It’s been awhile since I've written to you. I’ve made it my business to write about you many times, and whether you’ll approve of everything I’ve written, and shared with your adoring public, is still unclear. I figure, worst case scenario, we’ll share a therapist someday and you’ll have ample opportunity to tell me off or thank me for my forward-thinking, and exceptionally thoughtful prose. At least that’s how I choose to imagine it playing out.
Anyway, this letter is for you. You, my seven and three-quarter year old doll, the sunshine to my rain, the sweet to my sour, the beauty to my…well…fair for my age. But seriously Kate, I love you so hard. Let’s just get that clear right away. And you know what, I know you love me, too. I really, really, do.
You won’t remember the first few years when I couldn’t get my nose out of an autism book long enough to take a good look at my littlest girl and appreciate her for every little quirky move she made. There were times when you couldn’t look at me, or answer to your name and it was crushing. You often ran off and never, ever looked back to see if we were following you. To be fair, you’ve held onto to a form of this fearlessness that terrifies me to this day (Oakley, your loyal service dog has helped with this), but back then, I felt like you didn’t need me or didn’t want me, and it hurt. I wasn’t yet able to understand that it wasn’t about ‘our relationship’ but more about your purely innocent trust of all things. I know, I know, I have this annoying way of making things about myself. Let’s explore this more in future therapy. So, I read and I read and then I read some more because I was going to understand autism, what made my little girl tick, at any cost.
I guess I felt like I was failing you if I didn’t figure out as much as I possibly could on the subject. I realize now that it was just my way of coping, and not very well, at that. Over the years I’ve found other ways to cope. Writing helps, and food, and art, oh and food, and wine, and of course, food. What did I have to cope with you ask? In your eyes, and my own, I have the sweetest, funniest, most amazing little girl who happens to have autism. In fact, some might argue that the autism made her exactly who she is. So, what is there to ‘cope’ with? In the beginning it was fear of the unknown because ‘autism’ can be such a scary word for new parents. Then later on it became anger at how misunderstood you might always be. And now it’s changing because I’ve spent the last seven years watching you hurdle mountains they said you’d never climb and more importantly, I’ve watched you do it without a thought to any other possible outcome. You, with your handsome service dog by your side, have rocked it.
You’ve come so far, Miss Kate; and not just in your taste in music (remember the ‘Wiggles’ years? You’re making friends, now. It was hard to imagine that my powerhouse little blonde tornado could ever slow down enough to make a friend. But you did it, Baby. You didn’t change who you are or pretend, because that is simply not an option for you. You owned your silliness, and your never-ending energy and your Kanye-esque confidence and you found your people.
I’m proud of you Kate. You’ve taught me so much, and I only hope to someday return the favor.
All my love,
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I'm not your moral compass. I'm a wannabe writer with a small but very loyal following, so please don't make any of your major decisions based on my ramblings. I'm just not who you think.
I want to be a warrior mom who spends her days advocating for the rights of individuals with autism, but I also want to stay home and read while drinking boxed wine.
I want to have the patience to talk with Kate about her birthday every single day until it arrives, and then start again the moment it's over, but I also want to turn up Netflix and tune out the birthday script. Yeah, I said it. I want to absentmindedly shake my head while actually focusing my attention on the new season of Black Mirror.
I want to make sure I arrange well-planned play dates with the two friends that finally found their way to Kate and monitor her social interactions to ensure she doesn't scare them away, but I also want to give them sugary snacks and the WiFi password so I can hide in my room and catch that elusive nap.
I don't indulge in these selfish behaviors as much as you might think; or maybe I do, I don't know how high your standards are and frankly, I can't be bothered to worry about that because I am currently using up all of my worrying time to worry about a future that is as uncertain as any of yours.
I do spend much of my time working a full-time job as a teacher, organizing speech and occupational therapy appointments. I do fret over play dates and whether her big sister is getting enough of our attention. I've devoured every autism-related publication I can get my hands on, and I've read the entire internet but I simply can't do these things as much as I did in the beginning.
It took me a few years after the diagnosis to realize that attention must be spent on vain and trivial pursuits. Time must be spent wasting away entire afternoons debating the merits of battery-operated scissors or cat houses and that's okay.
So, if you're still here, reading this, and you'll forgive me my transgressions, I'll continue writing. Or actually, maybe just keep your standards low because I'll probably just keep writing, anyway. :)
p.s. I love sharing our stories with you. If you like following along, consider buying me a coffee to help continue making this website free.
While this update might be a little late coming, it will also be poorly written and self-serving. Yes, I know what I did there.
Okay, our most recent trip to Boston Children’s Hospital so Kate could participate in her third and final round of their autism study.
It was the week before Christmas so Boston was all decked out and though we’ve been many times before, Quincey Market at Christmas is something to behold.
The girls adore Boston and all of our friends at the hospital but this trip held a big bad blood draw for Miss Kate.
In the interest of being honest with our littlest one, we told her she would be having blood drawn.
Now, before you ask, I don’t know what the hell we were thinking because she fretted about that for the months prior to the trip and her anxiety only increased when we arrived.
So, we decided, too little too late, to lie to Kate and pretend we were walking over to the clinic because the doctors wanted to see her cute outfit. (Yep, that’s the level of deception I could manage after driving to Boston for eight hours with the remnants of the stomach flu).
Well, cut to the blood draw and the unnatural strength of a seven year old who realizes she’s been lied to and you’ll quickly find a team of professionals to hold down the Herculean child like they do it every single day (and, of course, they do).
Next, they had to take blood from Alex and I for the study. Something about the parents of children with autism being ridiculously good-looking...
All in all, we’ll take the win for this trip. And you’ll be happy to know that the results of the study, though not available yet, are sure to change the face of autism for little girls everywhere.
And some photos below. The girls in the hospital waiting room (so many toys).
Kate comforting Alex after his blood draw went a little wrong. (Hers is all done at this point, you can tell by her tired eyes)
Kate at ‘Dick’s’ restaurant with a pretend pout because we always have fun there.
And finally, Grace and Kate in front of the Christmas tree at our hotel.
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Grace and Kate's mom. (Shanell)