I’m going to veer away from writing discussions today and focus on something that’s affecting my life in a huge way, and that’s the realization that one of my children has autism. We’re still going through the diagnosis process, but last week the school doctor confirmed what we sort of already knew, that my daughter has Autism Spectrum Disorder, and now we’ve had a few days to come to grips with it. Yesterday, I sent a message to a friend to attempt to pin down a date for a dinner we’ve been trying to plan for weeks. I took the opportunity to explain why things are a bit crazy right now. She said not to worry and then she asked how I felt. The generic answer, the one we’ve been programmed to respond with, is anything vague and brave, like, ‘Oh, we’re a little shocked, but we’re good. Learning all we can!’ Or something. Unfortunately, that doesn’t even come close to what I feel.
So how do I feel?
The short answer is like a big, complicated mess. Let me explain:
- I feel the assessment is accurate.
- I feel worried about her future.
- I’m also worried about how little I know.
- I feel a little more understood when I explain how tired I am to other parents.
- And yet, I feel other parents who do not have a child on the spectrum will never understand.
- I feel relieved there is a group of parents out there who understand, and once I find them, I’m going to feel even better.
- I feel happy about all the extra stuff we did along the way, hoping to make a difference even when we didn’t know what was going on, like the schedule charts, and turn-taking chart for movie night.
- At the same time, I feel guilt for all the times I yelled at my daughter when I didn’t get it, or when I was too tired, or had zero patience left.
- I feel tired when I think of all the extra stuff we’ll have to continue to do for a long time.
- I feel scared.
- I feel like I understand my daughter better than I ever have, especially the more I read.
- I feel sad beyond words when I know my daughter is five feet away from me and yet there are times I can’t reach her.
- I feel lost when I look at my other child and can’t find the words to explain in a way that he can understand.
- I feel worried he’ll get lost in this process, or even come to resent his sister.
- I feel worried he might have his own diagnosis and I wonder if we have the strength to handle both of them.
- I feel a little jealous when I look at the other moms who don’t have a child on the spectrum and I wonder what that would have been like. Not all the time, just a little tiny bit.
- Then I feel ashamed.
- I feel a little angry because sometimes I want to be selfish and do something for me, but I can’t because I’ve had to put everything on hold for so long.
- I feel grateful that I’m in a position to put everything on hold so I can be there for my daughter!
- I feel confused searching for answers in a country where all the information and resources available to me are in a different language, so I have to work twice as hard to find help.
- I feel drained when I listen to the nurse or doctor speak in a different language, and I hope I’ve followed along with everything they’ve said.
- I feel lost because I don’t know where to start looking for answers.
- I feel like I don’t even know what all the questions are, or at least, which ones are important.
- I feel grateful to have access to so much free information on the internet, in whatever language I want =).
- I feel alone without any family of my own to support me and that feels horrible.
- I feel confused because I don’t know when to tell people and when it doesn’t matter.
- I feel angry at her old school because they said they were performing an evaluation when they weren’t and we’ve lost so much time trying to get her help.
- I feel like a whirlwind of thoughts fly around me all day long and I don’t know which things to focus on, and which things to let go. When do we keep her home from school? Why can’t she eat meatballs in her room? What can we do to prevent a meltdown every time she puts socks on?
- I feel sad because the one thing that helps her calm down is to rock/swing and we don’t have a swing and I don’t know how to get one in our tiny apartment.
- I feel stretched thin doing a dozen things a day to prevent meltdowns before they happen, and working through them once they show up anyway.
- I feel more empowered knowing what things are important in life, and which things are so unimportant, like the color of coffee cups.
- I feel proud of my daughter because she is beautiful, and smart, and so very brave. She has the world in front of her, if only we can help her see that and work through the challenges.
- I feel excited to support her intense interests and to find ways to connect with her through them.
- I feel overwhelmed when I consider trying to teach her self-esteem in a confusing world that will make fun of her and will let her down over and over and over again.
- I feel heartbroken when I hold my daughter on my lap in a school hallway because she couldn’t handle school that day and listen to the other kids walk by and tell me how ‘strange’ my daughter is and how all she does is sit there and cry.
- I feel on the verge of tears when I hold her hand and, as we leave, I hear her one friend, the one she was so happy to find, tell her he can’t be friends with her anymore because she disturbs him with her crying.
- I feel like my world has been turned upside down and all I want to know is where is the ground beneath my feet.
- I feel like it’s going to be a long, tough road.
But you know what? I feel like it’s going to be okay.
Most of the time.