The Struggle IS Real

A lot of people (myself included) joke around these days that "The Struggle is Real."  We post facebook statuses about 1st world problems like running out of ranch dressing and getting carded at the liquor store and stepping in bubble gum. It's a way to poke fun at life and forget about our actual problems.

But for a lot of autism families, the struggle is very real.

I'm just going to be honest here, and tell you what has been going on the past few months.  I've mentioned a few things on fb, but I haven't gone into great detail.

Let's see.  I got a job.  At a bar. I'm a cocktail waitress.  (Yes, I have 3 art degrees and this is what I'm doing.  Sometimes it makes me want to bash my head against a wall.  But the hours are flexible and the money is decent.) It was supposed to be a part-time job.  Like, we're talking Friday and Saturday evenings only.  But I've been picking up shifts right and left.  I don't mind the work.  Compared to some of the stuff I deal with at home? Easy-peasy. I'd rather put up with a cranky old man who gets lippy with me when I ask for an ID than try to hold my 7-year-old autistic child in a dentist chair.  Do I miss making art?  Of course.  But it will have to wait.  (For now.)

I've also been in the process of applying for disability for Derek.  This has involved mounds of paperwork, hours on the phone, an interview with a case worker, and an observation of Derek at the school.  He has been determined eligible for developmental disabilities, but now we have MORE paperwork to fill out in order to get SSI, Medicaid, and DD Community-Based Services (like respite). It's complicated, confusing, and frustrating.  Or maybe my comprehension of the English language is just limited...

Then there is Derek.  He has been having trouble with CVS again.  CVS, for those of you who are new here, is Cyclical Vomiting Syndrome.  He was diagnosed with it back in December of 2012. Basically, my son suffers from abdominal migraines.  He wakes up in the middle of the night and vomits uncontrollably for hours on end.  Since Derek started taking amitriptyline, he's gotten a lot better.  He still has occasional episodes, but nothing like before diagnosis.  Except all of a sudden, out of the blue, Derek had 3 episodes in one week, right before Thanksgiving.  (And no, Thanksgiving did not trigger the episodes.  We didn't go anywhere or do anything.)  One of the episodes was the worst he has ever had.  He vomited 12 separate times in 3 hours.  I was terrified.  The kid couldn't even hold himself over the toilet anymore by the end of the episode.  I had to hold his limp body over the trash can.  And when he was done?  He looked at me and said weakly, "I alive."  I wanted to cry. So...guess who had to call the doctor in Omaha that morning? (me.) Guess who has a new prescription? (Derek.)  And guess who will be making a trip to see the doctor in Omaha this month? (Both of us.)

These things aren't a huge deal.  Really, they aren't.  But when you consider the fact that I work at a bar (bars close at 1, my friends...I don't get home until 2 a.m. most nights) and Derek's vomiting episodes usually begin between 3 and 5 a.m. and last for at least 3-4 hours...I'm just a wee bit sleep deprived.  Add to that some financial strain (why do you think I got a job)?  Derek's surgery last May hurt our bank account pretty badly. We are still paying off the surgery and will be for at least another year.  I'm not really sure how we are going to pull off Christmas.  I'm trying not to think about it. (Stress is fun!)  Sure would be nice if insurance covered more of this stuff.  (Oh, how I'm hoping and praying that we get medicaid for this child...)

Anyway, here are a few GOOD things about the struggle.  :)

1.  It makes you appreciate things like HEALTH.  On the days when Derek doesn't have a vomiting episode?  I literally do a Happy Dance.  I had forgotten how horrible CVS really is.  If I could throat punch it into yesterday?  I would.  For real.

2.  A friend can make a bad day into a good one pretty easily.  A phone call, text, message, or kind word from a friend is all it takes.  I've had days where all I want to do is sit in a corner and cry into a cup of coffee, and then I'll receive a text from a friend that says, "Hey, just wanted to say hi and that I'm thinking about you!"  Suddenly, the day isn't so bad.  :)

3.  Know that everybody is struggling, to an extent.  Working at a bar is...interesting.  People talk when they are intoxicated.  And nobody has a "perfect" life.  A lot of people have a lot of problems.  Men and women are getting divorced.  Kids are having trouble in school.  Lots of people have financial issues and health problems and family problems and employment problems.  It's comforting to know I'm not alone in the struggle, but it's depressing too. All I can do is smile and nod and listen.

4.  When things are hard, you appreciate the simple things in life a whole lot more.  I'm talking things like a hot shower, a clean bed, and a full belly.  Not everyone has these things.

5.  Autism doesn't faze me as much.  For some reason, when I'm exhausted and stressed and super busy, the fact that Derek wants to bring the exact same Star Wars figures to Show and Tell every Thursday doesn't bother me.  Nor does the fact that he eats only cereal and pretzels.  So what if the only movie he wants to watch right now is The Polar Express?  But then again, I also feel like I've climbed Mt. Everest when I get a load of laundry done these days...

The Struggle is Real, folks.  ;)

Autism, Hypotonia, and Sports

My oldest son (Tyler) wrestles. He is one of those rare kids that likes to go to practices, but does not like to compete. I'll explain why in a minute.

I have been struggling with whether or not to write this post for a while now. It's been swirling around in my brain, trying to find its way out.

As most of you know, Tyler was diagnosed with high-functioning autism (Asperger's) back in February. I don't talk about him very much, because he's a self-conscious kid. He's sensitive and serious and doesn't like his picture taken as much. I try to respect that.

Well, as I mentioned above, Tyler wrestles. He started in kindergarten and has wrestled in the local school program the last 3 years. This past year (I think it was in March?) there was an invitational meet against some local teams.  Before the meet even began, Tyler was extremely nervous. I'm not sure where his anxiety comes from. Is it a fear of failure? Or is it more than that? Is it the crowds? The noise? The lights? Being the center of attention? His self-esteem has never been the greatest either--even though I try as hard as I can to build him up.

I told Tyler before the meet began that I didn't care if he won or lost his matches--that I was just proud of him for going out there. I told him to try his hardest and he'd do fine. He was still overwhelmed with anxiety. I could tell he did not want to be there.

Well, Tyler got beat. Actually, he got slaughtered. (Just telling it like it is.) The kids he competed against were fast. They were strong. And they were intimidating. I couldn't help but think, "Shouldn't Tyler be doing better than this by now? He's been wrestling for 3 years."

Tyler knew most of the moves, but he thought too much. Rather than attacking, he hesitated. He'd wait a couple of seconds and let his opponent strike first. And then he was on the floor. Once he was on his back, Tyler didn't even struggle. He just gave up. He didn't know how to fight back. Or maybe he didn't have the strength? I didn't know. It was almost painful to watch. Luckily, he got a medal anyway for participating. That helped.

I've been doing a lot of research on autism and hypotonia, or low muscle tone (sometimes referred to as "floppiness". It is one of 7 characteristic traits of autism. (The other 6 being echolalia, hypersensitivity, self-stimulatory behavior, Pica, hyperlexia, and narrow interests.)

Both of my kids have hypotonia. It's not uncommon. 30% of people with autism have low muscle tone. (That's why they usually go to OT or PT or both.) They usually have weak core muscles, poor posture, and may appear clumsy.

Hypotonia usually goes hand-in-hand with hypermobile joints--loose or lax joints.  When someone has hypermobile joints, they have joints in which the connective tissue structures that hold the body together have more give (are more easily stretched) than usual. (Does that make sense? I'll put it in more simple terms. My kids have the ability to move their limbs into awkward positions. For example, Derek sits on the ground with his legs in a W-shape. He does this with ease, without thinking about it. We had to teach him how to sit cross-legged.) Their muscles have to work harder than usual to do things such as keep a good posture and/or move.

People with hypermobile joints can:

* Bend their fingers back to 90 degrees

I had trouble getting a picture of it.  His fingers actually bend more than this.  But you get the drift. Creepy.

* Bend their wrist so that the thumb touches the forearm

* When standing straight, knees and elbows appear to bend backwards

Ignore my messy house.

Hypotonia and hypermobile joints can make children seem uncoordinated and clumsy. They may have an "unusual gait." It may affect their speech, pencil grip, and hand writing (the handwriting thing is actually what clued me in that something was "wrong" with Tyler--his handwriting is atrocious! And even with OT and practice, it remains terrible.) They may have trouble sitting upright and working at a table--they may tend to sit with their back rounded, they may put an elbow on the table and rest their head on their hand, and they may tend to fidget in their seats. They may also tire very quickly (Tyler gets tired walking around Walmart with me. He complains that his legs hurt. I remember specifically about it a few years ago.) They may be good at things that involve short bursts of energy, but have difficulty with things that require endurance. They cannot hang on monkey bars and do not like climbing on jungle gyms because their arm strength is poor. They often sit in a W-position rather than a cross-legged position.

Back to Tyler.

This summer, I put him in a pretty intense wrestling program in a town 30 minutes away. He was mad as a hornet the first week. He didn't want to do it at all. It was 3 days a week, and averaged an hour and a half each practice. (FYI, I told him he had to go the first week, just to try it, and if he didn't like it, we'd talk. I wanted him to at least give it a shot. This kid hates change with a fire of a thousand suns. He ended up liking it. Hah!) They did more than just wrestle, though. The kids jumped rope, ran through tires, pushed heavy tires through sand, ran sprints, stretched, and did push-ups and such. They also learned wrestling moves and practiced with their teammates. He made a few friends. He learned a lot about teamwork. His coach was amazing and helped him build some self-confidence. I figured it was like OT--only more fun.

Wrestling didn't "cure" Tyler's hypotonia. It never goes away. But the weak muscles can be strengthened through training. And that's just what this summer was all about. Tyler still has trouble with certain things. I noticed that when it came to jumping rope, he never quite got the hang of jumping with both feet at the same time, even though we practiced at home. Push-ups were extremely difficult for him. Climbing the rope? Hahahaha. I don't know if that will ever happen. But he definitely got stronger. And stretches? Those seemed pretty easy. He could do the bridge easily and he never seemed to have that much trouble when he was put into strange positions while wrestling. (That has to do with the joint hypermobility more than training, but still...there's a silver lining to most things, right?)

Tyler in a VERY strange position while wrestling.  He wasn't fazed at all.

He was still a little slower to respond to commands than the other kids. And he had a tendency to want to give up when another kid was winning, but with a really, really good coach encouraging him and telling him exactly what he needed to do all summer long, Tyler improved tremendously. I was actually shocked by how much better he got.

And then I was crushed. There was a meet last Saturday. And Tyler refused to go. I brought it up several times. Each time resulted in tears.  And he threatened to quit wrestling altogether if I made him go.

I could have forced him.

I really wanted to see how much better he'd gotten. More than that, I wanted him to see it too.

But there is a fine line between pushing your kid so hard that they end up hating something, and just letting them doing something because they love it.

I didn't want to be one of those parents.

I don't know exactly where that line is, but I didn't want to cross it. Tyler is 8. He has (hopefully) a number of years left to wrestle. I was scared that if I pushed him to compete in this one meet, he'd want to quit wrestling forever, and wrestling is so good for him, physically, mentally, and emotionally, that I can't allow one meet to ruin that. I have to remember that he's a kid--a kid with a lot of issues that I never had to deal with.

And amazingly, this kid of mine is keeping up with typical kids. He may not ever win state, but he's right there with the other kids. He's putting in the time and the work and earning the respect of his teammates. He's sweating and hurting and bleeding, just like the rest of them. Considering most kids like him refuse to participate in activities they think will be too difficult? He's doing great just by wrestling at all. I'm pretty damn proud. Meets? They'll come in time. I know it. I believe in him.

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.

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.

A Glimpse

"From the outside looking in you can never understand it.

From the inside looking out you can never explain it." --Unknown

I am a stay-at-home-mom who does art on the side. My life, for the most part, revolves around my children. From the moment I wake up in the morning until I close my eyes at night, I am thinking of them. Yes, I think of other things too...but they come first.

Whether I want to or not, I think about autism. It is always there--every minute of every day. It's part of Derek's neurology. It's who he is. And I love who he is. But, let's face it--it's not something that affects our lives once a month, like a menstrual period. Autism impacts everything. If I want to go to the store or on a trip or even out to dinner, I have to think about how it is going to effect Derek and if he can handle it or not. In a lot of cases, the answer is no. For instance, I've been wanting to visit my grandmother in Rhode Island for a while now. She's never met Derek. But could he handle a plane ride? Or a 7 day car trip? I'd like to be optimistic and say yes. But, realistically--the trip would probably be a nightmare for him. 

I'm going to be completely honest with you here. When Derek was first diagnosed, I did a ton of research online. A TON. I read every article I could get my hands on. I read about possible causes. I read about possible cures and treatments. I read about vaccines and chelation and DAN doctors and mercury poisoning and Jenny McCarthy and GFCF diets. I was kind of obsessed. I tried a lot of things. I wanted to do everything I could for my child. The only thing that has really helped him is time, patience, love, therapy, and my attitude change--that he is amazing the way he is and doesn't need to be cured. Now, my goal is NOT to make him pass as "typical", but to help him navigate this world the best he can.

With a child like Derek, it's hard not to be obsessed with autism. Especially when there are daily news reports of autistic kids being bullied and abused, escaping from schools, and drowning. It's a reality most parents don't give much thought. I have nightmares about it.

I'll give you a glimpse at what life is like with a developmentally delayed, autistic child. (Please, don't think I'm complaining here. I'm not. But, I'm also not going to sugarcoat it. I don't do "fakebook." This is my daily life.) This very morning, I woke Derek up. I helped him go to the bathroom. He's 6-years-old. He still wears a diaper at night. (Yes, a diaper--not a pull-up. Pull-ups don't fit him well and they tend to leak. I like sleeping. I'm not about to deal with wet sheets in the middle of the night). He went #2, so I helped him wipe. He needs help with that still, too.  

*Oh, and by the way, Derek sleeps in my bed. I've mentioned before that he has Cyclic Vomiting Syndrome, right? About once a month, he wakes up in the middle of the night vomiting uncontrollably. He continues vomiting every 10 minutes or so for 3-5 hours. He sleeps in my bed because A) I'm terrified he'll asphyxiate on his own vomit and B) so that I can help him get to the toilet and minimize the mess. When he vomits, he's seriously like the kid on the Exorcist movie. Somehow, he sprays everything. It's scary as Hell.

Derek during one of his CVS episodes.  

Back to today...I helped Derek change his clothes. He is not capable of dressing himself entirely (yet). He needs help with buttons and zippers and getting his feet in the right holes of his pants--especially if he is tired, which he was this morning. I also helped him get his socks and shoes on.

The entire time I was helping him, Derek was scripting a scene from Despicable Me--I'm pretty sure it was the scene where Gru steals the moon, because he was talking about the shrink ray. Just FYI.

Then came breakfast. Oh, breakfast. Food is a challenge. Derek hates to eat. He has Sensory Processing Disorder (most people with autism have SPD) and can only handle certain textures of foods. He likes dry, crunchy foods and that is about it. It doesn't leave us very many options. Today, I got him to eat a handful of pretzels for breakfast. That was it. Some days, he eats a cookie or a granola bar. I consider it a success if I get him to eat anything at all.

Then I helped him get his coat on and I drove both of my kids to school.

Today was one of the rough days. Derek didn't want to go to school. He couldn't tell me why. (Communication is still sketchy. He's talking more and more, but answering questions is hard.) I had to carry him into the building. He fought tears the entire time. But, at least he wasn't sobbing. Some days, he is.

Most kids go into the auditorium until class starts. (I drop Tyler off there.) Derek can't handle the noise and the crowd, so I take him directly to his classroom. I leave him with his aide, and say a little prayer that he has a good day.

I have a few hours to nap, do housework, work on art, and do errands before the kids come home. I feel like a chicken running around with my head cut off. Some days the kids have dentist or doctors appointments. Lately, one or both kids have had to stay home sick. Since Derek has Cyclic Vomiting Syndrome, he is home sick a LOT. I've cleaned up more vomit in my lifetime than I ever thought possible.

After school, Derek has ABA (Applied Behavior Analysis) therapy. It's every single week day. His therapists help him with the things he is struggling with in school, like writing the ABC's and counting past 10. They also help him with life skills, like eating with silverware, brushing his hair, etc.

This is when I cook supper and help Tyler with his homework.

I'll spare you the details of our supper, bath, and bed time routine. I'll just say that Derek needs help with all of it, and if I get him to eat anything other than dry cereal it is a bloody miracle.

I fall into bed every night exhausted. I run through my day in my head.

I wonder if I'm doing everything I can--for both of my kids. 

I feel like I should be doing more.

I could always do more.

There's a food therapy program at Munroe Meyer.

I could try to get Project Lifesaver available in our county. (Project Lifesaver provides tracking devices for people with autism and Alzheimer's, in case they get lost.)

What about sports? Gymnastics might be good. Or swim lessons at the Y?

Maybe I am obsessed.  

The only way for me NOT to be obsessed is if I walked out on my children and my life.

Obviously that's not going to happen.

Maybe, in some cases, a little obsession is a good thing.

Stealing From an Artist

A drawing of my son...

"Every portrait that is painted with feeling is a portrait of the artist, not of the sitter."  --Oscar Wilde

I "officially" started this art project in April of 2011.  When I started, I had only two pieces completed.  Both of them were about my own son.  One of them was completed just a few short months after Derek was diagnosed.  It was my way of coping with everything I was feeling.  I didn't know any other autistic children. When I started meeting other families, I literally had to beg them to join the project and let me do portraits of their kids.  The first kid I met was a boy named Aiden.  I thought he was adorable from the start.  He was only a couple of months younger than Derek. They had similar traits (they both liked to spin the wheels of cars), yet they were sooooo different---and it fascinated me. Luckily, his family lives only 30 minutes away, so I see Aiden and his family often.  I've become good friends with his mom and I love seeing the progress he's made.

Derek, me and Aiden at the pool.  

The kids in this project are not just "artwork" to me.  And I've never considered the portraits a "job."  These kids are real, live people.  I have met many of them in person.  Some of the kids have been referred to me by friends and relatives.  Some I have met through other blogs.  But most of them, especially the ones who joined the project in the very beginning, I consider extended family.  You have to understand, I have been talking to the parents and following these kids for almost 3 years now.  I don't stop talking to their families once the portraits are done.  We stay in touch.  I have celebrated first words and potty-training victories right along with the families.  I have watched the kids graduate from preschool.  I have cried with the parents during medical procedures and dental appointments and IEP meetings.  I've cried even more when I found out a sibling protected their brother or sister from a bully or a friend held a hand on a field trip.  The way I see it--we are all in this together.  And if you can't laugh and cry and celebrate together, than this journey is going to be awfully long.

As most of you know, all I have ever wanted to do with this project is show the world how I see autism:  as something beautiful.  Yes, it is difficult and there are days when I want to throw in the towel.  If I wanted to show the world the ugly side of autism I could make prints about meltdowns and head-banging and the like.  But, I am not ashamed of my son and never will be.  Yes, autism can be hard.  But it is also incredible.  My son makes me laugh every single day. He is amazing.  So are all of the kids in this project.  They deserve to be portrayed as such.

This project has grown to almost 50 kids.  FIFTY.  That's way bigger than I originally intended. (I'm thinking about making 50 the cut-off mark.  50 is a nice, even number, right?  I'll have my work cut out for me for at least another 2 years or so.)

Ok, so why am I telling you all of this?

Because unless I am horribly mistaken, someone tried to pretend that my artwork was hers.  We are talking plagiarism, folks.  I'm saying that I think someone used my blog and my facebook page and my gmail account to say that my artwork was hers for a college class.  I don't really know how this could have happened, but people get away with all kinds of crazy stuff online these days.

I'll tell you what I know.

I received a bunch of very strange emails to my autism art project gmail account in the past few months, addressed to another person.  (I didn't open them originally, because I thought they were spam.)

All of the emails came from the same university.  One came from the school's alumni foundation.  One came from a specific teacher and had an attached document with an actual grade for an independent studies class that the woman (I?) had taken.  She got a B in the class (what's up with that???)  I even had a blank email from the woman herself, and I'm guessing she sent it to my gmail to either a) confirm that it was her account or b) see if I even checked that email account anymore.

Oh, and according to that document, it wasn't just a Bachelor's Degree that the girl was getting her degree in. It was a Master's of Arts Degree, which means she had to have some talent to get as far as she did.

I have emailed the college four separate times in the past few months to find out what is being done in regards to the possibility that the woman plagiarized me.  I received only one email back, saying the following: 

This is to confirm that I received your email on Tuesday and I have forwarded it to The Senior Tutor for further investigation.  I can assure you that we are taking this matter very seriously.  I will contact you with the outcome of the investigation as soon as possible.

This was on November 28, 2013.  An investigation shouldn't take two months.  I don't know what else I can do.  (Probably nothing.) Obviously, the school doesn't think it's as big of a deal as I do.

These kids matter to me.  They are my life.  Autism is my life.  I've been eating, sleeping, breathing it for over 4 years now.  It's all I think about most days.  So, someone tried to pretend my artwork was hers.  Big deal, right?  People keep telling me it's a compliment.  No. Just, no.  Maybe it seems that way to some.  But I keep thinking about the kids.  I don't know if this other woman has an autistic child or not.  Or if she's even been affected by autism at all.  I don't know her.

But I find it highly insulting to think that someone who might know nothing about autism at all could pretend to do a project like this.

When someone steals artwork, it is not like stealing a television or a car.  This type of robbery makes you feel very vulnerable and exposed, because they are not just simply stealing paint that has dried on a canvas. They are stealing your expression and your view of the world.  I communicate my thoughts and feelings through my art.  A tiny piece of myself goes into every portrait.  These kids fill me with hope and inspiration, because most of them have overcome more in just a few short years than I ever will.  My hope is that people who know nothing about autism will see my pieces in a gallery and it will open their eyes just a tiny bit.

Plagiarism is real.  It is alive and well.  And when it happens to you, it hurts.