"Look At Me"

"Look At Me"
monotype and screenprint

Monday, February 16, 2015

Orange and Purple: Talking About Autism

I slowly drew a picture of a rainbow, with all of its colors.  Red. Orange. Yellow. Green. Blue. Violet.  I thought to myself, "Just stick to what you know.  Stick to colors.  Colors make sense.  You can use a rainbow to explain things to him." 

Tyler will be 9 years old in two days.  He has blonde hair and blue eyes.  He has a slightly crooked smile.  He is smart and sensitive and sweet.  He loves chicken strips and pizza.  He likes to wrestle. He also spends his spare time learning facts about outer space.  His current fascination is Mars.  He is also autistic.

Tyler was diagnosed with Autism Spectrum Disorder about a year ago.  You can read about it here. This week is the anniversary.  But the date doesn't bother me.  Finding out Tyler was on the spectrum was almost a relief.  All the diagnosis did was give me more information about my son. It told me what I already knew, but gave me an explanation for some of his behavior.  For example, Tyler is super sensitive to smells and sounds. Mashed potatoes make him gag. (Sensory issues.) Too much noise makes him panic. (More sensory issues.) He's so honest he seems rude at times. (He told a man with long hair that he looked like a girl. And he has no stranger danger.  Some social skills are lacking.)  He gets along better with adults than kids his own age.  He has an incredible vocabulary and speaks like a professor.  He's super smart academically, but has trouble making a sandwich. He also has trouble with fine motor skills, so tying his shoes and writing (neatly) with a pencil are difficult for him.  Tyler is considered to be on the "high functioning" end of the spectrum.  (I don't particularly like that term. He would have been diagnosed with Asperger's, if that diagnosis still existed.)

How do you know when it is the right time to talk to your child about a diagnosis?  I can't answer that.  I waited a whole year.  Last year was challenging, for both me and for Tyler.  It never seemed like the right time. But this year, after his IEP, I knew it was time. Tyler has been struggling with a few things, so maybe understanding why will help.  He has trouble with fear and anxiety. And I want to help him figure out ways to cope.  The school and I are both going to work with him.  We are going to try breathing exercises and stretches and tensing/relaxing his muscles, because he doesn't know how to calm himself down.  We're also going to let him take breaks when he gets too overwhelmed and encourage him to speak up for himself. And as he gets older, if he needs it, I will look into the possibility of medication.  Because panic attacks are not fun.  I know from experience.

And yes, I realize that everyone has trouble with anxiety to an extent...but Tyler gets so anxious about things that it interferes with life.  He hates to feel like things are out of his control.  He wants to know what is expected of him. He likes schedules. And he is a rule follower, to the extreme.  When other people break rules or do things that they aren't supposed to, it freaks him out.  He also hates trying new things.  I try every year to get him to try new sports, or Boy Scouts, or even get him to go to VBS during the summer.  It causes panic attacks.  And although he still loves wrestling, he hates going to the meets. He's terrified of competing.

Last week, I went with Tyler on a field trip. He went ice skating for the first time with his class. Instead of being excited, Tyler was scared.  I don't know if he was scared of falling, or of getting hurt, or of being made fun of...but whatever the case, he did not want to go. I stayed by his side until he got the hang of it.  But I can't be there for everything. And life is not always predictable. That's why coping strategies are necessary.  You can't avoid anything and everything that causes anxiety--or you'll miss out on a lot of fun things too.

So, anyway...how did the talk go???

I pointed to the rainbow that I had drawn and asked him, if Derek was a color, what color would he be.


Perfect.  I wrote Derek's name down next to the orange color of the rainbow.  Then I asked him if he and Derek had anything in common.

"We both like Minecraft.  And superheroes. And Star Wars. But Derek likes The Green Lantern a whole lot.  And I'd rather study the stars."

"That's great, Tyler.  And I like how you pointed out some differences too.  Can you name a few more things?  Like...you both like ice cream.  And you both hate going to the dentist and you are both picky eaters."

"Derek is pickier than I am."

"That's true.  But you both hate vegetables.  And you both hate meatloaf."

"We both hate being sick.  And taking medicine.  And going to the doctor."

"Absolutely.  Hey, Buddy...do you remember that book about cats I read to you?  All Cats Have Asperger's Syndrome?"

"The one about Derek?"

"Yeah.  Well, Asperger's is actually on the autism spectrum.  Do you know what a spectrum is?  If sunlight passes through a drop of water, it makes a rainbow and forms all of these colors.  The rainbow is considered a spectrum.  Well, autism is like that, because everyone on the autism spectrum is so very different.  Well, it turns out that you are on the autism spectrum.  Just like Derek.  So, if you think he is orange, I bet you'd be a totally different color.  What color do you want to be?"


"Purple is awesome."

"Mom, are you autistic?"

"No, Buddy.  But I'm bipolar.  That means I have really bad mood swings.  And I have to take medication to prevent me from being too sad or too happy.  See, everyone is different.  We all have our own challenges.  We just have to learn how to live with them."

"Is anyone else at the school autistic?  Besides Derek?"

"I don't know.  If they are, they don't talk about it.  And you don't have to either.  But I don't want you to be ashamed of it either.  Ever."

And our talk continued.  I let him ask a billion questions.  I showed him pictures of prisms and other examples of spectrums.  I told him that Isaac Newton and Albert Einstein were thought to have been on the spectrum.  He liked that.  A lot.  I told him that he could still be whatever he wanted to be--an astronomer, an astronaut, a paleontologist, a doctor, or even a physicist.  He just had to believe in himself and work hard.  He couldn't let autism be an excuse for not doing something.  If it made something hard, he (we) would just have to be creative and figure out an alternate way of getting it done.  And I also reminded him that everyone is different and unique, and that he was still the exact same person he was yesterday.  We loved him, no matter what.  Autism was just a descriptive word.

I thought about our conversation that night when I went to bed.  Should I have said something differently?  Or done something else?  It was not an easy conversation. Forget the birds and the bees. Telling your kid they are on the autism spectrum is much harder.  But I want my kids to be able to talk to me--to be comfortable asking me questions, even the hard ones.  So it had to be done. Tyler doesn't remember a time before autism.  His brother was diagnosed when he was not even 3 years old.  Tyler remembers when Derek didn't utter a word.  He thinks it is "normal" to have therapists in and out of the house all day.  It is all he's ever known.  He doesn't think it is strange that Derek has dry cereal for supper.  It just is.  He loves his brother.  He's proud of him and all that he has accomplished.  But now, to be given the same diagnosis as him?  It has got to be confusing.  Especially since my boys really are so very different.  This spectrum is very, very wide, folks.  Tyler seems to be taking it well.

I keep reminding myself it's just autism, it's not the end of the world.  But, considering Tyler's fascination with comets and asteroids and meteors, a conversation about the end of the world might have been easier.  ;)

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.


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.