On the earlier post on Diary of a Mom, where Katie concluded that to 'cure' her sister would be to get rid of the person that she is, a mother commented about how ashamed that she felt that she had not realized this. She said that she had tried everything to cure her son of autism, and now she felt shame that she had ever tried to do so. I replied to her with the following, and then realized that the rest of you could probably use to hear it as well. So here it is:
Don't feel ashamed. We've all been where you are. But what matters most isn't where you've been, but where you're going. My sister and I have to argue with our own mother all the time, because she and our other relatives feel terrible for not having realized all along Caley's own thoughts about being Autistic. Now they read our blog and are pretty frequently ridden with guilt when we talk about Caley's true feelings and experiences, because, well, holding yourself to the standard of perfection is one of those things parents tend to do, never mind that they would have had to read minds in order to know what Caley's now expressing.
But here's what we tell our mom every single time. You didn't know. When Caley was diagnosed, everyone told you to grieve, to mourn for your lost child, to regret all that she could have been and would never be, and to fight autism for all you're worth. (A psychologist literally told her these things.) You believed them. Because you didn't know, and you could not have known based off of the information that you had. Now you do know, and you're acting on that knowledge. And that, that's the important thing. Guilt paralyzes - knowledge empowers.
This picture is the perfect example of this:
In the photo, Caley is plugging her ears and looking afraid, forcing a pained smile for the camera, while I pose happily next to her. We were sitting under a bell tower and told the bell could go off at any moment. Caley was, of course, terrified of the sensory onslaught she was about to experience. Mom and I just thought she was over-reacting. After all, the bell wasn't really that loud...right?
We didn't know. We didn't understand how she felt, how she experienced her world. Back then she was too young to really be able to explain it, and there weren't the Autistic advocates speaking out to educate others that there are today. Not to mention the fact that this photo was taken pre-diagnosis.
These are the types of moments that parents look back on, saying, "How could I not have seen?" But short of being autism experts prior to diagnosis (which few parents are) or mind readers, there's no way to have known. Thinking about an incident like this in retrospect (which every parent of a child on the spectrum has) shouldn't be a cause for guilt, only cause for understanding going forward. And I will add, Caley doesn't blame our mom for not having known, nor do I. (Which is a good thing, too, because I didn't know, either.) She, too, understands.
I would like to add, my Momma's a danged awesome mom. And I'm sure you all are great parents, too.
This is just the "best hits" of our blog over at Autism Spectrum Explained. If you want to see the whole thing, head over there!