Crazy Elephant Stories

My younger son receives Occupational Therapy (OT) in school each week.  He has alot of sensory issues, gross and fine motor skills to develop, and of course tons of energy.  His school OT is a good professional and very creative.  She makes him work hard too - which he doesn’t always appreciate .

At the last IEP meeting, the OT tells us the following story…

The OT, in preparation for our son’s session, “messes up” her room, turning chairs over, moving desks, taking books off the shelves and putting them on the floor.  She does this so that she can ask our son to put everything back when he first gets to the room.  This gives him some deeper sensory stimulation and helps him calm and focus himself for the work ahead.

Our son, walking into the room, says “What happened!  Why is the room so messy?”

The OT tells him that an elephant came through the room and moved all sorts of things around - she needs his help to clean up.  Our son, suspicious that an elephant didn’t reallycome through her room, but willing to play along, gives her a look and then starts to put things back where they belong.  After half-a-minute he stops, cocks his head, and says “I have something to tell you about the elephant and how he came to school to mess up your room.”  Clearly he has concocted a story to help explain this strange occurance.

The OT, wise to my son’s story telling stalling techniques, tells him that now is not the time to tell stories, now is the time to work.  My son tries again with no success.  Eventually the room is put back to rights and they begin a more traditional exercise.  My son is a bit perturbed but settles in.

At the end of the session my son is preparing to leave the room to go back to his regular classroom when he turns at the door.  “I want to tell you a story,” he tries again.  He is determined to tell a story!

“What about?” she asks.

He pauses for dramatic effect then raises his eyebrows.  “About the CRAZYOT,” and placing hand on hip he grins and says “and YOU are the OT!”  Satisfied that he has made his point he flounces out of the room (as best as a first grade boy can flounce) and makes his way back to his classroom.  At this point in the story we all laugh, shake our heads, and agree that our son has quite a personality and flair for the dramatic.

Thank you to all of the crazy OTs and STs and PTs who work with our crazy kids and us crazy parents.  We couldn’t get through this without you.  Thanks for pushing us a little farther so that we can all achieve our best - especially when the elephants charge through our lives.

Hallmark Untaps New Market? - Autism Greeting Cards

Ever walk through the greeting card section in your local mega mart and wonder…  With Autism diagnosis rates increasing, could there be a new angle for the greeting card industry?  Shouldn’t there be greeting cards to reflect this significant part of our lives?

Sympathy cards: I’m so sorry your child was just diagnosed with autism…

I Love You: I love you, Mom, even though I’ve never been able to tell you in words…

Anniversary cards: It’s been a heckofa year since your child was first diagnosed…

New Year’s cards:

- Another year, and your kid is still autistic???…

- Another year, and your kid still isn’t potty trained???…

IEP Thank you cards: Thank you for all of the double-talk, confusion, and aggravation from our last IEP meeting…

Congratulations cards:

- Now that you’ve spent your life savings on therapies and are entering bankruptcy we didn’t want this important milestone to pass without saying congratulations on destroying your credit rating…

- Congratulations on sleeping through the night!

Thinking of you cards: I know you never get to go out with your friends anymore, but we’ve been thinking of you and wish you were here…

Extreme Makeover cards: You and your life are so totally different now that you have a child with Autism… what a makeover!

Alas, none of these would take away the pain that comes with a diagnosis, but I sure could use these once in a while!  What other ideas are there for a new line of greeting cards?

What is Dinah Doing?

You know how you can get song lyrics wrong?  You know how funny it is when someone else does it?  Take my younger son, who insisted that this little ditty was the “correct” set of lyrics to a section of the kiddy classic ”I’ve Been Working On The Railroad”… 

“I’ve been workin on a railroad, all the livin day!

I’ve been workin on a railroad, jus a bass a dime away!

Can ya hear a wiffle owin, aye uh a eary ih a born!

um a uh uh uh uh uh dah, Dinah bow ya born!

Dinah Warsh and Blow,

Dinah Warsh and Blow,

Di - nah Warsh and Blo - o - ow!”

Rather than working on the railroad, I think Dinah opened the west’s first Cut’n'Curl Beauty Salon… but that is a whole other post.  Peace to all out there!

Acronyms and JACK

If you are a parent of a child with a disability, you probably participate in a number of on-line discussion groups, email lists, etc.  If so, then you probably have seen parents sign their emails with a list of their children’s diagnoses… often in the form of acronyms.  With some of these kids’ complex medical conditions and learning disabilities, it can look like alphabet soup in the signature!  In fact these many acronyms get to be so familiar - like our own little special needs language where vowels are rare but consonants abound… but I digress.

One parent recently shared a funny story…  On one of these lists, some time ago, there was a parent who had three children.  Two of her children had several dx (a.k.a. diagnoses) and one was what we call NT (a.k.a. neurotypical).  So her signatures looked something like this:

“Beth, proud mom of:

Simon - ADHD, CHD, DS, NLD, DD, HI

and Jordan - HFA, SI, SLD, IBD, OCD”

(Which, BTW translates to “Beth is an amazing mom of Simon who has Attention Deficit Hyperactivity Disorder,  Congenital Heart Disease, Downs Syndrome, Nonverbal Learning Disorder, Developmental Delay, and is Hearing Impaired and of Jordan, who has High Functioning Autism, Sensory Integration Dysfunction, Specific Learning Disability, Irritable Bowel Syndrome, and Obsessive Compulsive Disorder)

To take it even further, some parents even include the acronyms of the various therapies and assistive devises they use to help their child, but I won’t give an example here since that would just be waaaayyy too much fun.  So anyway, back to my story…

This mom of three had an NT son as well and so, one day, she included in her signature a fourth line that read “and Robert - JACK” 

JACK?  No one had ever heard of that one before.  Was this some new exotic disease?  The parents just had to ask her what this new diagnosis acronym was.

She responded that her NT son felt left out when he saw these signatures and wanted his name on the signature too.  So she gave him her own diagnosis acronym: J. A. C. K. = Just a cute kid!!!

You can imagine the conversation that ensued in that discussion group.

To all those with JACKs and with the whole alphabet soup in their signatures - Peace to you all!!!

My Unfavorite Things

Here’s a song by Jessadriel Darkmountain (to the tune of “My Favorite
Things” from the Sound of Music):

My Unfavorite Things

Bright clashing colors, machines that keep beeping,
Phones and alarm clocks that ring when I’m sleeping,
Getting told off when I’m scattered or late,
These are a few of the things that I hate. Tags in my clothing and seams in my stocking,
Those who say “teasing” when really it’s “mocking”,
Fluorescent flicker and noises that grate:
These are a few of the things that I hate.

Too many people in too small a room,
Vile reeking chemicals mis-named “perfume”,
Voices too loud and weird food on my plate,
These are a few of the things that I hate.

Being expected to follow the fashions,
Not being able to share my true passions,
People who bitch when I perseverate,
These are a few of the things that I hate.

Indirect questions and vague explanations,
Having to smile when I’m losing my patience,
Looks of disdain if I stim while I wait,
These are a few of the things that I hate.

When my hands flap, when my voice fails,
When I’m meltdown-mad,
I simply remember - I could be NT (ack!) -
And then I don’t feel so bad!

© 2/10/04 Jessadriel Darkmountain

(Per Jessadriel: “Feel free to send it around wherever you wish, as
long as my name stays on it.”)

Artism Is Beautiful

I found a site that I wanted to share with you all - Artism by Nick  (see http://www.artismbynick.blogspot.com/ )  This site gives people an opportunity to purchase note cards with original art by Nick - a teenager with Autism.  He will create custom cards for any occasion (samples pictured on the site) that can be used as invitations, thank you cards, birthday greetings, etc.

This site really got me thinking…  about art and about how my son (with Autism) could potentially support himself as an adult.

I loved this and couldn’t wait to share it with you.  I have no ties to Nick or his family, but love the designs and am thinking of placing an order myself.  Please let me know if you’ve had any experiences with Artism by Nick so I can share with our kind readers.  Please visit his site and let me know what you think!

Autism or Austentism?

Our family lives with obsession.  We have a child with Autism–enough said, right?  He is obsessed with animals and tiny tiny things… like tiny beads, tiny pieces of confetti, or, well, tiny animals. 

We all have our obsessions, I have found.  Each of us, in our turn, has something that “turns us on” to the point where we can, if we let it, perseverate and obsess and just plain wallow in our chosen joy.

My husband, for instance, like most Southern men, is obsessed with Football.  My older son is obsessed with sports and SportsCenter on ESPN.  My younger son, as I mentioned, finds his joy in animals and tiny things.

And me?  Sigh…  I am not above obsession.  I have to admit that I too am obsessed.

I am obsessed with Jane Autsen. 

Persuasion, Mansfield Park, Sense and Sensibility, Pride and Prejudice, Emma, and Northanger Abby… Jane is my escape.  Through her writings she allows me to relive the decisions made in my early twenties.  She allows me to explore feelings and rationalizations and moral questions… the senses and sensibilities, I guess.  I recently took joy in reading and re-reading Pride and Prejudice to the point where I have been pondering my own parallels to Mr. Darcy and Elizabeth and even, I must add, to Mrs. Bennet.  I even added a “Which Jane Austen Character Are You” quiz on my facebook page.  This is scary. 

I believe the official diagnosis is that I am a “Janeite”.  But that seems such a plain-sounding diagnosis.  I am starting to think of it as “Austentism”.

Just how far does this go?  Well, let’s see.  I have been faithfully following the recent US Masterpiece Theater Jane Austen Revival on PBS.  I have watched the interviews with the producer and actors on PBS.org.  I took the “which one is your man?” quiz, also on PBS.org (not telling which one I prefer :)).  I have watched just about all of the movies ever made based upon her works (my favorite?  The 1995 BBC version of Pride and Prejudice with Colin Firth and Jennifer Ehle, of course, but the Bridget Jones’ Diary series is also a favorite as a “loose translation”).  I just rented “Becoming Jane” and loved the theory it presented about how Miss Jane Austen may have gained the life experience reflected in her works (such a fresh yet plausible story).  I have her books and books by authors who wrote sequels and books that tell the stories from an others’ (usually the man’s) point of view.  I have the soundtrack to the 1995 BBC version of Pride and Prejudice on my iPod.  I’ve read through (and reference) www.Pemberly.com  quite often (see link in the sidebar).  I’ve looked up patterns for the dresses and accessories that were worn and referenced in her books.  I even have a book titled “Jane Austen’s Book on Manners” and have thought about getting a cookbook that is now out with recipes for things that are mentioned in her books.   Like a drug addiction, I crave them and want more. 

Forget scary - now that I am writing this all down I realize that my addiction is… REALLY scary!

If my powers of concentration were better, I’d be able to ignore the dishes (ok, I am already pretty good at ignoring the dishes), and the kids’ homework, and the latest report demand from my boss, and just submerge myself in my passion.  Perhaps that only comes in the most advanced stages of obsession… or in Autism…

Did this come on after prolonged use of Teflon coated pans heated above 450 degrees?  Vaccinations?  Mercury poisoning?  A genetic predisposition?

Can I be cured through diet?  Chelation?  ABA?  Hyperbaric Oxygen Therapy?  Vitamins? 

I hope not.  I’m having too much fun!  

Church Musings

My younger son is so verbal.

Sometimes we wonder why we ever taught him to speak (and then - why he speaks so LOUDLY). 

During the sermon while in church he pipes up with important questions like - “Mommy, why do your boobs hang out your chest?” and “Why is Pastor so old?”

As we walk up for communion/blessings he’ll ask ”Why do you get snacks and I don’t?” and, with wide eyes, referring to the communion wine, “Is that real BLOOD in there?”

Our favorite was when, during the sermon he called up to the pastor… “Are you done talking yet?”

A Budding Novelist

My youngest has had a school assignment to write a story.  This will, in a few weeks, be “published” in book form.  The little authors will have a class party where the parents are invited and the authors read their stories in front of everyone.

We’ll cross the reading-out-loud-in-front-of-everyone bridge when we get there.  We had to get through writing the story first.

Now let me make this clear up front.  My son has no problem making up stories.  He’s actually quite good at coming up with ideas and events to put in stories - quite an active imagination.  But we often are left wondering where he gets his, shall we call it, inspiration.  Sometimes his stories even ”inspire” questions from others about our home life - sometimes funny questions, sometimes not so funny.

We drafted his story this last week.  He would get going telling his story and I would type out his words.  I asked a few questions to get some more detail and we ended up with something like this…  There’s this Crocodile whose dinosaur friends are all dead, his parents are dead (this is where it turns into a Disney classic), he doesn’t know what to eat but does know what can eat him…  (okaaaay…)

He moves to a new lake where there are no Raccoons, Snakes, or Birds… and is trained on the Tuba and plays in victory parades.  (Tuba?  Where does this come from?  We don’t know anyone who plays the Tuba… Right after my younger son says this about the parade we have to shush our older son who tries to point out that crocodiles do not have the lip structure to play horn instruments.  After all, we tell him, we’re being creative.)

Eventually the Crocodile (whose name is actually “Crocodile” in case you were wondering) finds his parents (who aren’t dead after all, they just moved to a different lake - which turns this from a Disney movie to a twisted and dark commentary on child neglect, but thank God we’re… I mean they’re… still alive) and all live happily ever after.

I don’t want to change his story (although we did make some gentle suggestions), but I am curious as to what sort of looks we’ll get as my precious lovey (who, for the record, we cherish and love very much AND who we’ve never left at a lake, never starved, and always brought with us when we moved to a new house) reads his story to the rest of the class.  Should we expect a call from social services…

Or negotiate a contract with Disney?

Hide and Seek… and Thoughts of Divorce

My youngest son doesn’t answer to his name.

Or at least, now he only occasionally answers to his name.  We keep working on it.  It goes something like this:

Mommy is in the kitchen, washing dishes, while her son, X, is playing in the living room (she thinks).  Mommy looks up from her suds and notices that X does not appear to be in the living room.  She calls “X!” then listens.  No answer.  She calls again “X!” and cocks her head, straining to hear any movement, rustle of clothing, footsteps, anything to indicate that another living soul is in the house.  When she hears nothing, she checks behind furniture, the bathroom, then goes to the front door and calls again “X!”.  When nothing responds she goes to the back door and again calls “X!”  In a bit of a panic she runs out into the back yard and again calls “X! X!  Where are you?!?!”  The neighbors come out of their houses (Mommy has a good set of pipes on her - she could signal in fishing boats in a dense fog) and offer to help look for X.  Mommy goes back into the house and, a bit shaky at this point, calls one more time “X!  X!  What do you do when Mommy calls ‘X!’?”

“Here I am Mommy,” he calmly says while crawling out from behind the sofa.

Now - I know there are smug parents out there thinking “Why doesn’t this Dodo-brain just say “X!”   “X!”  “What do you say when Mommy calls X?” the first time?  You see… this would make sense.  But remember… this is AutismWorld we’re talking about - where rules are changing and the only consistency is inconsistency (it is a game that will likely not be marketed by Hasbro or Mattel anytime soon).  Apparently we first must call and call his name repeatedly, then ask “What do you say when Mommy calls X?” (requirement is that this phrase is usually only valid when we begin to sound hysterical) before he will respond to this latter phrase.  

This was recently tested during a holiday shopping trip to WalMart where first my husband disappeared somewhere around the pharmacy section (without alerting me as to where he was going), then my older son wandered off near the bike rack (”Stay in this section or come to us in Toys when you’re done,” I told him), and then my Autistic son disappeared while I was checking in what country the supposedly lead-free toys were made.  I started calling out his name.  And let me tell you, after the first unanswered calls - those “pipes” kicked in.  “X!  X!  What do you say when Mommy calls X?” 

My older son came running.  Five other Mommies offered to help us find my younger son.  After 5 minutes of searching the management shut the store exits down (my apologies to the WalMart shoppers out there).  The tears started to spill down my cheeks as true panic kicked in.  We jogged down aisles calling “X!  X!  What do you do when Mommy calls ‘X!’?”  Employees checked restrooms.  Pages flew across the rafters.  And then, another 10 minutes later, an employee ran up to me and said “I think we found him!” She led me to an aisle where my son was happily sitting in a corner next to some paint rollers (one aisle away from the toy section).  He looked up and said “Here I am, Mommy!”  I held him until my shaking stopped.  After a while, we stood up and started to walk toward the exit - all thoughts of Christmas shopping having fled.  That’s when my husband strolled up.  “We found him!” I said with a weak grin.  “Oh, that was you that caused that ruckus?” he asked.

No wonder there is such a high divorce rate in AutismWorld.

My son’s behavior reminds me of one of those funny stories that circulates occasionally on the internet.  I’ve copied it below for you:

Why Parents Drink:
The boss wondered why one of his most valued employees had not phoned in sick one day. Having an urgent problem with one of the main computers, he dialed the employee’s home phone number and was greeted with a child’s whisper.
“Hello”
“Is your daddy home ?” he asked
“Yes”, whispered the small voice
“May I speak with him?”
The child whispered, “No”
Suprised and wanting to talk with an adult, the boss asked, “Is your Mommy there?”
“Yes”
“May I speak with her?” Again the small boice whispered, “No”
Hoping there was someone with whom he could leave a message, the boss asked,
“Is anyone else there?” “Yes”, whispered the child, “a policeman”
“May I speak with the policeman?” “No, he’s busy” whispered the child
“Busy doing what?” “Talking to Daddy and Mommy and the Fireman” came the whispered voice.
Growing more worried as he heard a loud noise in the background through the ear piece on the phone, the boss asked, “What is that noise?” “A helicopter”, answered the whispering voice.
“What is going on there?” demanded the boss, now truly apprehensive.
Again, whispering, the child answered, “The search team just landed a helicopter.”
Alarmed, concerned and a little frustrated the boss asked, “What are they searching for?”
Still whispering, the young voice replied with a giggle, “ME”

Peace to you all, and may you always find what you’re looking for!