Our “Girlie”

It is not a name I would have chosen. 

Ever.

If I think about it too much, it has the smell of misogyny about it,  in that icky backhanded 1940’s  slang sort of way.    You know where “dame” and “broad” , “toots”, and “doll” were used in a patriarchal pat-on-the-head “you’re so dumb, but cute” fashion.  That is, when they weren’t being used outright as derogatory terms.

I am a “Free to Be You and Me” child of the 70’s.  I am not supposed to take whatever is dished out as acceptable, ‘just’ because I am a girl (woman).  I can do anything boys can do.  I can do ANYTHING!  Hear me roar! Etc. Etc. Etc.

But.  If I don’t think about it, I can handle it.  And.  There’s not much I can do to change it at this point.   It’s sticking.  She responds to this other name as easily as she does her given name.   And I have even found myself referring to her  in this way.   For what it’s worth, and I think a lot, the name only suits her in a contradictory manner.   Ella Rose loves her baby doll, but drops it without a thought for a Hot Wheels car.  She insists on wearing her brother’s old Lighting McQueen t-shirt, making loud car noises in church, and playing in the dirt.

She is a fairly competent wrestling partner for Will and offers up her fist for a bump with much more force than you might think possible in a sixteen-month-old.

Our Girlie’s eyes light up at the sight of a motorcycle and will shout out “boo-doz-ah” when we pass the bulldozer on a walk.  She was a climber before she could walk, scaling the playground ramp up to the top platform without a spotter.  ["has anyone seen the baby?  Oh my God, how did you get up there?"] 

Her spunk is matched only by her ‘art of persuasion’ which usually sounds a lot like Hollering to Raise the Dead, until you find what she wants and hand it over.  To which she will grab, smile sweetly and say “tank yoo”.  If she could wink, I think she would add one in there, as well.

So, “Girlie” it is.  Used in the sassy, backhanded, car-vrooming, knuckle-bumping, eye-winking way that says “I am a child of a child of the 70’s.  I am Grrrl–hear me holler!”

Birth of a Reader

It’s official.  Ben is a reader.

The code has been cracked.  The letter shapes have meaning beyond their names.  Beyond their “sounds”.  The clumps of letters have significance.  They make words!  And the order of the letters in the words is important.  The words are always lined up left to right.  Top of the page to the bottom.   The words represent things.  They’re symbols that can’t be touched, but must be seen in our minds–abstractly.  When it’s all put together using eyes, memory, and visualization, the symbols are combined and coordinated and gelled and processed and it makes perfect sense!

And it happened just like that.

One day he was a pre-reader, the next he could read.

I remember vividly when I first learned to read.  The world just opened up and was available to me in a way it wasn’t just the day before.  Words were everywhere! Words with information!  (The faucet in the tub says HOT and COLD!)  I can remember reading the stop sign at the end of our street for the first time and really ‘getting’ how although I knew it had said STOP before,  it was different now because I could read it.  I understood the sound/symbol code and that those letters put together in that certain way could make a big impact in the world.   Heck, even giant yellow school busses paid attention to that word.

It seems to be just the same for Ben.  He reads everything.  If he were awake right now, he’d be trying to read over my shoulder as I type.  Every street sign (“No parking, mom”), every shelf label at the grocery store (“Pork!  We need to buy some pork.”), every billboard (“That says ‘aquarium’.  We need to go to the aquarium.”), and of course, every book is now brimming with excitement and opportunity just waiting to be read.   Ben’s memory skills serve him well in this area as he has a large ’sight word’ (words you don’t need to encode, but know from memory) bank.  He also does not seem thrown by the endless “rule breakers” found in the English language.  He gets the idea of ‘blends’, ’silent’ e’s, and  seems to accept that C says “keh” and also “sss”, but K only says “keh” unless it’s ’silent’.  He doesn’t know the crazy terms, of course, yet allows for the inconsistencies just the same.

What is also notable, for Ben, is that his new skill opens up so many more ways to communicate and connect with others.  And he already desires to do so.  He tells me what he reads, asks questions, points out words that he sees.  I, in turn, have him read me the pancake recipe, the mail,  the grocery list…  We’ve started writing stories together, composing letters, labeling artwork…  It’s all really really fun. And it provides a whole new avenue for pursuing our RDI goals.

We never used any phonics programs, letter sound videos, or electronic “educational toys”.  For one, they annoy me.  For another, those types of toys can really discouarage a child from seeking out human interaction–not something we needed to promote in our Ben.  What did we do?  We read books.  Lots and lots and lots of books.  We went to the library every week.  We had lots of print all around us–lists, labels, newspapers, magazines, catalogs, letters from Grandma…  We read things aloud, pointed to the words, tracked text while we read, let him sit in our laps while we typed, wrote things together… We also watched some Sesame Street, although it’s contribution to the effort is, although wonderfully entertaining,  most likely negligible.   So this milestone of Ben’s came about the old fashioned way, environmentally supported, naturally modelled, and thoughtfully guided until development buds and blooms.

Hooray!

A “what if” piece that speaks my language

Go here:

http://www.huffingtonpost.com/kim-stagliano/if-the-first-child-had-au_b_159610.html

“If the First Child Had Autism”–Kim Stagliano

Third Birthday!

He is absolutely, 100%, no doubt about it, in all ways THREE. But part of me can’t see it. As precocious as his babyhood was–walking at nine months, saying things like ‘bulldozer’ before he was 18 months–it is often hard to remember Will as an infant. And yet, he will always be my baby in my mind.  I won’t soon forget his birth–the one I did not plan, but that Mark “attended” via his phonecall from Iraq at just the right moment.  My big, ten pound, six ounce baby with cheeks that made ‘chubby’ sound svelte. He remains my must-be-bounced-carried-held-don’teventhinkaboutlayingmedown-to-sleep little guy who gave me such great upper body strength, and helped me lose 20 extra pounds while nursing him.   And my hindsight is perfect when I recall his poor little allergic body (before I gave up dairy)–rubbing his baby legs together to scratch that eczema itch, the night sweats, the back-arching, the baby acne that lasted forever, the troubles with pooping…No, nothing will diminish the memory of that OR my funny, sunny baby with those twinkly brown eyes and constantly revving engine.  Not even turning THREE. 

Happy Birthday Will!

Love,

Mama

Horse Farm field trip

Ben and his dad went on a field trip today to Eden Wind horse farm.  The program was for kids age 4 and up, so this was a solo event for Ben.  Spending one-on-one time with each of the children is something Mark and I have talked about implementing, but never really do.  Today was a good start.  And also, an excellent opportunity for our RDI goals.

Encouraging the development of Ben’s episodic memory is something we try to do as often as possible.  Recalling what we did everyday with emphasis on emotions and relationship is one way we work on this.  Ben usually reports at dinner the events of the day to Mark.  Today, I got to be on the receiving end of the storytelling.   I had to try very hard to give plenty of time and space for Ben to organize his thoughts and speak freely without me peppering him with leading questions or hurrying him to respond when I thought enough time had passed.  What a great lesson for me this was!  Ben had this to say about his trip–before we even looked at the photos Mark had taken.

“Mama, I rode a horse!”

“A black horse”

[responding to Mark]  “His name was Chocolate.”

“I went in a trailer.”

“I was sad.”

“I wanted go in the trailer again.”

“Molly.”  ["Molly?", I ask]  “Yes, Molly the horse.”

“I brushed Molly.”

“I gave Molly a carrot.”  [me:  "You did?"]

“Yes, I did!”  [smiling at my expression] “You’re feeling surprised, Mama?”

“We walked.”

“A grownup talks.”

“There was a grey cat.”

“I rode a horse.”

“I wanted to ride Molly.”

“I was sad. “

“You’re feeling surprised again?” [again, reading my facial expressions]

“I got a horseshoe.”

What things I can learn by controlling my tendency to talk too much!  By not having a complete context to work with, it was easier for me to withhold from “helping” Ben when he retold his experience at the farm to me.  With only my facial expressions as feedback, there was far less ‘echolalia’ or repeating what I said back to me.  There was great referencing while delivering his messages, and after delivery to record my expressions–even commenting on them.

One thing seemed clear, especially after writing down what was said, that we’ll need to encourage more shared memory experiences.  Along with episodic memory, ASD kids also have trouble recognizing their memories can also be the memories of others.  Scientists apparently refer to this development, humorously, as the “we-go” (as opposed to the ‘ego’) where there is understanding of the self as part of a bigger unit –specifically, a dyad with a parent, at first–that co-regulates and is interdependent.

So, here’s the plan of action for Team Parent:

1.  Talk less, listen more

2.  When we do talk, continue to use more declarative language, less imperative language (describing, not requesting)

3.  Encourage ‘we-go’ development by increasing shared memory experiences and storytelling that uses “WE”

I keep hearing a line from my alma mater’s fight song in my head lately.  It often seems like a battle, if not literally than certainly in our own heads,  to remediate the autism, in that a fight song is certainly appropriate.  It’s a three word phrase, and it’s been used recently in a different context that also applies.  Healing, hope, and battle–FORWARD, TOGETHER FORWARD.

Go Huskies!  And go Us!

Lost

We lost Ben yesterday.

We were strolling through the aisles of our friendly neighborhood Lowes, heading towards the paint department, when we realized he wasn’t with us.  A rush of panic shot through me as I backtracked every aisle we had been down recently with no sign of him.  I called out his name, knowing full well he rarely responds to ‘out of sight’ communication attempts.  I hoped if he could at least hear me, he might find some comfort in that.  I started into a little jog-run while glancing down each aisle, whipping my head around, straining to hear (was that his voice calling out?) I spotted Mark at the other end of an aisle and we shared brief and desperate “no” head shakes.  I crammed down thoughts of abduction, police, Amber Alert…tried to stay focused.  And then I did hear him–a single, gravelly, anguished call.  It broke my heart into bits.  With Ella Rose on my back in the carrier, I ran in the direction of the voice.  Then I saw him, doing a running pace in front of the washers/dryers (a favorite spot for opening and closing doors), tears down his face, crying out loud.  More bits of my heart scatter to the ground.  There are several adults nearby.  All ignoring my baby.  The Mama Bear in me wants to claw their eyes out, but there is no time.  Ben is in my arms.

Through sobs, he tells me “I’m so sad, Mama!”  and “I didn’t like that!”  To my inquiry, he elaborates, “I didn’t like that, Mama!” “Up there!” Pointing, “the ceiling!”  Confused, I ask, “the lights? You don’t like the lights?”  “NO!  Up there!”  Ben has word retrieval problems, especially when  he is stressed.  Finally, I guess right, “the speakers?”  “Yes, Mama, I didn’t like the speakers!”  “I’m so sad.  I tripped.  The speakers.”  It finally clicks and I know what happened.  Ben has many sensory integration issues that wax and wane in intensity.  He can be very sensitive to sound, especially loud, unexpected sounds.  I have seen him freak out before to P.A. announcements, yelling as if physically struck and dropping to the floor.  It appears to be a very primal fight or flight reaction to the perceived assault on his ears.    He’s done it just once before, but I know this time is the same–when the P.A. switched on, Ben didn’t just drop to the floor.  He bolted.

Ben is atypical in his autism (how’s that for an oxymoron), in that he doesn’t really prefer to be alone.  He enjoys his solitary play/narration, but only when others are in the room or at least close by.  So, wandering off or running away has never really been an issue we’ve had to worry about with Ben.  I suspect that I am necessarily more vigilant than I think I am in keeping abreast of his whereabouts when we are in public.   I also loosen up the reins a bit when Mark is with us, trusting that between the two of us we’ll be able to maintain connection.

I had noticed earlier on in our outing that Ben was feeling a bit sound sensitive,  when he turned quickly to find and meet my eyes when a saw started up at the other end of the store.  “It’s just a saw, Ben.  Are you feeling nervous? “  ‘Nervous’ is the best word we’ve come up with to describe the anxiety Ben feels.  It’s an inadequate descriptor, I’m sure.  Multiple systems are involved with Ben’s sensory issues–ears, eyes, balance and coordination, tactile sensitivity–they compound to create a not-so-safe feeling about his body in the world.  On a Bad Day, Ben is overly loud, angry, and quick to tears and tantrums.  Bad Days are when I am most vigilant on keeping Ben close.  It’s usually not hard, as he often insists on being right near me, if not *on* me while being carried/held.  Today, however, was not a Bad Day.  Other than the worried glance about the saw, Ben was happy, calm.  The complete opposite child we had with us on our last trip to Lowes who was one loonnnnngggg meltdown from entrance to checkout.  And we commented on it–how Ben was feeling good today and how different a kid he was from the last time.

It is why losing him yesterday has *me* feeling off-balance.  Bad Day behavior has been my indicator to up my watchfulness, to keep my reactors primed.  It’s like lightning in the distance foreshadowing an impending storm.  What happened yesterday was a cloudburst on an otherwise sunny afternoon.  And we were caught without our umbrella.  It is not just that I was found unprepared.  What is most unsettling is that it happened at all.  My assumption was that a happy, calm Ben meant that his nervous system was aligned, functioning well, and delivering correct sensory feedback to Ben’s body and brain.  Well, we all know what happens when you assume…

I don’t have much more to go on than observation as to how Ben is feeling.  Ben does have lots of language.  Tons of language for a kid on the Spectrum.  The application of all this language, however, leaves us somewhat wanting, of course.   Bodily sensations are difficult for neurotypical children to describe.  For Ben, it is almost impossible.   I can’t possibly know what it’s like to experience a typical, everyday noise as sharply painful enough to drop to the floor, cry out, or flee.  What vocabulary could I teach him to express feelings I can only imagine?  What could his perception of the world be like when he panics if the shopping cart rolls without my hands on the bar, when he blinks repeatedly and rubs his eyes when the lights are too bright, when he ever-so-lightly holds the sand shovel with his fingertips, while curling his fingers around too-sensitive palms?

Anxiety and it’s necessary expressive behavior have been guideposts in parenting Ben.  Without them, I am a bit rattled.  I do not wish my child to be anxious, of course, and yet I wonder what has changed.  Is he better able to manage the barrage of sensory data?  Does he have a higher threshold of input before he loses control?  Was he as surprised by his reaction to the P.A. announcement as I was–caught without his umbrella? And also, how do I navigate the potential wind and rain that arrives without warning?  Is this a development on our road to recovery, or a roadblock on that path?

I am certainly not the first mother to have become separated from her child in a store.   And Ben is absolutely not the first ASD child who has overloaded and run away.  Like those before us as well as with us now, we will adapt and learn and grow.  It is a timeless theme.  The beauty of being lost is that the only resolution is to be found.

Disney for a Day

This is a backtrack post.  We took a day trip to Disney World  back in September while in Jacksonville for Ben’s RDI re-evaluation.   I talked Mark into the trip using my powers of persuasion.  Mostly, I just explained how CHEAP this day was going to be.  “Cheap would be not going at all,”my love reminded me.  So, I revamped my plug by explaining how much cheap-ER this trip will be than all. other. trips. EVER.    Captain Frugal is intrigued.  He knows what sort of magic a bargain shopper like myself can create.  So I laid it out for him like this:

1. Military discount tickets, non-refundable option (turned out we were also given the FL resident discount–yay.)
2. Ella Rose and WILL are both FREE (under 3)
3. no Orlando accommodations needed, as we were already staying at the awesome oceanfront NavyLodge in Jax
4. one day–one park (Magic Kingdom)
5. Our wacky diet (SCD) makes virtually all over-priced park food forbidden.  We packed our own.
6. The kids will LOVE it.  (They did.)

As an unexpected surprise, while eating our packed lunch under a tree, a park employee approached us.  I thought “uh oh, we’re busted for bringing in our own food”  Even though I had the whole food allergy speech ready to fire, I was not looking forward to a conflict.  As it turned out, it’s the Year of a Million Dreams (or something) and he chose our little family to receive one.  Yippee!  He figures out how many are in our party, gets out his little form, then asks which “dream” item we’d like to have–

Five free popcorns?  Um, no.  (SCD illegal)

Five free ice creams?  Wah!  No.  (Really SCD illegal)

Then five free sodas?  Strike three!  So sad!

I tell him we can’t have any of those things, he shrugs and says, “you can always get water.”  And, so, we did.  It was a very hot day, and we had run through our own supply fairly quickly.  The boys got a kick out of the ‘grown up’ bottles, and I splurged and bought them Mickey straw toppers for their one souvenir.

Our only other purchase was a set of ears for Ella Rose (13 bucks!).  The grand total for the day was twenty-two dollars.  Not bad!

Less the gas money, of course.

And 12 dollars for parking.

And staying one more night at the NavyLodge.

And the stroller I bought at the resale shop to avoid the rental fee for a Disney stroller (30 bones they charge!)

And the fast food we stuffed our faces with on the ride home while the children were sacked out in their carseats…

Ah well.  So, maybe not the cheapest trip EVER.  But pretty darn close.  Pretty Darn Close.

First Birthday!

I just can’t believe it has been a year since Ella Rose’s birth.  Our baby girl is nearly a toddler.  Good thing she’s still bald, it helps me remember she’s still a bitty baby yet.  She’s also not walking yet, and that’s a good thing for me.  She’s a fast crawler, but I can still keep up with her.  As long as the boys close the door to the garage.  Because if they didn’t, she might crawl right on out into the garage, through the maze of bikes, chalk, rockpiles, and garden tools and plant herself in the dirt and grass of our front lawn.  She might.  I don’t know if she would, of course, because I am a Good Mother who is always aware of my children’s whereabouts.  I would never ever get too involved in dinner prep to realize that I hadn’t heard the baby recently, lookand run around frantically OH MY GOD! WHERE IS THE BABY?? WHERE DID YOU PUT YOUR SISTER??  I would also, always believe my 2 year old when he tells me “she’s outside, Mama.” And I would not waste another 45 seconds checking the bedroom one more time because the baby wouldn’t really go outside alone.  That particular scenerio would just NEVER happen around here.  No sir.  Not this house.  Not this Mama.  Glory be and Lord have Mercy.

And, so, yes, I am quite content with the pre-walking Ella Rose.  Who is ONE YEAR OLD today.

Happy Birthday Baby Girl!!

Bad Haircut

Neglect of my locks created a big bushy beast that needed help.  I was waaaaaaaaaay overdue for a haircut.  Having yet to find a salon/stylist that I really like, I just located a nice sounding place online near our house.  There were even a couple reviews written about other people’s positive experiences there.  So, I booked it.

The salon was decent enough, although a bit dated.  The word “tacky” entered my mind not a few times while getting the “tour”.  OH yes, there was a tour.  Before getting shampooed, my stylist insisted on showing me around–the nail section, the product lines, the massage rooms, the pedicure baths (“we wash and disinfect our tubs after every client!”), the “scent bar” where you can choose your massage oil scent…

My stylist (let’s call her “Lola”) was not overly chatty.  This is good.  I hate small talk with strangers.  We determined I needed my hair to be short and easy to deal with because I am too busy with three small children at home.  And *that* may have been my first mistake.  Lola shares that she is also a mom of a three-year-old.  Oh how I wish that is where this conversation ended.

Parenting is just not a good “small talk” subject for me.  I have opinions on the matter.  They do not seem to be the prevailing opinions of our culture.  As a teacher, I was taught, and encouraged to believe that there are three ways to parent:  Be Authoritarian.  Be Permissive.  Be Something InBetween.  (they call it Authoritative, but doesn’t that sound just like Authoritarian?)  My hero, Alfie Kohn refers to this as “goldilocks thinking”–it’s not too harsh, it’s not too soft, it’s juuuuust right.  I find this paradigm to be completely and utterly useless.  What I have found, in addition to Alfie’s fabulous book on the matter, is what is underwhelmingly referred to as Positive Parenting.  It’s also been dubbed “gentle discipline”, “grace-based discipline”, “connection parenting”, “attachment parenting”, and my favorite “get-off-your-butt parenting”.  In very simple terms, it goes like this:  Children are people.  Children deserve the same respect that other human beings enjoy.  Positive Parenting is non-punitive.  That’s right, no punishment.  No time-out, no “naughty chair”, no “logical consequences”, and it shouldn’t even have to be said, but here it is just the same, no spanking.

Now I get that most people have a hard time believing that what you’ll get without punishment is not a whole lotta chaos and “untamed” children.  There is definitely little in our culture that supports the idea of respecting children, and to get what that means took a lot of reading on my part and a journey that started back before children when I found Alfie’s articles for teachers.  But, now that I’ve “seen the light”, I have a real difficult time with the ‘conventional’ parenting/discipline methods that surround us.  I actively avoid all mainstream parenting magazines, websites, books.  I can’t even sit through a commercial for “Super Nanny” or whatever it’s called.

I’m going to add in here my disclaimer, although it should just be a given, that I am not a perfect parent.  There is just no such thing.  I am human and on a never-ending journey–always learning and growing–just like everybody else.  That being said, HITTING CHILDREN IS ALWAYS WRONG.  I won’t say more about this as there is plenty of evidence of this Truth, not including the fact that hitting children is ILLEGAL in most other countries of the world.

So, back to the bad haircut.  Lola does her thing.  snip snip, comb, cut.  She talks about the other stylist and her trip to Europe (“or Paris..one of those places”).  Then, she pauses, and starts in with how she’s finally read this great book that everyone has recommended to her.  I will not plug his book here, nor even mention his name (let’s call him Dr. D).  Lola begins to tell me all of the great advice she’s gotten from Dr. D.  How she used to spank and give her kid “pops”on his hiney, but Dr. D says when spanking you should never use your hand… I’m bug-eyed and panicked at this point.  I don’t want to hear what the alternative is.  She gives it to me anyway, and goes on to describe how all she has to do now is threaten her three-year-old with THE PADDLE.  Eeeek!  Get me out of this chair!  My non-response (and desperate clutching) should be a clue to change the subject, right?  But now Lola is looking at me expectantly.  She’s asked me a question.  “What do you do to make your kids listen?”  OH MAN, can this get any more uncomfortable?  So, I say the first thing I think of, “well, I don’t hit them.”  “Really?”  she says sincerely, “not even a little pop?”  “What do you do then–time-out?”  “Um, no.  No time-out.”  She’s stumped.  “Well, what DO you do?” she asks (and really nicely, I should add.)  “Well, I talk to them.  And when they’re doing something they shouldn’t be doing, I give them something else to do.”  “Huh!”  she says.  Clearly the idea of redirection wasn’t in her current box of parenting tools.   Lola goes on and on about how it’s really “worked” for her, and how her little one jumps when she tells him things now.  Ugh.

During this exchange, Lola continues the haircut and aks me several times if this or that is okay, if I prefer things one way or the other.  I haven’t heard a word of it.  I smile and nod and say “sure” and “great”–whatever it takes to get her to finish so I can escape.  I even end up with two bottles of product I don’t need in my lame attempts to get her to stop talking and let me out the door.  And the best prize, of course, is my horrible new haircut.  I hazily remember her using a phrase like “short, but still feminine here in the back”.  It sounds eerily similar to “business in the front, party in the back” in my mind.  Husband confirms it.  I have a mullet.  How’s that for injury with my insult?

Blueberry Picking

You might remember back in March we went strawberry picking. We had so much fun and the berries were so good that we went back several times to restock. Well, we’re a bit late in the game for blueberry season, apparently, as Myers’ Farm might call it a season before next week. Boo hoo. Although, as it turns out, blueberries (at least in the quantities that Will consumed–think handfuls at a time shoved and smeared all over his cheeks) are a bit too digestively advanced for his tender, toddler tummy. Too much information? Ah well. It’s one of those duties they forget to put on the job description for parents–Poop Patrol. But, I digress. Let’s just look at blueberry picking photos. Happy happy children, (almost) organic blueberries, a bucket-like box that didn’t “kuplink” or “kuplank”, but definitely “kuplunked”. ‘Huh?’, you say? Go read Robert McCloskey’s Blueberries for Sal.
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