A Diary of Our Visit to Boston Children's Hospital #autism

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." 

--Riveting

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.

And 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.