Tuesday, December 27, 2011

Bravo Artistas Baristas!

Watch this video to catch inspiration for our young adult's futures.



If you have trouble with above video, click this link:

Awesome, huh?

What I love about this inspiring autism mom's venture is she goes one step further than simply opening a business, a challenge onto itself.  She provides employment opportunity for young adults on the spectrum, pioneering for a rapidly growing segment of autism's population.  In her own humble coffee cafe, she has opened up eyes and minds in her community.  She promotes positive autism awareness to all who come in contact with her venture in a ripple effect.  For her spectrum employees, she offers possibilities, dreams, hope for their future.  Their work grows their strengths, encourages social skills, boosts confidence, fosters independence.

As the saying goes,

Give a man a fish and you feed him for a day.
Teach a man to fish and you feed him for a lifetime.
~Chinese Proverb

I hope that scores of businesses/organizations take notice and find ways to empower our hard working, conscientious spectrum workforce.  They might just discover the most capable, focused, organized, and loyal employees ever.

Got ideas?
I do!
Let's brainstorm over a delicious grande "Rembrandt" from Artistas.  I'll meet you in Tampa (in my dreams).  :)




Tuesday, December 20, 2011

Brief Twinge

G blows me a kiss, a sweet image to remember
"Will you please go away now?"  

No matter how many times I hear this from G, it still shoots a white hot pang through my heart, chokes up my throat, scalds my eyelids with tears.  Spoken with formality, a polite request emotionally devoid.  It doesn't take the edge off.  Instead it serves a cruel reminder of G's autism, his intense social skill deficiencies yet to be mastered.  Tonight we'd been reading Christmas books, G curled with me, head resting comfortably on my arm as I read the familiar favorites.  We shared a warm emotional bond, sweet and tender.  My guard fully vulnerable, thin skinned. When I tucked him in, I knelt next to his bed and laid my head on his pillow facing his to chat quietly a few moments.

Gong!  Buzzer!  Wrong!  Not this time, Mama!  I'd hit the limit, overstepped boundaries, wore out my welcome, became a nuisance.  

G's 'Will you please go away now?' might as well have been, 'Get away from me, ugly b?#ch!'.  Shock rocked my warm tender mood, delivered sleepless hours.

choose to recall our moments of bonding just moments before, erase one tiny moment that cancelled it all out like a bad check.  As autism parents, it's what we do.  Wipe out negativity, shake off our kids' physical tantrummy-on-mummy, their fight-or-flight screeching panic attacks. We push away their harsh words so hurtful to us.  We few, the proud warriors at the ready with fierce to-the-core love and protectiveness.  Advocates.  The tightrope we balance on is a shaky one, often frayed.  We must build a tough skin; but need the raw emotionalism to recognize their struggles, teach them healthy acceptable feelings, actions and expression.  We often overthink the tightrope.  We engineer a perfect scenario only to be chased by the unknown, running precariously over a pit of snakes.  Tripping, dangling at times; we always win.  Our payoff: a squeezy hug, fleeting eye contact, connection by humor, exuberant goal realized, an offering of melty chocolate from their sweaty palm.  

As a familiar saying goes, "It's not personal, it's business."
Alrighty then.  The business of Autism.  For it truly isn't personal to autistics.  It's their business of coping, communicating when zoning into themselves is the easier preferred path.  

Tomorrow I'll create a social story to make it a teachable moment.
For myself.


Wednesday, December 7, 2011

12 Quirky Days of Christmas Autism Style







Christmas in July! 
Summer 2010, an impromptu dress up/jam session 
in the garden next to my flowering towering  hydangea.
I'm so glad N and M are in choir - instruments are NOT their strong points!  ;)   
On the 12th day of Christmas, my spectrum child gave to me…

12 Social Stories

11 Collars chewed

10 OT‘s-a-leaping

9 Potty Dances 
   
8 Lined-up Legos

7 Stims a-spinning 

6 Tics-a-twitching

5 Awesome Apps!

4 Calling Aides 

3 French fries

2 Flapping hands and

A fleeting glimpse of eye contact!


and of course lots and lots of proud mama moments, love and laughs.

Merry Quirky Christmas!


Monday, December 5, 2011

I Say Wex-ler, You Say Wac-slr

Check out this refreshing article from Scientific American about the hidden intelligence that is being overlooked in autistics.  In low-functioning, mid-functioning, verbal/nonverbal, physically impaired/non, mainstreamed or in special education classrooms.

http://www.scientificamerican.com/article.cfm?id=the-hidden-potential-of-autistic-kids

Do you have a child on the spectrum who has a penchant for patterns, rhymes, visual spatial, logic, science, equations, music, art?  As parents we see these abilities in our kids.  Schools, social activities and mainstream settings usually don't unless they're in a progressive community.  Not to say that all autistic kids are brilliant, as not all typical kids are.  But they have abilities that aren't seen, therefore they aren't given a chance to grow and nurture their gifts.  Think about how most autistics have taken to computer games, ipad apps, learning tools and communication devices.  They barely need training, it is instinctual.  What about their repetitive activities, noises or rocking movements?  

We say young children take risks of daring physical feats because they lack the fear that adults have.  They leap before they look.  I believe it's this way with many autistics.  They take leaps of thought we may not take because of preconceived ideas, logic, social mores, religious beliefs, current events, etc.  Instead they blurt out their answers, see information as black and white; because they do not have to overcome fear or mental obstacles, social phobia.
They:  See ~ React ~ Report  

Spectrum brains may "see", or experience the world around them differently.  As Temple Grandin says, "Different, not better."  But maybe it IS better.  Wouldn't it be great to think so?

Does your child or loved one on the spectrum have a splinter skill?  Do you nurture it, tap into their strength?  Do you search for practical applications for those skills so that they may become productive adults?  How about your schools - have they discovered any hidden treasures?

Back to the Scientific American article.
I LOVE this comment:
Comment #12:
Could it be that autism is merely the genetic growth and development of the human brain along its way to its next iteration?

What a fun, interesting concept to mull around.  Perhaps they are to be revered by all, not just their caregivers.  What do you think?



Wednesday, November 30, 2011

Samples for Santa and Son

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! 

Thursday, November 24, 2011

Take Time to Baste the Turkey

Hem your blessings 
with thankfulness 
so they don't unravel.  
~ Author Unknown










Love this metaphor.  
Hug your loved ones closely 
today and always. 
Happy Thanksgiving!



Yarnbombing!  
Colorful and cheerful...so amazing!  

Feast your eyes...





Wednesday, November 23, 2011

PDQ #26

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. 


PDQ #25

G wanted to make a card for his friend Conner. G's first day of school brought news from G that he'd made a new best friend, but I learned that it was not so.  It was simply another made up idea.  G probably told me because he knew/sensed that I wanted him to have a friend so much.  In reality, he plays alone, just contentedly does his own thing.  I volunteer often, and go to lunch and recess with him, so I get a good idea of his social skills in addition to teacher/aide reports.  He tolerates the other students, but spontaneous communication is slim to none.

Conner is his only friend from school.  He occasionally sits with him at lunch and runs around with him at recess.  He was in G's special needs preschool class for 1.5 years.  We've done many social activities together and they were the highest functioning students in their class.  Conner is in the other kindergarten class, which makes me sad.  I so wish he had a friend, but like I said, much of that is my projection upon him.  But, he does talk/ask about his friends and make cards for them and ask to have play dates.  He needs guided friendships that are facilitated by a teacher or mom.  I'll have to work on that and find a friend in his class to see socially. 

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's message (he smashed all the words together):
Dear Coonner
Happy Thanksgiving
I know that you like me so much
So I made you a card
From,  G


Love love love it! 

...and what says Thanksgiving better than flowers and a star?  teehee



Tuesday, November 22, 2011

PDQ# 24

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...




PDQ #23

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


Sunday, November 20, 2011

Making Sense-ory

Sensory Processing Disorder (SPD)
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.  


Thursday, November 17, 2011

Hip Hip Hooray!

I finally broke down yesterday and went to the doc.  I've had the flu, then recently my chest hurt and I saw stars when I coughed...that can't be good.  I have bronchitis, sinus infection and laryngitis which makes my voice go in and out.  I feel knocked over, but a Mom's life doesn't stop, right?  My schedule doesn't have room for rest, which the doc stressed to me about 5 times.  Not. Gonna. Happen.  

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

Cried all the way home!

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.


This news was the finest medicine ever!  
Besides laughs and hugs from my kiddos.  :)


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!!!




Tuesday, November 15, 2011

Chin Up, Volume Down

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!

Monday, November 14, 2011

G's 6!

G has serious eye contact with his birthday cake, teehee

Big bro and sis came to visit G at the hospital
My 3 Miracle Babies  

Wednesday, November 9, 2011

Birth of a Miracle

I'm tinkering with G's meds.  This 9 month pharmacology journey defines our 2011.  What a wild ride it's been.  It is SO DIFFICULT to remember that it's the meds, or lack of them that causes his loud, violent, destructive outbursts.  Holy Moley, the way he's been acting/reacting mirrors his worst behavior when I decided to wave my white flag and try meds.  We all have bruises and sore bodies. I thank heaven he only shows this wild side with us, his family.  He lets is ALL out here.  What would the poor little guy do if he couldn't?   Many items are broken.  And irritation from screeching?  By the end of the night I'm so over it that watching tv is too loud.  Silence.  And watching G sleep and smooching him after he finally falls asleep at 1am, 2am, 3am.  Where he ends up is a mystery. Wherever he lands, it's all good with me.

Meds are tricky. Some work for a bit, then stop.  Some don't play well with other meds.  Some need to be fine tuned.  I got rid of one med and shrinking dose of another.  

I've been trying to lessen the need for a booster dose of ADHD meds in the evening which keeps him awake even more than his usual night-owl tendency.  And I just don't like so many drugs going into my kid, I'd like to keep it to a minimum. I try to give him his daily dose as late as possible before school and even later on non-school days.   

10:30 am: G screeching, jumping, chewing on his shirt...

"Mom, you forgot to Give Meeeeeeeee my MEDS!

Am I dreaming?  Is it? Could it be?  Has this 9 month haul given birth to G's first glimmer of self-awareness?  A miracle moment indeed.  It could be his first baby step on the long, winding uphill path of self-regulation.  Fingers crossed! 

I feel like throwing a party.  :)


Saturday, November 5, 2011

PDQ #21

  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!!!"

Saturday, October 8, 2011

G’s Career Plan

 

Random Car Chat

G:  Sigh….I wish I had a wishing well so I could be older. wishing well

Me: Why!????!

G: So I could have a job.

Me: Wow!  What kind of job?

G: I want to work at a lib-a-rar-y.

Me: What would you do there?

G: Make books and stuff like that.

Me: Like write books or put them together? 

G: Pause…  Both.  Write books AND make them.

Thought balloon over my grinning face: Yippee! 

Our trips to the library all these years are working!  And I thought all he was interested in there was the fun special programs, puzzles, puppets, and computer games. I often have to distract him over to the book section or drag him away from the computers to get books.  He loves books, but computers just for kids are alluring.  And hey, you get to wear the cool headphones. 

G ran ahead while I got N and M situated in a teen study skills class last night.  He always zooms to the computers, looks around to see what others are playing, then checks out the interesting looking sites himself.  Hmmm…nope, not there. I felt that old instinctual panic zing through my body, quickening my step.  I found him digging intently through shelves of picture books.   He brought each carefully selected gem to a growing pile on the table.  When finished, he excitedly showed me each book.  Then he strode off purposefully, picked out a puzzle and sat down to play. He picked out dvds when he noticed me looking. 

He didn’t go to the computers to zone out for a full 35 minutes.  AMAZING.  books

Self-check out + G:  So. On. It.  Nifty and fun, but I miss the casual chatting with desk clerks.  I’m afraid when he grows up, librarians may be a distant memory.  A casualty of electronic media, instant/gotta have it now/right here/day or night/NOW.  Disposable.

Noooooooo! 

There’s a good one for your wishing well, G.

 

Tuesday, October 4, 2011

Magical Miracle Round

 

Ahhh, finally a sunny fall day with a crisp breeze blowing leaves under our crunching footsteps.  On the walk home from the bus stop, I decided to put off kids finishing homework until after our evening activities and instead sneak up to the park for some sunny fun.

merry go roundG spun around and around on the Miracle Round (merry go round), zipping across the park before we even reached to unlatch our seatbelts.  He soon grew bored of the slow parental pushing skills, and hopped down to push the little girl, working hard and grunting.  The parents saw their opportunity and backed away slowly to sit and cuddle around a cup of java on a nearby bench.  I followed suit, minus the java and cuddling partner.  My older kids were off doing their own older version of goal-oriented play, mostly chasing and screaming.  I was ready for G’s Magical Miracle Round Show.

G “allowed” his little friend to have a turn to push.  But after 2 minutes, he harrumphed and slid off, stating matter-of-factly,

“I can push better than you.” 

Those classic autism (anti)social skills in action.  Aghast, I covered my face.  I peeked through fingers when I heard no response.

The patient girl jumped on and waited for him to push.  2-way tolerance!  Yippee!  G happily pushed for several minutes, jumping on now and then to enjoy the ride himself.  I began to watch the leaves, settling back into the cold metal bench.

totterG jumped off at last and said, “C’mon!” to his little friend.  She followed him around on a few playground activities before they approached the standing Teeter-Totter of Horror.  Yes, this equipment is many times more dangerous than an old-fashioned teeter-totter, which was deemed too hazardous in most playgrounds many years ago.  It’s tons of fun, until someone gets hurt.  You can almost feel the collective cringe, hear the small gasp of breath, jaw clenching from caregivers in the park when children climb up to ride this fun monster (I mean toy).  I walked over to supervise, worried that G would jump off and send her careening down/off, interrupting her adorably huddled parents.  No worries.  The pair teetered calmly. 

The girl said, “We  have one of these, but not really one of these at my playground where I come from.” 

I asked, “Oh you don’t live here?” 

“Nope, I live all the way in (her town).” 

I laughed, thinking how a town 10 miles away can seem a lifetime of waiting in the car for a child.  In Michigan, it could take an hour, winding around lakes, parks and farms.  She then recited her address to us, which made me shudder.  This openness was both good and bad, in the realm of Stranger Danger.

prescriptionG gleefully, “Mom, this is medicine!”

??? I quizzically wondered where this random thought came from.  My brain went into hyper-G-search mode, whisking about for G translation like a scientist figuring out a formula for a teeter totter launch, considering all the variables, testing theories.  In the field, a child waiting, no calculator.

velocityMedicine = Enjoyment? 

Enjoyment = Sunshine?

Enjoyment = Park Visit?

Enjoyment = Teeter Totter? 

Enjoyment = His New Friend?

Or was it all of it?  He can be amazingly profound.  Other times, completely nonsensical.  My job was deciphering which was which, when was when, who was who.  What?   Where’ my magic wand?

Helpless, I finally asked, “You’re having fun?” 

med“Yes!” he spat out, exasperated. “She’s the same age as me. This is medicine.  Med-i-cine!”  If he knew how to spell it, he’d be spitting that out too, I’m certain.

The sweet girl looked up just as my brow crinkled and corrected, “Madison.”

Madison was medicine.  She happily played with my funny G, ignoring his differences, patiently asserting herself when necessary.

Once again, I learn from G to simplify.  I often try so hard to figure out his meaning, his motivation, his emotion, his needs…that I forget to sit back and let it work itself out.  My panic comes from years of anticipating his movement as a whirling dervish, playing offense to his meddling curiosity and scenes of a search team spreading out to find our lightning speed escapist.  With G calmer, less impulsive, I can chill a bit.  I can attempt to match, to compare, to meld his reality to mine, but why frustrate myself? 

Maybe it’s the artist, the poet, the wordsmith in me trying to stretch his words to fit a deeper meaning, a stronger insight into his inner workings.  Our autistic kids aren’t cookie cutter, in fact I believe most NT kids aren’t either.  We just try to squeeze them in where they fit, categorize them neatly – or mold them to an ideal we’ve created.  Admit it, we do it even with ourselves.  I can’t seem to find my fit, I’m always changing, evolving.  Life is too transient, disposable – to settle in and fit comfortably (or I’m AD/HD myself, teehee). 

My strong constant is my ever-present bond with my kids; our common denominator, love.

I always seem to simplify to this equation: 

Magic = Love

 

 

Wednesday, September 21, 2011

Brought to You By the Letter B

 

Scrabble_DeluxGameMultitasking fun…G and I dragged a bunch of board games to the deck so that we could enjoy the gorgeous fall day while N and M did their homework.  I was close enough to help with homework, but quiet enough to sit at the same table.  In between turns, I framed up N and M’s school pix.  G oft-times lingers to ponder random subjects, count his letters, read the words on the board, etc.  Glancing at his letters, I threw in a suggestion (or 22) as well. 

Finally, “G, WHAT are you looking for?”  grumbled impatient sis who was supposed to be doing math.

“B!”

“B-B-B-B-B-B-B-B-B-B-B-B-B-B-B-B-B-B-B-B-B-!”

mac and cheeseJust then, the oven timer beeped, creating sweet harmony with G’s semi-automatic clip of B’s.  I pranced inside to check the lavish frozen (shhhhh!) mac n’ cheese bubbling happily in the oven.  Perfect, I added a layer of cheddar jack to make a fine crust and reset the timer.  I threw on some veggies and returned outside.  N had retreated inside to escape G’s “B!”, which he continued at frenzied decibels. 

I calmly got down and maneuvered my body, my face to gaze into his, “What word are you trying to spell – I’ll help.”

“B!”, pulling away.

“What word do you need B for?”, re-connecting. 

“Bra!  B-R-A!”

“BRA-BRA-BRA-BRA-BRA-BRA-BRA-BRA-BRA-BRA!”

This sent us all into hysterics, which made G grumpy.  But it sent him into action.  He stole a B from another word on the board, “Bank” and made his word.  scrabble

“Bra!”

I don’t even bother to check if the neighbors hear anymore.  G makes himself known. 

Still giggling, I sputtered,

“How do you know how to spell bra!?!?” 

His standard reply,

“I dunno, I just do.” 

…and he walked away, bored now with his completed task.

The mystery continues. 

I can’t wait to see what today’s vocabulary word is.

 

Tuesday, September 20, 2011

I Say Dyspraxia, You Say Dysfunctional.

 

Send good karma, prayers and positive vibes...
Read the Autism Insurance Bills being voted on today in Michigan.  Type in:   414-415  bill search box to read content.

Michigan Legislature - Home

www.legislature.mi.gov

All good.  I decided to see if other votes are on the table for our humble cause.

I typed in key word "autism". 

Bill 050: Insurance; health; coverage for autism spectrum disorder, mental health, and substance abuse treatment; provide that coverage cannot be more restrictive than coverage for medical treatment. Amends 1956 PA 218 (MCL 500.100 - 500.8302) by adding sec. 3406s. 

Most adults have been touched by substance abuse at least once.  We’ve all seen it played out in movies, on uncles, neighbors, friends. It’s a grotesque, heartbreaking experience.  I’ve seen the ravages of substance abuse on family.  I’ve felt the dysfunctional environment of growing up in the shadow of addiction. I know MANY who have had/should have substance abuse treatment and wholly support that effort… no way

…but REALLY??????

Who wrote this bill –

are they on crack?

Must we be in the same bill, category? 

 

Autism = Addiction?

No comparison. 

Our kids don't choose autism.

Our kids can’t just say no!

Our kids can’t check in and dry out.

There’s no patch for autism.

Our kids can't go cold turkey.

 

I’m flaming and irked, and not from a hot flash.

 

Meanwhile, back to the song…

I say Apraxia, you say Amphetamine.

Let’s call the whole thing off.

?????? 

NO, no, no.  Whatever it takes.

Pray for the bills to pass. 

Then pass the pipe. 

 

Thursday, September 15, 2011

Rose-Colored (Sun)Glasses

 

Mama Perks

nglassesToday brought some sibling squabble irritations that exasperated me.  I dug deep to maintain cool and move on following a 5 minute “discussion” with my 12 year old, N.  Then I took some sage advice to heart.  I can’t find the actual quote it comes from, but the gist is…

When a child misbehaves, it’s not always anger or punishment he needs; but he needs a hug, kindness, attention. 

I applied this to N today and it made me feel much much better than the lecture did…without a smidgeon of guilt.  I took him on an errand while the other 2 were at an activity, instead of running off myself.  That brief trip with him to the drizzly Farmer’s Market renewed his attitude and brightened his mood.  We played a game on my phone together in the parking lot for 10 minutes, laughing and whooping over our scores.  We ran inside through the rain, shaking off drips from the downpour.  Our spirits refreshed - all smiles and sunshine.  Win-win. Psyche!

Hugs are the universal medicine.    ~Unknown

The 2 clashing sibs gave me sweet little gems to counteract their frustrating behavior. 

g busWe went to G’s Kindergarten open House last night and he talked all morning about how much fun it was.  At the bus stop, G grabbed my hand, peeked up for a split second and invited, “Come on, why don’t you come with me to school today?”  In a sweet tone, not whiny or needy or scared.  Spontaneous affection, eye contact, and a beautiful sentiment that tells me he wants ME to be with him. Triple bonus! Totally out of the blue.  A tear spiller moment.

Later, at the dinner table my husband told me my new glasses look nice (another rarity – the day I got them he didn’t notice and the change is fairly drastic).  Winking smile  I then exclaimed that I was thrilled to finally have Transitions (the type that turns into sunglasses).  I continued, “Can you believe I’m 47 (shhhh 39!) and this is the first time I treated myself to transition lenses?  I love them!”

transitionsTween N, who half the time pretends he isn’t listening and/or interested asked, “Really?!?  You mean you got them for me and M for our glasses, but didn’t get them for you? AND we have them on our sports glasses too!”   Wow, epiphany!  He realized that my kiddos really do come first.  How cool is that?  

I raised my eyebrows, “Oh yeah, I guess so.”  I guess it was a no-brainer  for them – playing outside, outdoor sports, visibility, protection, etc.  But I didn’t apply it to myself until now.  I’m outside just as much, glued to G’s side like a body guard (essentially my title), at their games, events, playing in the back yard, swimming.  I suppose I can count on slowing down the crinkle face progress as a side benefit to being able to enjoy sunny days and less eye strain.  See, I’m still justifying them for myself, aren’t I?  teehee

Thanks boys, I’m so going to focus on these charming sentiments.  I‘ll pull the memories out and hug them to my chest, my heart when I need a lift, some love or when I’m upset by misbehavin’ kiddos.  Tonight they’re at the top of the day’s  list of wonderment and love.

 

Words to live by now, before they grow, while I still can…

If I had my child to raise over again:
I'd build self-esteem first and the house later
I'd finger paint more and point the finger less
I would do less correcting and more connecting
I'd take my eyes off my watch and watch with my eyes
I would care to know less and know to care more
I'd take more hikes and fly more kites
I'd stop playing serious and seriously play
I would run through more fields and gaze at more stars
I'd do more hugging and less tugging
I'd see the oak tree in the acorn more often
I would be firm less often and affirm much more
I'd model less about the love of power
And more about the power of love.
Diane Loomans

 

Tuesday, September 13, 2011

Spread the Word to End The Word ("R" Word)

 

raymay52

 

You have to see this inspiring message.  What a powerful tribute from a loving sister.

Bravo to you, loving, creative sister!

From Dictionary.com

re·tard  [ree-tahrd]   noun

1. a slowing down, diminution, or hindrance, as in a machine.  2. Slang: Disparaging a. a mentally retarded person  b. a person who is stupid, obtuse, or ineffective in some way: a hopeless social retard.

Ashamed   I’m sad to say that I grew up when saying that word was just a common phrase, like gross, bogue, yuck, silly, funny, weird, goofy, etc.  We used it not so much as name calling, but more as a descriptive word for something we didn’t like or couldn’t understand.  I admit to slipping occasionally when I'm with a childhood friend - the old lingo gushes out. 

Now I'm hyper-aware, I catch myself:

“that’s re-....uh...ridiculous."

It's a word most people say without realizing. They surely cannot understand how they hurt people with special needs, their friends and families.

Retard Reality  Everyone should realize that disability does not discriminate....rich, poor, ugly, beautiful, fat, skinny, kind, mean, funny, sad, brown, white, old, young.  It can appear from nowhere to touch your life, consume your family. It shows no mercy, and - unlike lightning - often strikes twice, thrice and more.

Disability barges in with fists flying to assault families with tears, heartache, despair, anxiety, confusion, struggles, exhaustion, isolation.

But disability also brings along a surprise treasure chest filled with smiles, joy, wonder, delight, pride, laughter, simplicity, beauty, growth, inspiration, knowledge, depth, hope and loads of love.

 

From Dictionary.com

re·tard  /rɪˈtɑrd,ˈritɑrd [ri-tahrd]

verb (used with object)  1. to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.

verb (used without object)  2. to be delayed

Retard the R-word   With a little faith and cultivation, we can help teach others to learn the correct meaning of retard (noun) and help to retard (verb) its misuse.

Let's turn that frown upside down.

 

Please spread the word to end the word.

Make your pledge now to STOP! 

Invite your friends.

http://r-word.org/

https://www.facebook.com/EndtheWord?ref=ts&sk=wall

Catch yourself before you think/say the R-word. Use my trick - instead say, “ridiculous”.  It fits without the hurt. 

Pass it along.