About a year ago, I wrote a guest post for Rage Against the Minivan (which is a great blog, by the way), and then I kind of forgot about it. It was posted last week, when Ren was still in the hospital. The title was "What I Want You to Know About Having a Child with Austism." In it, I was trying to help people understand the hard parts of having a kid with ASD because, frankly, sometimes it's really hard. If you've been reading this blog at all, you know that life with a kid on the spectrum is also sometimes crazy, sometimes fun, sometimes heartbreaking, sometimes very educational. In other words, having a kid on the spectrum is very cool and it's also very hard. That's what my post was trying to express. You can read it here.
I've been surprised by some of the comments, especially the strong reaction to my use of the word "lucky." Apparently, it's not possible to say someone is lucky without somehow implying that I am unlucky. I guess that makes sense. But, that's not actually what I was trying to say. I was trying to say that people who don't struggle with ASD on a daily basis should realize life is probably easier for them (though, as you can see, this is a much wordier sentiment than saying they're "lucky"). This doesn't mean that I don't think other people struggle or that I don't acknowledge other kinds of diversity and difficulty in the world. Do I wish Sky didn't have ASD? You bet I do. Life is so much harder for him than for his peers. He struggles daily to figure out how to fit in and how to make good choices in a world he doesn't quite get. Do I love him any less? Of course not. I love that kid like crazy and wouldn't change anything about him except for the parts that make life so hard for him. Isn't it possible to have these kinds of complicated and nuanced feelings about life with autism without being self-loathing, un-accepting or un-supportive? I think it is.
One person commenting hoped my son would never see the post. I don't feel that way. Sky knows how much we love him, how much we support him, and how much we all wish ASD didn't negatively impact his life. He also knows we think he's a super hero and that we are extremely proud of his ability and willingness to work hard and to teach others about the good and the bad of being on the autism spectrum.
If you haven't seen it already, please go read that post and tell me how I could have/should have said things differently to make my point.
And then tell me whether you think I should just give up on this whole internet blog thing altogether.
First of all, the intro states that your post is one in a series allowing people to tell their personal stories, to communicate what they would like others to know about their situation, and that its just what you did. You were absolutely honest and forthright...living with autism is hard. Rewarding on many levels but complex in its many implications and how it affects everyone it touches. You are entitled to say what you feel and those same words would have come out of my mouth, or from many of the other autism moms I know (though in less eloquent fashion no doubt). We are all at varying levels of peace (or not) in our journeys. Mine changes day by day, often depending on the lapsed time from the last meltdown or near-catastrophe. I wouldn't have put it any differently. It is very much a roll of dice, or the hand we are dealt, so "luck" seems quite appropriate to me. Moms of neotropical children do take for granted how lucky (blessed/fortunate/whatever) they are, that their children won't have to struggle each day... just like we take for granted some of our blessings no doubt, and as you pointed out. Is it so wrong to nudge them to be cognizant of the fact? I don't think it is. Maybe next time they won't be quite as quick to judge when a frazzled mom and melting-down child are handling a meltdown somewhere in their vicinity. Nobody chooses this, we do accept our and with it and love our children to pieces. But you, who will never have to wonder if their child will say "I love you" , or marry and have children, or how they will carry on after you are gone...that is a lucky place to be indeed.
ReplyDeleteThank you, Sophia! This is exactly what I was trying to say. I'm puzzled by all the ASD moms who responded to that post criticizing me for admitting that it's hard and assuming I was feeling sorry for myself. How does honesty=self-pity? I don't know.
DeleteAs a long long time reader of your blog, maybe I have a different perspective than the commenters at Rage Against..., but I think I got what you were saying. I don't have a child on the spectrum, so again, maybe my perspective is off. I don't believe that saying someone is lucky means that others are necessarily unlucky, except in that particular situation. My child is unlucky that she needs glasses to see. She is unlucky that when she gets a simple cold, it often turns into pneumonia, and she needs round the clock breathing treatments. However, she is lucky that she is very smart, kind, compassionate, not on the spectrum...The list could go on and on. Would I trade her in? NO WAY! Do I wish she didn't have to wear glasses (as I did / do) since the age of 4, or that she could just get a simple cold? YES.
ReplyDeleteI think some of those negative comments are possibly from mom's who have their hackles up due to stresses in their lives, or some such. Please don't give up blogging. I love reading your perspective about the positives and negatives of parenting and just living.
Thanks for the encouragement. It sounds like you got what I was saying. Sorry to hear about the round-the-clock breathing treatments. Those are NO fun! It's frustrating to try to write something to advocate and get the opposite response, so I appreciate your comment!
DeleteWanting people with neurotypical kids to be aware of their luckiness with regard to the challenges of parenting Sky is totally valid. And it is complicated, just as you say to have nuanced feelings that include both mourning and rejoicing. I'm not sure if there's any easy way to communicate that with Western cultural idioms. Lucky/unlucky seems to be too hard for people to see both sides of (or one side and not the other). Are there any lessons from zen-influenced Japanese culture that illustrate sitting with binaries but not being attached to either one?
ReplyDeleteI'm not a mom so maybe I don't need to chime in, but since I'm a reader of your blog, I understood exactly what you're trying to say about raising a kid on the spectrum - it's hard and you wish for his sake he didn't have to deal with life the way he does but it doesn't make you love him any less.
ReplyDeleteIf I wasn't a reader of your blog I suppose I could see how other people may have found it to be on the negative side only because you didn't focus much on how much fun he can be too.
Please keep writing your blog, I really do enjoy it. And since reading it and spending so much time with my nephews and nieces, I've learned to have much more patience for kids, and their over-stressed parents when they're freaking out in the grocery store, or mall, or anywhere. Sometimes you just have to let them finish that freak out, there's nothing you can do to stop it or console them, and sometimes you've had it up to your eyeballs and you're done arguing with them about it...
As one of the moms who chimed in on your post about the Lucky/Unlucky statement I want to apologize if I hurt you in doing so. The commenter above is completely right when she says that perhaps "hackles were up due to stresses in their lives." So true. In my world, people often seem to take pity on me and it is so upsetting because by doing so, it diminishes my boys and our life on some level. I should not have expounded so in the comment section, you are an autism mom and we each walk our own path but compassion should have been my first instinct and I'm sorry that on that day it was not.
ReplyDeleteThanks for taking the time to comment. I wasn't hurt by the negative responses to my RATMV post so much as I was mystified. The comments on that post just reminded me how hard it is to tell the whole story in a single blog post (or ever, really). My goal is to tell our story honestly so that others struggling with similar stuff can find a safe place to share knowledge and to laugh a little along the way.
DeleteI feel so totally blessed by my son, but I really wish he/we didn't have to struggle the way we do. I don't feel unlucky, so it never even occurred to me that using the word "lucky" would cause a negative reaction. Like you, I hate it when people feel sorry for us. Still, I do want people to have a better understanding of the challenges and to appreciate all the things they take for granted that will never be easy for some of us.