You guys know how I like to document everything, so here it is. The long and mildly disjointed detailing of our visit to Boston Children's Hospital. Kate is taking part in an 'Autism Consortium' over the next six months and this was our first visit to the hopsital. If you want the quick and dirty, we'll take the W, and you can stop reading now. If you want substandard prose discussing things that have little or no bearing on our visit, read on.
July 9th, 2017
We get in the Sports Van, as Alex calls it, and head towards Boston. We get about five hours before we have to stop for lunch. We make great time. It could be our stellar parenting or the iPads we made sure were loaded with brain-numbing entertainment. It's really anybody's guess.
We stopped in Newport, Maine because we know there is a McDonalds for Kate (autism=beige food) and a Subway for the rest of us. We make our way to the drive thru but the line-up is so long it was hardly worth it. Alex let Oakley stretch his legs and I ventured into the restaurant to order Kate's Happy Meal.
Now here's a funny story. Stop me if you've heard it.
The line-up inside was equally brutal but at least I didn't have to listen to Alex complain about the wait time. I took my place in line and immediately regretted not bringing in my phone. There's a construction crew sitting near enough the line that I decide to listen to their conversation to pass the time.
"Did you get mine?" Asks the dirtiest of the three.
(Through a mouthful of food his buddy answers) "I don't fucking know."
"You got mine asshole."
Finally it was my turn.
Cashier: Can I take your order?
Me: Could I get a Chicken McNugget Happy Meal and an Iced Coffee please?
Cashier: What to drink with the Happy Meal?
Me: Nothing, thank you.
Cashier: It comes with a drink.
Me: I understand. I'll pay for it. I just don't want it. Just the Coffee, please.
Cashier: You have to have a drink.
(I'll give her the benefit of the doubt. Maybe she didn't hear me)
Me: I don't want a drink.
Her: Just sec. (walks over to get her manager)
(Did she really just walk over to get her manager?)
Manager: Can I help you?
Me: I just want the Happy Meal, please. I don't want the drink.
(I say it with more force now. I enunciate each word and I've lost interest in the construction crew. I've driven five hours with a cranky husband, two small children and a flatulent dog. Bring it.
Manager: It comes with a drink.
Me: I realize that but I don't want the drink.
Manager: I'll just give you a cup and you can go fill it with water.
Me: I don't want a cup.
Manager: It comes with a cup.
Me: Keep the cup.
Manager: (She annoyed now, and her sour look lets me know it) Ring her in.
Me: Thank you.
Cashier: (Hands me the Happy Meal and the coffee) Not even a chocolate milk?
I make my way to the van. It's time to head over to Subway to feed the rest of us.
Cashier: What can I start for you?
Me: Could I please have a Turkey Deli for her (I indicate Grace)?
Cashier: We don't have that. Do you want a six inch for her?
Me: Do you have a kid's meal?
Cashier: Yes, it's a 4 inch instead of a 6 inch.
Me: Okay, she'll have that.
Cashier: *pulls out a six inch sub bun, cuts two inches off and throws that two inches in the garbage.
We made it to Boston.
We check in and wander around until we find a spot to eat. Wahlburgers, it is. Perfect. So good. So, so good.
It's going to be an early night. Our bellies are full. Eight hours of driving was enough.
Early the next morning we hit the hospital. They afford us free parking, which I'm told is at a premium in the city of Boston. We are ushered to meet the clinicians that will be working with Kate.
They offer to take Grace to a playroom to wait with someone while we go over some paperwork. She's terrified. She clutches my arm. Grace is shy and as cautious as Kate is careless. We ask if Grace could come along to save her the anguish of going somewhere unknown and we head into a room to sort out some things.
Next they ask Kate if she is ready. She's practically vibrating with excitement. This whole idea of looking at her brain has thrilled her and she's gone with a clinician before I can lean in and remind her not to go in their purses.
Grace and Alex and I will wait in the 'Family Room'. Grace plays happily. It's going to be four long hours before we are done for the day. Kate will be participating in an exhaustive cognitive assessment. I wonder if she'll make it. She's in a room near us and I've no doubt she'll tell her doctors she's finished if she sees fit.
Now we wait.
Finally, she comes back to us.
She's beaming. She's loved the attention. Fantastic. We'll easily get her back tomorrow for the next session.
We head out to enjoy Boston for the rest of the day.
First stop. Quincy Market, of course. We've been a dozen times, at least, but we still love it.
We find "Dick's: Last Resort", a restaurant where they are, well, rude to you, all in good humour. They make you paper hats that say things like "Motorboats $1.00" or "I went to the prom with Jesus". We knew they toned it down when you dined with kids so we gave it a try. It was a hit. I have never seen Grace laugh so hard. She was getting some of the adult humour and it was making her giggle uncontrollable. You want to hear a magical sound? It's the uncontrollable giggles of a little girl that often takes the back seat. It's the unbridled joy that comes with being on vacation with your family and having everyone laugh with you. It was awesome.
Day two at the hospital was similar to the first except Kate was going to be wearing the treasured 'brain hat' we've been telling her about. 'Brain Hat' is the technical term, I think. She also got to wear a few other cool devices but I won't pretend I know what they were for.
This was just the first of three trips to Boston Children's Hospital. This is probably because Kate's brain has so much to offer.
I know what Kate's Brain is going tell you.
It's going to tell you that:
Kate is innocent. Innocent like few others. Sure she runs on the selfish side (theory of mind) and she is an Olympic level sore loser (ibid) but she's so authentic it could make you weep.
It's going to tell you that:
Kate always looks mad when she is trying to work something out. Like when she is puzzled by something or working out what we want from her. I like this about her. I think it's resolve, strength, motherfucking tenacity. It's impressive, like much about her.
It's going to tell you that:
Kate isn't afraid, of anything, ever.
It's going to tell you that:
Kate is strong. Kate works hard to every single day to make sense of our incessant need to speak in metaphors. She works hard to make sense of our bizarre social rituals.
It's going to tell you that:
You've been privileged to meet her.
We're done at the Hospital! Time to hit Freeport. An overnight stop on the way home. We'll browse the shops and check out LL Bean. The kids will swim in the pool and we'll eat at a nice restaurant. Can't wait.
No offence Boston but $230 American dollars gets a hella better hotel room in Freeport than in Beantown. Oh the luxury. I could cry. Oh but wait, I will.
We relax in the room with its king size bed and pull out couch before we head out for a little bit of shopping. The kids need clothes, as usual.
We wander down to one of my favourite stores. The Coach outlet. I like purses and wallets and bags. We walk in and I take in the smell of expensive leather and cheap perfume.
Alex turns to me and says. "I'm taking the kids. You stay here and buy whatever you want. Happy Anniversary."
So, I, of course, burst into tears in the middle of the Coach outlet in Freeport, Maine.
I'm not sure why I cried. And it won't be the last time I cry this week.
It's either because the gesture warmed my heart, or the emotional toll of taking Kate to Boston Children's Hospital finally got to me, or I have a bad case of the wants and Alex finally allowed me to release that godamn beast. I think we all know the answer.
We are back home now. It was a whirlwind four days and that took a lot out of our girl. The trip was successful to be sure but Kate used all of her tokens and more to show her 'best brain' to the clinicians at BCH. We weren't home long when she fell completely apart at the grocery store. It's okay, because there are two more grocery stores near our house so we never have to go back there again. She then fell apart in the parking lot of the Vet's office. You'll have to read the tiny texts to know more.
This is why I never take her to liquor store, because I just can't afford to lose that privledge. You have to find the funny in these things, you know? You just have to.
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.
Some Highly Questionable Parenting Advice For Parents Who Just Need To Phone It In This Week #Netflix #StreamTeam
Is this week just kicking your ass? Yeah, me too. Here’s how we’re going to cope:
Is your child refusing to participate in the sport/activity/music lesson you paid good money for, an activity they actually begged to join in the first place?
Hey, it’s okay. Your child is probably mediocre at best and this activity won’t be leading to any major scholarships or career choices. Let that shit go. Simply lean in and tell your child in a hushed voice that you are going to sell their violin/hockey skates/tennis racquet. Tell them that’ll you use the money for their college fund but then go and buy wine.
Is your child refusing to eat a meal you prepared, again?
Don’t get mad. You need to save your energy to stay up after they go to bed to get through a whole episode of House of Cards on Netflix. Remove the meal from in front of the child and swear under your breath. Keep the smile on your face, and hand the child a packet of goldfish. Trust me, they’ll be pleased. As you scrape the meal into a tupperware and slide it into the back of the fridge to be discovered some day next Fall, remember that there is booze in the cupboard and bedtime will be here soon.
Is homework a problem? Do they whine and moan about it making you crazy?
Write a note to their teacher. It should say something like this:
Dear Mr. C
We’ve decided as a family we will no longer be participating in homework of any kind. There is currently little evidence to support any benefit to homework for elementary aged children, and furthermore, it makes us argue at the dinner table. If we’re going to spend the evening arguing we’d rather do it over something more meaningful, like which superhero would win in a fight, or if cats can get married.
Is your child refusing to participate in a bedtime routine you have devised after many years of researching what works best for your very particular, moody and self-absorbed son or daughter?
Fret not. Hand that child an iPad and tell them to fall asleep to their favorite show tonight. When they look at you with surprise and confusion say: “You better go now, before I change my mind.” Your child is sure to get ready for bed quickly and you likely won’t hear from them until morning.
Is your child refusing to get out of bed in the morning? Did they stay up way too late watching Paw Patrol?
Offer them a new fidget spinner or the equivalent (about $5) to get up and get ready for school. You’re likely tired from your House of Cards binge and you don’t need this shit right now.
Is that little Maverick pulling the old “I can’t find my shoes” when it’s time to get in the van and head to school?
Send them to school shoeless. Tell them you didn’t have any shoes growing up and you walked to school in frigid temperatures. (I know you had Jordans and Chuck Taylors but you’ll want to set this one up) Trust me, this will hurt them more than it will hurt you. At recess time when they have to run around and play on the crushed gravel in sock feet, they’ll instantly remember where their shoes are and never forget them again.
Now, because you’re going to pay for this….big time. You better enjoy these little breaks while they last. Through extensive research, I’ve come to the conclusion you can do this about once every six weeks with little damage to your routines. Choose your times wisely.
Be safe out there.
I've made it to the office of the gynocologists, (I just let spell check take care of that one)
I hate it here. It's not the people, they are lovely. I think. I'm not much for talking to them. "So, what are you in for?"
Seems weird somehow.
I'm too worked-up about the impending pain and humiliation. Call me crazy.
Today though, today the receptionist is making me angry
She won't stop clicking her mouse.
That Maddening click of the mouse is making me twitch a little.
Are you filling out a fucking survey?
Can't you see I'm upset?
Type something or better yet take a personal call, just please Stop clicking that mouse.
Why did I sit so close to her desk when I knew I was at the height of my anxiety.
I'll Try and distract myself with a magazine.
The first thing I see is Oprah and her smug face smiling like no one has ever removed a section of her Goddamn uterus. Her uterus is probably made of solid fucking gold
God, I love Oprah. What is wrong with me? Why have I turned on Oprah?
Phil Collins on the radio now: 'take a look at me now' Dude can wail, though, but I still need him to stop it right now!
My feet are dirty.
Shit, she'll see that when they are in the soul-destroying stirrups.
I'll say I was gardening just before I came. How the hell did my feel get so dirty? Yes, gardening is a good excuse. That'll make me sound good.
Jesus, what if they stink?
I surreptitiously lean over to my crossed legs and smell my blackened Feet. Christ it looks like I walked through the fire to get here.
Metaphorically, maybe I did. How's that for melodrama?
Click, click, click with that demon mouse. I imagine ripping the mouse from her manicured hand and throwing it to the floor.
You won't like that, at all, will you...Margaret.
I'm guessing that's her name.
Feet smell okay, I think.
Fuck, I hate this. Is this a phobia? All these other women looking calm AF. Are they not about to have a speculum inserted into their vaginas? Do they not fear such a thing?
Am I wrong?
Moved into the office now. The second waiting room really because I know I'll be staring at these walls for awhile
I decide to check out the art.
My heart is beating. I'm sweating. I glimpse a diagram and take it in. I fucking hate this poster. It's a detailed drawing of the female reproductive system. Would a poster of Chris Hemsworth not be a tad more calming than the extreme close-up of the vagina and anus?
Christ, what the hell is on that tray in the corner of the room. I won't look.
The liquor store is across the street. If I make it through without tears I shall reward myself with a bottle of the good wine, like $20 stuff.
Is that really what an anus looks like up close? I can't stop staring up at that anus in the diagram. I finally get that balloon-knot reference . Ha!
It's so fucking bright in here. The light doesn't have a dimmer. Why is it so bright??
I suppose the doctors isn't looking forward to this either.
I wonder if they moved me into this room because I was making the other patients nervous with my shifty eyes and shaking legs.
I don't think the Ativan is working. I borrowed some from a co-worker just before I drove here.
I birthed two babies. I birthed to babies. I birthed two babies.
Madonna now. "Crazy for you". Doesn't seem appropriate. I think Ozzy or Metalica would be better. Something dark, something sinister.
God, I am so damn Dramatic.
Just picture yourself driving home. Yes, imagine that. In less than an hour this will be over and you'll be driving home. Or straight to the liquor store.
What do men have to do?
Will someone speculum their anus' at some point? God, I hope so.
It's only fair.
Someone's at the door
Fuck, I can't do this.
What if I left? I'm a grown ass woman. I do what I want, right? I could get in my car and drive to the grocery store and fill the next hour with gourmet chocolate and
Good wine instead of a uterine biopsy.
No, that's bad. Bad idea. Gotta be responsible.
The easy listening station is making me homocidal. Bryan Adams now and I despise it. Not that I normally have a problem with the fellow cannuck but his melodies are just not the soundtrack for this ridiculous situation.
What do I do when it's done? Do I say thank you?
No, that would be weird.
What will I say? Maybe, I could say: "that was awful. I hope we never cross paths again?"
Nah, too dramatic and she's a lovely Doctor.
I think I'll just say nothing.
How sad is this? Women do this everyday and make no big deal of it.
Those women are amazing
Those women are tough as nails
Those women have access to better drugs than I do.
I'm going to tell her she has 60 seconds to do what's she gotta do in there and the I'm out.
These walls are too thin in these offices. I can hear someone getting 'done' and I am nauseated. She is chatting with the doc about her periods.
I expect to be gritting my teeth and hiding my eyes. I'll certainly have nothing to say during the procedure.
"So, doc, did you catch the Celtics game last night? That Isiah Thomas is some baller, eh?"
17 minutes late now.
News radio now. Good. Talk about murder or something and distract me.
What if she forgot about me in here? Maybe I'll just be really quiet and she'll head home for the night.
OMG they are talking about weather now.
A nurse just came in and asked me about some pills I was supposed to shove up inside me last night and I cried like a maniac at the thought and she hugged me.
She must think I'm some piece of work.
What pills? Was I supposed to get pills? I probably swallowed them.
Yep, that's me
So, I remember taking my anti anxiety pill this morning (shocker, I know) and then I think I took my Blood Pressure medicine (also not a surprise, right?!)
Nope, I definitely didn't swallow my vagina pills.
I just didn't get any.
The doctors kind face peeks in. She says gently: " Hey, awe Shanell what's going on?"
I cry harder.
She sits beside me and takes my hand.
I manage to tell her I'm afraid to have the biopsy.
She tells me that since I didn't follow the instructions and take the pills we probably should not do it today.
We will reschedule.
What the hell do those pills do?
I settle a little at the thought of escaping today. But quickly remember I'm just putting off the inevitable.
She reaches for my arm and apologizes for wasting my time.
What? This sweet doctor whose been faced with an unstable 40 year old women crying in her office is apologizing to me? Surely, I have wasted her time.
What a mess I've made.
The pills. The up your vagina pills were in a prescription she gave me for an IUD. I chickened out regarding the IUD (another surprise) and didn't fill the prescription. If you don't know what an IUD is, you'll have to google that.
I apologize between sniffs for confusing things and she kindly nods and reminds me it is no problem at all. She says she will be right back with a new appointment time and a brochure on another procedure that might work for me. She says she sent her receptionist home early because it is such a beautiful day.
So she's that kind of person and I've just sat and cried to her like she was considering taking my first born.
She's ushers me out with my new appointment time now.
She might be afraid to be alone with me at this point.
I can't blame her.
I'll make my way to the van.
I'll try and block this out and gear up for the next one.
Sure, I cried, blubbered even, but, I think I'll grab that wine in any case.
I can do this, right?!
There she is, all decked out for picture day in leopard ears, of course, with her best pal and service dog extraordinaire, Oakley by her side. I know you love her. Her antics have been funny and silly and even a little heartbreaking, at times. We love her, too, obviously.
So, when I take you down this road I want you to remember that as frustrated as I get with her difficulty making transitions, I am never frustrated with her. She is, as usual, navigating a system meant to confuse her and she's doing the very best she can. Having said that, let's explore shall we, the issues of transitions and why they are so goddamn hard.
If you're new to us, and I doubt that very much as our following has been a loyal group, you may not know what I mean when I say 'transitions'. Don't fret, this isn't one of those you'll have dig out the ol' Merriam Webster for, this word simple means, changing from one activity to another. Here are few examples:
Leaving your beloved dog to have a bath
Leaving your beloved bath to brush your teeth
Leaving your beloved bathroom mirror to read a book
Leaving your beloved book for the prospect of sleep
Leaving your beloved bed for the prospect of anything
Do you see what I mean?
Change is hard. So, Very, Hard. Argh!
Which make asking her to change, So, Very, Hard. Argh!
There are times that preferred activities make it easier, but for the most part. Kate, and many like her, do not like to make changes, period.
If you suggest this is a 'behavior' that can be extinguished via therapy, social story, threat or worst of all a fucking sticker chart, you'd be wrong and also, say it to my face.
If, like me, you are mostly lost for ways to make transitions easier, you're probably in the right place. Not because I am going to tell you how to make them easier, but because I will always have a glass of wine with you and I will sometimes even listen.
Now, back to Transitions and their shittyness.
Here's what I think I Know: (notice my language here? I've been on the business end of far too many harshly-worded emails and comments about how very little I actually do know, to make any declarations)
Transitions are hard because:
Shifting Attention is Difficult:
It can be very challenging to shift the attention of a deeply focused person on the spectrum. This could be considered a good thing in many cases, (see pro-athletes) but when you're trying to get out the door to school, it's less useful.
De-engaging and Re-engaging are Problematic:
The fact remains that autistic brains are forever attempting to make sense of strange world, and once they have engaged, they can feel a sense of peace or calm in a brain that is often very busy (or so I am told by persons on the spectrum). Leaving the peaceful, calming activity and trying to re-enter 'that zone' so to speak, at a later date with new stimulus attached can be futile and sometimes painful.
Making Predictions is Nearly Impossible:
Just because the bath routine has been the same each evening for past eleventy bazillion days, that does not mean that it will be today and certainly may not feel the same. Other stimulus may have entered the brain making it difficult understand or enjoy the bath routine. It may seem unpredictable which is very frightening, at times. Moreover, if the day was particular busy they may simply not have enough tokens left after a long day of 'spending them socially'* to participate in a bath.
So, as usually, I've offered little in the form of helpful advice but at least we chatted, right? And I am serious about that glass of wine.
*We refer to Kate's energy for a given day as tokens. We may have stolen this directly from someone, but we can't remember, so for the sake of this post let's just say we made it up. On a regular day, Kate may have about twenty tokens to spend before she enters into meltdown. Most days, this is just fine, but throw in a birthday party, a holiday or even an unpredictable event and she begins to use more tokens than usual leaving her without tokens to finish her day. These days blow.
Miss Kate, with her autism, never-ending energy, unnatural upper-body strength and penchant for refusing meals, baths, homework, bedtime or really anything she doesn't want to do, has been giving us a run lately. A run like we haven't seen since she was small(er).
It's not been easy in the behavior department, to say the least.
I've made every single version of a god-forsaken sticker chart and frankly: fuck those sticker charts.
I've tried every way to reinforce and reward. I've done social stories, and social-thinking activities and I've even made futile threats. I've pretended to cry and then, just for fun, I really cried and that little blonde spitfire doesn't respond.
She is not responding to all of the things the books are telling me to do. She doesn't respond to things that used to work, she doesn't respond to things that should work and she sure as hell doesn't respond to the damn sticker charts.
However, after each battle, as I sit down in 'my chair' and thank my husband for the abnormally large glass of wine he just handed me, I try to remind myself that she doesn't fit in, and that's because she isn't meant to.
This little girl. who prefers costumes to clothes and is aggressively social to everyone she meets, is not going to follow our rules, or the rules of 'autism' or anything else, for that matter.
She has made her own rules and she is spending a lot of time trying desperately to help us understand them. She is likely just as exhausted from our battles as we are. She must marvel at how dense we can be; what with always asking her to do things she wouldn't prefer. (Theory of Mind)
So, when I arrive home this evening ready for battle, I'll find her sitting at the kitchen island, wearing a chicken costume, holding a sword in one hand a barbie in the other, I'll give her a hug and tell her that I love her because there is nothing I would rather do.
And then we will try again.
Okay, we have, in the past, raised money via this website for charities like National Service Dogs, a charity we both benefit from and strongly believe in. We've even raised money to hold autism friendly events in our city.
However, I must make this clear, once and for all. We are NOT here to raise money for anyone, least of all ourselves.
As soon as I announced we were going to Boston, the emails started coming. People asking if they could help us raise money for our trips over the next year. At first, I thought, yes, great, we could use the help. The Exchange rate is going to hurt us big time. There are hotels to pay, baseball games to see and expensive Tori Burch wallets to buy. (I'm kidding, we weren't going to take anyone's money).
It seemed innocent at first; a small business owner asking to donate ten percent of their sales to our "Cause". Of course, it's soon made clear that we must promote the business to generate sales and every sale generated from our website will earn us that dime.
Am I being a jerk here?
We very much appreciate the many. many, many, MANY offers to give us a portion of your sales from Scentsy, Thirty-One, Tupperware, or any other number of companies. However, when you ask me to promote your business to the loyal followers of this blog so that we may earn ten cents on your dollar, you can see how that just doesn't sit right. I love that you are venturing into business for yourself and I truly wish you the best, but this just isn't for us.
I feature small businesses, and shops frequently in our Products We Love section, which allows me to support artists and best of all, do giveaways for our readers. And that is as far as I am willing to delve into that world.
Why do I feel rude saying this? Is it because I am Canadian?
Grace and Kate's mom. (Shanell)