"Look At Me"

"Look At Me"
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Tuesday, December 2, 2014

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.  ;)






Tuesday, August 26, 2014

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.



Wednesday, August 13, 2014

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!"



  

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.