"Look At Me"

"Look At Me"
monotype and screenprint

Friday, May 23, 2014

The Fear

I spent a lot of time this week going through old photos.  My father's 70th birthday is this weekend and part of his present includes pictures of his grandkids.  (I can't go into more details than that--I don't want to give away the surprise if he reads this.)

One of the main things I've heard, since the day Derek was diagnosed, is that he doesn't "look" autistic.  I have no idea what that really means.  It's a ridiculous statement.  I guess I agree--I don't think Derek "looks" anything but beautiful.  I don't think Tyler does either. But, you know what I did notice when I looked through the photographs?  It had something to do with me.  Derek was always either in my arms, holding my hand, or I had an arm around him.  Yes, that's right.  The ever-present over-protective mother's arm was always in the picture. Not so much when we were in the house (safe), but if we were outside, or in any type of public place, or if there was a group picture--Derek was with me.

Derek, to this day, has no real concept of danger.  He still dashes into the street without looking for cars.  He wanders without fear of getting lost.  He jumps into the deep end of the pool and doesn't worry about drowning (he can't swim).  He has things he doesn't like, mostly related to SPD (dentists, doctors, haircuts, and the like), but I would say he's really not afraid of anything.

I, on the other hand, am terrified most of the time when it comes to my son.  I worry about him wandering.  I worry about him getting hit by a car.  I worry about him drowning.  Or getting kidnapped.  Or getting taken advantage of.  Or getting bullied. Or getting abused. I worry about what happens to him when he's at school, because he can't tell me what happens.  Just this week, one of my friends opened the door around lunch time and found her son, who had walked home from school in the middle of the day.  Not that big of a deal, right?  Wrong.  He was an 8 year old autistic boy, who had walked out of his school, unnoticed, and miraculously made it home.  He had been bused to school his entire life. His parents didn't even know he knew the way home.  The school had no idea he was even gone.  You can read about it here. Autistic Boy Wanders. It's unbelievable and unacceptable. We hear about autistic kids that wander all the time.  Many of them end up dead. The fact that my friend's son is alive?  Nothing short of a miracle.  I shudder to think of all the things that could have happened to him on that 15 minute walk home.  We always think, "Oh, it won't happen to me."  But, I know this family. I have met them in person.  I ate dinner at Chik Fil A with them and my kids played with this boy. It can happen to any of us.

My son is an escape artist.  I'm sure a lot of autistic kids are.  It doesn't seem to matter how many eyes we have in the backs of our heads or how many bolts are on the doors. I'm tired of reading about kids escaping and/or dying.

Project Lifesaver isn't available where I live.  (Citizens enrolled in Project Lifesaver wear a tracking device. If a client goes missing, they can be located within minutes.  It is ideal for individuals with Alzheimer's, autism, and Down Syndrome.)

Maybe it should be.  Something should be.

Until then, I guess my arm will remain in pictures.  

Saturday, May 10, 2014

I Never Expected... (An Attempt at Humor)

As Mother's Day approaches, I think a lot about being a mom and how much my life has changed in the past 8+ years.  As an Autism Mom especially, life is different than I expected it to be.  So I compiled a list of things I never imagined I'd need to know and/or do.  (By the way, this is my attempt at humor.  I am not, by nature, funny.  My sense of humor is more of a sense of sarcasm...)

Here we go.  These are in no particular order:
1.  I never imagined I'd actually reach to catch vomit in my hands so that it wouldn't land on the carpet.

2.  I never thought I'd need to know what IEPs are and what ABA and OT and ST and IFSP and ASD and SPD and GFCF and EI and MDT and PDD-NOS and and...oh, you know what I mean.

3.  I never expected to be able to sing the theme songs to Elmo's World and Thomas the Train and Chuggington and various Disney movies in my sleep.

4.  I never thought I'd let my kid eat cookies for breakfast.  And actually be okay with it.

5.  I never imagined my kids would make me watch Star Wars and super hero movies (think Spider-Man, Hulk, Thor, The Avengers) with them.  (Not my thing at ALL.  But I love my kids, so...)

6.  I never thought trips would be so much work.  A week long trip to the lake requires weeks of preparation.  And packing.  Oh, the packing...

7.  I never thought I'd be able to diaper a child in the back-seat of a mini-van.  And not get poop on the seat. And actually be proud of that fact.

8.  I never expected to be a Multi-Tasking Queen.  There have been days when I've been on the phone with a doctor, I've had dishes in the dishwasher, I've had clothes in both the washer and the dryer, I've had a meal in the oven, I've been feeding one child and I've been helping my other child with a puzzle.  And I've been doing ALL OF THIS AT THE SAME TIME.

9.  I never dreamed I'd have to help my child overcome his fear of haircuts.  His first haircut was an absolute fiasco.  I've endured years of yelling, screaming, crying, gagging, and thrashing, and finally, after 6 years, my son can now handle scissors and having water sprayed on his head.  (We haven't conquered the buzzers yet. It's a work in progress.)

10.  I never imagined I'd pick my child's nose for them. (Seriously.  I have.  It was driving him crazy, and he hadn't figured out how to blow his nose yet.)

11.  I never thought it would be possible to survive on so little sleep.  Or love caffeine so much.

12.  And last, but certainly not least, I never thought I'd be able to communicate without words.

Monday, May 5, 2014

That's Just What We Do

I came to the conclusion today that trying to balance my schedule and stay sane is not possible.

There are several solutions to fixing my schedule, but none of them are feasible.

1.  I could add more hours to the day.
2.  I could clone myself.
3.  I could give up sleeping altogether.  

Spring and Summer are crazy busy.  I look at the calendar and struggle to stave off panic attacks.  There is just too much going on.  I'm overwhelmed.  There are weddings. (Hotels to book. Babysitters to find.) There are vacations. (Bags to pack.)  Derek has another dental surgery. Both boys have doctor's appointments. I could go on and on.  It is not physically possible to be in two places at once, so I have a lot of tough decisions to make.  I have very few "extra" things on my schedule, so there's really nothing I can cut. (I learned to say "no" a long time ago.  And I don't volunteer to do things.  Ever.)   

Here is my current dilemma.  Right now Derek has ABA therapy at our house every day after school from 4-6. At least until school gets out. But Tyler's summer wrestling program started today and will be M, W, and TH from 5-6 in a town 30 min away.  How in the world am I going to manage that???  I want Tyler to be able to go to the wrestling program, because Derek has had therapy since he was 2 years old (Tyler was 3) and I feel like Tyler has gotten the shaft.  He never got to do after school activities like Boy Scouts or gymnastics or baseball because I was always stuck at home with Derek doing therapy. Wrestling and swim lessons have been the only things I've managed to pull off.  So do I try to find someone who can give Tyler a ride? Or hire a babysitter to stay with Derek for an hour or so until I get back from wrestling? 

I have too many situations like this. It makes my head hurt.

This weekend my neighbor is having a graduation party and there is also an art show I want to attend in Omaha (it would be good for my career.  It's all about who you know). Obviously, I can't do both, but it would be ridiculous for me to drive 6 hours round-trip for one night. 

Then we come down to the smaller decisions.  The seemingly insignificant things that paralyze me.  Do I work on art or exercise?  Do I clean the house or make dinner?  Do I shop for groceries or go to the dentist?  Do I schedule one of the millions of doctor's appointments the kids are overdue for or try to get the bills paid?  

Frankly, it's exhausting.  I'd rather take a nap.  But who has time for that?  And when I do try to lay down for a few minutes, my mind is so filled with thoughts of what I should be doing I can't sleep anyway.  

Instead, I'll put my mad mommy managing skills to work and try to figure out how to "do it all".
Or, at least...as much as possible.
Because that's just what parents do.