Sunday, November 4, 2012

A Break in the Routine: Part I

Since we could not really afford a big family vacation, I decided that I would use my remaining vacation time to take off a bunch of Friday and Saturday nights. I work a 4 day work week, so this would reduce my work week down to 2 days and allow me to enjoy some time off with the family. You may not be aware, but Tuesdays, Wednesdays and Thursdays (my normal nights off) are not exactly HOPPING. So, we scheduled a bunch of outings that we normally would not do and treated my time off as a bit of a “stay-cation”.

For the first time in our 13 years together, we actually went to a bunch of adult Halloween Parties that our friends hosted. It was a nice break in the routine for a couple that works opposite schedules to reduce babysitting time and costs and share a bed with a 2 year old that refuses to sleep in his own room anymore.
One of our planned events was to go out this past Tuesday to support a friend as he performed at Second City. When we came home from that night, things were pretty normal. It was 1AM and Bianca was asleep in her room, Sofie was passed out beside our longtime family friend/babysitter and due to a late nap, Luis was still partying like a rock star.

While my wife talked with the babysitter, I went to use the bathroom which is located right next to the girl’s room. I heard a “thump”, a slight pause and then Bianca started crying. These are not unusual sounds coming from Bianca’s room. While her sleeping has much improved over the past year and a half, sometimes when she wakes up she cries, gets irritated and will flail arms and legs or head-butt the wall. We tend to run in for the latter, but if she is just a little cranky that she woke up, we let her be and she usually soothes herself back to sleep.

Something about this cry seemed a little different, so I went into her room to find her sitting on the floor in front of her book rack. This is pretty normal as well, so I picked her up to sooth her. She stopped crying almost instantly so I put her down and told her to go back to bed. The problem was that when I put her down, she crumpled to the floor. At first I thought she was just doing the “floppy dead weight kid thing” but then I realized that she wasn’t putting weight on her right foot. I massaged it a little bit and figured her leg must have fallen asleep while she was lying in her mountain of blankets that she insists on sleeping with and brought her to be with us. She was back asleep in seconds so I moved her back to her room.

When I went to wake her up for school in the morning she was her typical self. Mornings are not her strong suit. She was making a sloth look speedy so I picked her up out of bed, put her down and told her to go downstairs so she could eat and get dressed. I reminded her that it was Halloween and that her class party was that day. But as soon as I put her down she crumpled to the floor. This time I picked her up and held her hands and let her walk… she was not putting any weight whatsoever on her right foot.

If you have a NT child and he/she gets hurt, there is a certain predictability to it. The kid gets hurt, kid comes crying to you, kid proceeds to tell you what happened and you determine the best course of action based on the circumstances. With an autistic child, aside from the first part where the kid gets hurt… only some or none of the other “normal” events in the sequence take place. In Bianca’s case, it was none.

Even though there was something clearly wrong, Bianca was acting like… Bianca. Bianca with a mean limp perhaps, but Bianca nonetheless. She was playing, doing her normal routine only not as mobile. I thought about dismissing it as a sprain, but I have heard and read so many stories of kids on the spectrum breaking a leg and walking on it like it was nothing for weeks that I thought we should do something. I am also aware that while Bianca does feel pain, she does not necessarily process it the same way as a NT person does so I woke up my wife to tell her that I thought we had a situation. A trip to the ER was probably called for… and I HATE trips to the ER. Bianca is not too thrilled with them either.

We took Bianca to the ER where they took some x-rays and drew blood… In other words, pissed her off. Ever try to get an autistic kid to hold still for x-rays? Forget the lead apron, I needed a lead suit. I don’t know how many times they had to radiate her, but she needed to be held in place, so Elsa and I were alongside her holding various appendages and body parts… as were two other technicians. My hand was visible in almost every x-ray.

The poor phlebotomist had to stick 2 arms and a hand to get the blood he needed. Again, since Bianca doesn’t process pain in a typical manner the needle meant nothing to her. It was the team of us that had to hold her down (yet again) that was sending her into a full-fledged panic and meltdown. Elsa and I tried singing with her, scripting some of her favorite lines from TV shows and lending a calming tone, but Bianca wanted none of it. She also wanted nothing to do with any of the bandages they placed on her. She pulled, chewed and tugged at every bandage until they were off. Most of the time before the bleeding stopped.

The x-rays showed nothing, so after a 5 hour day at the ER… we got nothing except an appointment with the orthopedic pediatrician the next day. To hold her over, they placed Bianca in a half splint. As the nurse was putting on a bunch of cotton gauze I asked if it would harden like a cast because Bianca would rip it apart in seconds otherwise. It wouldn’t. She did. The splint lasted the car ride home and about 10 minutes at home before she ripped the thing to shreds. I took Bianca to the bathroom grabbed the scissors and cut the splint off. We were going to have to monitor her and she was now going to be a Pirate in a wagon for Halloween.

Coming up in a “A Break in the Routine Part II”…
·         Doctor Knows Best? – We take Bianca to a curmudgeon of a specialist.
·         Blood In Blood Out – We have to get MORE blood drawn after a scary reading from the ER.
·         Them Bones, Them Bones, Them Broken Bones – Answers fracture the stress.
·         Guilty Pleasures – The logical brain battles the emotional brain over leaving Bianca with a sitter.

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1 comment:

  1. OMG Lou, that must have been a really tough day for you. Your Bianca reminds me so much of our Rosie, but Rosie has just turned 4. Rosie is non-verbal autistic, but we get the occasional word too. Also, I noticed in your Thank You video that Bianca moves around a lot (gotta love those gloves, I've often wondered if I should get eyelash guards!!! lol), anyway I can't imagine what it was like trying to get xrays AND blood! We haven't had to do either yet, I'm sure one day we will. We have had our girl in hospital by ambulance once, for severe croup, which cleared up quickly once we got her treated, but of course I could just cuddle her whilst they gave her that treatment, so it was pretty easy. I'm dreading the dentist, oh boy. I also have a blogspot blog, it's a podcast of a book I'm writing on estate planning for special needs kids. I'll def be catching up on your blog because I love the way you write so openly... you're doing an awesome job Lou!! Awesome Blog!!! Xxxxxx Kate
    (PS. can't wait to read the rest of this story!)