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Jan 04
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by Jess

Introduction:  This blog post was written with several purposes in mind.  It was written to remind all parents of children with autism that they aren’t perfect.  You can try every remedy, you can follow all the PECs systems, you can do ABA…but you are just human.  You are going to give into Autism.  I capitalize the word Autism because it is more than just a disorder that robs and steals from our children.  Autism is a big enough elephant in the room that is should be referred to as a pronoun.  Autism runs my life.  I have to admit to you that I let it run the show to a degree, but what gives?  I cater to Autism…I feed Autism…and I accommodate Autism so that we can have some peace in our home.  Autism is an angry animal that when not fed, petted, or given attention to will chew through the strings of your being and destroy you.  So before you post your comments about how I shouldn’t let my son watch too much TV, or you shouldn’t give into your son with snacks…take a step back.  I am not perfect…you are not perfect…and our kids are not perfect…but we can try to perfect this up-side-down life we have been given even if it means we allow things that in “normal” households would not be tolerated.  Normal went out the window a long time ago.  I am just trying to survive, people.

This blog was also written to remind me that I should never ever ever choose a New Year’s Resolution that cannot resolve itself.  The word resolution means “to resolve” or “a solution”.  I have given much thought to my huge announcement on what I was going “to solve” and “resolve” in 2012 and I now believe I am certifiably crazy.  I can resolve the eight extra pounds I put on between Thanksgiving and Christmas, but I can’t resolve my son’s neurological disorder and developmental delays that no one has found a cure for.  Nor can I resolve the fact that it has infiltrated my life like a pandemic that just continues to spread…not resolve.

This blog was also to let some of my readers and Autism Moms members see me the real person.  I try to provide uplift, hope, and inspiration daily on my facebook page, but what you need to know is that I need that uplift, hope, and inspiration desperately myself and I am there beside you guys trying to soak some of that up.  I am cynical, sarcastic, and skeptical most of the time.  I cry, I curse, and I slam things because of autism regularly…but I have enough sense to know that I need to surround myself with positive people and support or I could easily fall prey to the jaws of ASD.  I am real…this is me…I don’t sugarcoat anything about Autism, except the fact that I refuse to let it get the best of me.  But still, even with the best of intentions, I was foolish to think that I could get the upperhand with Autism.  It just isn’t in the cards.  Autism is in control.  So without further ado…

“Autism-1...Mom-0”

After going through the usual suspects of New Years resolutions…working off my muffin-top, getting organized, stop using profanity…I decided to be “lazy” and choose one that I thought might stick.  I pondered for a while and tried to set myself up for success.  I decided to march into 2012 by proclaiming to the entire world that I was going to “Stop letting Autism dictate my life”.

So easy.  I can handle anything…therapies, multiple doctor visits, baseball practices, science fair projects, grocery store trips, Christmas dinner…surely I can start arm-wrestling Autism and coming out on top.   This is going to be a piece of cake.

Day 1:  New Year’s Day

6:30am- Awakened to the sound of toys being thrown against the wall.  The first thing I think of is my new resolution and how well it is going to work out.
“I am not getting up at 6:30, Autism.  So just try to make me.”

I laid there a few more minutes and then I heard toys begin to hit the light fixture in the ceiling…which is glass.

**Legs swing over the side of the bed and I emit a loud sigh.**

7:00am- Logan:  ”Dino Dan”…”Dino Dan”…”Dino Dan”.

Me:  “Logan, let’s watch something else this morning.  How about Max and Ruby?”

Logan throws himself to the floor…flips from front to back a few times looking like a pancake being turned in a pan.

Logan:  “Dino Dan”…”Dino Dan”…”Dino Dan”.

Me (inside my head):  “Autism, move over!”.  Me (out loud):  “Look Logan…Ruby is taking Max to the park”.

Logan:  **loud screaming and shrieking and body contortions**.

Me:  “Alright, alright…here is your damn Dino Dan”.

Logan:  **climbs on the sofa and ignores me until the episode is over and then shouts “Dino Dan” and I quickly press the next episode of Dino Dan on the DVR.

7:45am- Me:  “Logan, do you want a cereal bar or pop-tart for breakfast?”.

No response.

Me:  “Logan, cereal bar or pop tart”.

Again, I am completely tuned out.

8:00am-the second episode of Dino Dan ends and Logan hops off the sofa and walks into the kitchen and begins to whine.

Me:  “Do you want a cereal bar or a pop tart?”

Logan:  “Ausicle”…”Ausicle”…”Ausicle”…”Ausicle”.

Me:  “Logan, we don’t eat popsicles for breakfast.  How about a cereal bar?”

Logan:  “Ausicle!!!!!”  “Ausicle!!!!”  **begins to slam head against the refrigerator and scream**

Me:  “Okay, okay…here is your @$%# popsicle”  At this point, I am thinking that cutting back on my profanity would have probably been the better choice of resolutions, but intent on not being whipped I continued on.  I pulled out a red popsicle and handed it to Logan.  “Breakfast of Champions”, I thought.

Logan:  “Gween!!!!”  “Gween!!!!”  “Gween!!!”.

Me:  “Logan, we don’t have any more green popsicles”.

**He throws himself down to the floor and does what we call “The Banana”.

“The Banana” is when Logan throws himself to the floor, rolls onto his stomach and arches his back backwards and raises his legs and feet back over his buttocks as if his head and feet are going to meet and then rocks back and forth while screaming.

Me:  “Autism, ‘The Banana’ doesn’t scare me.  What else have ya got?”

Logan: **Still screaming and banging**

I managed to find a green Blow Pop and somehow got him to eat the Blow Pop and the cereal bar.  (No nasty, GFCF comments please…been there done that…didn’t work for us.  It is what it is.)

9:00am-Dino Dan again…two more episodes.

10:00am-Me:  “Logan, lets go jump on the trampoline!!!”

Logan:  **Jumps for 38 seconds**

10:15-11:30am-Rotation of Dino Dan, Bubble Guppies, and Fresh Beat Band

12pm Noon- Lunch consisting of chicken nuggets and French fries.  Logan takes a nugget and proceeds to stuff it in his mouth without taking a bite and grabbing a second nugget for the road.  He hauls into the living room with an entire chicken nugget in his mouth and begins to chant in a muffled voice “Dino Dan”.

Me:  (inaudible) “Autism, not so fast.  Watch me control and diffuse this situation”.

Me:  “Logan, no-no!  We don’t eat chicken nuggets in front of the TV.  Come back and sit in your seat and finish your lunch.”

I bring him back to the table and make him attempt to finish his lunch.  He finishes the huge mound of nugget in his mouth and stuffs the other nugget in the place of the one he just devoured.  He grabs another nugget into his tiny fist and he is off again.  I watch as he bolts into the living room and takes his spot in front of the television, all the while munching on his nugget.  I attempt to make him come back to the table when he hits the floor, rolls around, and begins to scream.  He is in full “banana” mode now.

Me:  “You forgot the last nugget”.

12:30pm- Melatonin and a nap

2:30pm-Logan awakens with a meltdown.

Me:  “We are not doing this today” and in my mind I am thinking don’t use the TV as a bargaining tool to discourage a meltdown.

Logan:  **Screams and thrashes**

Me:  “Logan, lets blow some bubbles”.

Logan:  **Screams and thrashes**

Me:  **Running around the room like a banshee blowing bubbles**

Logan:  **Screams get louder**

Me:  **Put the lid back on the bubbles and envisioned myself dumping them on his head**

Logan:  **Still screaming**

Me:  “Do you want to watch Dino Dan?”

Logan:  **Screaming stops, head whips up, and he takes his place in front of the TV**

4pm and several Nick Jr. episodes later- **The Witching Hours (as I like to call them) begin**  This is the time of day that even Dino Dan riding a T-Rex can’t fix.  It is that special time of day that is late evening/early dusk that makes my son come unglued everyday.  I flip on all the lights to help stop the transition from light to dark which I suspect is what is setting him off.  I can’t flip the damn switches fast enough because he is rolling around like the Chief Chiquita.

The meltdowns come and go for the next few hours like waves.  Screaming, throwing himself down, head-banging, crying, crawling, writhing.  I try not to cater, because my New Year’s resolution is to not let Autism dictate my life.  I cautiously try to transition and redirect and pull him away from furniture and blunt objects.

6pm-I need to cook dinner but Logan is still melting full-throttle.  I have some ground beef sitting inside my microwave that has been there for 30 minutes unthawed.  I think about the fact that the bacteria is probably making out on top of it, but I can do nothing but stare at the microwave through the kitchen door.  I look back at Logan and I am torn.  So I choose autism and leave the ground beef to change into something that needs to be put in a Petri dish and placed under a microscope.

6:30pm-My husband comes in and asks “What’s for dinner?”.  I tell him it’s in the microwave.  I am sitting on the couch with Logan watching “Dino Dan”.  He can see from the look on my face I am being facetious.  Smart man looks at me and asks “Take out?”.  All I can muster is a nod in agreement.

7pm-The entire family gathers at the table to eat out wonderful meal from a paper bag and Logan climbs up into his chair and grabs a chicken nugget and stuffs it in his mouth.  He then runs to stand in front of the TV.  I told my oldest son to turn the TV off.

“We eat at the table, Logan”, I say firmly.

My husband snorts and shakes his head, like “Nice try”.

As soon as the TV is turned off Logan goes hysterical.  He is rolling around with an entire chicken nugget in his mouth.  I think about the possibility of this being a choking hazard so I jump up and try to pry it out of his mouth.  He clamps down with the strength of 50 men.  I reach over and turn the TV on.  Things begin to calm.

8pm-Melatonin, Bath, and Bedtime for Logan.  The house is serene and quiet.

9pm-I come to bed and lie quietly beside my husband.

I ponder for a moment and turn to him and said, “You know…it is still New Year’s Day and I still have time to choose a new resolution".

He smiles and doesn’t say anything.

I said, “I think I will just try to lose weight like I resolved to do last year”.

My husband knows when to play it safe.

He said, “That would be good too.  It’s your decision, your resolution, and you have to live with it”.

There…done deal.  It was settled.  And the last thing I thought of in my mind before I drifted off to sleep was a scoreboard that read…”Autism -1...Mom-0”.

Jessica is a stay at home mom of 4 boys, two of which have Autism Spectrum Disorders. She is also busy running the Autism Moms support group on Facebook and writing for the blog Life with Spongeob

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6 Responses to “Autism – 1…..Mom – 0”

  1. Hi Jessica! It certainly sounds like a trying day! As a speech-language therapist, reading your entry is extremely humbling. Thank you for sharing this journey with us! If I could make one suggestion, it would be to make a New Year’s resolution to find someone to come in and do some home programming— not only so that Logan can learn some strategies, but more so that you can catch a break! Suggestion #2….. schedule it during the witching hours ;)

    Your son is very lucky to have you as a mom! Hang in there!!

    Much admiration,
    Shaina Rotstein

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  2. Shaina…thank you for the kind words. My son does have a Community-based Resource Specialist (CBRS provider) or play-therapist that comes to our home once a week and works on transitioning, social skills, and communication issues. I just haven’t figured out how to get her here in the late evening hours: ) I appreciate your feedback and I am not giving up!

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  3. Ah yes, the world is not black and white, is it? Thank God!
    Forget wrestling Autism and give it a hug – who cares about the score?.

    Thank you for reminding me!

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  4. Wow, been there done that. Take a breath, smile, and start another day. Being a mother is hard enough, but it’s even hard when you add in Autism.

    You need more support. Focus on completely reviewing and redoing your support system because what you have in place is not working for you. I totally agree with Shaina – you need in home behavior support. The “once a week” is simply not cutting it and never will.

    I know this sounds like yet another “task” but it will be worth it’s weight in gold, I promise you. I’d be more than happy to help you review what you’ve got in place and improve it ASAP.

    I’m so very honored to have read your posting. It takes great courage and love to put yourself out there like that. Well done! Now, take the next step and accept some extra help to make some of your dreams a reality.

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  5. Great article! I enjoyed reading and hearing all of your thoughts on this subject.

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  6. Exactly! So true!

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