know who is less suited for this feeling of otherness and isolation than me. I have to walk by a park multiple times a day/evening since we live on one, and all I think, every single day, is fuck you, you normal people. I don't want to be so angry and ashamed, but I don't know how not to be. I just want to hide away with her where I can escape the glaring differences. I love her to pieces, but I feel like I hurt about her a little more every single day this year. I can't fathom that I have to feel this for the rest of my life, I just can't.
Oh, Sara, I understand all those feelings so much it hurts. I've thought that exact thing so many times---there isn't another person less suited to having a child that stands out in the way Janey does. That toy store feeling, and the parents trying to get away from Tate---wow. That is so familiar. And the bigger they get, the more it happens. There is so much I just don't do, without even thinking about it, because I know we will stand out so much. Only two things help with it a little---one is going to the same places over and over so at least the people who are always there, who work there or are "regulars", know Janey (but even then, she stands out, they know her because she stands out), and the second is once in a million years I can now not notice the other people as much, like the other day at the grocery store, when I knew people were looking at Janey but I was able to not think about it. But that's once in about a thousand trips. It does help anyway to have someone else get that, and to not say things like "just ignore those people!" when you can't. Thanks for getting it.
I feel the issolation so much to the point I just give up. Give up on what I wear, give up on trying to "fit in" and be "normal". There are weeks that we wont leave the house. Even the neighborhood park is too much for Kaden and myself. The only time I feel comfortable to allow him to be him is at ABA therapy and his social friendship club. They don't judge or stare. I don't have to worry about what people are thinking. You know I still have some good friends who think I need to just be more strict with Kaden, that he doesn't have Autism. It hurts so much and I just stay away from them. They will say he doesn't "look" Autistic or "sound" like it. What in the heck are you talking about. I think that upsets me more and isolates me more then having people judge me that I don't know. It's a part of Autism you don't hear about....isolation, but it's there and it's painful. Sorry....I'm just rambling now. Take care and thank you for this post, it's a comfort knowing you are not the only one that feels this way.
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