Sunday, October 28, 2012

A Look Behind the Mask

I saw this note posted and shared several times on Facebook this year. I've tried to find the original poster/creator, to no avail. I wish I could thank them for creating awareness. I'm stuck in my little world of
G's issues, fears and needs and this post opened an even larger perspective to me. Considering my sizable exposure to special needs in the past several years, I have become much more tuned in to all children's behaviors, typical or other. But, on a daily basis, it's sometimes all I can do to live up to my own duties and concerns as an Autism parent, tween  and teen as well. 
How's that for Eye Contact?
I remember my older children in their baby and toddler years. I'd prep them and practice trick or treating behind doors in the house, giggling along the hallway. I let them help me pick out decorations, pumpkins and the type of candy to pass out. They watched or "helped" me decorate the house inside and out.  They picked out their costumes and wore them around the house for weeks. We went to so many Halloween parties, parades and playgroups before the big day that our displays of crafts, decorate yourself snacks, toys and goodies rivaled the Halloween night haul.  I told my husband it was to get our money's worth out of the costume, but it was to get them ready for the holiday, in all it's scary-ness. And yet, they still only lasted a few houses, if any.  My husband would bring them home crying big tears down their chubby cheeks, sputtering hysterically and reaching for the safety of "Mama". Let's face it, no matter what we try, how much we practice, Halloween is unnatural. We don't dress them in uncomfortable itchy costumes, strap masks over their ears that pull at their hair, and go for walk in the dark, nearly bedtime. However close we stand, be it the sidewalk, the steps, or the porch next to them - the only place they want to be is in your arms, or HOME. Instead we tell them to ring the bell and ask for candy with some strange words about tricks. No matter how much candy they get, it would be so much easier to give them candy from our own overflowing bowls. But tradition prevails and we work them into acceptance until they love it...usually.  
His "Scary" look
As years pass, we still go to the multitude of pre-Halloween events, for no holiday lasts but a day anymore, but a week, oftentimes a month. Children get over their fears as they see their bright plastic pumpkins fill up. They go trick or treating with whole groups of families, even get pulled like royalty in wagons, hayrides. They get over those early fears and embrace the joy, the compliments on their costumes, the spooky excitement, the spectacular decorations, the CANDY.

BUT, not all kids who look brave are. Our special needs kids react very differently to this strange holiday. His/her parents may have worked for weeks to prep them, condition their child for this frightening night with its odd customs and costumes. Each year, these parents work on the same issues as they once did with their babies, toddlers. Our kids stay stuck in those early stages or move slower into it, delayed. Therapists instruct parents: In all things - repetition, practice, patience, DE-SENSITIZE.

But...Halloween is all about senses, more than any other holiday, its' theme is designed to attack the senses, create fear. Many of our children are seized by fear and anxiety as part of their core symptoms. Many cling to safety, routine, familiar, CONTROL. Because this holiday is celebrated at night, that familiarity is gone, the safety difficult to discern. Their fear goes much deeper than typical Halloween fear. Their fear may quickly escalate to fight or flight; cause anxiety attack or full-on meltdowns, screaming, running, grasping for the familiar, needing control. For this reason, even parents of older children on the spectrum must accompany their kids and be on high alert to their body language, eye movements, tone of voice (if verbal), etc.. Our kids often don't recognize their limitations or know when to stop. We know our kids best: how to persuade them, cajole them to safety before they reach high alert. Not only would that situation be uncomfortable or embarrassing for the siblings, friends and (possibly) child - it could easily escalate to a dangerous level. My G runs blindly when he reaches a high level of anxiety or excitement. He may run into traffic, hide or run into someone or something.  The possibility for injury to him or others is high with all these factors - dark, many cords and odd placements for decorations, many walkers, wagons, cars, portable campfires, difficult visibility. It's certainly a recipe for disaster without carefully planned safety checkpoints in place.
Captain Candy in Control

Your house may be the first or only house a special needs child can find the courage to come to. We're blessed with great neighbors that we know. We skip those we don't. Because G gets spooked, he only goes to a few homes and then returns home to hand out candy, where HE is in control. Last year he made it a few short blocks, then ran as fast as he could home almost losing my speedy daughter, my husband minutes behind, out of breath and flustered. Thankfully we had walkie-talkies and a super fast sister. I shivered in fright to think what might have happened if my daughter had gone ahead with her friends earlier instead of spending the first few blocks helping G. Still, we were thrilled that he lasted as long as he did.  As soon as he arrived home he drew a big labored breath, let it out in a rush as let me hug him briefly, asking about handing out candy all the while. He put down his orange bucket, threw off his costume, and took post in front of the door. He was in control, Captain Candy in Control.

I've come up with a few extra ideas I'll put into place this year. Many are practices we've always done like flashlights, phones, etc., but this list will keep it all together.Because in all areas, as he ages and gets more verbal, taller, smarter - most people (and even us) take him at face value, as he looks or talks. He often fools others into thinking he has it all together. Don't get me wrong, this is exactly what my long hours of research, working with him, getting him extra help, and talking talking talking to him have paid off with (and won't cease any time soon). I'm very proud of this kiddo and what he's moved past. But, we need these items in place for that reason. We cannot take anything about his safety for chance.  Underneath, he's still ridden with anxiety and fight-or-flight responses to stress and fear.  During these times, he loses language and shrieks and runs, getting physical with anything willfully blocking his path. This is exactly what I want in a stranger-danger situation, but Halloween not so much.  His shrieks will fit right in to the neighborhood din, I'm afraid.

Day(s) Before:

  • Plan maps and gather all supplies, laying the path for a smooth Halloween day
  • Let G write and check off items on To-Do List
  • Ask G if he wants to go Trick or Treating, and how long he thinks
  • Plan route for trick or treating
  • Let G draw the Route Map with street names
  • Label the homes with neighbor's names and let him decide if he wants to go to unknown neighbors
  • Draw in Safe Points at close friends' home where he can go if he gets lost or scared
  • Pass out copies of map to whole family, whether they'll be with him or not
  • Decide if he'll accompany other groups of friends walking
  • Phones/walkie-talkies* for all
  • Flashlights for all
  • Fresh/charged batteries for above
  • Wear safety reflectors
  • Carry a whistle around his neck in case he gets lost or scared and walkie-talkie doesn't work
  • Carry whistle of another tune for Dad to for G to locate**
  • Ask G where he wants Dad to stand while he goes to porches 
  • Have Dad ask him every 15 minutes if he wants to continue to avoid overdoing it and meltdowns mid-route
  • If  Dad notices G is weary but he denies it, remind him that he can hand out candy at home or sort his candy
  • Have fun!

The Big Haul, time to sort!
*G doesn't have a cell phone yet, but did put it on his short list for his upcoming 7th birthday containing only one other item. :)  Sorry, not gonna happen, cutie.

** Several items overlap with redundancy. I've found that if I give G one way to communicate, he may not remember to use it. If I give him 2-3, he may find the right method that suits him. Example: If he's running, he may use the whistle instead of trying to figure out the walkie-talkie.

Pumpkin-Carving Day 2011 with DMUM,
an amazing Autism Treatment Fundraising group of University of Michigan Students

Monday, October 22, 2012

One Step Forward, Two Steps Back

Stress by Numbers: The Quirky Report
This marvelous dance of life gets mighty frustrating 

I love that this sign goes with 
my cha-cha motto

Employment stress:
5,000 steps forward, 500 steps back
1 step forward, 500 steps back x 1,000
Weight loss  YoYo Struggles:
5,000 steps forward, 2,500 steps back x 100
Infertility Issues: 
one step forward, 1,000 steps back
1,000,000,000 forward x 2, 0 steps back
Dysfunctional Extended Family Conflict: 
1,000 steps forward, 1,000,000 steps back
Friends (Chosen Family) Support: 
100,000 steps forward, 1,000 steps back
Marital Strife:
1,000 steps forward, 5,000 steps back
1,000 steps forward, 500 steps back
Autism Acceptance: 
25,000 steps forward, 15,000 steps back
Autism Coping: 
50,000 steps forward,  100,000 steps back
Autism Therapy: 
100,000 steps forward, 25,000 steps back
Autism Advocacy: 
5,000 steps forward, 1,000,000 steps back
Autism Life Lessons:
1,000,000 steps forward, 0 steps back

...and so on,  You get the idea. Not a walk in the park.
Just like everyone else, we're each fighting our own battles.

I'm surely glad that I'm not 
a mathematician.
I'd be completely depressed at the sum total of back steps. 
Then again, maybe not. 
I try my best not to dwell 
on subtractions, 
focus only on additions.

Life lesson: 
Step out of your box.
Go forward. 
Take baby steps.
Take giant steps 
when you're up to it. 
Accept that no one knows what you'll step into until you do.
Keep dancing...
turn up the volume, kick off your shoes, sing loudly, laugh, dance!
Let it all out

Don't tally your problems. 
Count your lessons.  Learn. 
 Press onward.
Your journey, your strength, is what counts.


These cowboys look like the're having a blast!

I'm not a big country music fan, but this sure is a romantic idea to with your sweetie. :)

Thursday, October 4, 2012

Quiver and Quake

I'm feeling proud of my 13 year old for telling the truth about an extremely poor choice.  While I'm ashamed, I'm proud of his courage for facing authority and consequences on his own.  
I'm quite sure his voice was shaking.

Tuesday, September 18, 2012

Artsy Autsy

I'm going to art class today! 
(with a bunch of 6 year old's) 

I'm positively thrilled to be back helping out in the school art room after a 3 year G-induced hiatus. I worked for years volunteering in N and M's art classes.  We had to stop participating when G began pulling paints, paintbrushes and paintrush-cleaning water cups, chalk, and other fine messes onto his lap or the floor.  From his stroller.  In the middle of the aisle.  He'd work at scooting/pulling his stroller over to a table and go from there.  

Quick as a flash.  

Before that at 2, he was harmless entertainment.  The students loved to give him items simply to watch him throw them across the room, cracking himself up. Tirelessly, over and over.  The art teacher was so incredibly patient.  Thank goodness G was adorable with his blonde ringlets.  Those little curls saved us from being booted out of the art room, saved my sanity and let me get some creative input.  Saved by the curls.

After that, I became Craft Mama for a few mom's clubs I was in.  My thinking was that if I involved G, he'd remain engaged. My kids would make examples of the crafts the day before our craft days, and I had notions that he'd help me get needed supplies together.  We all know how that went as an undiagnosed, untreated ADHD autistic kiddo.  He'd run all over the facility, out into the parking lot, the road, etc.  I had to get assistants to take turns watching him and helping the children in the group. I could count on a few minutes at the snack table, as he'd shove 14 cookies, 3 helpings of pretzels, 76 goldfish and 3 juice boxes down.  And a banana that he stole from a baby's hands. That was about it.  I began bringing games and activities to craft days, hoping he'd play instead.  Nope, that sensory beast of burden  wouldn't let him relax, engage.  It was fight or flight all the way, which led to my feelings of the same afterwards.  Most afternoons I'd cry on the way home and pray that just once, he'd take a nap and let me have a break after we got home.  Never happened.   

I'm thrilled to report that after diagnosis and treatment, G occasionally gets a strong focus (oh, that beautiful word: f-o-c-u-s) on creativity. He draws from memory quite well. I was blown away when at 5, he drew items in a plan view, all sides of an object laid out in a flat drawing.  Think fold-up box on a piece of cardstock, a template...

Obviously not this detailed and no fold lines, but he'd draw all sides of an object, house, car, toy, etc.  So interesting!

Now he's in his first school art class. I get to help with his 1st grade class - all year - how cool is that?

My favorite lesson from years past as art room helper and mom's club craft mom...  

Kids often get uptight when their project isn't exactly like the teacher's example.  
They cry:
"I messed up!"  
"I can't do it"
"Mine doesn't look like that at all!"
"I want to do it over!"
This isn't working!"
"I quit!"

I guided mostly; helped if it was truly needed, especially in technique; or if there were tears, tantrums.

my favorite message to relay to children about art is:
"There are no mistakes in art.  It's all beautiful." I assure with a smile. 
This probably doesn't fit with the elementary curriculum, but it's true. I haven't been fired for sharing this doctrine, and I was invited back, so... you do the math.  Or the art, rather.

In the professional creative world, they're often called "happy mistakes". Often the coolest visuals are unintended, mistakes.
Not fussy, contrived or over-thought.

Just as in life, there are few mistakes that can't be fixed.  Many don't need fixing. The path we follow is full of bumps and drips, and squiggles that take us right to the place we need to be. 
Original, unique, perfect for us.

I'm getting a little lofty for 1st grade art class now, aren't I?  I'd better tone it down.  

Should I skip the beret?

Wednesday, August 1, 2012

Data LamBasted

Here's a sure sign that your name is on a random database with really bad information.  This came for my husband today...and his birthday was 3 months ago.  Teehee.

It's the thought that counts, right?

Friday, May 11, 2012

I'm All Ears, Honey

Van Gogh's Ear 1888
"Scooter, turn the volume down." 

"I can't!"

"Why not?"

"Because this cereal."


"This cereal is too loud.  It makes it hard to hear!"

Alrighty then. This I can understand. Even we mere mortals with typical sensory processing can relate. Funny how he appears deaf when I call out to him at times, lost in his own world. Strange how he talks so loudly that everyone turns to stare, yet crunchy cereal chewing overtakes his ability to hear Spongebob 5 feet away. 

Scooter's sensory issues are a moving target.  I never know how he'll react. Even if I followed him around with a notebook - which I do in my head anyway - I'd never discover a pattern, be able to predict his needs.  Just when I think I've got him figured out, he switches it up on me.

Scooter was truly bestowed upon me to keep me on my toes. I love to dance to a funky beat; but I'd love to be able to choose my own songs, tempo, bass, treble, balance.
Volume. Pitch. Harmony.  

My senses are hyper-focused on your every move, kiddo.
Sensory Assimilation.

Tuesday, May 8, 2012

Easy Cheesy

See recipes below...

"I can't find the Sprinkle Cheese!"

Our newly dubbed Sprinkle Cheese
You mean the co-jack, orange and white cheese? We don't have any."

Rooting around the fridge, I found his absolute fave smoked gouda. 

We fight over this in our home. 
Thank goodness for
Costco-sized hunks of this delicacy.
"Mom, you're a genius!" 

Wow, that was easy!

Today is going to be a great day.  :~D

Rainbow cake recipes - I just may have to make these!

Rainbow cake in a jar - awesome teacher/therapist gift!

Monday, May 7, 2012

Superpowers, Defined

Read this heartwarming post from a gem of a little sister. 
My Brother Has Real Superpowers | hereirawr
I've shared books, classes, support groups and constant reminders with my older children in helping them to understand and cope with their little brother's autism (etc.).  I know I'll share this post too.  I've recently begun searching for just the right book to open the door of awareness and hope for my special Scooter.  I don't think he has awareness yet of his differences, despite my openness and many attempts to explain his autism to him both casually and formally.  I think the visual and tactile sensory input from a book, app, or video may help him to "see" himself. 
I'd love suggestions on methodology or recommendations on books or other media.  He needs to be aware before first grade.  It will be my goal for the summer.  He needs to know that he is not alone in his struggles, differences,and above all- superpowers.

Friday, April 27, 2012

Cannibals at Dollar Tree

Scooter's cannibalized child's rhyme:

This little piggie went to Dollar Tree
This little piggie stayed home
This little piggie ate some ham
This little piggie got none
and this little piggie
played wii wii wii all day long!

Monday, April 16, 2012

Expressive #&?#@%+! Language

I heard a loud "whoosh" of cereal from the kitchen. Then, "Shit!"  Scooter!  At least he's using the word in proper context.
I found Scooter trying to get rid of the evidence as I came in.  Yuck - eating off the floor.
15 minutes later he was lapping at his leftover cereal milk like a kitty.
Yup, these are the proud moments I live for. 


Heading out the door to baseball practice...
"Scooter, can you carry all that gear?"

Floor Cake 1962
it's a
of a cake!"

I've found no 
clearcut explanation 
for this idiom which 
Scooter made his own.  

Here are some 
educated guesses:
Pastry Case I, 1961-2

Sunday, April 15, 2012

Accent-uate the Positive

Thirteen year old Nickerdoodle and I made a retail return recently. The customer service clerk was blatantly effeminate. As we walked away N asked me,
"What kind of "accent" was that?"

It took me a second to process, then I replied, 

N professed,
"Oh, I wondered because I've heard it before."

It was difficult to stifle my giggle, but I'm so glad I did.  He was earnest in his question and I'm glad he asked me so that I could use it as a learning moment to accept everyone as they are.  I offered him examples that he's aware of: friends and family we love who happen to be gay.  

Kids just never cease to amaze me. 

I'm a supporter of gay rights.  And not a closet supporter either.  From the time I was a kid, I have never been able to understand attacks upon the gay community.  There are so many qualities that make up a human being... by the time I get through with all the things that I really admire about people, what they do with their private parts is probably so low on the list that it is irrelevant.  
~Paul Newman

Oh Mr. Blue Eyes Newman. So wise, so beautiful.

Saturday, April 14, 2012

A Slider

After his 1st baseball practice of the season, we headed to the school playground so Scooter could play a bit.  As he climbed one of the playground structures I asked,
"What's in your pocket?"

He casually responded,
"That's my cup.  
It slid around there."

That explains the frustrated boy grumbling and shifting around in the backseat on the way to practice.

Note to self:
Remind G to keep it securely in the provided pocket.  :)

Friday, April 13, 2012

Waste Wonders

"What is poop made out of?" I hear wafting out of the bathroom, echo-ey and distant.  

Hmmm.  "All of your food that you eat comes out of your body so that you..."

"Oh, I know!  Vegetables!"  Scooter interrupts.  "Lots and lots of vegetables."

Ok, that works.

Musee' D'Quirkay

At this point in my decor, I shudder.  Sometime with laughter, mostly with resignation.  This is what we are, take it or go somewhere else.  With all due respect of course.
Our house is decorated in Early Autism style.  Prominent feautes include: visual cues, signs and charts, mini tramps, overstuffed pillows to jump in/smash into, therapy balls, crafts/sensory buffet activities. Television and video games take front and center stage for family/stim time.  Early Century Obstacle Course creates a playful, versatile mood.  Peeled wallpaper and random holes in the wall accentuate the active energetic feel throughout the home.
My children have paired my eclectic style with Pop Locker.  I'm considering lockers in our foyer so that we can make it a living style.  No sense covering it up, highlight it, I say!  Our bedrooms are each topped off with the original american favorite, late Laundryism.  This style flourishes in most households, and is always a work-in-progress.

We also have evolving installation art.   You may see lego structures, train configurations, unique games, forts built.  Many collections are seen lined up in precisely engineered formations.  We also have a large showing of early and mid arts and crafts, mostly in expressionism style.

What's your Decor???

Check out another mom's look at home decor d'Autism:

Saturday, April 7, 2012

Sensory Buffet for Spring Break

While other families head for sunny, thrilling advetures on spring break, we found our little corner of paradise 2 hours from home.  Extenuating circumstances threatened to extinguish our hopeful retreat, but we finally made it.  We enjoyed our goofy private time in an impressive sleek new hotel, free courtesy of hotel points from business trips.  Will update with photos, details and review when I get a chance.

Simon Sez: I love my 1 in 54!,521158944
For those of you in a non-autism world: this has been a landmark couple of weeks for Autism.  Stunning new study results, new medical coverage voting hot button - all surrounding the convenient World Autism Awareness Day April 2nd.  April itself it Autism Awareness month.  The CDC reported new findings on the prevalence of autism:
1 in 88 
1 in 54 boys

I was thrilled to get the chance to pass through the tail end of  Catherine Lord's extraordinary works at University of Michigan's Autism Center.  I hope that our strange/sci-fi exams and technology they indulged us in and day long adventure helps to shed some light on a trend or rule something out.  It's all about the #'s of course.,521386340We took part in the Simons Simplex study, with samples taken at a few prominent universities studying our favorite subject, our "A" word.  Near and dear to someone reading this, likely.  Autism genetic+ study, behavioral, all-possible records they can get, psyche/IQ fresh assessments /reports, parental forms in the dozens of pages for each booklet (about 10-15 on average).  Added to it were impressive 3D facial mapping for Scooter, measured our feet via gazillion different angles, etc.  We ate gigantic breakfast lunches at Angelo's across from UM hospital, home of the famed cinnamon french toast.  Got it, of course!  Nickerdoodle was in heaven.  They really put us through the workout at the last part: we traversed the entire hospital (it seemed) partly outside on a pouring gloom-rainy day to give numerous vials of blood each. We passed physiology labs and smelled formaldehyde and all. Passed bright creative young minds with their futures full on forward. College town home town energy.  What's not to love?  

I'm so thrilled to try anything to advance this soaring epidemic.  It gives me a shiver, terrifies me to think of our children being affected by something under our eyes.  We can't give into this madness!  I implore all to forge ahead to learn as much as we can.  Spread the word and share the awareness signs.  1 in 54 boys is just not a good direction to take this in.  1 in 88 population.  Available on every news source last week, when my magnificent Michigan got Autism Medical Coverage bills passed. Woot!  If this works well is yet to be seen.  Immediate to be felt as all touched as a boon, a tiny feather in our colorful morphing spectral cap.  Forward, just keep swimming as Dory says.  Superb, sublimely simple quote I love to use often.

Balance the bad news with the good news.  I'm really hoping that less families must question and seek help for ASD Autism Spectrum family support.  To often, families like mine and so many others are shoved aside; not claimed or paid by any means.  Left to stumble through the confusion, shame; stress on marriage, finance, health.  Without a doubt a mammoth strain on family infrastructure.  
is a complex 
(ie: nervous system)
This is not psychology, 
but mind/body processing 
and re-routing synapses.  
We can help our kiddos to function. 

Early Intervention is 
Don't wait.  

Frankly, I'm fascinated, 
saddened, angered 
at Autism's upward 

Danger Will Robinson!  
(Spoken in my mind in G's adorable 
speech impediment.)

I'd like to think someday soon we'll look back on this scare with the sense of "chagrin" that we could have been entirely ignorant of some seemingly innocuous additive or gene play that was causing our colossal calamity.

IAN Community has become a processing referral center for autism research.  I participated in he wandering/elopement study because I was surprised to find it a common issue.  I'd never heard about wandering and bolting into traffic like Scooter did.  I was relieved that it wasn't intellectual, but sensory-induced.  Terrifying stats on their results: half of autism spectrum children wander in public spaces.  

Best of luck and prayers to the global geniuses/researchers.
Parents and caregivers. 
Power to you, to us all.

Send any interesting studies my way.  I'm in, we're in.

Always seeking.
Autism pique-ing.

Wednesday, April 4, 2012

Tick-Tock Tics

Microwave countdown.  Always a HUGE hit for Scooter Boy.  Not with his big bro, who's been sick with feverish flu  on his spring break, BOO! Nickerdoodle has been grumpy and Scooter's counting has gotten on his last nerve these days of cooped-up-ness.  Scooter has taken it to heart and stifled his counting.  He sat watching the microwave silently, even though his brother wasn't in the kitchen.


Whimper, whimper.  

"I just can't get the numbers out of my head."

No explanation needed.  I grabbed his Kindle Fire that I haven't yet mastered, and searched out Countdown and Stop Watch apps.  This will help our lives immensely.  My Scooter asks about time incessantly: how long until, how long will it take.  How many seconds is the standard in the car.  Long trips test my decades-old triple+ place value math-in-my-head skills.  I'll need to show him a calculator app to track his own seconds.

He said in an incredulous voice later, "I can't believe it.  My own countdown app.  I love it."  
He could not have been happier if I'd given him a winning MegaMillions $640 mil ticket.  Ok, exaggeration...but you get it if you have an OCD kiddo.

Melt. My. Heart.  I love it too, my sweetiepie.  I've been planning to search it out for awhile, but always get sucked into finding games for him instead.  Go figure.

I'm incredibly impressed that Scooter's beginning to verbalize his anxiety and know what he needs.  My teen doesn't know that skill; hey I don't some days (other days I say it a wee bit too loudly).  ;O  We've come soooooo far.  So glad to find something to put your order on our busy world, in your language.  In fact, everyone who jumps in our car will be happier.  ;D

I'll update later with the winner that works best for the counting OCD behavior.  

Awareness Inspiration

Christopher Robin to Winnie the Pooh ~A.A. Milne

I needed a bit of a soul soother tonight. In searching through my cache of personal inspiration files, I found this poem.  So perfect for tonight.  We speak a common language of mothering our special needs kiddos.  I hope this gem finds and warms another's heart as it has mine.  
Thank you you April Vernon, I look forward to exploring your blog further.

Link to April Vernon's Blog

  April Vernon wrote an inspiring article about her experience as new mom of sweet down syndrome son, Levi.  She didn't wait for answers, she forged ahead and got early intervention.  

Get inspired, do the best you can, special needs parents.  
Remember to:

Put on your own 
oxygen mask

Our kids are counting on us.

Sunday, April 1, 2012

April Fool's!

Originally published April 1, 2012. 
I'm waaaaay past sarcasm. Proactive activity rules my world, kids still rock my world.

Guess what?  April Fool's to us!  Scooter isn't autistic after all!  ;~/   I'd like to share the fantastic news with some of those who helped us along our terrifying journey of discovery and knowledge.

Dear award-winning pediatrican group in a prominent college town, 
Thank you for holding my hand with warmth and concern when my son was young and I questioned his development appointment after appointment.  It turns out all 6 of you were right!  He really is just an active boy who will settle down in time. Boys do develop slower than girls, especially in speech and behavior.  His motor skills would strengthen by doing the 2 basic activities you mentioned. And yes, he did look at you briefly when you said his name! I understand your refusal to do further testing to promote early intervention.  Waiting until his rapid developmental toddler years flushed out his worrisome behaviors was a  much better approach.  I tried not to read all that scary information on the internet that angers you so.  I know that if it was you you'd just sit around and wait for the experts to inform you of your child's troubles.  Boys don't communicate as well and often take risks.  
I guess I was just paranoid because from day one of my pregnancy your local sister ob/gyn group warned me nonstop about the high risks associated with older 40+ pregnant woman.  All those statistics, articles, lectures were wrong about the dramatic increase of birth defects with older mothers.  I'm so glad that I didn't let them perform all those intrusive, risky tests.  The precautions I took coming in twice weekly to monitor his development must have worked, so really - why bother checking his performance after birth?
I also appreciate how you ignored the way Scooter always ran up and down your hallway, opening doors to see other patients.  He's really just a caring soul who wanted to see why the babies were crying.  All those babies in the waiting room must have been hungry or crabby when he poked their eyes or took off their little caps before I could reach him.  He is a bright curious boy.  I tried to console the children that he took toys and trucks from, and unthinkingly pushed out of the way from his play routine - it must have been their nap time. Anyway, I just wanted to offer my sincerest gratitude for placating me and offering the finiest in quality pediatric healthcare during my difficult time as a new parent.

Dear numerous pediatric psychiatrists, psychologists that I contacted via phone,
Like our pediatrician group, your shared the belief that children really don't need evaluating until they are kindergarten age.  I appreciate you discouraging me from my worry by giving me prices and breakdowns of the many appointments we'd need.  It helped me to realize that despite the professional directives advocating for early intervention, most children don't get evaluated until they pass the stages of development that could be subject to varied degrees of normal.  Each of his behaviors could be attributed to growth stages.  All kids go through stages that appear unusual, but of course I'd forgotten in the 5 years since my other 2 children were babies.  I considered listening to your advice, but finally had to set my worries to rest and get him evaluated after he lost his speech and started punching and kicking me, then his big sister.  And of course there was the running into the street or parking lot the hundreds of times, and getting lost in public.  But of course you knew, because I'd told you all of these concerns.
What you didn't tell me was that each of these behaviors was listed in the standardized ADOS Autism Screening test.  In fact, in the huge hours-long, 100+ question booklet interview, Scooter had 3 ASD behaviors that didn't apply and that he didn't do.  So he must not be ASD, simply developing differently or perhaps had some sensory and communication issues.  

Dear strangers, well-meaning friends and relatives,
Thanks for your patience with a paranoid mom and her active son.  It turns out he is just like his dad's side of the family who are hyperactive, never-sit-still kind of go-getters.  And like I heard so often, Einstein didn't talk until he was 4, or was it 6?  In fact, I have read statistics on how many autistics are brilliant, savant-like geniuses like RainMan.  Gosh I hope we're in that 10%.  Yup, that's all.
Thanks to all who pulled together at group activities and took care of my other kids while I frantically chased Scooter.  You have no idea what a comfort it was to me to know my other kids were safe and having fun when you stepped in.  Thanks for making it a joke to him by asking, "Are you hiding from your mom again?" with a grin.  I loved chasing him and needed the exercise of course.  Oh how I laughed and laughed when so many suggested an invisible fence with a handheld zapper for him, I don't know WHY they haven't invented it yet.  Or wait, isn't that a Tazer?
I felt wonderful knowing I had your support when discussing his issues brought stories of your  children's similar mischievous escapades, or rolled eyes when I got too worked up/choked up, smiling knowingly at each other as I blew things out of proportion.  Labelled an over-sensitive Drama Mama.  I didn't need a friendly hug, I needed to see that "all families have their issues".  It helped to give me a reality check!  My older two children totally spoiled me because they were easy babies, toddlers, preschoolers.  I finally got a child who wasn't a perfectly behaved angel!  Oh, so this is how parenting is supposed to be.  Besides, as many of you told me: as my first, my only biological child, I was more prone to worry and search for problems, to care more about his development.  He was my only "real" child, even though we adopted our others at birth, it simply wasn't the same.  I couldn't possibly adore them as my own.*
*Nickerdoodle and Chickie: Oh, how very, very much I do adore every moment of your lives, my beautiful gifts from God! You are all my sunshine and reasons for my joy!  G is our "bonus round". after a perfectly complete family.  <3  
I especially want to thank the close friend who helped me one day after my teary, breathless, frantic frightened outpouring about Scooter's frustrating behaviors, screeching cries, roughness and non-stop destruction.  It helped me so much when you matter-of-factly told me, "Well, he's not a monster!"  It was a great wake up call because I could have gone down the path of mistakenly thinking he was. Duh. Like I really give out those vibes in my weary desperation. I love friends who understand. To her benefit, I don't complain to NT parents much. She probably got smacked with too much reality.

Dear Christian Preschool Teachers,  
Thanks so much for your kind, patient ways with my beloved son.  I realize he had potty issues and he would pee or poop daily while in your class.  I thank you for not wanting to take part in positive supports because he needed to learn like everyone else and was supposed to before entering your school.  We really don't know why he took a backslide under your tender Christian care.  I loved hanging around to wait for your call so that I could change him, with you tsk-tsking and reminding me to take his soiled diapers with me (like I ever would leave them?), in front of other parents.  Your frank approach was just what I needed, and what my special needs son needed.  
I particularly appreciated the way you finally called in an exasperated tone and asked me to meet formally.  I was certain that this time when I asked if he was kicked out you'd say YES! instead of the usual, "not yet" with a smug look.  Your no-holds-barred approach was helpful.  It was great to know that you'd all gotten together to discuss his problems at length without me.  The itemized list you recited without pause for me to question, to understand, to digest - just perfect and very helpful that it was scrawled on a scrap of paper so that I couldn't review it later when I wasn't under duress.  I knew that you had a strict timeline of 10 minutes to educate me on my son.  I was grateful when my tears flowed that you yelled out from your seat through the open door for someone to bring Mrs. Perky some tissues, disturbing the quiet classroom.  I really didn't want comfort or kind words, it would only make me weep and you instinctively knew this somehow.  It was a bit embarrassing to emerge teary and blotchy at pick up time, with questioning stares.  But, it did get Scooter to recognize my tears and sadness, a social skill that he usually doesn't have.  He even offered me tissues as I sobbed in the parking lot.   

April Fool's!  We wear our Autism Awareness with pride and love.  My goal is to spread awareness so that others don't have these hurtful, terrifying experiences.  Parenting is difficult enough.  Autism is over the top.  Trust yourself, facts/statistics/warning signs, know your children, and 

Don't ignore your instincts!

I have so many other helpful individuals/professionals to sarcastially "thank", but I must go.  I need to purchase my blue light to proudly display in my porch lights on April 2.  I need to get back to my positive works promoting awareness, acceptance and support for families affected by autism.   I need to nurture our relationships with caring friends, relatives and professionals who have helped prop us up in this journey.  I need to pull my family close and proclaim a GH, where we all huddle together in a GROUP HUG!

Monday, March 26, 2012

Processing Trouble

"Mom, can I have a zip?" 

"Sure, are you having trouble with your pants?"  Bending down.

"NO!  I want a ZIP!"  Shooing my hand away.

"Where?"   Looking him over.

"There!"  Pointing to table.

???  Scrunchy confused face.

"There!  I want a zip!  A zip, a zip, a ZIP!"

He walked over, grabbed my Coke Zero, and opened it.  As I began to say no, it hit me over the head.  He wants a "sip" of my pop!

Duh.  Mom has processing issues. 

Tuesday, February 28, 2012

Tears of Joy for My Boy

As I've realized many times before in this autism warp, we forget what we're missing until it knocks us over the head.  Scooter had a milestone moment today, one that I had given up to autism puzzle, to prayer, to hope.  

He and his big bro Nickerdoodle were taunting each other with typical brotherly love such as, "He won't share!"  "He said I'm a monster!"  He won't let me be the monster" "He said I could have a turn and then he wouldn't and that's when I came in here and then he tripped me and wouldn't give me the remote." 

Followed by my random response, "Be nice, work it out, take turns, remember to set a good example - both of you!"  Lather. Rinse. Repeat until they play nice or one of us has meltdown.

Today Nickerdoodle countered an argument with a remark towards Scooter,"You don't even know how it works."
We looked over to Scooter standing there with a full on frown, quivering bottom lip (Awwwwww!) and tears welling up in his eyes.  Sounds simple, typical.  It was, but not typical Scooter.
While this may not sound extraordinary to most parents, it blew me out of the water!  Simultaneously, Chickie and I ran to him and hugged him.  We both knew that this was not a typical Scooter reaction.  I'm not sure she fully "got" the moment, but she said that she knew he didn't get that sad face cry that way.  

What I saw, for the first time: 
  • Scooter's feelings got hurt
  • This means he's relating closely enough to get the embarassed feeling that personal interaction brings on
  • He was disappointed without
    • frustration
    • anger
    • aggression
    • screeching
    • whining
    • checking out 
    • pretending it didn't happen
  • His response was typical and socially acceptable

What that means to HIM:
He's progressing in
  • logic and cause/effect
  • body awareness
  • interpersonal dynamics
  • emotion recognition: expression, tone of voice, 
  • anger management
  • self regulation
  • appropriate reaction/response

What this means to me:
Communication may become simpler
Cause/Effect logic may be possible
Hope for self awareness, self regulation, self-control, emotions, friends, teamwork, middle school, high school, college, employment, love, marriage, grandkids, eeek!  Too far. ... teehee

I could go into all the Psychobabble, OT speak, Social Skills, Speech lingo to analyze the spit out of it, ... (yawn)
...suffice it to say, I've never felt more happy to see anyone unhappy!  

We've been seeing some incredibly positive strides lately.  I'm proud always.  
The dream, the hope that all mothers have, is for her child to have love in their life.  We are a huggy family who showers each other with love.  I want HIM to feel love, feel the emotion.  I want
HIM to be able to figure out emotions.  I want him to be expressive and sincere.  I've imagined a future of him saying things, doing things - going through the motions for relationships because rote responses that we and society drill into him.  I'd love for his emotional life to be free and sincere. It just may be.

But I suppose I'm getting ahead of myself, and him.  See what I've made of a few tears and a trembling lip?  A swelled proud, bursting heart full of hope for my Scooter.  He's got two wonderful behavior models with Chickie and Nickerdodle.  

Wednesday, February 22, 2012

Expression: Let's Get to the Bottom of This

Note to Scooter's Social Skills therapist: 

Can we discuss how to stop him* 
from publicly announcing, 

"Smuuuushy butt!" 
as he pokes mine?  
*use positive supports for redirection, at least to someone else's behind. 
NO! I will not pose for a social story picture.  
Teehee! :)

I  suppose I should be relieved at his choice of adjectives.  
Gotta love Expressive Language!

Follow-up note to self:  

Double up on 
Buns of Steel 

sense of humor
seek therapy immediately.

Tuesday, January 31, 2012



On a snowy afternoon, Scooter counted down for a game.  In his carefully modulated tone,
"One sippy
Two sippy 
Three Sippy 

I was sure of his words, but couldn't figure out his meaning.  Chickie and I checked each other's faces to see if we "got it".  Nope.  No clue.  Next game, I asked him to count down again, giving Chickie the "Ready?  Pay attention." look.

Scooter began,
"One sippy                                                     
Two sippy..."

"Wait!" I interrupted.  "What are you saying? One sippy???  Count again sweetie."

Exasperated, Scooter enunciated each word and spoke  s  l  o  w  l  y.
"One and a sippy
Two and a sippy
Three and a sippy!"

Chickie and I stared at him, then shifted to each other for a few bewildered seconds.  Click!  Her light bulb went off...
Chickie Walks On Water (cool shot, huh?)

One Mississippi,
Two Mississippi
Three Mississippi!!!"


"You say Mississippi after the numbers to count slower," Chickie explained.

I love it when the kids explain something to me that I know from my own childhood.  I try act like I'm amazed to be filled in, but often my grin gives me away.  I'm so transparent.

Chickie's the finest G-translator besides me.  But even better, she's our G-Whisperer.  They adore each other and it warms my heart to the core.  She's always shared a sweet bond with NickerDoodle.  They're best friends.  She's the glue that holds these boys of ours together...and frequently me.  We're blessed.  I'd be lost without my incredible Chickie.  Love love love her!

Kiddos Monkeying Around at Their Favorite Playground

Wig Out - A Family Favorite Game
Our family "go-to" game.  Easy, portable, all ages.  Super fast racing matching grabbing silly fun game.
Read my review:

Gamewright has tons of fun, creative award winning games.

Wednesday, January 25, 2012

Door to the Floor

Is there anything so difficult as seeing your child in pain?

Nickerdoodle got blasted by a heavy steel door after school today, knocked his sturdy 110 lb. athletic frame to the floor.  His toe, arm and shoulder are bruised and swollen, very sore.  I'm betting his backside will be hurting tomorrow from falling on his tailbone.  He really got nailed bad.  I' m so grateful it wasn't his head, and luckily it was his left side and he's right handed.

The kids in the classroom he was passing were probably excited to get out because they have half days for exam week and threw open the door.  So now besides the stress of exams, my Doodle is in pain.  He's such a good natured kid though.  He was pleasant and polite, getting up to get things tonight when I easily could have gotten them for him.

At first when he got home I hugged him while he explained what happened.  I thoroughly checked him out, gave him Motrin for the swelling and pain.  Then I set him in his Dad's recliner with his foot raised.  Mr. Creative Doodle fashioned an ice pack around his toe/foot by taping it in place after it kept falling off.  It stayed on all afternoon!   I covered him with a blanket and fluffed a pillow, pretending I was a nurse to make him giggle.  I gave him choices for lunch and movie.  He ate popcorn, m & m's and blue raspberry pop (good for the soul) for lunch and we all watched Chickie's favorite flick, "Dunston Checks In".  We all love it, slapstick mayhem with an orangutan, art deco period decor for me - what could be better?  The kids love when I play the funny parts over and over...I've been known to rewind 10 x and more, everyone cracking up more each time (drives my husband crazy, but he wasn't home).  Doodle enjoyed a few requests for ice or more popcorn, asking with a funny smirk, sending Chickie or me to wait on him. Hey, he's normal - who doesn't love that?  Then he took a long nap but got right back into studying for the night.  Great responsible kid.

This brings up another important point - he should have gone to a teacher, to the office or called me for help - a lesson I now have taught them - after his accident.  But these things don't occur to us until they happen.  In normal cirumstances, his next hour teacher would notice and send him to the office.  He was likely embarrassed and just wanted to get to the bus, steely tunnel vision.  He probably didn't let himself start to realize his pain until he was situated and on his way home.  By the time he walked through our door though, he'd let down his guard and fully let his pain flow.  To think he had to walk home from the bus stop on his swollen, bleeding toe.  Ouch

For me, one of the most moving experiences as a parent is having my child come rushing to me for a comforting "Mama Hug".  Though I loathe to see my children in pain or sad, I love the reminder that I'm needed, that my care helps.  So touching, especially from an almost-teen who often pretends he doesn't hear you when his friends are around (Selective Hearing Syndrome, wink-wink).  It sends a chill through me, knots my stomach and raises my BP to see my child come through the door crying.  My protective Mama instinct instantly ramps up, primal, at the ready.

We may have to take a trip to the Dr. if Doodle's still having difficulty moving his arm tomorrow.  After his morning exams of course.  Because our fam (especially me) has caught every virus this season, I'll wear a full hazmat suit and spray the kids down with lysol in the parking lot.  Just's to a healthier tomorrow.