There are times when I look at her, with her righteous little haircut and her giant blue eyes and I think, if this is going to be our version of autism, it isn't so bad. I mean, should I even be writing about it? I could throw a piece of lego and hit someone more qualified to have this conversation, but here I am, still writing and for some reason, thankfully, you are still reading. She hasn't hit me or pinched me in weeks (I wish I could say the same about her little friends at school. For the record, she is sorry about that). She hasn't screamed bloody murder in public since Oakley joined our family and she has expanded her food list to include strawberries again. She's as happy as any of us and last night our bedtime routine was over and done in under twenty minutes. Life is good. Kate is good. We are good.
She looked at me today, her fists clutching two tiny cars that she will either run along her dog's back or drop into the toilet as soon as I dare to open a book, and she said: "Mama, did you make someone dead before?"
At first I laugh, because face it, that's kinda funny (and creepy), and then I realize that I had been doing just what I despise. I had reduced her to a set of behaviours and when those behaviours settled for a time, I forgot about the other supports she needs from us. Her miscommunication in that moment reminded me that she is still a little girl who is trying so hard to reach us and her path is blocked by misfirings in her brain. It took thirty minutes of conversation to realize that she was not asking me if I had ever committed murder but instead she wanted to know if I had ever known someone who had died. This is a concept that had likely been introduced to her in one superhero cartoon or another and she was working hard to understand it. I'm so glad I didn't dismiss her and her scary question because it was information she needed help to wrap her head around. She's still struggling but we are working on it.
She cannot be reduced to a set of behaviours.
Later, she asked her sister and her sister's friend if she could join them in a game of lego. They acquiesced, of course, partly because they love her and party because I was watching. The moment Kate sat down she changed their gentle game of building a shopping centre for their tiny lego ladies to browse in, into a game consisting of a tornado of dinosaurs ready to smash that shopping centre to smithereens. To Kate, this was brilliant and some of you would agree but, of course, the girls were less impressed. She doesn't yet understand how to join in play. She doesn't yet understand that she comes on too strong. She needs help here, too. She doesn't see their smiles fade when she asks to join them. She doesn't understand but we are working on it. I used re-direction to remove her from her destruction and the girls quickly had the Red Cross coming in to deal with the devastation and sort out their game.
She cannot be reduced to a set of behaviours.
Kate is a lot of wonderful and puzzling things and I guess I just needed to be reminded of that this evening.
This list isn't meant to inspire fear but in the interest of keeping things real for you guys, I thought I would organize my thoughts into a list. These are the things that are keeping me up at night.
You might have your own list. Feel free to share.
1. What if she doesn't know how much we adore her?
2. People don't always see her the way we do.
3. What if I did something wrong when I was pregnant?
4. What if I am doing it all wrong, now?
5. I can't stop comparing.
6. Sometimes, I don't understand what she wants, means, says, needs.
7. When will her sister realize that she is the only one that will be there for Kate's whole life?
8. Paying out of pocket to supplement what therapies are available is breaking us and we wouldn't have it any other way.
9. No one knows what the future will hold for our children. Will she drive? Will she live independently?
10. Children with autism are at a higher risk of being sexually abused.
11. There is a shit-load of fighting within the autism community.
12. 1 % of the world's population has autism.
13. Explaining autism to someone who doesn't have autism in their life is like explaining parenting to someone before they give birth. They think they know...
14. Autism sometimes looks like permissive parenting and bad behavior.
15. People can be mean. These kids gets bullied everyday. The most common and most easily hidden form of bullying is exclusion. She will be excluded.
16. Services blow. Just because they are better than they were DOES NOT mean they are at an acceptable level. Adults on the spectrum receive less support than anyone.
17. She trusts everyone. And, I mean everyone. Nice lady pushing a small child in a stroller; Kate wants to be friends. TSA agent shaking us down at the airport; Kate wants to be friends. Super creepy, murdery, stabby guy reading Swank in the back of the book store ; Kate wants to be friends. This pathological trust of everyone seems ideal but it's the number one scariest part of this ride.
I'll counter this with a list of things I love about Autism soon. Don't worry, I haven't forgotten about the good stuff.
There are these moments. We all have them. It could be the short time between returning your grocery cart to the cart corral and getting back into your car with particularly demanding children. It could be the few seconds you take to walk between the bedrooms of children fighting for your attention. It might even be the fraction of a second before you open your eyes in the morning to children calling your name.
It is in these moments that we close our eyes and take a deep breath and decide to keep going. It is in these moments that we make the decision to keep parenting like a stealthy ninja instead of falling apart all over the Walgreen's parking lot. Not, that there is anything wrong with that. I've scared a few shoppers in my time.
We don't recharge with long hot showers; there is no time. We don't rejuvenate at the spa; there is no money. We simple steal moments when we can and we do it so we can be better parents.
So, if you see us, taking an extra few seconds to put our carts away after loading the groceries and the kids in the van, you'll know we haven't forgotten something, and we haven't lost our way; we are simply taking a moment to breathe.
There are days when the worry is crushing. Today, for example, as I lay here recovering, from the kind of flu where your blood hurts, I am feeling especially afraid. Today, I am feeling exceptionally lost. Today, I know tomorrow has to be better.
Will she be okay? My guts hurt when I think of someone taking advantage of her. As I've said, she has a pathological trust of everyone. I've been reading about the elevated risk of abuse for children on the spectrum and it kills me.
Will she make friends; real friends? Will they be hers and hers alone and not the kids that come to see her sister. Will she know the names of the kids are school?
What is she thinking? Why don't her words make sense? Why can't she tell me how it feels? Does she understand any of this? Does she understand it all?
Will she live with us forever? Will she drive? Will she go out alone? Will I ever want to let her leave? Will I ever want to let her go?
What if she needs care when we are gone? Who will care for her? Will her sister shoulder that responsibility?
Are we doing enough to help her? What else could we do? Should I have quit my job? Should I be with her every day?
Will her sister grow resentful? Will she wake up some day and realize that she has been given a raw deal. Will she hold us responsible?
My husband and I have a song. It seems strange because we tend to live more on the pragmatic side of life, and we have little time for romance, but for reasons you'll understand, this song speaks to us. Do you have a song?
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)