Sense of senses

Our internal environments are controlled by our senses.  Autism children seem to read their senses more acutely and more intuitively, but have difficulty communicating it.  Parents are the #1 authority on their autistic child's behavior and mood.  Yet we take a backseat to other people's opinions or get shoe-horned into a label of "overprotective parent." (negative labeling with judgmental overtones anyone?!?)  We all know of 5 senses: sight, sound, smell, taste, and touch.  Most people forget energy is like a sense, it dominates our mood, our spirit, and our physical presence.  If we are tired there are gradients of fatigue that influence how snappy or defensive we come across.   Animals are highly capable of reading energy levels and often make a natural pairing with autistic children.  

Most people are familiar with circadian rhythm fatigue that brings an afternoon lag.  Those are often morning people.  Some people are aware of "sundowning" on the dementia spectrum, where erratic & nasty behaviours appear in the late afternoon or early evening.  Hardly anyone knows about "sun-rising," which is also seen within the dementia spectrum when anytime of the morning erratic & nasty come out to play.  Sun-riser people are the ones historically that everyone knew to leave them alone until they've had their first cup of coffee & cigarette of the day.  I believe those are often the night owls and shift workers that prefer evening shift.  

Children need predictable routine for meals and sleep schedules. Teenagers are a different thing again.  They are in a huge growing spurt with hormone shifts and moods.   They flip to evening or night hours easily but often require more sleep than children.  That answers the morning zombie state of many teenagers.  I think the most interesting part is that we can and do change our rhythms but we seem to have a natural setting we gravitate to. We have a natural adult weight we gravitate to so it makes sense sleep/wake cycles do too.  When we travel across time zones and need to re-acclimate on return, we do it gradually if its at all possible to avoid a sleep deprivation hangover slam.  Over a few days going to bed one hour earlier & getting up a bit earlier the next day is the kindest way to re-adjust our sleep.  Its the same for children and teenagers.  BUT sometimes I have to be The Bad Mom and let MrD get to sleep when he does, and then get him up 30 minutes earlier than the usual time, just to force the bedtime clock back into adjustment.  Yes, it means a tired morning and a crabby supper hour, but the next day isn't quite as bad a repeat since bedtime is tired and less fight.

Enter creative problem solving.  There's a schedule, and MrD does NOT want to cooperate, get up, or get on with the day.  Sigh.  Sometimes I start his day with tickling, that feeds attention and laughter which we all need. Then I give him a time limit to get up & dressed by, 5 minutes, or else he gets a splash of water tossed on him.  This is a graduation from a squirt gun which seems to have mysteriously gone missing.  I set the kitchen timer, when it beeps, he gets wet.  That helps set the action & consequence process.  I'm sure I won't win any parenting awards for it though.  It does work better than grabbing all the warm blankets and hauling them out of the room leaving him cold on the bed.  The next strategy is starting his morning earlier & earlier until he starts cooperating on his own, then I can back off a bit.  Good Morning!

Change is transition

September brings grade 8 into our lives for MrD.  Its exciting and scary.  I remember vividly certain things about grade 8, the chaos, the newness, the anticipation, then the eventual, "that's it?"  I'm a generation X gal, apathy was the flavour for everything.  Much Music, neon colours, Goth, heavy metal, bubble-gum-pop-music, and more advertising than any generation before.  This and a family with heavy influence in critical thinking and social games, not much was a surprise it seems.  Now I see it was full of so much extremes and contrast, but it was normal.

MrD doesn't always handle transition well.  "Front-loading" helps, in which we talk about what's coming up next, sometimes in great detail.  With enough preparation he does quite well.  If we're going to the mall, he knows that is  a big busy place with lots of people milling around.  It used to be I'd have to remind him of the environment, which stores we needed to go to, and what we needed to do or get while we were there.  With practice it is enough now to know, we're going to the mall.  Familiar transitions are almost always easier than new experiences, that seems to apply to everyone.  Strangely we have transitions every day to get out of our house to go out that have resistance attached.  I still haven't figured out if its anxiety fueled or control or rebellion.  Its getting to be the same way to get out of the car once we're home to go into the house.  Its a mystery to me.

The elementary teacher-aid & high-school counsellor have done a phenomenal job of front-loading the high school experience.  MrD has had numerous tours of the high school at different times of day, seen the layout, walked the halls and learned what he will be navigating.  There have also been discussions about crowded hallways, awareness of body space, how much space a backpack takes & not to club people with it accidentally.  There have been giggling conversations about farting in busy halls, so there's definitely an awareness of noxious odors!  Then there's the daily schedule, students go to the teachers, opposite to how most elementary school programming is.  Time also has to be measured and judged.  "I forgot" or "I got lost" aren't excusable for very long.  MrD accepts these new big transitions quite well.  I suspect it is because he has not had a traditional one family upbringing with the same friends in elementary school and high school that I was so bored with during my education.  Then there's the interesting remixing of friendships & enemies, strange alliances that aren't obvious, and the ever present hormone soup swirling around.  That there is the monkey in the system, the mystery to why locker slammings, stuffings and bullying in general appear.  Kids know the rules, so they're subtle, they do things when adults don't generally catch them.  That's the big dread of grade 8.  Unpleasant events once, or repeatedly are enough to make anyone snap.  I'm hopeful the grade 8 year will be a success, yet I do not have much faith in the school system after all the subtle bullying episodes from elementary school.

Transitions of change

My son commutes between our home & his fathers home.  It is not new or unusual, it is our normal since he was 10 months old.  Many children have to do this so it is normal when arranging play-dates with other families to navigate this.  I believe these transitions have helped to bring a level of flexibility to his life.  If he had the same home, same school, same rules, same same same, he would probably be a lot more ridged person.

It is not without struggles.  Mr.D has to follow different rules and keep track of them.  Life is like that.  There are different rules at a restaurant, at school, at the movie theatre, at friends homes...  Unfortunately our two households seem to follow different schedules for the basics of getting up eating, and bedtime.  These fundamental differences really show up in coping, or lack of coping.  I mentioned in the last post about dealing with challenges and negativity.  Mr.D is a lot more negative for awhile.  He describes it as a "black hole or a  void."  I work with dementia clients and one fellow transitioning through dementia described the it as "a blackness that creeps in and is heavy."  I found it interesting that as my son gets older and is able to think about things he came up with such a deep description.  So, its not my imagination that he is in a very negative place and it does change him.  Last year a psychologist recommended to me to limit transitions.  I can't see how that would ever be possible.  Life is full of transitions.  The meal ends, the movie ends, a car accident, a birth or a death, marriage, divorce, transition is part of life.  As much as I struggle with my son when he returns home, I love him no matter what.

When he was a small child and anxious about going to see his Dad, I would tell him that its okay, he's safe, no matter what he would come back to me and I would always come back to him.  I cried inside later but I kept it from him.  No one said that being a mother came with such complicated feelings.  I realize I am not here to be his friend, I am here to do the hard part, to get him through childhood to become a functional, kind, and independent man.  So, when he comes home he needs more hugs.  He needs a gentle pull back into routine with love.  He backtracks and delays and dawdles getting his jobs done, because he is remembering yet again how to get along in our home.  Sometimes there is lots of yelling too.  When we talk about it I remind him that if he followed through instead of just answering and not acting, the yelling would stop.  I can't stand over him to watch him get naked to get into the shower, he wants his privacy.  I can't stand by & crowd him to get his teeth done when he's standing in the mirror making faces or jumping just to see his bangs bounce.  Privacy vs taking responsibility vs owning responsibility.  One day these things won't be a big deal, but they've been ongoing for so many years now it feels like he'll never master them.  I know he can do his tasks, the trick is getting him to own them.

Listening

My son's selective hearing is very frustrating to our family.  We had his hearing tested & it's normal.  He can hear conversations that are none of his business.  He can hear crinkling in the kitchen that inspire him to investigate.  He can purposefully hear some silly  musical twists that make lyrics of songs hysterical & distorted from the original interpretation (I do that too!).  "You can call Me Al" is an old 80's song, can't think of the band right now, but I've always heard it as, "You can call MEEE--owww!"  Lots of people do this to lyrics, it makes life more fun.

When it comes to everyday jobs of getting ready for school, the bus, bed...  Well, I can ask him, did he brush his teeth?  He will either reply, "Okay"  or "In a minute." & continue reading comic books or building Lego.  He has done the social pattern of answering the question, but skirted compliance.  Let me tell you, this is really maddening when pushing 10pm & school the next day.  Time doesn't stop or wait, jobs still have to be done.  We've done all the parent tricks:  asking, repetition, yelling, begging, pleading, guilting, removing privileges, swearing...  Do not pass Go, do not collect any dollars.  Hold that thought, meaningful tangent coming.

Not that long ago he liked singing a really annoying song, repeatedly.  Did I mention repeatedly, in a horrible falsetto voice?  regardless of telephone conversations in progress, headaches, parent fatigue, REPEATEDLY.  The song was, "chicken wing, chicken wing, hot-dog and balognee, chicken & macaroni"  With the addendum of "Hanging with my homies" later on when he understood what a homie was (slang for a friend).  I have a really high tolerance for all things annoying.  I learned a long time ago that if I ignore the annoying current trick, it fizzles out because it has no effect. Didn't work this time, drats.  So, after putting up with this for a few weeks, it occurred to me, he needs to sing, he needs music, he needs reaction & attention.  I have never been great at playing by dictator rules, I usually duck & navigate my own way until the tyranny abates.  I finally had a "duh" moment, and thought, I can fix this, change the lyrics to words he doesn't like.  Well now, here's the new & improved lyrics: "Sexy things, sexy things, penis and vagina, boobies & _I forget the last word_."  We have a winner!!!  Every time the chicken wings song came out we would chime in with the new lyrics right over top, louder.  It took about 2 days, but it worked!

Back to the selective hearing topic.  My son was having trouble with stopping his preferred task of reading Calvin & Hobbes to get on task.  Who doesn't like Calvin & Hobbes? Thats great reading, normally a parents job is to encourage reading.  Its also somewhere in the unwritten job list to get children to comply on their own, to take ownership & responsibility for everyday tasks.  Now when I get the dreaded reply, "in a minute" or "Okay" I ask him again, with really syrupy sweet names.  "Honey Bunny, are your teeth done yet?" "C'mon sweetheart, its time to go!"  "Sweet'ums, get out of the tub please."  The more saccharin the better!  Now its a challenge to come up with sweeter & sweeter phrases with the added ante of saying, would you like me to open the front door for the whole neighborhood to hear?  Compliance achieved!  He got quite mad about this until I explained it to him this way.  He's dabbling between little kid & teenage independence worlds.  If he chooses to behave like a little kid, then I have to treat him that way.  If he wants his independence, then he should prove it by cooperating with these basic everyday jobs.

Prepared

I try very hard to keep prepared & to teach my son this skill.  It affects everything, from cleaning up after yourself, to having everything ready to go to get out the door.  As we all know, if you don't put away your breakfast dishes, they will be there waiting for you later.  "I'll do it later," is the common thought right.  Well, then later comes, you have other chores to do, and other commitments to run off to.  Later never comes.  Next thing you know its tomorrow morning & there's the stinking dishes from yesterday, still sitting there.  This is typical action & consequence in real life.  Being prepared to get out the door has its own obstacles.  I have found that I have to break it down, every day, to the essentials.  If I leave it open to guess, stuff gets missed, like lunch.  The natural consequence for that is to go hungry and to play on your friends generosity to share their lunches.  When there's a lack of friends because of exclusion practices in play, who's going to share their lunch?  Then it snowballs into a hungry morning since there's nothing to snack on.  Then a hungry grumpy lunch time with nothing to do or eat while everyone eats their lunches.  Other kids can sense he's on the brink of not coping, so they tease his last nerve because thats what kids do (and its kinda fun to push him around a bit, power play stuff).  Then the afternoon is where the struggle really shines.  Being outside on the playground is usually okay, outside is nice, there's other things to think of and do.  Class starts again & the hungries set in.  This wouldn't bother a regular kid the same way because they would've mootched of their friends lunches.  My auspie kid didn't.  So now there is learning to do, behaviours to keep in check.  Again with other kids zeroing in on this, they quietly but steadily take turns bugging the last nerve.  It doesn't take long for a full on Mad to erupt, this ends the learning, the concentration, and the coping that was on thin ice anyway.  Off to the school office, where the Mad is out of the classroom, but needs to be vetted somehow.  No adult seems to know how to communicate or address the Mad, or defuse it.   Enter Yelling, and what looks like Uncooperative arm & arm with Defiant.  Or thats what it looks like to any adult that has no knowledge or comprehension of the backstory.  See, autism is invisible now.  My son has been punished like this multiple times every school year.  Despite multiple communications, extra snacks stashed in the backpack, and repeated occurrences, it keeps happening from time to time.  Sometimes it happens if he was busy minding the social interactions in play during lunch between his classmates.  Sometimes he's way off task & no one was around to check & cue him to get on with it, eat your lunch.  The fallout overflows to the school bus ride home, where other kids, even much younger ones, enjoy poking the last shreds of nerves.  Then if he's really lucky, he can't communicate it to the bus driver because he's so overwhelmed & fed up, HE gets punished by the bus driver with a disciplinary warning bus note.  Next transition is coming home, bang the front door, with Mad & Unpleasant in full power.  The cats know to hide.  I know that he needs to calm down but there's no way he's gonna snack at this point.  On goes happy cartoons, with my direction, "
on the next commercial, go wash your hands & face so you can snack."

This is just one day, that can happen several times a week.  I've seen it happen enough to know the whole sequence.  I've done the "sleuthing" the "planning" and the "problem solving."  It doesn't do any good to hide him from daily interactions or events.  Life isn't fair, or easy.  If an auspie kid is never made to go through the everyday challenges, how will they ever learn to figure it out themselves?  We've had lots & lots of problem days, similar & different to the one described today.  Sometimes all the planning & preparedness just goes out the window.  Thats life isn't it.

Behaviours

I've been struggling with my son's behaviours for thirteen years.  Some are cute, others are downright obnoxious.  The problem is they are often the same behaviour.  So a behavior that was cute or even funny, like hiding homework behind the class book shelf in grade 1, is now a longstanding problem in different variations.  It was silly, even smart at the time, now its a lousy habit.  That microsecond that I was human & approved the inappropriate behaviour with a small smile, well, now its entrenched.  yay.  It doesn't seem to matter which adult micro-approves, thats what sets it in place.  I can repeat myself, clearly, concisely, loud or quiet, threaten, bribe, or fine, yet we still struggle with everyday basic sequences.  I'm talking getting ready for school, getting ready for bed, getting out the door to get to an appointment...  Something is messed up with the transitions.  I know that to get through these trials I need to set the expectation that he will reach for independence.  The problem is the every day implementation of it.

Factor in that his behaviour & response are emotion driven, its not rational, just full on maddening.

Problem solving is like this, the theories are all well and good.  Not so helpful in practice.  I have to be lock & key with every move until its mastered before I back off.  Then we have a setback, or he forgets, & we start up again.  Every day is sort of like the movie "Groundhogs Day" with Bill Murray.  The day starts out about the same, repeatedly, and seem familiar but they're not.  Its nice in a way that if yesterday was a bad day, it doesn't taint the new day.  Its awful to every day be reminding of basic functional patterns like making sure he's got his lunch, backpack, planner, and house-key before bombing out of the house at the last possible second to the school bus.  It takes a looooonnnnnnngggggg time, but eventually he masters a sequence.  Occasionally he masters it quick.  Of course, we have setbacks & the sequence has to be rebuilt because it doesn't fit anymore.

Okay, here's a current functional problem solving in progress.  Getting out the door.  Thats what is understood to be a "transition."  Life is full of transitions, there's no avoiding it.  Going out, coming home, the movie ends, getting ready for the day, getting ready for bed, a car crash, losing a job, being late...  How do you teach "transitioning" when there is  a gap in daily memory?  We have lists to help give the responsibility, they're only good if referenced to.  Comic books, Leggo, TV, the cat, an itchy back, and more can all derail transitions.  So every day I am there to keep the reminders flowing to get out the door with everything needed to succeed the day.  Occasionally I am inconsistent.  Shift work does that & so does life.  Hiding human inconsistencies doesn't help an auspie solve everyday challenges, real life isn't consistent & neither are people.  When I back off & am less insistent on the everyday preparations for each day, he goes off into his own orbit.  I like his happy place, there's lots of interesting things going on there, I wish I could go there too.  But when the clock is running out, and its getting more pressure based, things get worse.  Bring on the Mom voice, asking, reminding, nagging, yelling, threatening, bribing...  Mostly none of that bag of tricks works.  Backing off & allowing natural consequences isn't always an option.  If he misses the school bus, well, now I have to drive him or he walks.  Driving him is kinda what he's after, more time with me.  I'm all about getting him independent in his life skills.  I have already said that if I have to drive because he missed the bus I will go in my housecoat, jammies & slippers and walk him to the front door, a public deterrent I hope.  He's still not quite on top of the whole strangers & interacting to let him walk alone regularly.  That would be better if he had another kid to walk with, but he's excluded a lot.  Thats another post later.