Tuesday, December 16, 2014

A Travel Journal- The Saga of Autism, Obsession and Sleep Deprivation- A Mom's Recounting

It’s quiet now…save for the clock ticking and the house settling.

It’s quiet and safe.  It’s quiet and I’m typing ….because I feel I should document it for those who cannot know and for those who cannot bring themselves to share.  I should type.  I should try to tell you.  I will try but no promises.  I know I cannot do it justice.  I’m still reeling though I look calm and seem collected.  I feel paralyzed.  I don’t know what to do with the quiet.  It’s like shell shock I would imagine.  It’s quiet and safe now…but in a few hours, reality begins again.
First to establish intent…I am not complaining.  At least I am not setting out to complain.  I want to give you a peek because you cannot begin to know if I don’t try.  As it stands, you won’t really believe my recounting.  I will be too honest.  Whether you believe me is your own right.

I love my children.  I love Isaac. I am strong.  That is what we need to start out with.

Isaac was very excited to go to Oconee for Thanksgiving.  He’s always excited for the next event on his calendar.  His cognition is so greatly affected by his autism but he understands the calendar.  He knew that we were leaving Tuesday night.

Packing for any trip is hard for six people particularly when four are children and especially so when three aren’t capable of packing anything for themselves.  Our lives are so hectic that we had not done much packing before Tuesday afternoon.  We worked hard and were on the road by about eight.  It was dark and raining and traffic was heavy with lots of other travelers on the road.  We drove through accidents and hurried drivers but we arrived and were welcomed by the familiar winding roads and the homey cabin.

Routine helped that first night.  We unpacked, made beds and settled in.  Isaac didn’t sleep.  He sat up and talked.  He leaned over our bed and bellowed “Tomorrow.  Tomorrow is.  Tomorrow is Wednesday.  It’s time to wake up.  First day soon.  First day.  Trouble on Planet Wait Your Turn.  Tomorrow.  Tomorrow.”

“Isaac, its night time.  It’s dark.  Its time for sleeping.  Lay down.  Go to sleep.”

“Tomorrow.  Tomorrow."

“Go to sleep”

“Calm down.  You need to calm down.”  For the record, we were calm.  We were too tired to have the energy to raise our voices.  Still he heard the frustration when we muttered again and again.  “Its time for sleeping.”

Isaac was escalating, and was “Upset” “Very Upset” that we had not found the energy to rise.  “Get up.” He demanded.  “No” we responded.

Then he started hitting and pinching and scratching.  He would make us respond.
“No thank you Isaac.  I do not like your pinching.  Time for sleeping.  Go to bed.”

Isaac began to yell.  His yell is disturbing.  It’s like that of a tantruming toddler but morphed to fit into his almost sixteen year old pre man body.  It’s loud and disturbing.  “Isaac, all done fit.  Lay down.  Go to sleep”

“No. “  Then he directed himself, “Calm down.  You need to calm down.”
“Yes.” We agreed.  “Calm down.”

“Time out” he challenged himself.

I wish he’d act on his own declaration, I thought.  He doesn’t.  He just jumps and hits and pinches and screams and yells “Time out.  Calm down.”

“What do you want?” we almost begged.  Silence except for his glare.

“Need to calm down.  Want need to calm down.”

“OK.  Calm down.  Time for sleeping.  Go to bed”

He and we weren’t convincing enough.  He kept yelling and tantruming.

We tried everything we knew:
“Isaac, go to the bathroom.”
“Isaac, get some water.”
“Isaac, look at your calendar.”
“Isaac, please please please please go to sleep.”

Finally, I caved in.  It was three or four…I don’t know.  I couldn’t quite read the clock.  “Isaac, do you want to work?”

“Yeah, work.”

“Fine.” I responded.  I tried to get Sam to stay in bed.  “I can’t sleep now if I wanted to,” he replied.  I sighed.  I understood.

The three of us went into the front room of the cabin.  Jonathan slept on the loveseat.  Tirzah had collapsed on the pull out bed.  How they had slept through all of this I will never know…except that this is normal for them.  They and their sister, Eva, who slept in the other bedroom, had always known this chaos.  They had adapted.

“Ok. Isaac, we’re going to work.  Write your name.”  I had a stash of notecards I had brought for Isaac to sign and tidbits of candy cane to exchange.  He tried but he was too wound up.  His penmanship lacked.  His letters were huge and off the cards.  I conceded a couple of candy cane crumbs but moved on to a second activity.  I glanced at the clock.  This was ridiculous.  Four o’clock in the morning and doing behavioral therapy.  I grabbed a pillow kit.  The objective was to tie the fringe and make a pillow.  Isaac has begun to point all the time which is kind of ironic since we had to teach him to point when he was two.  I think of the hours we spent teaching him to point and tear up when I see his fingers now bent in a continual point until his palm is forever wrinkly and damp with sweat.  He has a hard time making the tie and after our night so far I was not going to force the issue.  I wound the fringe and let him pull the ends.  I automatically directed: “Pull Isaac”, “Pull”, “One, two, pull”, “Just four this time”, “Good job”, “Nice working”, “Here’s some candy cane.”  It went on till seven or seven thirty until two pillows were tied, stuffed and closed off and Isaac’s siblings were awake.

Sam and I looked at each other bleary eyed.  Isaac was running around the sleeper sofa again and again and again.  He was fast and making a draft throughout the cabin.  He almost galloped.  “Almost First Day” “Oconee today”, etc., etc.

“We’ve got to take shifts, “I managed.  We knew we had to get some sleep and as things stood we would not go hiking or driving today.  We couldn’t.  Eva came in and took pity on her parents.  She made oatmeal for her siblings while Sam and I nodded off.

I love her for doing that.
We woke up two hours later.  Eva had Jonathan and Tirzah quietly playing Monopoly in the floor while Isaac circled them doing laps around the sofa.  I went to my sweet daughter and hugged her.
“It’s good momma,” she said but she hugged me back and we both spoke volumes through that one hug.

Sam and I moved slowly through what was left of that morning.  We were exhausted.  Our primary objective was to make it to the park office and pay our balance for the cabin.  It takes a while to get six people dressed and ready.  Isaac was not sympathetic to our plight.  He was pretty tired too and very cranky.  As soon as he saw Sam and me, he broke his stride around the sofa and wanted to go.  “Wait” we replied.  “We have to get ready.” Isaac was incapable of patience at that moment.   Wait is not a favorite word of his and as far as he was concerned, he had waited all night.  Immediate escalation ensued.  “Wants needs to calm down.  Must calm down.”   The dread monologue was followed by aggression…pinching and attempts to bite.  First shift.  I got ready; Sam stayed with Isaac and directed Isaac’s siblings to get ready.
The trick to Isaac’s tantrums is your response.  You may not get angry nor may you respond in anger.  Isaac identifies anger in your voice and escalates his behavior further in response.  With every aggressive act, I heard Sam respond “No thanks Isaac.  Tell me what you want.  Use words.”  Then Sam would prompt, “I want…” and wait for Isaac to respond.  Isaac was quiet for just a moment as he glared at Sam and got very close to Sam’s face.  Isaac then boomed (literally because he has little sense of volume of voice) “Must calm down.”

I hurried faster.  Clothes on, teeth brushed, hair brushed, shoes on…ready.  I tagged Sam out.  I saw his eyes.  He needed a break.  He got ready in record time and was going to take over again.
Isaac was still escalating.  I had directed him to a chair to keep his siblings safe.  I sat beside my son.  While maintaining eye contact with Isaac lest he grab me again and attempt to bite, I conferred with my husband.  “Take the others to the office Sam.  I don’t know that Isaac is ready to go anywhere.”
My husband and I are decent lip readers which is good because Isaac was now wailing and hitting himself on the head.  Sam nodded, knowing that while the children were used to seeing such scenes, it would be better for Isaac to have a limited audience.  Sam kissed me on the cheek as I continued to watch Isaac.  “I’ll be back,” my husband assured.

I was glad he had taken the other children.  I hate that these scenes are so familiar to them that they don’t even get upset anymore.  I stepped out of my body that was watching my tantruming man child.  All of this seems so wrong and yet there is nothing to be done differently.  Isaac was exhausted.  He was angry and frustrated and didn’t quite know why.  He could not understand if I were to use words to reason with him.  All I could do was sit beside him and direct him to stay seated and to end his tantrum.  We continued this ballet for thirty to forty minutes.  Isaac would throw his hands out to hit me.  I would catch them in my own.  “No thanks Isaac.  I do not like it when you hit.  All done fit.  Hands in lap.”  He would comply but would continue to scream.  A second later, the drama replayed and we repeated our choreographed steps.

Sam and the kids were back.   The ranger wasn’t there.  We had missed the morning office hours.  He would be back in another hour.  Sam had not wanted to leave me alone for too long.  He trusted me but he loves me.  “I’m ok,” I assured.  I continued to watch Isaac while Sam got lunch together.
Isaac saw the food and began to calm himself.

“Are you all done with your fit?” I asked.

“Yeah” he replied.

“Go eat your lunch.”

He ran to the table while I directed my other children to scoot over and give Isaac plenty of space.  Isaac has pinched them from time to time.

We finished eating.  Sam and I conferred.  Isaac was holding steady.  He was fragile and might tantrum again but he was ok right that minute.

We decided to all walk to the ranger station.  The air and the exercise might be just what Isaac needed.  Let me clarify.  The outside exercise might help Isaac.  He had already paced miles around that sofa.

I went to Isaac offering the trip in a first/then format.  “Isaac, first walk to the office, then candy.”  I do not mind admitting my own desperation and offering a bribe to my child.

“Candy” Isaac repeated with a lilt in his voice that betrayed his interest.
“First, office, then, candy,” I reminded.

The boy was out the door and we all hustled to catch up.  We traveled to the office in record time.  Sam paid the bill.  I looked around the office/shop while holding Isaac’s arm and repeating softly, “First office, then candy.” The ranger asked if he could give Isaac his prizes for the Jr. Park Ranger programs he had completed.  “Today might not be the best day for that,” I advised knowing that we had several more days to camp.  The ranger was amenable and wonderful.
“I’m here when he’s ready.”

“Maybe we’ll try tomorrow.”  My voice was hopeful.  I was praying that this current mood would be the peak of difficulty for the trip and that Isaac’s mood would reshape itself quickly.  The children got moon pies and sprites.  We took them to the porch to eat.  Isaac finished in ten seconds and was beginning to get antsy.  He had been to the office.  He had eaten.  It was time for the next big thing.
 We managed to mollify his behavior by taking his picture on the slide of the playground that was mostly abandoned.  One family moved away at the sound of Isaac’s sound effects.  That was really for the best.  I do not want him to hurt other little ones.  A few times down the slide, a few pictures – and off we went back to the cabin.

We approached bedtime in an attitude of cautious optimism…and prayer.  Please God let him sleep tonight.  We can’t do much more of this.  We had supper and then wound the evening down with a quiet fire and roasted marshmallows.  The rest of us were exhausted.  Isaac was still pacing and running around the sofa.  Please, please, please God, we begged the Almighty.  The others fell asleep.  Isaac was still up pacing around and around and around his sleeping sister on the pull out.  That was about 10 o clock.  Around and around and around he went.  It was now midnight.  Sam and I were exhausted.  We prepared for bed and laid Isaac down too.  He popped up every two to three minutes announcing the upcoming days on the calendar.  Not only was he awake, he was upset with us because we were lying down.  “Get up.” He commanded.  “No” I breathed into my pillow.  He lay down, talked about the calendar, sat up and demanded us to rise and start the day.  There is such a point of bodily exhaustion that you fall asleep no matter what is going on around you.  I dozed off for a minute and woke with a start and a silent scream as Isaac had come around to my side of the bed and had his face three inches from my own.  “Isaac Asher.  Bed.  Now.”  He immediately responded to the fear and anger in my voice.  “No,” he said as he tried to pinch.  I put on my best mama stare …that was possible for the moment.  “I need for you to lay down now.”  He knew that tone.  He complied, though I could tell he wasn’t happy about it.  I nudged my husband to let him know I was taking the night shift with Isaac.  When Isaac got up again…moments later, I took him to use the restroom and then on to the front room.  We finished a few pillows that night….and then Isaac began his run again around the lane he had established for himself around the sofa.
When dawn came, Sam got up and I went to bed.  It was Thanksgiving.  I was thankful for the relief and for the bed.
The pattern seemed to be about 48 hours awake and a cat nap or two on the third day.  I could recount the entire six days for you and I am tempted to do so.  I am tempted to give a six day play by play only so that you will understand the nonstop nature of autism and the behaviors associated with it.  My other children have taught me that childhood is an incessant adventure.  I know that parenthood and child rearing is an all-consuming endeavor.  Still, with Isaac, with autism, there is a difference.  Most children give in or get distracted.  The obsession driven by Isaac’s autism and exacerbated by his ability to formally decry sleep is enough to drive even the most patient parents to their knees.  You submit your sanity and hold tight to the single thought of this very minute.  I can do it…whatever I need to do….this very minute.  I refuse to think about the next moment, thank you.  I don’t have the capacity for it.  I will think, I will give, I will be, I will hold on to this very moment…and I will get through it.  We will get through it together…me, Sam, Isaac, and his siblings…this hodgepodge…this family.  We will be fine…this very moment.
That is the strategy that has worked and continues to get us through.  Moment by moment, we carry through.
We stayed through the entire vacation.  We modified our hiking plans but we did small hikes.  We made campfires and roasted marshmallows.  We had s’mores.  We laughed and talked.  And then, we went home.  We did not cut the trip short.  If we had, Isaac would have realized that his behavior had altered his circumstance.  That could not happen if we were to ever have a successful outing.  We went home at the appointed time.  Isaac was calmer but still escalated.  It was Sunday night and tomorrow was First Day.  He wanted us to twist time to meet his desired end, First Day and a present.  I am good but I cannot pull that off.  He had to wait.  Isaac was not thrilled.  He went upstairs to his room and tried to calm himself by watching his favorite videos.  We breathed a sigh of relief.  Then we heard him jumping and yelling again.  He bounded down the stairs and grabbed my arm to pinch it.  “No thanks, Isaac.” I replied.  Sam helped.  “Sit down.  What do you want?” Of course we knew, but I now had time to call Isaac’s siblings and get them downstairs and within sight of Sam and me.  We could keep them safe if we could keep eyes on them.  The others were down and Sam proceeded with Isaac.  “I am going to make dinner.  Dinner at 6:30.  Go play until 6:30.”  Isaac frowned but obeyed.  I turned to the others.  “Isaac isn’t in the best mood guys.  Stay down here till after dinner.”  They complied and Isaac kept up and down the stairs every three to four minutes.  Sam cooked.  I stood beside the kitchen entry and greeted Isaac every time he came down.  “What do you want, Isaac?”  “First Day,” he replied an inch from my eyes and in a very loud voice.  “I’m not going to talk about that Isaac.  What do you want?”  “Dinner,” his second choice.  “Dinner at 6:30.  It’s 6:10 now.  Go play until 6:30.”  He went upstairs and then came back.  The scene played out again and again and again.  The other children either did homework, played or read and watched as sometimes Isaac’s frustration bubbled up into behaviors.  He tried to bite and pinch.  He hit his head.  He hit me.  He yelled his frustration.  I kept repeating my lines.  Finally, 6:30.  Sam had set an accurate time.  Dinner was ready.  We all ate.  Isaac looked up, “First Day.”

“Time for bed,” we flatly responded.  This excited him because First Day was within sight.  He knew that when he woke, it would be First Day.  We completed the bedtime routine for everyone and then listened.  Isaac quickly fell asleep.  He had finally fallen victim to an exhaustive intensity prolonged throughout the week.  We all fell asleep soon after.
5:30 in the morning and time to start the day.  Isaac awoke with wide eyes.  “First Day.”  “Yes, Isaac.  First Day.  Go to the bathroom.”  Some things need doing no matter what day it is.  He was up, pottied, cleaned, dressed and down to breakfast in what seemed like seconds.  There was his First Day video….a used VHS tape of a preschool band that he loved.  He shook as he opened the case.  He held it, then looked to our exhausted and exasperated faces.  “January.  First Day.”
Sam and I got another cup of coffee.

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