Dear Addie,
There I was doing a seemingly ordinary task, washing your hair, and just like that, it hit me. I'm still washing your hair at 13, and I started to spiral. Sure, you do your best with washing, toileting, brushing your teeth, etc. Still, it has yet to be done independently without some oversight that it's done efficiently, and this is just a tiny part of being a parent and a caregiver - like a dust mite size part.
Most days, none of this bothers me. It's challenging, rewarding, and exhausting, but I've grown accustomed to being numb to the emotional strain and going through the motions. That might be a sad statement, but it's true. Being a parent and being a caregiver is very different, and doing both can consume us without us realizing it and before you know it, you're just checking boxes. Don't misunderstand; we love our children beyond measure, and that is why we will go to great depths for their care and comfort, weaving crazy routines into what we call normal for life when, in actuality, it's the farthest thing from what one would perceive as normal. There are plenty of times when Daddy and I look at each other and say, "Do you think anyone else does this like this?" referencing some absurd thing unfolding in our home.
You see Addie, when you are first handed an autism diagnosis for your child, there are a few go-to things that are mentioned. Start therapy early and find a good support system. Ok, sure, check and check, but what they fail to mention is the emotional guilt that will come into play when you least expect it, like when you are washing your teenage daughter's hair and not because you are some fancy hairstylist (if you've seen my hair you know I'm the farthest thing from that). These thoughts creep in when you get a heavy dose of reality that autism somehow will always be one step ahead of us as parents and caregivers. At 43, I'm bent over the bathtub washing your hair because you're too tall for me to do it efficiently in the shower. Will I be doing this for the next ten years? Twenty? Is this what retirement looks like for us? We are your safe space, your comfort. What happens when we can't do this anymore? What happens if we have to have someone else take care of you? Will they take the same loving approach as we do? Will they get frustrated at times and make you feel bad? Will our lack of presence make you feel like we've abandoned you? Even when writing it, that last one brought tears to my eyes, and it is a feeling I can not shake. Nobody can tell you how to manage these feelings; only someone walking a similar journey can probably even understand.
But while I spiraled about the future, you do what you do best and bring me back to the present-day moments. The little ones we celebrate that most might not.
You came home from school this week and sat down to do your usual putty play at the table. Always keenly aware of your surroundings, you noticed that I had yet to empty your bag, one of those checklist items of mine. Instead, I switched the loads of never-ending laundry and moved on to preparing dinner. Once you were done with your putty, you went over to your bag, removed your lunch box, and set it up on the counter where we keep them for the next day. It seemed simple, but you've never done this before, and no one told you to do it - it was completely independent. You grabbed my shoulder to get my attention; It was almost as if you wanted me to see what you had done. My face beamed with excitement as you looked so proud of your completed task, happily stimming before you bounced off to play.
Addie, I have no idea what our future holds and that's really hard for me to deal with sometimes, but you always have this way of bringing me back to the present day when I tend to get lost in those thoughts. However murky or unclear life may get, I hope you will always know how very loved you are. Great job with your lunch box baby girl! Keep it up!
I love you.
Mom