"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.  ;)


  1. Hi. Saw your blog from a link on autism daddy. I have never spoke. With anyone w a child w autism AND cyclical vomiting before so I thought I would say hello. And yes it sucks. I too am working almost full time to pay the bills and it is a vicious stress nightmare. My daughter went through a period of cyclical vomiting when she was 7-8. It tapered off and then stopped. No idea why, we did not start meds but we did take her off risperdal which seemed to help but who knows. She too gets gray and limp and it is horrifying. She every once in a blue moon will have a suspicious "episode" where she seems to be in horrible tummy pain (she is non verbal) and then it will abruptly stop. It is v weird. But, crossing fingers, no vomiting for the past almost 3 years. Anyway just wanted to say, I hear you, I get it completely, it is hard! Thank you for an inspiring, real post.

    1. <3 I'm in a CVS support group online and know about 4 families now who have kids with both autism and CVS. It is very hard. I hope your daughter continues to do well.

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