Rattlesnakes, Rainbows, and Other Ramblings

Last weekend we went to the lake for vacation.

Only, as some of you know, autism never really goes on vacation.

So, the trip was fun, and parts of it were relaxing (sort of), but I would never compare it to a vacation to say...the Bahamas (without kids, of course).  Ohh, what I wouldn't do to be able to doze on the beach with a cocktail in hand and not have to worry about the kids drowning or rattlesnakes...

Yes, I said rattlesnakes.

Rattlesnake

We got to Lake McConaughy on Thursday afternoon.  We stay at a house just a short ATV drive away from the beach while we are there.  So we unloaded some supplies and our suitcases and headed straight down to the beach.  Immediately, the people that were camped next to us said they had to show us something.  So we sauntered over.  And sitting directly on top of a grill was a beheaded rattlesnake. My stomach flipped. Evidently it had been hiding underneath some of their supplies and when they went to get something, they heard the tail rattle and barely escaped a bite from a venomous snake. *shudder*

I am not ashamed to admit that I was on the look out for snakes for the rest of the weekend.

Right side of the rainbow.

The next day was not overly eventful.  Except there was a storm or two.  And Derek freaked out and looked everywhere for the "crazy tornado" that did not exist. (He's slightly obsessed with weather at the moment.)  

But we saw a rainbow, so that was cool.  We also saw some toads, butterflies, sea gulls, and dragonflies. 

(Thankfully, we didn't see any more rattlesnakes.)

Left side of the rainbow.  (and Tyler)

Blue dragonfly

Autism came to the lake too. Both boys stimmed. Derek scripted. Tyler obsessively talked about superheroes. Both kids hated having sunscreen put on them. Tyler complained about the flies biting him. Derek ate a minimal amount of food (his usual Goldfish, pretzels, and dry cereal). Both kids slept terribly. Derek had a meltdown one day that resulted in a 3 hour nap (he was that overstimulated).

No big deal, right?

Toads hiding from the sun.

Except the moment we got home, I ended up with the stomach flu.  I was running to the toilet every 10 minutes for close to 24 hours.  So instead of being just tired, I was exhausted.  Actually, that doesn't even begin to describe it.  I had cleaning to do, kids to take care of, and I could barely crawl from the bathroom to my bed.  I let my kids play the iPad and watch tv and eat whatever they wanted ALL DAY LONG and I don't even care.  I was too sick to actually sleep (I doubt Derek would have let me anyhow--and even if he did, I can only imagine the damage he might have caused), and Derek laughed at me when he saw me vomit, but at least the three of us survived (somehow). I honestly think that the hardest part about being a parent is having to be a parent when you are ill.  

I'm better now.  School starts in a week and I'm doing everything in my power to get stuff done before school starts--hair cuts, doctor appointments, etc.  

What I really want to do is take a nap...

Next week, I suppose.  ;)

Tyler getting thrown into the air by his uncle.  Derek watching (and floating).

Derek finally got his campfire on the last day.

Derek sitting by himself on the boat.  Chilling.

My tow-head.

"I make fire!"

  

Days Like This

I try not to think about the "what ifs?" in life.  It seems like a waste of time to me.  You can't change the past, so what's the point?

But once in a while, something happens that stops me in my tracks.

Picture this:

It was a hot, sunny afternoon.  A mother took her child to the park.  They played for a while on the playground and when it was time to go, they walked past a baseball field to get to the car.  There was a game going on and kids were "warming up" near the street. They were throwing balls back and forth, stretching, and getting ready to play.  

The child waved to the ball players as he walked past.  He would have stopped and watched, but his mother was gripping his other hand and pulling him toward the car.  

The mother opened the car door and told her son to climb inside.  Reluctantly, he did.  He still wanted to watch the ball players.  She strapped him into his car seat and gave him a juice box.  

Suddenly, there was a loud *BANG*.  A ball had been hit in their direction and bounced off the roof of the car.  It had skimmed the top of the mother's head.  

Holding her head, she looked around.  Nobody was paying attention.  Nobody was coming after the ball, which was now rolling into the center of the street.  

Shaking a little, the mother checked to make sure her son was okay, and then got into the car and they drove away.  

Yes, this happened.  Derek and I went to the park while Tyler was at wrestling practice this past Monday and a ball hit our car.

I don't care about the car.  And my head is just fine.

It's the "what ifs" that have been plaguing me.

What if the ball had hit me directly, instead of the car?
Would I have been knocked unconscious?  Would anyone have noticed?  Would they have come to my aid? Would Derek have started screaming?  Or would he have gotten out and chased after the ball in the street?

OR (even worse)

What if I hadn't gotten Derek into the car yet?  What if the ball had hit him?

I know I shouldn't think about the "what ifs."  They didn't happen.  Derek and I are just fine. But I try to be prepared for most scenarios.  I have to think about what could happen next. Autism doesn't take a day off now and then. That's why I was gripping Derek's hand. I knew he'd chase a ball into the street if I didn't.  I know my son. I know what he'll attempt to do if I'm not vigilant.

Obviously, it's not possible to be prepared for everything.

But for those of you who wonder why I perpetually seem like I'm on the verge of a panic attack?  It is because of days like this.  Life is exhausting when you have a child that doesn't understand danger.  I have enough trouble dealing with the issues I can (kind of) predict--the darting into streets, the talking to strangers, the meltdowns, the bullying, and even the possibility of him wandering/drowning.  Throw in the added stuff I have no control over?  Like baseballs flying at my head?

Derek and I might have to start wearing football helmets to the park.

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.  

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.

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.

Cyclic Vomiting Syndrome and Autism

It is 3:05 a.m.  Derek makes a coughing noise. I instantly wake up, and check him. He's still asleep. He coughs again. I ask if he's ok. I get no answer. I put my head back down on the pillow and try to sleep. 3:10 a.m. Derek gags. I sit up. I ask Derek if he's going to throw up. Too late. Vomit shoots out of his mouth. I pick him up and run for the bathroom. It's not far. I hold him over the toilet as he retches, uncontrollably. This will continue every 10-15 minutes for the next 4-5 hours. It happens almost every month. This is Cyclic Vomiting Syndrome. This is our life.  

I have read a lot of articles that say there is a gut-brain connection in autism.

Since my son has Cyclic Vomiting Syndrome, I tend to agree.    

1. Cyclic vomiting syndrome (CVS) is a chronic functional condition of unknown etiology characterized by recurring attacks of intense nausea, vomiting and sometimes abdominal pain, headaches or migraines.

I was asked by a CVS group to write about how being on the autism spectrum adds issues or challenges to CVS, so that's what this post is going to be about.

One of the biggest challenges for Derek (and for me) when he gets sick (not just with a CVS episode) is that Derek cannot tell me he is feeling ill.  He can't tell me if he's dizzy or nauseous.  He can't tell me when his head hurts or his stomach hurts or his ear hurts.  I have to watch for signs.  Sometimes he'll pull on his ear or go to bed early or just not eat anything when he is sick.  But, unfortunately, sometimes he does these things when he's perfectly fine too, so I don't really have a good indication that my son is sick unless he has a fever or is vomiting.

When it comes to CVS, most people have some indication that an episode is coming on. Some people see an aura.  Some become more sensitive to lights or noise.  Most have stomach pain or headaches or both.  I don't know if my son experiences any of that.  I am assuming he does, but since he is autistic and has sensory processing disorder, I know that he's sensitive to lights and noise and crowds and tastes and smells all the time anyway.  So is it even more extreme before a CVS episode?  I don't know.  Perhaps.  I wish I could ask him.  No.  Strike that.  I wish he could answer.

I do know that when he is in the middle of an episode, and he gets vomit on himself, he can't stand it.  He freaks out because the vomit is wet and gross.  He doesn't like the way it feels to vomit either.  He cries and asks me for help.  It breaks my heart, because there is nothing I can do.  He also is extra sensitive to the feeling of fabric on his skin and wants it off immediately.  He prefers to be completely naked, and in between rounds of vomiting, he sleeps on the bathroom floor on piles of blankets and towels.

We have been lucky.  Derek hasn't had to be hospitalized yet because of dehydration.  I dread when he is more than you can possibly imagine.  Derek can't stand IV's and will most likely yank it out of his arm.  He also hates wearing hospital bracelets.

On the plus side, medication has helped Derek tremendously.  At one point he was having episodes once a week.  Now he has them maybe once a month; if we are lucky once every two months.  I'm also hoping that as he gets older and more aware of his body, he'll be able to tell me when he's feeling sick, and he'll be able to take the appropriate "abort" medicines to avoid episodes altogether.

I cross my fingers that the episode is over. 7:45 a.m. Derek is asleep on the bathroom floor. His face is white as a sheet. I carry his limp body to the bed and cover him with a blanket. I kiss his clammy forehead. I wish I could sleep too, but I have about 5 loads of laundry to do. Vomit laundry. The bathroom is trashed. I also have to get Tyler to school. My day has just begun...

The Cowboy

We went to a wedding this weekend.  Not just any wedding, but my sister-in-law's.  Some parts of it were good and some parts of it were not so good; after all, I had a 6 year old and an 8 year old with me and sitting through a wedding ceremony was no cup of tea.  Both of them were bored and antsy.

However, I have to tell you about something that happened at the wedding.  Something that I thought was incredible.

There were two horse-drawn carriages to take people from the wedding to the wedding reception.  Derek was fascinated by them.  Every time one of them came around the corner he would gasp and say, "Der dey are!" Then he would run as fast as his little legs would carry him up to the carriage and try to jump in.  I had to be on my toes and grab his arm so he wouldn't get run over.  He was that excited.

The carriages were driven by real, live "Cowboys"-- or at least that is what Derek called them.  And they were nice enough to let Derek have several rides before the wedding even took place.

Halfway through the wedding ceremony, Derek decided he had had enough of the wedding and he wanted to go back to the horses.  He ran over to talk to the Cowboy.  He plopped himself into the seat next to him and started chatting away.  When the Cowboy asked him what his name was, he replied, "Peter Parker."  So I explained his obsession with Spiderman. Then Derek saw a number 4 on the side of the house (it's the Haythorn Ranch logo).  So he started counting things.  He discovered that there were 4 horses total and started flapping his hands.  The Cowboy told Derek about the horses.  He also let Derek pick up the reins and didn't even mind that Derek tried to make the horses go forward.

After a while, the Cowboy turned to me and said, "He doesn't miss a thing, does he?  He's autistic, right?"

Surprised, I said yes.  I mean, I wasn't surprised that he knew there was something different about Derek, that's pretty obvious.  But I usually volunteer the information.  Most people don't have the guts to ask.  It's kind of like asking someone if they are pregnant--what if you are wrong and insult someone by accident?

He then told me about a kid he knew growing up, who was also autistic, and reminded him of Derek.

The Cowboy asked Derek lots of questions and Derek answered the way Derek does--sometimes with a single word, and sometimes with a response that had nothing to do with the question.  (He asked how old Derek was and Derek told him "Spiderman.") Sometimes Derek didn't answer at all.  But the Cowboy didn't care. The Cowboy seemed to know exactly how to talk to Derek and what to say. 

I watched the conversation take place with tears in my eyes.

Too often I run into people that look at my son as if he is a bug that needs to be squashed.  It was wonderful to meet a man that wanted to talk to Derek.

Thank you, Cowboy, for making a little boy's day.  He is still talking about you four days later.