The anniversary of originaly informing social media about my daughter’s spectrum diagnosis recently passed and has brought up a lot to think about. When I originally wrote the piece, I was mostly lauded by people for seeing beyond her limitations and recognizing that all children have different strengths and weaknesses – like all people. I was uncomfortable then with the congratulations on my loving my kid the way she was – but I’ve always understood that the compliments weren’t about me. They were about the people who were giving them. Same with the few notes I got back from other parents who were living a different experience than me – who insisted that I didn’t understand what it was like to live with a child who had more severe challenges than my own and that I wouldn’t be so sunny about spectrum talents if I knew the sad, exhausting experiences on the other side of that spectrum. Perhaps – but again, that’s not my experience so it’s not for me to say. I can only say what me and my daughter experience.
This past summer and fall have been an interesting several months for me. I recognize that I myself have been in some sort of depression for the past year – understanding that some of the thoughts I’ve been thinking about my own life and place in this world have not been healthy. A little over a month ago, I could not stand it anymore – it was effecting my family and so antithetical to how I’ve spent my life – that I began taking on projects that would get me out of my head and back into the world of the living. You don’t need to worry about me, these projects seem to be working. And one of the things I focused on is my children’s stories of their days and their thoughts of the world around them. Really listening and not controlling what they might do with those thoughts (trying at least – trying to control loved-ones actions is one of my own talents.) From my daughter, I’ve been able to gain a little insight into how her generation is evolving, and I have to say, I believe we are in good hands.
DDR has no guile and little ability to read sarcasm or body-language. When she tells me some of the stories of the interactions she’s had, I am able to understand when someone was being unkind to her with actions or words. Thankfully she is not really able to read those signs and therefore doesn’t think too much about it if it happens. When things are overt, like an outright ‘you can’t sit at our lunch table because you’re weird’ she’ll understand. But we all know that middle school can be cruel with the small slights or whispers. I’ve heard a bit about small slights and whispers. But even though she doesn’t know what she’s telling me is a story about how others treat her, I’ve mostly heard about kids being kind.
The greatest thing about these stories, is not the being kind part though. It’s the second-naturedness (I made that word up) about it. No one seems to be including my daughter because they want to help the autistic kid. No one seems to be sitting through her long, goofy stories so they can tell their teacher or parent what a good thing they did – they seem genuinely interested in how her story is going to end. No one helps her with her incredibly bad sense of direction or when she is lost in the halls of school because they want the pat on the back – they seem to really love her and help her out because they would do that for people they love.
I have heard of a few incidents where someone was intentionally unkind. I can chalk most of these up to all tweens getting to understand the boundaries of maturing bodies and kooties. The ones that I can’t – I can look back at when he or she was in kindergarten and recognize that this person was never going to be Mother Theresa to begin with and we don’t need to take it personally. I’m not going to say it’s all sparkles and sunshine, but there’s always been someone providing a rainbow after there’s been rain.
Some parents with these remarkable children have heard from me about how they’ve helped make my daughter’s navigation of this world easier and more joyful. For the rest of you though, you need to know that you’re raising amazing people. The world thanks you. I thank you from the bottom of my heart.
When I wrote four years ago about my spectacular daughter, I didn’t understand that this journey was going to be about more than us. Now though I know we’re all learning and growing and I want you to know, you’re doing a great job. I hear all about it. All the time. Seriously – if any of you want to hear a long story about your kid or most anything – come on over. And to the rest of you who don’t have children or don’t have children in DDR’s class or who live away from us or who otherwise have limited contact with my daughter – I can see your growth too and acceptance that a diagnosis does not necessarily mean separation from society or a sentence of pity. She’s changed minds about what autism may look like and God willing, will continue to do so for a long time. Gratitude to you for allowing her that role and your open mind in accepting your own role. Much love.
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