Wednesday, November 24, 2010

It Smells Good...But You Can't Smell Texture.

We had lasagna for dinner. Aspie wouldn’t eat. His cold is heightening his sensory issues. His response: It smells good…but you can’t smell texture.

He is hungry, but his fear of texture is overwhelming right now. So, he prances around the kitchen tapping his fingers on every surface available while stressing and whining about his rumbling tummy. This is life with a teenager with Asperger’s Syndrome.

His sensory issues are directly linked to his stress level. Thanksgiving break = high stress level. A common cold= high stress level. (We get to experience both in one week!) The higher the stress level, the more intense the sensory issues. As a teenager, he takes care of most of his issues himself. He handles his own showers and prevents his wet hair from dripping on his dry clothes. He turns his socks inside out-they’re softer that way. He doesn’t shave. He uses only one brand of scent-free deodorant. Food is where the rest of the family becomes ultra-aware of his sensory quirks.

Lasagna has the wrong texture. Spaghetti sauce should be run through a blender to remove unappealing lumps. Spices and seasonings are taboo. No onions, parsley flakes, or bits of vegetables (tomato, mushroom, green pepper). No mixed foods (no soup, stew, chicken and noodles, casseroles, etc.).

In a bit of Aspie irony, everything must be swimming in condiments. Anything spicy will do, but his faves are mustard, honey mustard, and BBQ sauce. He goes through about a bottle a week, of each. He survives on peanut butter, bread, and chicken patties.

He started a new medicine last month and it increased his appetite to Herculean proportions. He is gaining weight at an alarming rate now and I find myself policing his food consumption 24/7.  Maybe I can find a way to texturize mustard and BBQ sauce.       

Sunday, November 7, 2010

SCFE- The Story of My Little Skiffy

My herd is very special. If something is rare, odd, or just plain wierd, it will affect my herd in some way. So it went with my little Skiffy. Skiffy is 13 years old and fiercely independent. It also seemed that her middle name must be grace. She had an amazing ability to fall. I mean, she didn't just fall, when she fell it was spectacular. She could fall walking across a room, walking down stairs...once she even tripped over her locker. How in the hell does one trip over a locker?

Her falls often left her with a sore knee and a limp that would persist for a few days. The falling thing seemed to last several months and I was convinced that Skiffy was just hopelessly clumsy. While at the doctor's office for a routine check-up, I mentioned it to the Dr. They decided to take an x-ray of her knee the following Monday just to see what was going on.

We never made it to the Monday appointment. On that fateful Saturday that August, I dropped her off at the skating rink to enjoy the day with friends. Skiffy called at 3:00 to be picked up early. When I arrived at the skating rink, she sent a text that I will never forget. "you have to come in mom i hurt my leg"

What happened over the next several minutes is forever seared into my memory. We argued while I tried to wrap my mind around what was becoming clear.
What happened?
I fell.
Fell how?
I did the splits. My leg went up behind me.
Can you walk?
You have to.
I can't.
How did you fall again?
I did the splits. My leg HURTS.
You probably pulled something. Where are your shoes? I'll put them on.
I can't walk.
You have to. We'll go to urgent care.
(I touched her foot to put her shoe on.) OOOOOWWWW!
What hurts?!
My leg!
Where? Tell me again how you fell? Who saw you fall? How did you get to this bench?!
(The tears are starting.) Some people carried me here. They took my skates off.
You have to get up. You've probably pulled something. We'll go to the ER.
I can't.
YOU HAVE TO. The doctors are NOT COMING HERE! You have to stand up!
Call an ambulance.
I can not call an ambulance because your leg hurts. You have to walk on the other one. I'll help.
I can't walk.
Do you think you broke something?

Returning with a kid that works at the skating rink, I continued...
Put your hands around our shoulders and we'll walk you to the car.
Exasperated, the employee left and returned with a chair.
Slide onto the chair.
You have to!

At this point, I was scared. My mind was shifting back and forth between 'she is so stubborn' and 'what if something is really wrong?' I contemplated calling an ambulance but nothing I was looking at said that this was a true emergency. Nothing looked out of place. She had not been crying when I arrived. Somehow, she had gotten to the bench, surely she could get to the car. My mind reeled. I needed to see her try to move.


She moved to the chair, sort of. Her body began to tremble. I knew. The tears started to well up in my eyes now and fear took over. A new conversation began between me and the manager of the skating rink.

Call 9-1-1.
Call 9-1-1. I'm not moving her.
Well, either you're going to move her, or they are.
CALL 9-1-1! They can mover her!'re the mother.
YES! I am the mother. And this child doesn't cry. Something is terribly wrong. Call 9-1-1.
Grabbing for my cell phone, YOU KNOW THE ADDRESS, I DON'T!
He left to make the call.

I called my husband and said simply "I'm not moving her, we're calling an ambulance." He replied with one word, "OK."

The firemen arrived first. They asked a few questions and put a blood pressure cuff on Skiffy. Then a terribly odd thing happened. They removed the cuff and took several steps away from Skiffy. The fear gripped me harder. Something was very, very wrong. One fireman took me by the shoulder and turned me away from Skiffy. He said "we're not going to move her. We'll just wait on the paramedics. She has probably dislocated that hip."

Well...there it was. The confirmation. My child was seriously hurt. I answered some questions for the fireman and waited on the paramedics to arrive. Next thing I know several firemen and two paramedics are stepping in to move my little Skiffy onto a backboard. Although I have never experienced this before, something in my mind knew what was about to occur and I naturally cringed away from it. I knew that I had no place in the situation. I couldn't help. I couldn't get close enough to console her, so I just turned away, as if turning my back would close my ears to the screams that followed. As we rolled toward the ambulance I called my husband-"we're going to M." "Ok."

The ambulance ride was horrific. We moved cautiously at 40 miles an hour, but Skiffy screamed out with every bump we hit and I cried with every scream and the paramedic who was driving lovingly patted my leg and tried to keep me talking and laughing. Soon the morphine kicked in and we all started to relax a bit. Funny how the morphine in her I.V. helped all of us.

The arrival at the hospital was a whirlwind. I was hearing lots of terms vollied about by the nurses and EMTs, things I didn't understand, but on occasion I would hear something I could interpret. BP160. Femoral shortening. Rotation. I knew that something between her hip and her knee was not where it should be. It was plain to see with her lying down- one leg was shorter than the other one and clearly not in a natural position. I watched them cut her new red skinny jeans from her body.

Later, in the x-ray room, I first heard the term that would change our little Skiffy's life. The technician entered the room after checking the x-ray and said to the nurse "it's a skiffy." The nurse walked me out of the room and said "it is broke, you won't be going home tonight, she is probably going to surgery."

I tried to dry my tears so Skiffy wouldn't see my fear. With the nurses and technicians I joked about her shredded jeans and now panties that I was carrying in a bag. I went out to call my mother to share the news.
When I returned to the room the ortho surgeon was there. It was all a blur. Broke hip. Slipped something-or-other. Surgery. Pins. Couple of screws. Right now.

I worked with the nurses to remove her black fingernail polish and jewelery. We met with the anesthesiologists and then as she drifted off to sleep the surgeon explained the situation. Worst case we see. Severe break. Severe unstable slipped capital femoral epyphisis-SCFE. Cautiously optimistic. Outlook is not good. Possiblity we could save the bone. Won't know for months. May need a hip replacement. Not good outcome when we replace hips this young. Hip replacements don't last long in patients of this age. She will always have an arthritic hip. She won't walk on this for many months. We'll take good care of her.

And then it happened. The surgeon asked "has she been walking with a limp?"

I felt like I had been hit with a sledgehammer. My baby was hurt in a horrible way and worse, I should have seen it coming. She had been walking with a limp. Yes, she had knee pain, as a matter-of-fact we were going to get it x-rayed on Monday. I lost control of my mind and mouth. "HOW IN THE HELL DOES A 13 YEAR OLD BREAK HER HIP ROLLER SKATING? HOW IN THE HELL?" The tears flowed freely. My husband held me tight. The doctor just looked at me with concern in his sweet eyes and said "we see this a lot, this is how SCFE kids present."

So began our journey with SCFE. A SCFE is when the ball slips off of the femoral neck like the ice cream slipping off of a cone. Doctors don't know why it happens but it occurs in 1 out of every 100,000 kids. When the ball starts to slip, the pain is often felt in the knee and kids begin to limp. Somehow the fall at the skating rink hurried the process and removed the ball entirely. It has been reattached with screws. The bone may heal. Or it may die. All we can do is wait and see. If it dies, Skiffy will get a new hip. She has a 40-60% chance of a slip occurring in the opposite hip within 18 months. The signs of a 'pre-slip' are already present. In one day, in a brief moment, everything changed for Skiffy. She started school a week late and in a wheelchair. No basketball. No gym. No activity for at least a year. She uses a shower chair now and is quite adept at using scooters when we go shopping. She has really cool black fingerless gloves so she can act like Evel Knievel in her wheelchair. We see the ortho every 6 weeks. We are being cautiously optimistic. We stay far away from roller skates.

Saturday, November 6, 2010

To Blog or Not to Blog

I have toyed with the idea of blogging for quite some time now. I've made the decision the way I do most decisions in my life- I toyed with the idea for a long, long time. I thought about the pros and cons, researched the idea a bit, bounced it off of some trusted resources, then plunged in head first.

This blog will be a random collection of seven individual stories- seven individual stories that make up the herd of which I am the keeper. The herd consists of myself, my hopelessly devoted husband and our five very individual children. My role is to keep the herd together and moving in the right direction. Sometimes I run in circles. Sometimes I have to bark. Sometimes I growl. But, my herd keeps moving, generally in the right direction and when I flop down exhausted in the field, I fall into the loving arms of the Great Shepherd who guides me.

What kind of randomness you wonder? Oh, so much to pick from. Where to start?
A journey with Asperger's Syndrome?
Moans and groans and broken bones?
The improbable task of balancing homework and herding?

Since I have plunged into this whole thing head first, I'll just go ahead and answer the most frequently asked question, the one I know is floating in the back of your mind somewhere-

"FIVE! How do you do it?"

Its kind of like that Garth Brooks song Fever...'its really kind of simple, you keep your mind in the middle while your butt spins round and round'.

Yep. Its kinda like that.