All in a Day's Quirks

Great big thanks to our newish (Sept.) Pediatrician for G.  We discussed several options during G's med check.  At the last minute he switched to a different med and thought it would be a good fit.  He brought out samples to try, enough for over a month.  I told him Santa appreciates that.  Holy moley, this kid is expensive.  How do families with multiple kids w/dx's afford it?

Again, this is a combo med.  His new Adhd med works great for attention, but turns him into a tyrant.  He throws things, crosses his arms and stomps around very very hard.  He screeches.  He runs around and is hyper until 2 am.  He has potty accidents.  He has dark circles under his eyes from lack of sleep.  

The last combo med meant to chill him out made him even worse.  I stopped it after 2 weeks.

Let's hope this new med stabilizes him.  I asked him on the way to the Dr. How he thought his new med was...did he like it?
No.
Why?
It makes me say bad things and throw stuff.

What a breakthrough!  He has become increasingly self aware in the last 2 weeks.  Is that one of the "pros" in the comparison checklist?  Absolutely.
Other "pros":

He has wonderful attention. 

He is communicating better.

He seems to be more social.

He has an appetite.  He'd lost 18 lbs.  Since
Feb.  Today's weigh-in he's gained 3 lbs.  He was actually getting bony.

He's into music and singing, playing mytunes constantly. Yippee!  This also means he requests music in the car.  Before he often threw a fit if I turned music on (sensory)  I love to sing in the car!

He's increased his creative expression.  He's actually drawing, crafting, creating in amazing ways.

His tics are gone except the nail clipping/picking OCD, and sticking his fingers in his nose.  UGG!  Could there be a more disgusting obsession?  But it's still better than his previous magnitude of tics.

Meds.  It's all a delicate balance.  I have to consider that he could be growing naturally more self aware, social, etc.  But when changes appear simultaneously with new meds, I tend to believe it's the med.

I learned some shocking news yesterday.  I was skimming Facebook and saw a photo of G's prior ped.   He is being charged with peeping in a window of a 12 year old girl on 4 occasions.  I'm so hoping this isn't true.  I just can't imagine it.  He was so incredibly patient with G, and communicated well with him and me (with my 2000 questions).  He's the Dr who gave us the miracle of pharmacotherapy. I'd tried a couple others, called many.  Most wouldn't give meds.  He did on our first appointment.  He tweaked the meds, tried a few alternatives.  Ultimately though, he said he wasn't comfortable dispensing meds with multiple dx's present.  He advised a pyschiatrist to get it worked out, they knew these meds very well.  It ended poorly when after about 50 calls (no lie), I called back to let them know that insurance mandated him seeing a psychologist, going through the lengthy, costly process of evalution.  Only then would he be referred to a psychiatrist (probably with a multi-month waiting list).  Then the consults with them before dispensing meds.  Ugh!!!  I had neither the patience or time left for that.  I have a at least 30 dx's and detailed reports that I could supply any Dr. in order to document his precise issues.  Plus insurance mandated that he sees psychologist regularly for counseling therapy.  REALLY???  The NP relayed this to the doc and he said to keep trying, he was not going to give more meds.  I told the NP that it saddened me to have to now find a new pediatrician.  He was a brick wall, not budging.  So different than his usual kindness.  That scares me a bit as to why ...are the new class of drugs more dangerous?  Why the change of heart/compassion?   Maybe it's protocol.

I had to laugh and accept it, multi-task while I waited on hold endless hours waiting to speak to a human.  What would G's psych sessions look like?  Clearly NOT the typical lie down on the couch and bare his soul, discuss his issues.  He's 6!!!  He thinks the world revolves around him.  Therefore, he has no problems!  Life couldn"t be better!

I finally was referred to another doc from another mom who I struck up a conversation with when somehow G's Adhd came up.   I've been very pleased with the new ped so far.  He's gentle, kind and specializes in ADHD, ADD, ASD.  He picked up where we were, asking many questions and treating us both with ease, humor and respect, as our previous doc did.   Best of all, his office is closer to home.

Onward to new horizons.  I'd be stuck without a ped if we hadn't changed G's last Dr.  He took a leave of absence pending this accusation and legal action.  I'm afraid that true or not, his career will be affected poorly.  

Meanwhile, we'll be monitoring G.  I'm so Prayng for  SLEEP! 

so they don't unravel.  

Thanksgiving Eve: while I cleaned up the kitchen post veggie cutting marathon, I finally got G to go upstairs and get ready for shower time.  I heard him singing, then every 30 seconds or so he'd call out, "Are you coming yet?"

He excitedly met me at the stairs. 
In a tour director voice, "Just follow the trail to find your way to the shower."

Cute, he'd created a trail of cereal, up the stairs, down hallway and through our bedroom and bath.  But the kicker was then he got down on all 4's and ate them, sliding along his trail.  Ewwwww!  I don't care if we'd just shampooed the carpet today, that's disgusting!  And no, it's been 6 months...and a week since I vacuumed.  Ewwww x gazillion! 

But like many things in the course of a day with G, I gave it up.  He was proud, he was acting out a creative scene, and the likelihood of him getting ill from our carpet was small.  Am I being a bit lazy?  Oh absolutely!!!  After a day/night completely alone with him, no breaks, and finally getting him to agree to take a shower, I'm weakened.  Let him "work" me in my exhausted mental/physical state, it won't be the last time. 

Never weak, but I have limits of strength.  :)

Like the saying goes:
Never mistake my kindness for weakness.

Update:  As I sit here blogging, G's gotten out of the shower and began blowdrying his hair in his haphazard fashion(usually for about 30 seconds).   Next thing I saw: G blowdrying his "weiner".  It was only about 3 seconds, no permanent or even temporary pain/damage.  OMG, he's ridiculous.  I put a stop to that!  Sorry G, you can't act out those kind of creative actions. 

G asked me how to spell some words for his card.  I learned a long time ago with N and M to write out their message and let them copy it at their own pace.  Otherwise I'd be spelling all day.  Particularly with my perfectionist N.  Happy to say that N's a primo speller now.

G and I picked up M at middle school andx took off for OT.  M's career ambition is to be an OT.  A perfect fit for her athletic skill, extreme patience, sunny disposition and love of children.  She loves to watch G do his OT.  I try to explain to her what they're working on, based on my book knowledge and the excellent communication/feedback I get from his OT.  G's benefitted double for a month or so because another student has been observing and helping.  So inspiring to see these young professionals put so much planning into his sessions.  They light up when he reacts and patiently guide him when he gets stuck.  M takes it all in.  She walks back and forth in the observation room, straining to get a perfect view, follows along with his movements, squats down to watch closely, and whispers excitedly every 2 minutes , "Did you see that ____?"  

G made a list of our schedule tonight before we left home.  No pictures, which I found surprising since he's been making visual schedules often recently. 

M
OT
Shopping
Mcdonalds
Home N Dad

We ate at Steak and Shake (marginally healthier and the shake idea won him over, to M's delight.  Running to the car in the pouring rain, G jumping, splashing in every puddle in the lot, "This is the best 'Girl's Day Out' ever!"  Oh, he knows he's a boy alright, he just loves his girls, Mom and M.  Sweet.

2 stores later as we entered Marshall's, "I know why we're still shopping.  I didn't cross it off the list yet!"  Gotta love his logic.

I was looking for a household item, but G ran to the shoes.  Marshall's totally rocks our shoe habit.  I pretty much look and drool, with a faraway glaze over my eyes.  G and M love to try on shoes.  Both heels and boots.  Another year or so and I'll have to stop G, but it's harmless and cracks us up.  He loves patent leather and sparkles.  M likes funky, my kinda gal, but with heels.  Seriously though, I get great deals for the kids' shoes which keeps us going every few months as one or more grows.  Fun! 

G crossed it off his list at last.  Onward home to follow the bathtime story I scratched out in a fit of panic last week as a last ditch effort when he was uncooperative.  I'm going to need to copy and laminate it.   Though clearly not indicative of my expensive Art Degree, no changing or re-do's allowed.  He'd have a cow.  But of course he tells me each night that it's supposed to be "Dry off", not "towel" like I say.  And I notice that he's put a few extra xo's in before the shower.  Alway's room for that! 

G loves that new little secret of x and o...each night he comes and kisses and says "O!"  Then a giant, "X!"   

xoxo...

G is really loving picture schedules now.  At long last! 

He loves to draw them at OT, and I'm thrilled to see his natural drawing ability.   Today he 's allowed to write on the 2-way glass.  Such a strange experience to have him looking right at us, but not seeing. 

Let's hope he doesn't take a marker to our windows or mirrors at home!  Not that I care about the clean up, but if he makes it a habit, he may carry it to other environments where it will not be welcome....Grandma's, mall windows, school.  Lol

Sensory Integration Disorder (SID)

Sensory Issues

Sensory Avoidance

Sensory Defensiveness

When you hear about Sensory Processing Disorder (the new buzzword, aka SPD), usually people are familiar with sensory avoidance.  We've all known adults and children who are persnickety about certain textures, sounds, tastes, scents, etc.  SPD is that magnified 1000%, to the point of being disabling, isolating, physically and mentally painful.  No amount of logic or thinking will get the sufferer through.  It is truly a fight or flight situation.  

What most people aren't familiar with is it's lesser known sibling Sensory Seeking Behavior.  Everyone has known someone who's always on the go, is curious about everything, and seeks out action and thrills.  The Sensory Seeker is that on steroids, plus much more.  Never in one place, these kids seek loud noises, strong tastes or smells, fast action, power and often danger.  

G's both, which is fairly common in autism.  Usually the scale tips towards sensory avoidance with autism, but with G's ADHD added to the mix, he's primarily sensory seeking with a few avoidance issues.  For years, I've seen G's life flash by; sure he'd be lost or taken, run over, maimed or killed by a dangerous act.  My fears have lightened as his meds have helped - at least with his tempo - not driven by a motor at 100 MPH.  He has slowed down enough so that we may teach him danger.  He may not understand the logic.  I still can't tell if he understands our reasoning; or whether it is repetition and memory from visuals/PECS/social stories.  In any case, he's improving.  Drastically.  Thanks be to God, karma, Buddha, the stars, the moon, the greek and roman gods/goddesses, feng shui, chakra; all of it.  :)

But G's physical senses are also neurological affected.  He's under-responsive, proprioception (balance/body awareness issues), poor motor planning (clumsiness and delayed processing), high tolerance for pain.  Talk about the worst possible combination!  A clumsy danger seeker without a sense of pain.  He's constantly assuring us, "I'm ok," if he falls or hurts himself.  He's finally at least aware that he's done something to cause us worry - a good sign.  

But once the painful event is over, it's often difficult to get a straight story.  "How did you get that bump, G?"  is mostly met with, "I dunno."  At least he's past the stage where he was creating elaborate stories, making up people, scenarios.  What a terrifying, frustrating trip that was.

Here's an chilling example of his lack of sensory response to pain.  G is not fond of shoes or socks (sensory avoidance).  We have improved enough that he keeps them on in socially appropriate situations, but it all comes off when we walk through our door.  In the winter, I must fight him to keep his hat and gloves on.  He often takes of his boots, socks, gloves and hat to walk through the snow, making snow angels and snowballs (sensory seeking).  He's completely oblivious to cold and pain.  There are days when the struggle with him to keep his warm items on is more exhausting than shoveling the driveway...with mental weariness topping it off.  

I've been ill and it's been a busy week.  Tonight I noticed G's hands - from across the room.  I asked him over to see his totally red, chapped, raw little hands. Yikes, does that make me feel lax.  How long have they been this way?  1,2,3 days?  UGH.  Not a word, not a hint of discomfort.  Treating them is tricky, as are most things out of the ordinary for him.  I pulled out the big kahuna - no ordinary hand cream for these poor hands.  I opened a tub o'Vaseline and gently patted his parched hands that still have enough dimples and baby pudge to be adorable.  I explained how he needed the magic V lotion potion to help his hands heal and make the red go away.  Of course he immediately rubbed them on this shirt, probably further irritating them.  Later, I tried applying it while he slept, only to have him shift around, put his hands behind his head, likely smearing his pillow more than his hands. 

I feel his pain.  Every near miss, every moment of disappearance, every icy cold finger and toe, every scrape, bruise, bump.  I'm his eyes, ears, nose, etc.  The Sensory Police.  Here to protect and serve.  

I will not give up.  I have much big kahuna magic in my bag of tricks.  

G's Parent/Teacher Conference was this afternoon.   As I dropped G off this morning, I seriously considered cancelling and rescheduling. After all, I'm there pretty much every school day.  I speak to his teacher, his aide, and the Principal almost daily.  I also get a detailed report from his aide sent home so that I can keep track of his social/behavioral progress.  This way I can address issues right away with him.  But the teacher was busy when I went in this a.m., the opportunity to cancel was not to be.  I'm so glad!

G got stellar marks in academics and excellent assessments on behavior.  This was a report that I would have been happy about for my Neuro-Typical kiddos!  Plus, he's getting assessed on the same scale that all the students do.  Total inclusion.  With help. 

Before I get all swelled in my Proud Mama head, I have to remember that this is kindergarten, so she is used to seeing a wide range of ability and behavior.  But still, I'm so relieved.  All the appointments, struggles, worries, tears, research, and work, work, practice, practice has finally come to a documented improvement moment.  4 years of daily battle against the unknown, the puzzle that G is.  We're by no means finished.  His 3 Special Ed (OT, Speech, Social Skills) Assessment scores were subpar, but that will be an ongoing, ever-changing issue.

I'm thrilled to report that today was the first ever trip home from any assessment, teacher meeting, diagnosis, or any appointment where someone sits across the desk from me and delivers itemized results/criticism about my G -  that I HAVE NOT

Not one tear!  We still have plenty of work, and as the years progress, the gap between G and his peers may become more apparent.  But then again, maybe not so much.  He surprises me each day.

For today, I'm bursting with joy!  I'm proud of him and thankful for each and every therapist, doctor, and teacher who have brought us to this shining moment.  There simply are not enough ways to express my gratitude.  

Go Team G!!!

One common trait most parents strive for in their children:

CONFIDENCE

Most parents fret over this.  We plan elaborate schemes for success and choreograph seamless schedules to keep our precious kids busy building self awareness.  We spend hours shuttling kids around a 300 mile radius of our mostly empty home.  We study hours with them for tests, help with school projects.  We enroll them in summer programs, athletic clinics, clubs, tutors, school programs, tournaments, competitions, and more in the hopes of finding their gift, their source for positive self image.

Parents of autistic kids try the same strategies - in addition to their whirlwind schedule of professional therapies.

I don't have to worry much about pulling out G's sense of pride.

"I am SO TOTALLY AWESOME at this game.  I am SO WINNING I'm the BEST IN THE WORLD!!!"  Of course yelled in a LOUD, unmodulated flat speech pattern common to ASD.  The style of boasting guaranteed to upset classmates and teammates; and quite often teachers and other parents.  But our ASD kids don't have a clue.  They're totally self-contained, self-centered.

ON the flip side, I must be prepared for,
" I CAN'T do this!  I'll NEVER EVER EVER get it.  It's too hard.  It's useless. I NEVER want to do this again!  EVER "  Of course screeched in a fingernails on chalkboard, hair-raising pitch that makes whining sound pleasant
by contrast.

The big difference for most autistic kids is their "All or Nothing/No Gray Area" singular thinking.  They can't see forward to second chances: the next game, the follow-up test, the perseverance of practicing skills over and over to reach a goal.  They don't always understand teamwork.  They don't get Sportsmanship. 
"I am so great!  I'm going to win! Hahaha."

Got an app for that?  One that teaches/models humility, sportsmanship, encouragement?  Rewards for teamwork?   I'd LOVE to consult and beta test it...and I'd bet G's siblings would be grateful.  :)

I'm absolutely serious.  Apple or Android.

Bring it!

  We're trying a new med "combo" with G.  His tics were so bad that he couldn't stop himself and tic-ed all day and night.  It was intrusive and OCD.  The new meds have worked magic to make his non-stop tics vanish.  What a relief.  I don't want him singled out and teased.  He already struggles with so many social challenges.
I'm not certain if it's the new meds, but he has had a few potty accidents.  Shocking because he hasn't for a long long time. Years.   He's avoiding potty needs at school, which is a worry for me.  He runs home from the busstop and flies into the bathroom each day.   He began to have accidents and peed his bed 3 times in 1 week. He even pooped his pants twice!  He has become constipated, never an issue for him.  I'm pretty certain it's from holding it in each day.
Along with this, G's also getting night frights.  Some may be caused from the Halloween factor, but he's not really exposed to scary things.  Many nights he trudges down to sleep on a couch or gets in bed with us.  Tonight was such a night.  I asked him to let me spread a blanket under him in case he had an accident.
Ever so seriously, G replied, "Well, but I only have accidents on garbage truck day."
As my kids would shout, "Random!!!"