I’ve provided you with your token autistic. I’ve been complicit in this, I know that. In an attempt to raise awareness (whatever that means), I’ve sold you a picture of autism. It’s one picture, it’s our picture and for what it’s worth, it’s been as real as we can manage. You can watch and love her (from afar) and it allows you to feel charitable in a sense. You and your good heart can find pleasure in cheering on her successes and mourning her failures. I don’t mean that to sound like an attack in any way. I feel the same way you do. I let inspiration porn warm the cockles of my heart and I dutifully share on social media as if it makes me worthy in some way.
However, because my little girl is real, and so is her autism, I find myself reflecting, often, on whether writing about her offers her anything more than a really good-looking fan club. (You see how I’m trying to win you back after basically insinuating that you feel morally superior because you enjoy following the adventures of a small blonde autistic girl.)
Why am I selling you autism? More importantly, why are you buying it?
Before I attempt to answer, I’d like to describe for you, the last two days. The school year has ended and now that I get to play stay-at-home mom for a summer, I’m in charge or driving Miss Kate to her summer camp. After a terrible experience last summer, where we thought foolishly that Kate could manage the unstructured day at home with me and her sister, we decided, though very expensive, a summer camp would be in everyone’s best interest.
Kate spent eight months having her father drive her to school. Two days ago, I took over the driving, and rather than school, the drop off is her summer camp. Though she adores her camp, the two major changes in her morning routine have upset her to the point of extreme tantrums each morning. Her older sister and friend watch as I wrestle her into clothes and carry her to the van. She fights and screams and no sooner have we turned the corner out of our subdivision does she stop crying and accept her fate. Three minutes more and she completely forgets our fight and spots a deer on the side of the road. “Mama, that deer is probably called King of Bones.” she said, with no explanation and a little smile on her tear-stained face.
She doesn't mean to be difficult. She really doesn't.
To get to the point, here I am, again, telling you about her confusion, her ‘bad’ behavior and our somewhat futile attempts to ease her through these brutal and confusing transitions.
If you’re a regular follower you might expect another story soon, but a funny, heart-warming anecdote this time. Something to make you smile and give you faith that autism or Kate’s autism, in any sense, isn’t so terrible after all. And I’ll likely provide that, all the while wondering if I am doing her any justice at all. Is this all bullshit? Am I costing my little girl her privacy, her right to grow up and have some mystery about her childhood?
Sure, Kate is a ham. In fact, she adores to hear of how I share her stories with you. Is that the aggressively social symptom of her autism or does she really enjoy sharing her world? How can I know?
I just really don’t want to get this wrong. You know? I don't want to cost that little girl more than has already been taken from her.
I’ve decided, I guess, that, for now, sharing is helping her, and me, and most of all you. I have to tell myself that you’ll be more patient, more understanding, more involved when it comes to autism in your own life. I have to believe that Kate's adult life will be made easier by the advocating we do now. And, I have to believe that that is enough.
How did I get so lucky?
I say it to both my girls each night when I tuck them in. It doesn’t matter that the youngest may have brought me to tears with her defiance or disproportionately strong arms earlier in the day. It doesn’t matter that the eldest may have hid in her room reading because she gets upset when her sister gets confused.
I say it because it’s true.
I say it even though the youngest told me she’d rather have her teacher for a mother. Even though the eldest told me she’s afraid her sister won’t ever make any friends.
I say it because the youngest spent the day defying an overwhelming nervous system just to navigate her school day.
I say it because the eldest spent the day battling an anxiety only known to autism siblings.
I say it because the youngest knows no strangers.
I say it because the eldest is fiercely loyal.
I say it because it’s true.
I get to be their mom.
I get to tuck them in each night.
I imagine everyone feels this way.
At least I hope they do.
"Mama, did I make sense?"
She says this now. After she tries to explain something to me, which more often than not, does not make sense. It guts me every single time.
I know so many of you think that because she can talk, and talk and talk, that she can effectively communicate. I am here to tell you that she often cannot.
She gets confused. And this next part is really hard for me to type because, it hurts to say, and more importantly I do not know enough about these topics to speak about it with any amount of sophistication, but here goes. Kate confusion reminds me of dementia or Alzheimers. Or what I think I know of these two things.
Kate's two biggest communication issues are as follows:
Theory of Mind Issues:
I've chatted about this before so if you need a detailed explanation about Theory of Mind and how it pertains to Kate you can click here. Otherwise, the simplest way to explain this is to tell you that Kate whole-heartedly believes that you feel the exact same way she does about any given thing.
If she wants to win at the game, of course, you also want her to win.
If she wants to play with the yellow Power Ranger, of course, you also want her to have that yellow Power Ranger.
If she has no smarties left in her box, than you have no smarties left in your box.
Essentially, Kate can easily become indignant, angry and confused when things don't go her way, because the rest of the world feels exactly like she does, right?
Yeah, it's a tough one. It comes across as bad behavior and those that get their education from Fox news and internet memes will probably give you a hard time about this, but they're assholes, so fuck 'em. They also don't believe in essential human rights, or global warming, so they have their own disability to worry about.
Receptive Language Issues:
This is also not easy for a number of people to understand, and for good reason. It is hard to wrap your brain around the idea that a person can have a large vocabulary but have a serious communication deficit.
Kate can talk to you all day about things she is interested in, of course. She can ask for things, and give opinions and tell some of the greatest and funniest stories on her good days. However, when you speak to her, it enters her brain, she then re-arranges (or so I imagine) the words until it makes sense to her and she goes with that.
Examples of this are harder to share, because most times we both end up confused and we slow down and start over. We've even gotten pretty adept at figuring out what she means even if it doesn't make sense.
So, the older Kate gets the harder it is for her to hide these deficits. She still isn't able to communicate effectively enough to fit in with a group of friends, or get through a day without someone screwing up their face at her, and saying: "That doesn't make sense." (I think this is why she likes spending time with her dog so much. Oakley doesn't ask questions or look at her like she's wrong, somehow. Oakley understands.)
This is why is hurts to hear her ask me if she's made sense. I don't want my super confident little spitfire to feel bad because language is hard and she is trying her hardest to make us understand.
Sometimes I wonder if she has it figured out and we are the ones with the communication deficit.
Anyway, there's my piece for this evening. Thanks for listening.
You've likely been refreshing this page obsessively waiting for an update.
Did she ever go through with it?
Did she ever figure out those vagina pills?
Did she receive a cease and desist letter from her gynecologist?
Lucky for you, not only am I going to answer all of these questions in too much detail but I am also going to enter into some pretty frank discussion about the supreme bullshit that is a woman's obligation to be 'fine' or 'grin and bear' these uncomfortable, invasive and somewhat humiliating experiences.
But first, an update. If you've no idea what I am talking about, read this.
The dreaded appointment was rescheduled and it was simple enough to live in denial for the short two weeks leading up to the procedure. The evening before, though, that was the evening I had to do those ridiculous vagina pills. They had to be inserted before bedtime and yes that is just as awful and awkward as it sounds.
And what did those damn pills do, you ask? Well, I had to google that shit, of course, but they would soften the cervix so that the doctor could more easily reach the uterus with whatever god-forsaken instrument she would use to remove small sections for testing.
Now in the weeks leading up to this appointment I had lots of time to obsess about it and even ask women I knew about their experiences with this procedure or something like it.
It struck me that most women were quick to dismiss the biopsy as 'no big deal', 'not much worse than a pap test' or 'you'll be back to work the same day'.
So, are you ladies trying to tell me that lying on a slab with your legs in stirrups, knees dropped to each side, naked from the waist down while a doctor inserts a speculum in your vagina, and reaches through your cervix to remove pieces of a pretty vital organ, while you stare helplessly at fluorescent lighting, is no big deal?
I'll apologize right now to the eight men reading this, but if men had to have sections of their urethra removed on a yearly basis there would be goddamn support group.
I know being a woman means you have to be strong in the face of adversity, but that means standing up to classism, racism, sexism and the like, that does not mean you have to be okay with horrifying medical procedures while you are wide awake.
I know, I know. I pushed out two babies, too. It was just as terrifying, and you all know it. Sure, it was well worth it, but who among us wouldn't have let the husband take a stab at birthing the second child if it were at all possible. Shouldn't everyone get to experience the joy that is bringing life into this world?
Anyway, that shit is painful and scary and women should not be commended for braving these things without complaint. We are quiet about too much.
It's time to take the afternoon off because you'll be leaving the clinic with cramps in your belly and a pad between your legs. It's time to skip making dinner and instead go to bed and rest. Who are we trying to impress? Not each other I hope.
Back to the big day.
The evening before I 'took' those fucking vagina pills and felt 'contractions' all night long, but that was fine because there was no way I was going to sleep anyway. By 6:00am I gave up on sleep and showered. I decided to head into work because teaching Kindergarten is the best distraction from impending invasive medical procedures that I can think of.
I left after work and arrived at the clinic fifteen minutes early. I checked in and sat down with my book. After reading the same paragraph eight times I settled on my phone. I decided to online shop, because that always makes me feel better.
I was just adding the second wine fridge to my cart when my name was called.
I walked stoically past all the pregnant ladies in the waiting room and followed the nurse. She took me into a room that looked very much like you imagine. A bed, with attached stirrups, a paper sheet for my comfort and a row of cupboards that probably held some of the most medieval looking shit you've ever seen.
I barely had time to take in my surroundings when the doctor knocked. The nurse probably told her they had a 'runner'. She wasted no time in making sure I was on the table and ready.
I've already explained the gist of what was done so I'll spare you that, but you should know the doctor was kind, and mercifully quick and promised me when it was over that I would not have to do it again anytime soon.
It hurt. It hurt so bad I lost my vision for a moment and felt that I might pass out. Though, that wouldn't have been the worst thing. I suppose if I had rolled off the table during said procedure this would have been a whole different and much funnier essay, but I survived, and shakily got dressed and saw myself out to my car, where I laid in the reclined seat and blasted the air conditioner until I felt strong enough to drive home.
You see how we pretend we are just fine. Of course, I should have asked for help, someone to come with me. Someone to drive me home. I felt like I had to be tough. I felt like I had to suck it up and that's not cool. As my husband says, "You have some really 'complicated rigging' and there is a lot that goes along with that. It's okay to be afraid."
It's a little scary in other ways, too, you know. I know what they're looking for when they take a biopsy. You do, too. It's more than just a painful trip to the dentist. It's major shit and it's time we started taking it seriously.
So, for me, I think I'll stop pretending I'm fine, and start talking about women's wellness in a way I wish people would have talked about it to me.
Grace and Kate's mom. (Shanell)