"Look At Me"

"Look At Me"
monotype and screenprint

Sunday, June 22, 2014

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.

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.

Wednesday, April 30, 2014

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...

Tuesday, April 8, 2014

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.

Monday, February 24, 2014

Look At Me Two...

People have always asked me how I knew Derek was autistic.  I never really know how to answer. At the time, I didn't really know it was autism, exactly.  I just knew that my son was not developing the way he was "supposed to be" according to the experts.  Looking back now, it's seems so obvious it's almost laughable. (*Key word--almost.) Derek was diagnosed with what is considered "classic" autism.  He's a poster child for it, actually. I've discussed this in other blog posts.  How between 12 months and 18 months my son missed a bunch of milestones and started showing other red flags.  He didn't wave.  He didn't clap. He didn't point.  He had no words at all.  His eye contact became minimal at best.  And he became obsessed with driving his cars back and forth, over and over again. Oh, and the only person who could hold him at all, was me.  He flapped his hands.  He climbed all over me, and the couches, and hid in tight places, seeking pressure.  He also never graduated from eating finger foods like cereal and crackers.  (He still hasn't, really.) I kept trying to get him to eat cut up bananas and spaghetti and lunch meats and he wouldn't go near them with a 10 foot pole.  He wouldn't even open his mouth if I held it to his lips.  He just turned his head and cried...

But I'm not talking about Derek today.  Today I'm sharing another little boy's story.  His story is a little bit different, and not so obvious.

This little boy was a difficult baby.  From day one, things did not come easily for him.  He had trouble figuring out how to latch on to nurse.  It took several days.  And a lot of screaming.  

This little boy didn't sleep well.  He only slept for 30 minutes at a time.  So his mother put him in the stroller and went on long walks, because the movement helped him sleep.  At night, the poor boy, and his mom, cried for hours on end.  She thought it was just colic.  But it wasn't.  Any kind of noise would wake him up--from a door closing to a siren.  She bought a white noise machine for his room. Sometimes, out of desperation, she let him sleep in his vibrating chair.  She slept on the floor next to him.

The boy never learned how to self-soothe, despite his mother's best efforts.  She read every book available, and tried everything everyone recommended.  The little boy cried so hard and got himself so worked up that he would vomit.  It happened so often that the mother invested in a steam cleaner. 

As the boy grew older, things became a little bit easier...and a little bit harder.  He was a very bright little boy, but he demanded a lot of attention.  He slept better, but the child was stubborn and got frustrated easily. Disciplining him was a challenge.  

At 18 months old, the boy knew all of his colors.  He had an incredible vocabulary, and the mother was frequently told, "He speaks like a mini-adult!"  Or, "He's like a little professor!"  He also had an amazing memory and could spout all kinds of facts about dinosaurs--his favorite thing in the world.  

Right before the little boy turned two years old, the mother had another child.  The mother was overwhelmed and sleep-deprived.  The boy was jealous.  Life revolved around eating, sleeping, diaper changes, and well-child check ups.  

The next few years were chaotic.  The youngest child was diagnosed with autism.  Life turned upside-down. Doctor appointments continued.  ABA therapists were in and out of the house daily.  So were speech therapists and occupational therapists.  And the mother was so caught up with trying to help her youngest son, that she didn't realize how much her oldest boy was struggling.  He was a very picky eater--but what kid isn't?  (He wanted food to be luke warm.  He couldn't drink milk straight from the fridge.  His mother had to microwave it for a few seconds.  Otherwise it was too cold.  And he had to let chicken nuggets cool off, or they were too hot.  Mashed potatoes made him gag.)  He also showed signs of aggression and jealousy (she attributed it to the fact that his brother was getting extra attention and took him to see a therapist.)  He continued to speak like an adult--except occasionally he spoke gibberish to others, or in a complete monotone, and his mother had to remind him to either "use his words" or speak "normally."  He also showed signs of anxiety.

The boy was so nervous about starting preschool, that every day for the first two weeks (until he understood the routine), he vomited in the trash can.  The teachers were nice enough that they didn't care.  The mother just brought extra clothes and hoped it would get easier for him.  (It did.) She thought it was because he was a Momma's boy.  (It wasn't.)

As he got older, the boy's fixation on topics continued.  After dinosaurs, he moved on to dragons. Then he switched to Presidents and which presidents were on what coins and dollar bills.  Then, he moved on to Pompeii and Mt. Vesuvius. Then he switched to Minecraft (he LOVED the iPad and wanted to play it all the time.  It was a problem.) Then superheroes.  He became so fixated on a topic, he could talk about it and talk about it until he was blue in the face.  He failed to recognize when others were bored of the subject or had no interest in the subject and was told by others that he was "annoying."

The boy had trouble making friends.  His mom had to remind him to say hi to his friends when they said hi to him.  He also played by himself often--running back and forth, bouncing and crashing off of furniture (proprioceptive dysfunction?) and fighting invisible enemies in his mind.  He even did this at recess--because it was easier than trying to socialize with other kids. If other kids did try to join him, they often got frustrated because the boy made up his own rules to games, and he always won.  If they left to do something else, the boy told his mother his friends were "being rude."  He never saw himself as being part of the problem.

Sometimes, the boy said inappropriate things without realizing it.  For instance, he'd tell his life story to strangers at the grocery store.  He had no stranger danger, and his mother had to remind him constantly that there were certain things he shouldn't share about his life. 

He got bored easily, and didn't know know how to entertain himself.  

Photo by Clay Lomneth
When the boy was in second grade, his teacher mentioned some concerns at parent teacher conferences.  One, that the boy was struggling with writing.  He had trouble with sentence structure, and remembering to capitalize the first word of a sentence and put a period at the end.  Sometimes he had trouble getting his sentences to make sense.  The letters of his words were also spaced too far apart, and he'd go straight into the next word without a space.  So his sentences read like this:  t h e d o g t o o k a w a l k. Two, his handwriting, even when he was really, truly concentrating, was not good.  Three, his drawings were at a kindergarten level.  So he needed help with fine motor skills.  Four, he had trouble paying attention sometimes.  But his math skills were phenomenal. He could add 2 six-digit numbers in his head easily and do multiplication--and the students hadn't even been taught that yet.    

The mother had one thought after conferences:  Uh-oh. 

She thought about her son.  He hummed when he was concentrating.  "Hmmm.  Hmmm.  Hmmm."

He popped his lips.  It became such a habit that he didn't even know he was doing it.  But it drove his parents crazy.  

He flapped his hands when he was excited.  

These were all stims.  

Suddenly, it all made sense.  The mother realized that it was possible BOTH of her kids were on the spectrum.  

She asked the school to go ahead and do the testing.  

Sure enough...  

What do they say?  If you've met one person with autism, you've met one person with autism.  I thought that Derek made me an autism expert.  I was wrong.  Sometimes, autism is easy to spot.  Other times, a diagnosis is questionable.  I thought I was going crazy.  I thought I was being paranoid.  I thought a lot of things...

I have two children.  They are both on the autism spectrum.  That spectrum is so very wide...

My boys are as different as night and day.  One is high-functioning (asperger's).  The other is considered "classic" and might live with me his entire life (I'm not being negative--it's just a possibility I have to face.) One speaks like an adult.  The other is just learning to speak. One is serious and sensitive.  The other is happy and easy-going.  Both stim, but in different ways.  They both have sensory issues.  They both love water slides and french fries.  They are also best friends.  

I don't know what the future holds anymore.  I know there will be challenges up ahead that I cannot even fathom at this moment. Some days I'm terrified.  Other days, I know I'll be able to handle whatever life throws at me. 

I know I'm not knocking balls out of the park, but I like to think I'm at least swinging at the pitches.  This game is far from over.
Brothers.  And friends.