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Summertime Schedule

Ah, summer! A time for fun! A time for relaxing! A time for chaos!

When you are autistic, the unorganized, seemingly endless days of summer can appear as a nightmare!  Sure, the first few days of sleeping in are great.  Then the trips to the beach, the park, the theme parks all seem nice on the outside, but something deep inside starts to go a little haywire.  By the two-week mark, circuits are as fried as all the yummy summer food you’ve been eating!

Or at least that’s how life appears to be for my son.

Connor fights school.  He whines about the appointments.  He complains about having to do all the non-recreational stuff he has to do for his ASD diagnosis.  “No school today!” is a common refrain at our house in the mornings.  He usually follows it up with “maybe tomorrow”, as if he’ll be more prepared by then to buckle down.

What he may not consciously realize is that every time we have a prolonged break from school (and thus a break from routine), his world starts to spin out of control.

There are too many options, too many fun things to choose from that he eventually suffers from choice paralysis.  When his days are structured and ordered, we have a clear, limited number of choices because our “free choice” time is limited.

To a child this may sound like torture! Only having an hour or two of free time each day! During the summer!!! This woman is a fascist!  But for the child with autism, the structured day is the mental equivalent of eating your vegetables.  You may not always like them, and I can dress them up to taste better, but they will in the long run make you healthier and stronger.

Since school let out two weeks ago, I’ve watched my son’s behavior slowly devolve from happy, compliant and self-contained to needy, angry, and defiant!  Tantrums went from 1 or 2 every other day to 2 to 3 every day.  Time outs tripled.  Bad behavior, we had happily curtailed, reemerged.  Anger was always near the surface.  Hitting, kicking, throwing things, all behaviors we had worked on diligently for the past year and had successfully disappeared from his repertoire began to take shape again.  Perhaps worst of all, his language began to disappear.  Words were replaced by screams and grunts.

The de-evolution culminated on Saturday when we were driving home from my sister’s house.  Connor was in the back pretending to be The Amazing Mumford.  When I chimed in with his magic words “A la peanut butter sandwiches” something in Connor snapped.  He took his seatbelt off and lunged at me.  Thankfully we were close to home but for those few minutes in the car there was a violent struggle as I tried to fend of the little demon that had replaced my child and drive at the same time.

That night I cried, Connor cried.  I drank wine while Connor drank juice and was put to bed by my husband.

The next day my precious child had no recollection of the event, but I still felt scarred by it.  I avoided him all day, leaving the parenting to my husband.  I busied myself with groceries, cooking, gardening.  That night we left Connor with my parents so I could have time out of the house and away from my child.

By the time I returned I felt better, more centered and ready to face the daily struggles of parenting an autistic child.  When I picked up my son, he was so happy to see me, so happy to hug me and kiss me; I wondered at the seemingly dramatic change in him.

But when summer school began Monday morning, and we began our routine, my happy child reemerged.  Sure, he didn’t want to go to school that morning, but by the time I picked him up, he was happy, compliant, and eager to get on with his schedule.

While all children benefit from consistency, children with autism seem to need it to function.  And though Connor enjoyed his first few days of freedom, I have a feeling, he’s secretly happy to be back in school

If you’re interested, here is some more information on why consistent schedules are important for both typical developing children and for ASD children:

Autistic Children Need a Consistent Schedule

Norrin’s Story of Schedules

The Importance of Schedules

Ready, Set, Routine!

Bouncing Madness

It’s been about a week since I last wrote.  There is one reason for my absence: Connor.  He is on a short summer vacation.  The special education summer school program ended the last day of July, giving Connor about two weeks of vacation before the August program starts up on the 14th.  What I should write is that it’s giving me two weeks for building an aneurism that will surely blow once Connor is back in class.

In an attempt to keep Connor both away from the iPad and having fun we have spent the majority of the two weeks trying different fun activities in between swimming, gymnastics, and various therapies.  We’ve been to the beach, to the aquarium, to the fair, to several different parks, etc.  Yesterday I wanted to take him to a splash pad just down in the street in Westminster.  Connor however wanted gymnastics.  Well, I can’t just take him to the gymnastics studio and let him loose.  I figured the next best thing would be an indoor bounce house called Frogg’s Bounce House.

There have been few times in my life that I felt such self-loathing as I did the moment after we crossed the threshold.  If only I could be a lazier parent and not take Connor to do fun stuff.  If only I had never heard of indoor bounce houses.  If only every kid in a five-mile radius wasn’t inside of this building.

It took all of my willpower not to turn on my heel and walk right back out the door.

There were literally screaming children running everywhere.

If you had seen me at that moment I am sure that I looked deathly ill.  While other parents there saw an hour of free time as their child played in a safe, exciting environment, I saw only over-stimulated children running rampant, like a pint-sized melee.  It was as if I was Alice at the tea party and everyone was having a good time, and I was the only one screaming that this wasn’t a tea party, this was actually madness.

Let me give you some background on the children’s asylum…I mean on Frogg’s Bounce House.  It is located in a strip mall near several budget stores and fast food restaurants.  It is warehouse sized, allowing for several inflatable bounce houses to be erected inside.  Only two of these bounce houses are typical to what you might find at a birthday party or church picnic, meaning they are just a large trampoline like area surrounded by netted walls.  The others bounce “castles” involve inflatable obstacles, slides, race courses, etc.  In addition to the bouncing there are several air hockey tables, video games, ride-in cars, toy trains, a play house, and countless other toys.

Children ran from bouncing to games to toys with no apparent plan or thought.  They streaked past other kids in their euphoric haze to try the next great thing!

There are no attendants inside the gates of the Bounce House, which left me feeling eerily trapped inside the mayhem.  All adults are responsible for their own children…which roughly 1 in 10 was actually doing.  The majority of parents were reclining in the overstuffed couches strewn about the room, playing with their phones or iPads, looking very much like the older reflection of their children.  Had this been a play center restricted on one age group or another, I would not have wondered at these parents’ lack of parenting.  But the range of preschoolers to pre-teens had me wondering why no one was actually watching their child!

The unfettered freedom theses children had, along with the endless delights had me feeling like I was trapped on Pinocchio’s Island of Pleasure.  I kept waiting for donkey ears to sprout from someone’s head or to be whipped by an ass’s tail as a child ran by!

Not wanting my own child to turn into a jackass, I kept a close eye on him.  I tried to trust him.  I know his behavior has been improving and he can interact appropriately with children his own age.  I know this and still I knew.  I knew that it was coming.  If tantrums had footsteps, they would sound like the inside of the Bounce House.

So I watched and waited.

This picture was taken in the first 10 minutes of our visit.  Connor is calm but having fun.  Yay!

This was the last time I could get him to stay still.

As he bounced around the various houses and castles, as he chased after children, after he abandoned toy for toy, I could see sanity slipping away from him.  It was like watching his nervous system overload before my own eyes!

His movements became jerky, his running faster, his voice became louder and higher pitched.  He started screaming for joy.  He ran into other kids on purpose.  His laugh transformed from giggles to something truly maniacal.

I knew the time was near.  Tantrum’s hand was on my shoulder, watching with me, waiting to pounce.

I tried to calm him.  Every time I neared him, I held his hand and pulled him near me telling him softly to calm down.  All I got in return was a look that said he wasn’t entirely sure who I was and what the words I was speaking meant.  He squirmed from my grasp and ran off.

I stalked him to the play house near the back of the building.  Two ruthless blond girls had denied him entrance earlier, which Connor had accepted gracefully.  He was apparently back for revenge.  The girls were nowhere to be seen.  An adorable young Asian boy about Connor’s age had taken their place.  He didn’t know he was already standing on the landmine.  The boy let Connor into the house and they started to play together.  It was going well, but alone now, I knew that the Tantrum had possessed my child and was just lurking under the surface waiting to strike.  The other boy tried to leave the house, but Connor closed the door and pushed him back into the house, effectively keeping him holding him prisoner in a plastic faux-log cabin.

Before more violence could erupt, I rushed the house, pulling Connor out and placing him in a nearby bean bag for a quick time out.  Violence is met with zero-tolerance.  The eyes that looked at me from the bean bag were full of defiance and hatred.  I wanted to search his hair for the beginnings of donkey ears.  I never got that chance.  Connor’s tightly strung, relatively calm demeanor shattered into a thousand pieces as Tantrum truly took over.

Fighting off kicks to the shins, I picked Connor up and threw him over my shoulder.  I felt something not unlike rescuing a brain-washed hostage from an enemy camp.  Though he cried and beat at my back, the tears stopped as soon as we left the building.  He whined and cried the entire ride home, but never once about the bounce house.

I think Connor recognized that he was out of control.  He could feel the mania and do nothing to stop it.  Once at home he went to his room and calmed down on his own accord.

And though he never said this out loud, I think he was grateful when I removed us from the bouncing madness and vowed never to return.  If he wasn’t, then he’ll forget it in time and I will not be the one to remind him.

Anatomy of a sick day

Sadly I didn’t post yesterday because my child was home sick.  And though he spent the majority of his day behaving as if he felt perfectly fine, Connor seemed to need me close at hand.

It all began Wednesday afternoon…

At the school to pick up Connor from his preschool class,  I heard a wailing sound.  I knew that sound! It was Connor, crying and screaming as his teacher tried to put  his backpack on him.  Usually Connor loves to go home! But this was an early day, so maybe he was thrown off schedule.  Ok, well, we’ll roll with it.

His wonderful teacher, Mrs. S, explained that he had seemed tired and restless towards the end of class.  Odd, I thought, he slept a good 11 hours the night before, plus he’d been eating everything in sight for the last 48 hours (granted that was only if his favorite foods were in sight).  Maybe he was growing, which can be a tiring and sometimes painful process.

Off we went to the house, where we were met by Connor’s new after-school therapist.  As part of his ABA therapy program, Connor gets 8 hours of ABA at school and 4 hours at home.  Wednesday was his first in-home therapy session, the first time he’d worked extensively with this particular therapist.  I was prepared for some tantrums, or at least a little whining.

Connor surprised me by being friendly! He immediately engaged in cooperative play, as well as verbalizing on demand.  I thought, great! I’ll just go do some dishes in the kitchen.

That was a mistake! When will I ever learn??????  If something is going WELL don’t do anything to change the formula!!! Duh!  Rookie mistake, Erin!

Of course Connor devolved into a crying, clinging mess when I tried to leave the room.  Even after I’d sat on the ground with his therapist and become his living tissue, it still took 20 minutes for Connor to fully calm down.  Though that’s not atypical for children with autism to tantrum for extended periods of time since they often lack the ability to regulate their emotions or to self-soothe, Connor had improved so much recently in his self-regulating that 20 minutes straight was a long time for him.  I simply took it as another sign he was tired.

After therapy we spent the rest of the afternoon just playing outside with the garden hose, watching Toy Story and playing matching games on the iPad.  6 o’clock rolled around quickly enough, and since it was Wednesday (my night to go out) the sitter arrived and took over with minimal upset.  Returning from our dinner and a movie night, my boyfriend (TS) and I found Connor fast asleep.  We followed suit and quickly went to sleep ourselves.

THANK GOD TS had stayed over!

Around 3 am I hear crying and the sound of running feet.  Connor jumped into bed and snuggled up to me, attempting to sleep but pitifully whimpering.  I did all my normal soothing actions: stroking his hair, pulling him close and rubbing his back, whispering softly to him.  Nothing was working.  I noticed a wetness on his waist band.  I hoped it was merely that the diaper was overly full with pee pee.  But as the crying continued, I knew better.

Ok, up we went, into Connor’s room to change his diaper.  He begins fighting me tooth and nail, flailing in my arms, attempting to grab on to anything to stop progress towards that torturous changing pad.  I call for TS to come help me.  He jogs into the room, groggy but willing to help.

This poor man! He meets me, falls in love, and then gets to help me with my sick child at 3 in the morning.  And when I say help what I really mean is that he holds him in a hog tie position while I peel the contaminated clothing off my son then fight to wipe off the watery bowl movement, effectively covering my hands with poop.  Connor is of course screaming his head off as if he is being physically tortured because since he voided while he was sleeping it left him with a very violently red rash.  All this TS has the privilege to assist with.  He truly is one lucky guy.

The only solution was to get Connor into the bath to finish cleaning him and to help leach some of the inflammation out of the rash.  And despite the fact that the bath would be soothing Connor refused to get in.  In fact he refused to take his pajama top off.  So he’s literally standing in the ankle-deep bath water pants-less screaming, hot tears rolling down his face, while I try to coax him to sit.

Finally I give up trying to use reason and force Connor to sit in the water, holding him there by leaning into the rapidly filling bath, soaking myself.  At last Connor recognizes that his poor bottom actually feels better in the water.  He gives up screaming, but still clings to me.  Connor releases me little by little until it is just my hand in his, which he strokes over and over as if the rhythm of pressing my hands between his is calming to him.

We sit like this for a long time.  occasionally I’ll stroke his hair or whisper some soothing phrase.  Tears fall down his cheeks from time to time.

My patient, saintly TS who had stood calmly by, assisting where he could, hands over some children’s Tylenol and sets up Toy Story 2 for Connor to watch in the big bed with us.

After I’m sure the Tylenol has kicked in, we move him out of the bath and his wet pj top, letting his sleep in just a fresh diaper.  Connor crawls into bed, arranging pillows how he likes them, leaving TS and me with just half of the bed to share.  At last, sometime around 5:30 we drift off to sleep.

When TS leaves for work at 7:45 I call the school to report Connor’s absence.

We awake naturally and slowly around 10 am.  I expect my sickly child to be sad, whiny and clingy as he wakes to the world.  Instead, he immediately begins chattering.  He literally jumps up and on to the bed, jumping up and down as if he hadn’t a care in the world. Though only noticeable difference was that Connor didn’t want to eat much and he wanted me near him at all times.

We spent the rest of the day playing, running around, engaging in general silliness!