This is the post I've been thinking about the whole month of February, with the theme of "ties". This post has been brewing in my mind, and just hasn't made it out of my fingers and into the computer. But, as it's Feb 28th, and my kid is off at party and I'm home alone for an hour, it's better late than never.
My daughter is autistic.
It's such a huge thing to say, to know, to live with. It's the truth, a painful truth, but it's the truth. It was a truth that was a long time coming. I had my suspicions long before we had her evaluation and were given page after page of painful to read words describing why she fits on the spectrum. I shed many tears that day, but I was not shocked, not surprised, not devastated.
This is not to say I didn't grieve, that I don't grieve on a regular basis, the truth that autism brings to my home. My daughter is not like other 3.5 year olds. She doesn't tell me elaborate stories, or play imaginary games. We work hard every day to expand her language and play and struggle with tantrums, outbursts and throwing. Sleep is either perfect, or incredibly challenging, and we never know what kind of night we're going to have. I have no idea what the future holds for my child, other than the fact that I will fight tooth and nail for her happiness. But I was not shocked by this label.
The team who did the evaluation were so impressed that we were not shocked, in denial, afraid. I told them that it was because I expected it, I'd already done my homework, and Ruby had enough red flags that I was wondering it long before they brought it up. I know that my willingness to embrace the truth has been helpful for Ruby. If I'd pushed it aside, sought other opinions, we could have wasted 6 more months before starting the amazing speech therapy that is helping her, and teaching me every day. If I'd tried to pretend it wasn't true, I could have spent 6 more months in frustration, wondering WHY my daughter couldn't do what her peers could.
The truth? embracing the label has given me freedom. Being able to look at what my daughter can and can't do with the truth of autism hovering around us allows me to have more compassion for her, for myself, for us as a team. I don't feel as angry at 3 am when she wakes up and I know we'll be up for 2 hours, because I know it's just her brain turning on, and she has no control over that. I don't get as frustrated when she throws something across the room, because I know she has lower impulse control than the average 3.5 year old. Having this label to help define her, and her challenges and her successes gives me the freedom to let go of expectations, and embrace each minute.
I know so many families who are hesitant to have their child evaluated, who are terrified of knowing, are mortified at the thought of their child being labeled. But for me, for our family, for right now, being tied to a label gives us the freedom to fly.
Of course, I reserve the right to feel differently about this in the future, when the prospect of public school will be looming, and this label may try to keep her in a box she may not need to be in. But you can bet your ass I won't let that happen.