Unique Like Everyone Else

On Boredom

Like many kids of this generation, J-Boy is a video game fanatic, always with a handheld gaming device on his person, that device usually on and in use, his head bent down and his longish, Junior High hair hanging forward helping to block any glare on the screen (and, perhaps, any glare from his mother...).  Somehow the stimulation is calming to him.  Maybe it drowns out all other stimulation that can be overwhelming, especially to a person with autism. 

I know that this obsession is not an "autism" thing.  Or a "kid" thing.  Put the portable gaming system into the more general category of "handheld technology" and there are many, many an adult who can't or won't disconnect from their various iThings during any lull in the day's flow of activity.

I was driving J-Boy to school the other morning and as we pulled out of the driveway he flipped open his 3DS and the battery died before we were a block away from the house.  We didn't have time to go back for him to grab a charger or his PSP-Go (I know, he's kinda spoiled) as a back up plan.  So I knew we needed to use the drive time to strategize how his day would go when he got free time during at school that he would usually spend pacifying himself with video games. 

To my relief, he seemed positive and calm.  We quietly drove along, listening to the radio.  Then he started a conversation:

J-Boy:  "Mom, I think I know how music was invented, and I think it is genius."

Me:  "Oh, yeah?  Tell me!"

J-Boy:  "Well, sometimes when I'm bored, I will just start tapping with my fingers and it gets sort of, like, into a rhythm.  And I think that's how it got started, by someone just being bored.  Then someone was playing around with some string and figured out that if you pluck it when it is different lengths then it'll make different sounds."

Ooo!  Knock, knock!  Opportunity, here!

While trying to keep it conversational, I went into a little dissertation on boredom, the importance of boredom, the luxury of boredom, the skill required to be "productively bored."

We discussed Early Man and his trecherous day-to-day fight for survival, how exhausting that must have been.  And before fire, how long and scary those nights could have been.  Early Man did not have the luxury of boredom; there is not really "down time" when life itself must be protected and fought for each day.

We talked about how as humans gained skills and made discoveries, tools, and inventions they gained some efficiency in meeting life's basic needs, allowing time for play, art, music, and even more tools and invention.

J-Boy found humor in the irony that this talk about boredom started because he was bored.   But he seemed to understand that giving the mind a break from constant occupation and stimulatory input would allow some of the information in there a chance to digest and perhaps grow into different or even bigger ideas and thoughts.  He seemed to "get" that one should feel very lucky to experience boredom because it must mean that all their other needs are being met.

Now, I'm not sure if this last bit was meant to be a genuine compliment, or a crack about me sitting around on my A#% all day, but as he gets out of the car at school he says to me,

"Mom, you live very efficiently.  Bye!"

Well, thanks to many a modern invention, yes, yes I do.

 

 

Coin a Phrase

I was lounging this past weekend, flipping through the latest issue of Real Simple magazine. 

First off, can I just point out how fashion forward I am with the bed linens that perfectly coordinate with the color trends featured on the magazine cover?  Lol!

 

Usually I breeze past the ads, but this one caught me off guard and by surprise:

 

Apparently J-Boy has been moonlighting as a marketing exec for Origins cosmetics! 

 

He came up with the term "Night-a-mins" when he was 7 years old to distinguish the Flinstone chewables variety from the medication he was taking before bed to help with some of the extreme behaviors he was demonstrating due to his then recent diagnosis of autism.  He is always so clever with word play! 

It was a very difficult decision to put J-Boy on medication.  At the time, he had just been diagnosed, and our family was in crisis.  Not because of the diagnosis; that news was actually a blessing.  The diagnosis gave us a a name for what we were dealing with, as well as much needed  direction in educating ourselves and seeking guidance in parenting this unique kid who totally defied our parenting instincts and the practices that had worked so beautifully with J-Girl.  We loved J-Boy and were afraid that any medication would squelch all the fun-loving personality he had, and leave us with an empty shell.  But, his emotional breakdowns kept us walking on eggshells, never knowing what might unleash the Tasmanian Devil that whirled through the house, injuring himself, his sister, me, and any number of material objects including mirrors, cameras, cutting boards, etc. 

The low dose medicine was to target the "frequency, intensity, and duration" of J-Boy's daily, Defcon 1 level, 2 hour tantrums.   And the plan made with his doctor was that this was a temporary solution that would allow J-Boy some inner peace and calm that would be a condusive state in which to learn some coping skills.  We decided we would try it, with baited breath and a skeptic eye, ready to pull the plug on the experiment if we did not like the effects we were seeing.  We were pleasantly surprised.  While his behaviors weren't eliminated, they were definitely de-escalated. 

And now, J-Boy no longer takes Night-a-mins.  He has matured and grown, and has gained so much poise and control.  I was so afraid of losing him behind a veil of drugs.  But we never did.  He was more lost to us when he was struggling, so miserable with emotions and feelings that were bigger than he was, bigger than any of the tools he had to work with.  We look upon the skills he's learned with the same pride as his learning to walk, or ride a bike.  It's like we took off the emotional training wheels and he's cruising along on his own, with the occasional look back smile that says, "Look, Mom!  No hands!" 

Autism Family Surf Camp

Growing up in Pacifica, CA and going to college in San Diego, surfing has long been on my "bucket" list.  Along with holding a koala, playing the piano, and speaking fluent Spanish.  Hmm.  Aside from marsupial-cuddling, everything on my list requires time, patience, and practice--if not some innate talent.  So, while I technically can cross surfing off my bucket list, it's now holding top honors on my list titled, Retirement Plan. 

I received an email a few weeks ago from a wonderful organization called Surfers Healing, announcing their first annual Autism Family Surf Camp.  J-Boy has been fortunate to surf at their Malibu day camp event the past two years.  It is an amazing family day at the beach, complete with lunch, treats, an opportunity for kids with autism to have some one-on-one time on a surfboard with incredibly kind and patient volunteer surfers, and to meet and relax with other families who share all the challenges and joys that come from having a loved one with autism.  So, an opportunity to spend three days surfing and camping with this group??  SIGN US UP!!!!

It was A-MAZ-ING!!

 

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This was a vacation that left me feeling so full.  My heart was full from meeting so many amazing families and volunteers.  My stomach was full from the many great meals that were deliciously prepared and provided.  My soul was full from being out in nature-the sun, sand, salt, the breeze and the sound of the waves-that feeds me; that feels like home.  And my brain and muscles were filled with such empowerment at having accomplished a physical feat and proving that, yes, old dogs CAN learn new tricks.

But all of that, ALL OF IT, would not have been possible without Izzy and Danielle Paskowitz, and their heartfelt vision to bring these gifts to autism families.  Families like theirs.  Families like ours. 

Thank you, thank you, thank you!  We are looking forward to next time!

 

 

Anti-Social Skills

So, we were having lunch with some friends the other day, and the subject of fluffernutter sandwiches came up.  You know, peanut butter and marshmallow creme on--presumably, a must--white bread? 

 

Well, I was called out for being a horrible mother to have deprived my kids of such deliciousness, and J-Boy was immediately sent to the neighboring supermarket with his friend to go purchase a couple jars of fluff.

While the boys were on their errand the conversation turned to the importance of teaching our A-boys (our boys both have autism) life skills with these sorts of small tasks and doses of independence. It is essential that they be able to communicate their needs and access the community.  The whole process of finding the item in the grocery that they need, standing in line, paying with cash and making change, interacting with the store employees, etc., while second nature to us adults, can be a lot to navigate for a child.

Impressed by their quick return from accomplishing their goal, I chuckled as I asked them for details of their quest. 

"Haha!  What did the lady at the register think of you two boys going to the store just to buy marshmallow fluff?  Did she ask you what kind of mischief you were up to?  Haha!"

"No.  We just used the Self-Checkout."

 

Ah, technology. 
I think these kids are not only going to be just fine,
but may literally rule the world. :)

 

A Mother's Work

I think since I was a child, I've always been in possession of a few Guatamalan Worry Dolls.  I'm not really sure by what means they have found their way to me, but my guess is that where there is a need, the Lord provideth.  I don't really consider myself a worrywart (the Lord also provideth medication for such things), but as a mother I think it is a natural part of the job to have some sense of anxiety over the uncertainness of our kids' paths and futures.  This can be heavily compounded when raising a child with a disability (hence the meds) and J-Boy's autism has certainly kept me up nights. 

I heard a story long ago about a man who ritualistically touched the leaves of a tree as he walked up the path to his house every day after work.  One day his kids, or his wife-I can't remember-asked him why he displayed this odd, meaningless behavior.  He answered that he hangs his troubles from work outside on that tree so that he doesn't bring them into the house with him.  I loved that idea, and have kept a small pouch of worry dolls hanging on my headboard for a very long time.  Sometimes I give them a gentle squeeze before closing my eyes and handing myself over to sleep.

 

 

The next project in the It's Sew Easy online class I am taking from Julie Fei-Fan Balzer was to make a small heart-shaped pillow.  Boy, was I feeling uninspired.  I really liked Julie's example; the fabric she used appeared to be a well-used paint rag filled with a myriad of mish-mashed color and pattern from many a past project.  It had such character; it was so "Julie".   I needed the find something that was "me". 

I was reading an interesting crime novel recently, House Rules, by Jodi Picoult, a perfect crossover book for me as it chronicles a case --possibly, allegedly-- involving an 18 year old boy with Asperger's Syndrome, a form of autism, who is a crime scene investigation fanatic.  (Some of you readers who don't know me personally may find it interesting to know that I worked as a forensic scientist before my son was diagnosed with autism. It became clear that caring for him and advocating for him was a full time job in itself.)  The mother in the book made an analogy that got my mind racing.

 

"Sometimes I think the human heart is just a simple shelf.  There's only so much you can pile onto it before something falls off an edge and you are left to pick up the pieces."

 

With my bag of worry people perched over my shoulder as I read that passage, propped up in bed, inspiration for my heart-shaped pillow finally hit.  I immediately unstrung the pouch and was actually surprised at what I found inside it:

Had I literally worried their little heads off????

 

And, why were the heads of the girl dolls completely gone? 
Had I subconsciously transferred my worry-work about J-Girl to these dolls
so I could more consciously worry about J-Boy, ala some kind of
emotional divide and conquer?  Weird!!

Anyway, my idea was, with regard to worrying, "A Mother's Work is Never Done."  Here were my first attempts for the pillow's design:

 

Yeah, I wasn't really feeling it.  I ordered some new worry dolls (with heads!) from the internet.  Here's the final result:

 

 

I love it!  And there are plenty of worry dolls on there to help me get
these kids through High School, I think! 

I'm going to go hang it up on my headboard now! 
Good night!

A is for Annoyance

 
"Ugh!  WHY do we even HAVE to alphabetize the spelling words??? 
I don't see the point!" J-Boy lamented loudly. 

Without getting into the whole idea that spelling exercises are about hanging out with the words, spending time and getting acquainted with them, I started in on how alphabetizing is an important skill, one you'll use often, blah, blah, blah.

"I don't see how it would even help in organizing anything! 

Continuing with the task I was working on, I said with a smirk, "I'd never be able to find my broom if I didn't always keep it to the left of my mop..." 

"Wh-h-h-at??" he said with a breathy grin.

I looked up with a smile.  He shook his head in a my-mother-is-so-weird kind of way, and quietly, ardently, got his alphebetizing exercise done in less than a minute.

Sometimes derailment is the best tactic to use with him.

Bird's Eye View

All mom's have favorite stories they like to tell about their kids.  This is one of my J-Boy stories.  It is an example of how he thinks outside the box, maybe because he is a kid who IS outside the box in many ways.  I was inspired to create an art journal piece about it because, to me, it is a visual story, though the event itself ocurred about a year and a half ago. 

  

 
 

 

I enjoyed cutting out the bird stencil from a picture I found online and mixing up some dilute paint to spray to get the resisted image.  I also diluted some metallic gold paint I had to tone down the white of the doilies and unify this busy smattering of elements.  The initial inspiration for the page came from Starbucks and their "Stories are Gifts to Share" cup sleeve and my "berry bushes" are actually reindeer antlers that were on bags Big Daddy and I got there containing our oatmeal fixings.  And I have no idea why I had an Old Navy tag from a pair of size 10 pants, but since J-Boy was 10 years old at the time, it seemed to fit. All in all, I think it is a pretty busy page, but I had fun playing with all the elements while looking at those darling eyes and thinking about my boy.  Maybe my next attempt at this freer style of scrapping will offer a place to rest!

 

 

 

J-Boy, I love the way you look at the world!

Appropriate Response Machine 3000

They say that necessity is the mother of invention. 

Many of you may not know that J-Boy has had intensive in-home behavior therapy 10-15 hours a week for the past two and a half years.  He recently "graduated" and we have been flying solo for the last few weeks.  We were blessed with an excellent team who worked directly with J-Boy to identify and tackle issues, concerns and obstacles in the areas of Communication, Social Skills, Daily Living, Self Care and anything else that might be considered Second Nature in one's life.  The growth and strides this kid made during this time are astounding! 

One of the best collaborative inventions to come out of this hard-working time, J-Boy dubbed the ARM3000.

 

For a kid who is incredibly articultate, with vocabulary and spelling skills that earn him the moniker, Dictionary (as in "Go check the Dictionary"--a former teacher's cheeky way of telling a kid to go ask J-Boy for help) it can be confounding when he resorts to non-verbal demonstrations of frustration, or cries of doom that are totally disproportionate to the reality of a situation.  And so the Appropriate Response Machine was born.

 

J-Boy had a blast designing it and building it with Big Daddy.  He and I had a heart-to-heart to get to the real feelings behind his dramatic, end-it-all exclamations and his fiery, downright mean commands.  We worked together to find the right words to convey his emotions and needs.  For example:

"GO AWAY!" might mean, "I don't like what you are asking me to do," or "I need some space."

"JUST KILL ME!" might mean, "There is way too much homework," or "I don't want to empty the dishwasher because I don't want to stop playing video games."

We filled the machine's mouth with appropriate responses to many possible scenarios.

    

"My rabbit is fluffy?"  Yes, sometimes even the most well designed pieces of technology can have a glitch in the system now and then.  And, let's face it, as random-seeming as "my rabbit is fluffy" or "I like pie" may seem, they are WAY more appropriate, well, at least more acceptable, than "Die!" or "I hate you!"

So, how does this fine piece of machinery work?  J-Boy will now take you through a pictorial demonstration:

First, an occurance involving an inappropriate response must be identified.  When the inappropriate responder has calmed down and is ready to acknowledge that the response was indeed inappropriate, he will write the inappropriate response on a slip of paper.

  
(J-Boy was upset when he saw this picture until I reminded him
he was just acting angry to show how the ARM3000 works.)

The inappropriate response is submitted to the machine, and an appropriate response is generated.

        

 

The user then determines if the generated response is a) an appropriate alternative and b) conveying the actual feelings behind the inappropriate words.  If not, the user may pick out another response until one appears that matches both criteria a) and b). 

A brief discussion ensues, hugs are distributed, and the appropriate response card is returned to the ARM3000.

This has been a very successful tool in our ongoing work to raise J-Boy to his full, awesome, brilliant, charming, loveable potential.  Thanks, Team!!

 

 

Shoe-Be-Doo-Be...Don't

 

"Ssshhoooooeeeessss!!!  SssshhOOOOOOOOeeeeeesss!!!”
he wailed with heart-wrenching panic, red-faced and at the mercy
of the tyrant who would cage him and callously strip him of his beloved footwear.

 

J-Boy was two years old.  I put him down for a nap and started to remove his darling little brown boots.  "Ssshhoooooeeeessss!!!  SssshhOOOOOOOOeeeeeesss!!!”  Motherhood is filled with those “choose-your-battles” moments and I thought to myself, this is weird, but F-it; go ahead and sleep in them.

I know that footwear may be an obvious, if not cliché metaphor for a life’s journey.  And maybe I’m stretching, trying to pull a bunch of literal events and incidences into something more figurative, deep and meaningful.  But I am trying to come to terms with the reality that

 My son is a runner.

 

 Not a track star.  Not a 5000 meter Olympian.  Not a marathoner or long-distance athlete.

No, he runs to escape “the Now”. 

When words won’t come, J-Boy has long used his shoes to express his frustrations.  From the time he could walk, it seems he could run.  And boy, would he run.  I’d be at the mall or the park and without warning or seeming provocation the kid would take off.  And he was fast.  I’d have to make a split second decision to abandon 4 year old J-Girl and chase after 2 year old J-Boy.  I know every parent of 2+ kids has to deal with this, but it got to the point where I just didn’t want to go anywhere alone with them.

I have had the privilege of hearing Temple Grandin speak on numerous ocassions.  A great piece of advice she often gives, is to take these seemingly quirky things that kids with autism may focus and perseverate on and figure out how to turn that into a skill that someone else needs; to build on their strengths and interests and turn them into something that makes them employable.  I thought this was great counsel, but I was totally off the mark when I signed J-Boy up for the track team. 

 
Yeah, he would run alright--but for the parking lot, or to hide under the bleachers. 
Finally I realized that the running was an escape, a coping mechanism,
not a desire to push his stamina and endurance. 
File that one under “Duh”!

As he got a bit older, he would throw his shoes to express his angers and frustrations.  The bigger the shoes got, and the stronger his pitching arm, well, you can imagine the need to find other ways for him to communicate under duress.  In fact, at one point his daily goal at school was just to keep his shoes on, and when they came off he would be sentenced to wearing lace-up high tops the next day as a “natural consequence.” 

We continue to work with him on appropriate ways to express himself, to communicate.  Baby steps, so to speak.  Yelling would be a definite step up from throwing things, and he does go this route at times.  His psychiatrist suggested that I Google up “selective mutism” and explore types of language therapy and support groups for children with autism who have the ability to speak but can’t or won’t when anxieties are high. 

So, why am I telling you all of this?  Because I got a call from the school today about J-Boy running off, and it’s escalating, and for obvious safety reasons it has got to stop.  Yesterday when I picked him up from the bus stop he only had socks on his feet, but I was thankful that his shoes were in his backpack. 

I was well into this post when it was time to go pick him up from the bus today.  He would not talk to me in the car, would not share what had been SO frustrating that he felt running away and hiding under a table in the school library was a good idea.  Now he’s draped half on and half off the couch in the livingroom, and BAM, yep, he just threw one of his shoes.

 Talk about waiting for the other shoe to drop!  *Sigh*.  I guess I’d better sign off--before it does.

 

 

 

My Rock

I have this rock in my kitchen that J-Boy painted when he was in preschool.  One of the many joys of motherhood is the amazing hand-crafted gifts that your child surprises you with on various Holidays or Just-Becauses. 

He was 3 years old when he painted this rock, one of his first objets d'art, and I couldn't wait to proudly display it in my kitchen window where I could marvel at it each day.

 

I knelt down, holding the rock in my hand like a baby bird, displaying the careful love and protectiveness I felt for this precious gem bestowed upon me.  I held it for J-Boy and I to behold and be proud of together.

"NO!!" he yelled, and he hit my hand.  "NO!!"

"J-Boy!  What's the matter?!  No, don't hit it!  I love it!  I'm going to put it here in the kitchen so I can see it and it will remind me of you!"

"NO!!"

As an aside, I must tell you that J-Boy went through a long period where he would only answer questions with an adamant "NO!"  Big Daddy used to really get his goat after a series of yes/no questions:

"Do you want to eat?"  NO!!
"Do you want some milk?"  NO!!
"Do you want me to read you a story?"  NO!!
"Are you the boy who just says, 'No'?"  N- [frustrated pause]  RrrOOOAAARRRR!!!

Ooo, he'd get sooo mad!!

Well, here we are 8 years later, and I'm picking up the rock to give it a dusting and it hits me:

OMG--he must have HATED painting this rock!!

He has always had a real aversion to coloring, and the fact that he was dealing with messy, goopy, drippy paint back when his fine motor control was pretty weak...OMG, it must have been awful for the poor little guy!  And I was so insistent on what I wanted, and sort of trivializing his feelings (which, admittedly, always seemed so exaggerated and out-of-proportion even considering the atrocities of toddler-dom).  If he had been tall enough to see over the kitchen counter that rock would have sat there mocking him daily. 

So now I'm feeling bad, and thinking maybe I should remove the rock.

"Hey, J-Boy.  I'm really sorry that I kept the rock you painted on display all these years when you really didn't want me to."

"What rock?"

"The one in the kitchen window that you painted in preschool."

"I painted a rock in preschool?"

Well, at least he's not been scarred for life.  Unless he's stuffed his feelings down so deep into his psyche that they will fester and re-emerge in some future adult therapy session where he is working out his mommy-issues.  For now, however, the rock will stay put.  Thanks, J-Boy.  I still love it!