Friday, July 18, 2014

Word

While I don't claim to ever have been a huge Weird Al fan, his recent music video "Word Crimes"  did rouse a nice, big...Amen!!


Monday, June 23, 2014

An Insider's View

Here is a link to a wonderful post about sensory seeking written by an adult with Asperger's. I love how she talks about how the activities made her feel.

I had so many seeking tendencies growing up, and so did Victor.

Every day at recess in fifth and sixth grade, my best friend and I would swing as high as we could, then jump off. Then one of the boys showed us how to back-flip off the swings and we were hooked! The first couple times was terrifying, but after that it was pure exhilaration! Until my best friend broke her arm, not even from a high jump or a back-flip, just a little jump! And the only person who would ride the Zipper or Eggroll with me at the fair was my Uncle Joe (who was kind of like a big kid himself) because I couldn't get enough of the rolling and plummeting toward the ground upside-down! I did manage to talk my older brother into riding the ejector seat with me one year though. Oh the blissful ignorance of potential injury and steel stomachs of youth!!

Victor once rode The Mindbender, an indoor roller coaster in the Edmonton Mall, 68 times in a row!! He was nine years old! His parents finally made him stop because they were afraid he was going to get brain damage! And he loved rides like the Hurricane and Teacups that spun super fast. He spent uncountable hours on the trampoline every summer, grazing his hair across the fabric with flip after flip. Not to be left out, his dad had built a literal sensory extravaganza as a backyard, complete with a skateboard half-pipe, slide from the top of their two story house to the ground, and zip line.

At any rate, it's really no mystery where our munchkins get their seeking tendencies from!

Funny thing is, after months of pregnancy nausea with each of my kids, just riding the Ferris Wheel now makes me feel like I'm going to loose my lunch! So much for mother-son bonding on roller coasters and fair rides. Just have to leave that to Daddy, and eventually sensory seeking siblings!

Wednesday, June 18, 2014

I'm Sick

Since Monday afternoon Kit has been up and down with a fever.

Yesterday, we were hanging out on the bed together. She was playing on my phone, and without looking up, she said very matter-of-factly:

"I'm sick again."

"Where in your body are you sick again?"

"My eyes."

When I asked to see her eyes, sure enough they were teary, red-rimmed, glassy, feverish eyes. They were indeed sick again. Her fever and crept back up.

"I'm so glad you told me where you were sick! I'll get you some medicine."

While I'm never glad for my babies to be sick, this was a humongous breakthrough for Kit. To be able to tell me that she didn't feel well.

While she's never been completely unresponsive to pain or discomfort, she has been seemingly under-responsive. Often even seeming to enjoy what many others would consider painful or unpleasant, such as having an ice cube put down her shirt, by laughing and shouting "again!"

For a long time it seemed like it was not the shots that made her cry during vaccinations, but rather the being held down, because she would stop crying immediately when she was released. She'll just stand in an ant pile watching the angry insects biting her tiny toes. Nor did she register that what she felt when she put weight on her sprained ankle two months ago was pain. She would say no, when I asked her if it hurt, even though she would cry.

And we haven't started potty training because she hasn't shown signs of being able to identify the feeling of a full bladder or an impending bm. The handful of times she has actually peed in the potty have been circumstantial and she always looks thoroughly surprised.

A year ago, she couldn't point to a scrape as a source of discomfort, though she does finally do this. Almost obsessively in fact, asking repeatedly for bandaids, then pulling them off to look at it then crying for a bandaid again. But even this, I think is driven by her idea that it is supposed to be covered, though I think the pulling off part might be a response to feeling discomfort from the scrape.

I honestly believe that very often she doesn't register pain as pain. She is confused as to what she is feeling. Though she is finally begining to sort out pain from pleasure. And I think it has everything to do with her sensory issues.

She still requires much deeper tactile input than the average person. She still bites on her own hands and fingers as a seeking mechanism. She actually sticks her fingers into the cat's mouth trying to get him to bite them. We have to supervise constantly the two of them, because she will not only bite him and lay on him trying to get deep pressure input, but it often takes several bites from him before she registers that it is hurting and unpleasant. She litteraly used to laugh and giggle when he would bite her, she enjoyed the sensation, and would get mad at us for taking him away.

I believe that this underresponsive reaction to pain is the same inside her body as out. She still doesn't tell us she is hungry, but she does more often ask for specific foods (mostly candy) rather than just collapsing into a crying heap of hot mess!

She has never complained of a tummy ache! I learned her about-to-puke look after having caught it with my shirt several times without any other warning. She wouldn't even cry.

With this bout of fever, and likely the sore throat and cough that her siblings have been complaining about, she just wants to nurse and be held all the time. Until the medicine kicks in, and then she wants to repeatedly watch YouTube videos about playdough...and nurse. And she's a collapsing mess every time I won't let her nurse or we take the phone or tablet away. In fact, had her eyes not been tearing due to her fever and tiredness, I'm not even sure she would have said she was sick at all. The tears were making it hard for her to watch her videos.

But she did have some kind of recognition of the connection, and I'm so glad. When I began to notice her apparent lack of ability to recognize pain, I started deliberately using specific related language over and over. When she bumps her head, gets a scrape, or other injury,  I name it and say "that hurts" over and over.

I also say where it hurts first, then ask her where it hurts. "You have an ant bite on your toe. Where does it hurt?"   The idea being to help her recognize what that sensation is and to provide her the language to label and identify when she gets hurt. And she is doing better with external injuries.

This is important not only for her to recognize when she is sick or hurt, but also to discern when others are, especially if she has been the one who hurt them. She so rarely displays any understanding of how her actions have hurt someone else that it is difficult to dicipline or guide her behavior. She doesn't seem to make any connection at all, except that sometimes she can elicit a scream from her sister with a pinch or fistfull of hair and tries to repeat it.

She is truly lacking in an understanding of what "hurt" feels like and means for herself, so she is all the more ignorant of what it means for someone else to be hurt.

This is definitely a skill we will continue working hard to help her aquire. And yesterday was a welcome step in the right direction. But I hope she doesn't have to tell me "I'm sick again" for quite a while.