If raising a child with autism is a war, then all the support I received from friends and family yesterday felt like letters from home. Though they can never completely remove me from the situation, they can lessen the stress with every kind word.
A couple of comments and texts I received yesterday got me wondering about other parents of autistic children and their struggles. According to the brief research I did, we are a subject group of considerable interest to researchers. I came across several scholarly articles discussing the stress levels among parents of autistic children as being significantly higher than those of parents of “average” children. Many of these articles offer an analysis and advice of family, therapeutic and parent intervention.
There are also several support groups online and nonprofit groups that deal with the parents of autistic children specifically, offering them advice on how to cope with the stress and better ways of communicating with their children.
Perhaps I’m alone in this but when I read these support groups websites and all these articles, it just makes me feel worse. I am giving all I can give on a regular basis. Many of these sites offer advice on how to do things “better” which means I’m doing something incorrectly, which then spins me into a guilt tornado. Ugh. No thanks.
I prefer the care packages I receive from friends and loved ones. I prefer the simple words of kindness and encouragement. It’s nice to hear from other parents dealing with similar issues, or have dealt with similar issues, or parents of normally developed children whose kids do something infuriating!
If you’re unsure how to support me (or any parent of an autistic child) here is a nice article I found that offers a thoughtful discussion of what to say, how to say, and what questions to ask. I know many of us, myself included, often worry about saying the wrong thing. When you’re talking about someone’s kid, that worry can build to the point that you don’t want to say anything.
Parenting a child with autism can be incredibly isolating for many reasons.
It’s difficult to take Connor out to public places for fear of how he’ll behave. He may tantrum, shove other children, run away from me, monopolize toys/books/games, etc. Or he might simply scream the whole time. We were at Disneyland just a couple of weeks ago and while he had fun for the first hour, he slowly lost the ability to control his emotions and began to tantrum at the drop of a hat. Every rule we’d worked on, every communication we’d developed, every peer interaction we’d practiced, went right out the window. He hit me, pushed two unknown children, ran into an employee only area, tantrumed the entire time we were on the train. Good times. But there are other times we’ve been there when he didn’t cry at all, interacted appropriately, waited his turn, etc. It’s a very dangerous guessing game to play as to which behavior you’re going to get. And as the parent you need to be prepared for the worst. And you need to be prepared to leave any place, at any time, without any notice.
Sometimes that’s just all too much. Sometimes I prefer to take him to a park that I know will be empty. Or we’ll go for a walk on the vast wetlands with no one else around. And sometimes even that is too much, and we’ll just stay home. When we have days like the past few days, I feel like a prisoner (or maybe the warden) in my own home. This is Connor’s comfort zone. Honestly, this is my comfort zone as well. There is nothing that can happen at home that I am not prepared for. We can be in the same room, interacting, or we can not. Either way is fine.
So when I get your text, your email, your comment, it’s like a lifeline to the outside world that I’m not quite so alone as I feel sometimes. Thank you for reminding me that I have friends, family, kind strangers, who care enough to share a moment of life. Thank you for keeping me company if only for a minute. Thank you.
And because I’m a woman who likes nice things, when I got an email from Coach yesterday offering me 25% off my purchase, I knew it was a sign from God that he wanted me to have something nice. So thank you Lord. I can’t wait for my care package from Coach!
If I’m going to have a child that drives me crazy, I’m at least going to look good on my road to insanity.