Unique Like Everyone Else

Rookie Move

Summer's here, poeple. 

Don't forget to put sunscreen on the tops of your feet!

 

 

This, after being made fun of for buying enough SPF 50 at Costco
to protect half the beach all summer long.

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!!

 

 

Happy Birthday, 19th Amendment!

The following article by Andrew Malcolm was published in the
Los Angeles Times on Sunday, August 22, 2010. 

 

 

Women's Suffrage a Mom's Doing

The right of citizens of the United States to vote shall not be
denied or abridged by the United States or by any state on
account of sex.  Congress shall have power to enforce this article
by appropriate legislation.

 

Last week marked the 90th anniversary of the 19th Amendment
to the United States Constitution, the one that gave women the
right to vote after a full century of organization, agitation, and
marching.

On August 18, 1920, the Tenessee General Assembly became the
36th state to ratify the amendment, thus making it official.

Few folks remember, however, that the historic ratification
occurred by just one single vote--a man's, of course, in those days.

It was Harry T. Burn, a lawyer and later a banker.  He had settled
on his opposition to this suffrage nonsense.

The General Assembly suffrage amendment vote came up a 48-48 tie.
Burn's vot would defeat it and postpone national ratification at
least another month until the Connecticul Legislature vote.

But shortly before the historic legislative tally, Burn received a long
letter from his mother back home in Niota.

She said, in part:

"I have been watching to see how you stood, but have
not noticed anything yet.  Don't forget to be a good boy."

Burn behaved himself.  He changed his "nay" vote to a "yea."

The rest has become history.

 

 

 

 

 

 

Surfers Healing

Our family was honored to take part in an incredible event with an amazing organization called Surfers Healing. 

Surfers Healing is a non-profit foundation started by former professional surfer, Israel "Izzy" Paskowitz, and his wife, Danielle.  Their son, Isaiah, was diagnosed with autism at the age of three.  After discovering the therapuetic effect being in the ocean and riding waves on a tandem surfboard had on Isaiah, Izzy and Danielle wanted to be able to share this unique experience with other kids with autism and their families.  The first Surfers Healing event was held in 2000.

J-Boy was pretty excited about the idea when I told him I was going to try and get him signed up for the event.  It is very popular, as you can imagine, and for a beautiful day at the beach with a bunch of people who understand and live with autism, an unbelievable and seemingly bottomless buffet lunch, not to mention the one-on-one surf experience, ALL AT NO CHARGE, the slots were filled up in less than an hour!  When we received the confirmation email that J-boy was invited we were beside ourselves!

There was plenty of time for some fun on the beach before hitting the waves, and several of J-boy's buddies were also signed up to surf!

As it came closer to J-boy's turn on the waves, he grew a bit anxious.  He has always taken some time to warm up to all the sensations at the shore, usually deciding to brave the waters when I give the warning that we'll be leaving in 10 minutes.  (You know, so he can be soaking wet and plastered with sand right before we need to get in the car to go home.)  I thought he'd need some time to get his head around the idea of what was coming.  About a half hour before his time slot I took him over to the check-in tent to watch some other kids getting ready and for him to decide if he'd like to try a wetsuit or just the lifevest alone.  Instead, he was whisked into a vest and sent out into the water with a guide right then and there.  No opportunity to ramp up, melt down, negotiate or fuss.  It couldn't have worked out any better!

 

Or so I thought!  Did you hear our friend, Mrs. H., say, "He's actually smiling!" on the video?  Look at that face; he is smiling right??
 

"Well," J-Boy explains, "I think my happy face is the same as my face of fear."

He was able to recover after awhile.  He had no interest in getting back in the water, but found a way to play with his friends while they were in deep and he was on land. 

"Did you have a good day, though, J?"

"Yeah, except for the surfing part.  Don't make me do that ever again."

"We'll try to come again next year.  You'll be a year older.  And now that you've done it, you'll know what to expect."

"I don't expect to want to try that again."

"Let's wait until next year to decide."

"Ok."

Thank you, Surfers Healing! 

This was a truly one-of-a-kind experience and an incredible day for our family! 

Depends on How You Look At It

Perspective.  Outlook.  My mom gave me a notepad long ago, and I like to think that I strive to live this philosophy:

   

For a person with Autism, however, life can often feel like an unmanageble percentage of stuff not only happening to you, but actually coming after you personally.  It is the "auto" in "autism", meaning "self".  Not self-centered in an egotistical, arrogant way, but in a way in which things are felt so strongly, so sensitively, that there is no way to see beyond the self in a situation. 

J-Boy had a REALLY hard day last week.  School seemed to be fine; he came home with a perfect behavior report.  But...then...he let it...all...go.  I don't think I can explain how he was feeling, how he was behaving.  It never comes across right.  But I can tell you how I felt.  I felt helpless and small.  I felt like his autism was "really big" that afternoon and I couldn't get in there to fix it or calm it.  Nothing I could do or say, no loving touch, no pained and understanding gaze--I felt powerless. 

Is this a kind of art therapy?  I got a visual of my feelings and decided to try and illustrate them on the computer: 

 

That's me in the biplane trying to get close enough to tranquilize the beast.  Why are we in San Francisco?  Because that was the best Godzilla picture I could find that would work with the photo of the J-Monster.  And, truth be known, I have used chocolate as a way to redirect his focus successfully in the past.  "Just turn around, J-Zilla!  Look, there behind you!  An entire chocolate factory to sweeten and soothe you!"

Yes, I think it is a form of therapy.  I had an amazing moment of enlightenment while creating that image.  My original plan had been to have that picture of J-Boy juxtaposed with a tiny picture of me to illustrate how small I felt in that meltdown moment.  I came across this picture that I thought would be useful:

I wasn't able to find the image on the website it was linked to, BUT, look at what the website is:

 

"Through the eyes of autism"

 

Oh, oh, OHHH!!  That's not ME with J-Zilla approaching!  That's J-Boy!  (In a skirt?)  No, but the small one is the one with AUTISM!  Not Godzilla!  J-Boy is reacting to a Godzilla-world surrounding him.  He is overwhelmed by it.  You know what they say to do if you encounter a bear in the woods?  "Make yourself look big."  It is a survival skill.  Stand up on your tiptoes, raise your arms over your head.   Breathe fire, roar, destroy buildings and trample townspeople.  (Oops, they don't recommend that last part anymore.)

Actually, it's not often that I feel sorry for myself or powerless as the mother of a kid with autism.  But I'm human, so of course I have my moments.  But I am amazed at what I find to lift myself up when I do slip down there.  I just have to keep it in the right perspective.   

Time to Shine

 

 

My autism support/outreach/networking group tried something new this year.  A couple of our Board members had taken a little 3-day cruise to Mexico through a terrific organization called Autism on the Seas.  The ship has   specially trained staff, activities, and understanding for people on the autism spectrum and their special needs.  I will certainly post more on this later, as we are ready to set sail on one of these amazing voyages ourselves this summer.  (And, by "ourselves" I mean the four of us plus 10 members of our extended family and six other families from our group!)  Anyway,  one of the activities on the cruise was a talent show, and the kids could showcase any talent from "talking like an alien" to being "the world's loudest burper."  How fun, thought Mrs. B., to do something like this with our group back home??  We'll let the kids get up there and do their thing, and we can display their visual arts, too, be it a picture they've drawn or painted or a LEGO sculpture they are proud of!

It became so much more than that!  We met an amazing group of High School students and their fearless leader, A.D., the choir director.  They put in countless hours of rehearsing, choreographing, mentoring, including, and loving these kids.  A.D. and her student president, J.L. produced an exceptional, tear-jerking show for our community, bringing out the best of every performer and visual artist, and giving them their Time to Shine.

There were a few stand-up comedians, and comedy routines like Abbott and Costello's Who's on First? 

 

There were some beautiful soloists, wow-ing us with some Disney favorites, popular tunes, and even a love song in Italian!

 

 

The choir choreographed group acts for those who might not want to get on stage alone.

The Jedis and Sith battled it out to song in "Duel of the Fates".

 

 

And got funky in a Hip Hop routine.

 

That's J-Girl striking a pose in the turquoise shirt.  Another great part of this endeavor was that siblings could be involved, too.  So often they are dragged along to this therapy or that; Time to Shine gave them an opportunity to be in an activity with their brother or sister, doing something fun and meant for both of them!  (Not that you could tell from the photo, but there are some girls with autism on that stage!)

 

J-Boy was not too hip about getting on stage in the beginning of this process.  He agreed, reluctantly, to work on a video entry with one of his therapists.  J-Girl and I helped a bit, too, but J-Boy wrote the script, created the backgrounds, and worked with me to edit it together. 

And THEN he got bit by the acting bug!  He performed in the Star Wars number, did a one-man skit called "Pay the Rent", did some "Doctor, Doctor" jokes with his buddy T. 

Patient:  Doctor, Doctor!  My sister thinks she's a duck!

Doctor:  Well, why don't you bring her in here and I'll have a look at her.

Patient:  I can't!  She's already flown South for the Winter! 

               Ba-dum, dum!!  (Yes, there was a live drummer!)

 

The biggest, winning-est feeling of success came this morning, however.  I told the kids that I know it's a little early to be thinking about it, but will they be looking forward to participating in "Time to Shine" next year?  J-Boy looked at me with wide eyes and dropped-open mouth, "You mean, there's going to be one next year?!"  And he skipped across the room to give me the BIGGEST hug!  I'm still shining from this amazing experience!

 

Welcome to Holland

Before I compile my pictures and share our trip to Legoland with you  (you can follow the link to see Mrs. Do-er's version of the story) I need to back up to last month and say, "Hey, everybody!  April is Autism Awareness Month!"  Sorry if you weren't aware--I didn't do my part in spreading the word via cyberspace. 

The City made a special presentation at their City Council meeting on April 14, officially proclaiming April as Autism Awareness month in our town.  Many of our local families with loved ones affected by Autism were able to come out to the event and spread the awareness.  We showed our solidarity in brand new T-shirts that Big Daddy designed for our group. 

  

 

Autism hits home for one of our City Council members.  She invited These three boys up to lead the Pledge of Alligiance.  J-Boy still talks proudly about the "time he was on TV."  The Council meetings are televised, and he is going to write a letter asking for the promised DVD of the meeting "so he can post it on YouTube."  The Councilwoman read a well-loved essay by Emily Perl Kingsley that explains what it is like to have a child with a disability.  I'll share it with you here.

 

WELCOME TO HOLLAND

By Emily Perl Kingsley, 1987

I am often asked to describe the experience of raising a child with a disability--to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy.

You buy a bunch of guidebooks and make your wonderful plans:  the Coliseum, Michelangelo's David, the gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags, and off you go.  Several hours later the plane lands.  The flight attendant comes on and announces,

"Welcome to Holland!"

"Holland!" you say.  "What do you mean Holland?  I signed up for Italy!  I'm supposed to be in Italy!  All my life I've dreamed of going to Italy!"

But there's been a change in the flight plan.  You've landed in Holland, and here you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guidebooks.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while, and you catch your breath, you look around, and you begin to notice that Holland has windmills.  Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and thy're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, "Yes, that's where I was supposed to go.  That's what I had planned."

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn 't get to Italy, you may never be free to enjoy the very special, the very wonderful things about Holland.

 

The first time I heard this story, I was inspired to make a cross-stiched windmill with "Welcome to Holland" on it such that it would sorta look like a souvenier.  I found some cute vintage dishtowels and tableclothes online to help me with the design and styling.  Then I looked online to translate "welcome to Holland" into Dutch.  The most reliable source I found said, "Verwelkomen naar Holland".  I went with that.  When Ms. Concil-member began reading, I knew right away that I needed to make her one.  So, here is my first entry for

 

 

You can click the "Finished for Friday" icon and go over to Lit & Laundry's blog to see all of the successes of the week others have posted.  Mrs. Do-er participates when she can, and, I copy her as often as she threatens me possible.

 

 

Indeed, there are times when I feel like I am clomping along in some ridiculously impractical wooden shoes, or clumsily trying to use my finger to keep a disastrous leak from breaking through the dyke.  But, many times, I experience the awe and surprise of a sprouting bulb long-ago planted and forgotten, that in its due time has been nourished deep in the earth and finally breaks forth.  Those are the moments, the ones that make it all worthwhile, that are beautiful and breathtaking. 

Thanks for letting me share this accomplishment with you all.

Next week, maybe I'll be able to report a shower!

Go Sharks!!

The thing about autism, well, one of the things, is that it is an "invisible disability".  There is usually nothing about a person with autism's physical appearance that would give you a clue that they are differently abled or developed than any of their peers.  There may be quirky movements or behaviors, but not always, and not always even for one individual.  You just wouldn't know.

We've tried many, many activities to get J-Boy out of the house and away from the video game consoles (see how age appropriate he is???) but even with careful plotting, rationale, open dialogue and preparation, J's ventures in physical activity and organized sports-be they individual or team-have been less than successful.

Soccer

T-ball

Swimming

Tumbling

Cub Scouts

Track and Field

Tennis

Basketball

Karate (We are giving this a second go around at a different Dojo now.)

 

The experiences haven't been horrible.   We've met some very caring and understanding people along the way with big hearts and lots of patience.  But everything seems to move at a pace beyond J's tolerance and stamina.  

 

Since J-Boy's diagnosis in the Fall of 2007, we have been "on the circuit" of resource fairs, conferences, workshops and seminars.  Special Olympics has been recommended, sign-up forms and registration packets offered.  We just couldn't go there; it didn't seem like the right place for him.  (Please refer to the list above if you need a reminder of all the "typical" places that weren't the right place for him either.)  I really don't believe in coincidences, and try to be alert to uncanny circumstances and chance meetings for what they truly are: gifts.  But sometimes the gift has to be wrapped in a REALLY BIG BOX with a HUMONGOUS SPARKLY BOW and a FLASHING NEON GIFT TAG with my name on it.

That's when I met Coach Curt.  I was purusing the Special Olympics table at a fair, feeling "safe" because everything was mid-to-late-season already.  He says, "Well, I just happen to be the head swim coach, and I don't know about the other sports, but I'm happy to accept athletes at any point in the season.  And what's your name, Son?  You look like Michael Phelps.  Would you agree to just come out and take a look at what we're doing this Saturday?"   And J-Boy, hesitant with the first handshake, ended up shaking Coach Curt's hand 4 or 5 times and committed to just "taking a look".  And Coach praised him for that committment. 

So we showed up that Saturday.  The pool is only two minutes away from the house.  And J-Boy was greeted by Coach with a resounding, "Hey, J!  You are a man of your word! I like that!" 

It's hard work.  He gets tired easily.  We cheer him on.  He pulls harder with his right arm, and reminds me of little Nemo and his "lucky" fin.  And then it's time for the Regional Swim Meet, with eight counties represented.

 

Number 18 with Game Face on! (Actually, he is still dealing with the "tickly" feeling of a stranger writing on his arm with a Sharpie pen...)

 

15 meter Unassisted Swim (he plows forward when head down, but still working on the side-breathing)

 

 

25 meter swim.  (I'm not sure who it felt longer for!  At the end I think we were cheering him on so we wouldn't have to jump in and save him!  Quite an accomplishment, as Coach sprung it on him at the last minute that he'd be doing this event!)

  

 

One of FOUR times on the podium!!

 

 

With Coach Curt

 

 

With A., his 15 meter event assistant

 

 

"Mom, I am so proud of myself!  This is, literally, a tear of joy!"

 

 

And with all those medals in the pocket of his chair, the "bling" he said he wanted was the ring-pop he saw at the snack bar.

 

Congratulations, J-Boy!!  Way to go, Sharks!!

  

Pete and Repeat

"Pete and Repeat were walkin' down the street.  Pete left.  Who's left?"

"Repeat."

"Pete and Repeat were walkin' down the street.  Pete left.  Who's left?"

"Repeat."

"Pete and ..........."

In the same vein as "Orange you glad I didn't say 'banana'?", this is the kind of humor I have forced on Big Daddy and my kids all these years.  It's become a family inside-joke; a sly reference to Pete can be made, and we all snicker because we are in "the know".   For some reason I have ducks associated with Pete and RePete.  Maybe I saw it in an illustrated joke book long ago.  Or I met a duck named Pete at a carnival petting zoo and tied the images together.  (Strange, I've never made that connection with either of my Uncle Petes, and neither of them resemble any sort of water fowl.)

No, these are not my Uncle Petes.  Hardy-har-har.

 

J-Boy has a little quirk:  he often repeats himself, or sometimes other people if they say something he finds witty or funny.  The repeat is always in a much lower tone, just under his breath and to himself.  He's not concerned about it.  Sometimes his friends will ask him why he does it, and he nonchalantly replies, "because of autism."  Not that we allow him to play the "A" card to get away with things.  But, at the same time, he is gaining some understanding and self-awareness, which are very good things.

On the drive to school one morning, J-Boy noticed this billboard:

 

"Ha!  That's funny, Mom--It says, 'We like to repeat ourselves'.  Me too!  Me too."

"Yeah!  Ha-ha!  Maybe you could work for them someday..."

"Yeah!  'Maybe you could work for them someday.'  Maybe. Maybe.....Uh, Mom?"

"Yeah?"

"Um, I don't think I will work for them someday."

"Oh?"

"Yeah.  You know, because of the surgery thing?  I don't like that."

"Honey, I was only joking."

"Yeah, I know.  I know."

 

It's true.  He really doesn't like any shows that have doctors in the O.R.  No pausing on the Discovery Health Channel at our house.  Thank goodness my Dr. 90210 phase is over!   Thank goodness my Dr. 90210 phase is over.  You know, some things just bear repeating. 

I'd Compost...That!

When Edward joined our family (almost a year ago!!), I was a bit dismayed about how much litter I was tossing out by cleaning his cage.  I felt I had made an ecologically sound choice in the litter I use, as far as it being a recycled product, no dyes, natural, but at the rate I (he) was going through it, I felt very wasteful and self-conscious.  About a month later I attended a composting workshop at our Water Agency's Conservatory Garden.   I came with an open mind, a notebook, and a single question:  Can I compost rabbit litter?  The answer was yes.  Yes!  I left with a government subsidized compost bin and a new hobby. 

Big Daddy was leery.  I sheepishly admit to a history of hobbies that "didn't take".  My initial excitement and intentions are always good, but my follow-through and commitment have left the garage a bit cluttered with big ideas.  "Don't throw that out!  I'm gonna get to that someday!!"  "C'mon! This box says 1994 on it!!  You don't even know what's IN there!"  "Yes I do!  An unfulfilled dream!"  "Fine. (**sigh**)". 

Well, the composting took.  And I love it in a weird way.  I'm not sure if it appeals to the chemist in me, the San Francisco-Eco-Freak in me, or what, but it does.  And I get excited when I come across would-be trash that can go in the bin.  "Ooo!  I bet I could compost that!"  It's also a guilt/stress reducer.  If I want to throw the heels of the bread away:  compost it.  If I never got around to making rice pudding out of that leftover cup of rice:  compost it.  That lettuce got so bad it's not even fit for the rabbit:  compost it.  It's so satisfying!

So, aside from the usual banana peels and vegetable scraps, here is a list of my most favorite things to compost:  

 Rabbit litter, of course

Laundry lint

Any personal info--it never has to leave your home!

Shedded hair (all species welcome)

 

Sweetner envelopes

Worn-out cotton T-shirts and skivvies (elastic removed)

Q-tips with cardboard stems

Lightly used napkins and tissues

 

Leftover rice and pasta

The lime from the Corona

 

Those are just my faves, because prior to the new hobby they were just curbside trash.  Now, if you'll excuse me, I think I'm gonna get a couple of lime wedges ready to add to the bin.  Big Daddy'll do his part and have a lime with me.  To composting!  To composting!  Cheers!