Sunday, May 29, 2011

A Strange Encounter

A stranger observed the playground.  The scene was perfectly normal and just a little bit odd at the same time.  It was a bit too quiet for a playground filled with so many children.  A nine year old boy walked around the grassy area, away from the jungle gym, his nose buried in a cell phone, uninterested in the play equipment.  His four-year-old sister paced across the jungle gym bridge, dragging the toe of her left foot every third step, and stomping quite a bit more than was necessary.  Her pounding footsteps and quiet mutterings to herself were the only sound.

An older girl, well, the stranger assumed she was older, as she seemed to possess an inner calm not present in the other children, stood at the bottom of the jungle gym, watching her little sister and occasionally taking a swig from her water bottle.  From her position under the play equipment she could clearly hear the younger girl's mutterings, and she would occasionally smile over at her mother as if the little one had said something particularly cute.  The mother was in a swing, a toddler on her lap.  No squeals of glee from the baby as the swing went higher and higher, but his little arms flapped up and down occasionally, as if the child was imagining himself a bird about to take flight.

The observing stranger also watched the only other family at the park.  A couple sitting on a bench, watching their children play.  The stranger noted the tension in their posture.  No smiles.  They were on full alert, although he couldn't understand why.  Their three children were nowhere near the others.  Their oldest little boy, perhaps around age seven or so, was trying to hit a ball off of a tee.  His cries of frustration when he missed were soothed by his father's calming voice.  With determination, he would put the ball back on the tee and try again.  At their feet sat two younger children.  A boy around the age of five, and a girl around three.  They were coloring the sidewalk with chalk, and the stranger couldn't help but notice the intensity of the little boy's concentration.  How he didn't seem to be aware of anything around him.  The stranger might have pondered this intensity, thinking that it seemed strange, but not able to really pinpoint why. He wouldn't have to wonder for long.  In a flash, the little boy emitted a high pitched squeal and ran straight towards the older girl on the playground.  Time slowed to a crawl as the parents flew into action, desperately calling the little boy's name, which he ignored, and running after him, but not in time to stop him from trying to pull the water bottle out of the little girl's hand.

The stranger thought the parents were incompetent. They didn't reprimand the little boy.  Instead, the mother said, "Time to go!" in a voice that sounded cheerful, if a bit forced.  The stranger felt disappointed at the apparent lack of concern for such appalling behavior from a child who was clearly old enough to know better.  He  felt a trill of anticipation, however, when the mother of the wronged child fairly flew off of the swing and ran towards the departing family--clearly, she intended to instruct the other woman on how to properly instruct her thoughtless child. "WAIT!"  she cried, the plea pulled from her almost unwillingly, without premeditated thought.

"Your son...I heard him squeal.  Is he...?"
"He's autistic," she replied.
"Please don't leave because of us," the swing mother said.  Inexplicably, her eyes swam with tears.  She gestured helplessly to the children on the playground.  "Mine are too." The stranger watched as the little boy's mother surveyed the other mother's little girl and oldest little boy as if seeing them for the first time.  He held his breath as her eyes took in the toddler in the mother's arms, who was staring at a patch of grass off to his mom's right, completely oblivious to this new woman in front of him.  "I promise, there's nothing he can do that we would be offended by.  It's really okay!"  There was desperation and pleading and reassurance in her voice all at once, as if what mattered most in the world to her was that this mother and child feel welcome and accepted.
"There seems to be more and more of us," the other mother replied.  "They'll be okay," she said, though whether she was talking to herself or the woman in front of her was unclear to the stranger.  The two women shared a look that transcended words,and he knew that they were at once strangers and sisters, bound together by a journey that few would understand.  Shared experience hung heavily between them for a moment.
"I just don't want you to think that you have to leave because of us."
"Oh, no...We've been here a while.  He must be thirsty."  And with that she walked away.  The stranger watched as the remaining mother resolutely refused to look at the other family, the father struggling to buckle the little boy into his carseat.  They got enough stares from everyone else.

Monday, May 23, 2011

A Man With A Plan

The school district finished their evaluation of 'Bot, and we got the results today.  They qualified him for Special Education.  He lacked one communication deficit from qualifying for the diagnosis of Autism, but they labeled him with Asperger's, ADHD, and OCD. I don't care what they call him, as long as he gets the help he needs!  We will develop an IEP for him over the summer, and it will be in place when school starts next year.  I feel like I've fought a two year war and FINALLY achieved victory!

Wednesday, May 18, 2011

I Need Some Advice

I have a question for those of you who've been through speech delay with a young toddler.  At what point does it go from "stubbornness" to "I can't do this right now?"  My husband held a screaming, crying, tantrum throwing Tugboat for an hour and a half today, trying to get him to make the "d" sound to signify that he wanted down.  Tugboat is capable of making that sound, but he will not do it to signify that he wants down.  The therapist said to make him do it.  The same therapist also said he's just being stubborn.  What do you guys think?  Persevere or give in after a certain point?  Is this a stage? How long does it last?

Monday, May 16, 2011

The Speech Therapist and Tugboat: A Love Hate Relationship

Read the shirt, people.
It started out so well.  When Cynthia, Tugboat's new speech therapist, walked in he walked right up to her and wrapped his arms around her legs in greeting.  I was shocked.  The child doesn't even greet me like that.  He even showed mild interest in the toys she brought with her.  After a few minutes, he ran and got his batteries to bring to her (yes, his favorite toys are AA batteries).  He takes them out of the remote and packs them around until we notice and make him bring them to us.  I took it as a good sign that he brought them to her before he got into trouble.  I figured that must indicate at least a desire for friendship with her. I was wrong.  One hour and at least seven tantrums later, I was left wondering how it went downhill so fast.  Of course, Cynthia took it in stride.  As for Tugboat, he was as happy to see her go as he was when she arrived.

Saturday, May 14, 2011

Tinkerbell's Journey

Today is Tinkerbell's birthday! She's now four years old.  Below is her story, told in verse.

Tinkerbell's Journey

She entered the world in an unusual way,
Sunny Side up is what the doctors say,
And we knew from the moment that we heard that first scream
That she'd be a real diva, definitely a queen.

She'd only let me or my mama hold her,
she gave her poor daddy a tiny cold shoulder,
but after we discovered a milk allergy,
she was as happy as a baby can be.

From the beginning there was something not quite right,
At two weeks old she slept through the night.
She wasn't a baby always wanting to be held,
She could play by herself exceptionally well.

Everyone mentioned what an angel she was,
She didn't pester the sitter for cuddles and hugs.
If another child took her toys away,
She didn't seem to notice, she had nothing to say.

She met all the developmental milestones on time,
Her big brown eyes sparkled, oh how they shined!
We were delighted to hear her talking away,
We were very surprised by the things she would say.

But something went wrong around the age of two,
And mommy and daddy weren't sure what to do.
The happy little girl that they'd known for two years,
Was suddenly always bursting into tears.

This really was more than the Terrible Twos,
She didn't cry about the things that normal kids do.
The broom's laying down--it should be standing up!
The cabinet is open--it's supposed to be shut!

She did not play the way other girls play,
She'd line her dolls up and leave them that way.
She didn't pretend to talk on the phone,
And most of the time she wanted to be left alone.

She liked to spend time opening and closing doors,
And spend lots of time watching shadows on the floor.
Walking in circles became lots of fun,
Up on her toes was how it was done.

And then all those words she'd spoken so well,
Became hard to decipher; her articulation fell.
And finally words starting slipping away,
She couldn't remember them all day to day.

She couldn't answer the questions we asked,
It seemed like she was slipping away so fast,
The precious baby we'd brought into the world,
Was now a very fearful little girl.

She'd cover her ears when the vacuum was cleaning,
Lots of sounds could set her to screaming,
Her tolerance for change in routine took a vacation,
And going to sleep required medication.

And finally we could deny it no longer,
The feeling in our gut was getting stronger and stronger.
Her brother has autism, so could it be true,
That our little girl has autism too?

We decided to take her to a doctor in town,
To have her evaluated and see what would be found.
Seeing the word AUTISM there on the page,
Was a moment I can still feel to this day.

But that's not the end of the story, you see,
That little girl is more than just PDD.
Though she answers to Tinkerbell, she's spunky and tough,
And to overcome challenges, her will's strong enough.

Her speech started improving, all on its own,
And in the past couple of months her imaginative play has grown.
She's coming back from her initial regression,
Her spirit is no longer in a recession.

Purple is her favorite color
And she loves her daddy more than any other.
She likes to clown, she really is a goof,
And her energy level is way through the roof!

She inspires me each day to hang on a little longer,
The struggles you face can only make you stronger.
And when her challenges make me sad,
Her beautiful smile says it's not so bad.

I love you,sweet baby,
You are my heart.
Thanks for the wisdom you sweetly impart.

Tuesday, May 10, 2011

Eyes Wide Shut

Have you ever arrived at a destination only to realize that you don't remember a huge chunk of the drive?  Somehow, on autopilot, you've safely navigated your way, even if you didn't consciously realize what you were doing?  Well, Average Joe and I have apparently been navigating our way through the past year and a half, and we've arrived at destination No Services For Tinkerbell--and I'm okay with that...I think.

I took Tinkerbell for a screening with the local school district last Thursday.  They screened her for developmental delays, and found that despite her need to spin and flap, she is verbal enough and cognitively advanced enough to not qualify for services at this time.  Now, I was really ticked off at first.  I don't believe that a simple developmental screening to determine services for a child with autism is appropriate.  It doesn't take into account the sensory and social issues that make typical classrooms so difficult for autistic children.  Since Tink could repeat sentences, tell what was happening in some pictures, copy most of the shapes, name most of her body parts, and she knows her colors and can count to ten, then she must be totally fine.  However, God slapped me in the face this morning, and I think now that I'm good with their decision.

I was in the cafeteria paying for the twins' lunch, and a code red was called.  Code Red means that the school is in lockdown mode.  The SPED Preschool class was returning from the library when lockdown was called, so the closest place for them to go was the cafeteria.  So, I got to spend twenty minutes with them.  I held hands with a little boy with cerebral palsy who seemed to take an instant liking to me.  I talked with the teacher about Tink and her autistic students.  And I realized while I was sitting there how much of a bubble I sit in.  I don't stop to think about how many kids need services, and I realize that I've been viewing Tink where she was a little over a year ago.  At the bottom of her regression, Tink couldn't answer questions, was terrified of my cell phone, used echo and script about 70% of the time, and threw tantrums at the drop of a hat.  But she isn't in that place anymore.  She has come miles in the past year.  She has regained tons of skills.  Does she still have the challenges of autism?  You bet.  But her challenges are not insurmountable.  And she has two parents who are aware of her needs and are willing to put in the time necessary to help her reach her potential.  She's gonna be okay.  We'll get her into K4 and go from there.  

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