I haven’t written anything on this blog for an entire week, the longest I have gone without posting something since I began blogging over three years ago. A combination of things kept me from my routine, the first being – Emma and I were away, traveling to a new place with food we do not usually eat, people, most of whom we did not know, sleeping on beds we weren’t use to. Everything about our environment was different, but there was something else too. Something I can’t completely explain because I haven’t figured it all out yet. Something that was more than just a disruption to routine, something about identity and society and how the two intersect and influence each other, what that means and how that changes the way we live our lives. These are all thoughts that are more like wisps of random words than fully formed structures I am able to describe. I am in the midst of these words, loosely pieced together ideas; I am twirling among them, investigating, looking, feeling and trying to be still in my discomfort of not knowing or being able to define.
Em and I traveled to a place that was created, organized and for Autistic people. I took Emma because I wanted her to experience being in a place where her neurology was in the majority. I wanted her to meet others who are more like her than not. Em has not commented on our time away other than to say she had fun. I, however, have a great many thoughts and feelings about being in such a place. And I suppose the thing I felt more than anything else was how much more alike we humans are no matter our specific neurology. But there is always a danger in making such a statement. I have been accused of “sugar-coating” autism. I have been told my daughter must be “high functioning” because surely if she were like their child it would not be possible for me to have come to a place of not just acceptance, but celebration of all that makes her who she is. Some people have written that by accepting I am giving up. They equate acceptance with resignation and doing nothing. Others have said that acceptance will not get my daughter and others like her the services needed, that the negative rhetoric is necessary.
People have written me that they want to hear about the hardship, the difficult times, the pain… they wonder at my decision NOT to talk about that. To all those who come to this blog hoping to hear about the gory details of parenting an Autistic child – better to move along, you aren’t going to find that here. There are countless blogs that do that far better than I ever could, even if I wanted to. I lived too many years of my life neck-deep in pain and all that was wrong with this planet and my life. And by the way, I did that well before I had an Autistic child. I am more than capable of seeing the world as a dark and miserable place. I don’t need a great deal of encouragement to go there. Perhaps one of the greatest gifts I have been given is that I was once in such tremendous pain and know how easy it is to live in a place that feeds off that misery. I have no desire to return to that mindset.
I am interested in hope. I am interested in both being the recipient of and the giver of hope. Hope gives me energy. I feel invigorated by it. When my daughter types something I have never heard her communicate to me before I am filled with joy. When she says something I have never heard her say, I am filled with happiness. When she performs a new song, in Greek, no less, I feel proud, I feel excitement, I feel the beauty of her voice fill my soul, I feel bliss. When my daughter reads something and makes a comment about what she’s just read I am euphoric. When she tries something new, I am cheering her on. None of this erases the moments of pain. None of this means everything is simple or easy or that there are never moments of sadness or difficulty.
I will and do write about my own challenges, not because of my children, but because of who I am. Placing blame on others for my issues and challenges is not something that helps me change and it definitely does not make me feel any degree of happiness. My best moments with my daughter are spent when I have no expectations and greet each moment with wonder and curiosity.
“Type three colors,” I said this morning.
“…Violet, slate blue and red,” Emma typed.
I’m in awe.
Emma’s ever-changing “string”
Emma's Hope Book 