Fly by Fragments

Does anyone else feel like this week has just flown by? Why is it that some weeks drag on and by Tuesday you feel like it should be Friday and others seem like the days are passing in a millisecond? Guess if I had the answer to that, I'd be some Nobel Prize winning physicist or something smart like that.

What I do have is fragments and a link to Mrs. 4444's Friday Fragments. Those little bits and pieces of thought that are taking up space in my head, put out here for you to enjoy and me to finally put to rest.

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Heading back to work after a week off was a good thing. I really like the people I work with and generally like the work I do. Plus, I can only take so much iCarly and South Africa FIFA soccer on the PS3.

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The dog is good. So far, it was a good decision. She and Robbie are having a great time playing tug of war. She loves to play and it's good, deep sensory input for him.

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I don't normally work on Fridays, but I had to go into the office today because we're hosting a big conference and my boss asked if I could put all the speakers' presentations into one continuous PowerPoint. I did it yesterday just fine.

This morning, there were no technical difficulties. But there were three speakers who came in later than expected, who were having a heyday chatting it up with each other and who decided to change their slides at the last minute. I didn't really feel like I could be too pushy because I'm just a girl with a bachelor's in journalism and these folks are all PhDs, well known in the field of physical therapy and rehabilitation. One of them was a neuroscientist for crying out loud!

Nothing to get your heart pumping like trying to merge 4 presentations into one, save it on the flash drive, run it backstage and save it to the computer attached to the projector all while introductions are already taking place!

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Friday night is Family Movie Night at our house. Tonight, instead of a movie, I want to watch the episode of Wipeout I recorded earlier in the week. I don't know why, but I love that show! Maybe that's what I should do for my 40th birthday -- try to get on Wipeout.

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I think that's all I've got for today. Hope it's a great weekend for everyone!

Not quirky enough

A few weeks ago, I wrote about my reservations regarding Robbie's upcoming school conference and how I worried that he would be saddled with some label that he doesn't deserve. That conference was postponed by a snowstorm. Then my frolicking travel schedule got in the way of re-scheduling. Today, we finally met to discuss my little cub.

I arrived at school feeling nervous and defensive, fearful that these professionals who'd only spent 30 minutes or so with my son would try to tell me something that I knew was not right. So I said a little prayer, asking God to help me remember that we were all there to look out for what is best for Robbie and what we can do to help him be successful in school.

As we went around the table and each evaluator had her say, I heard a lot of what I already know. "Difficulty attending to tasks." "Does better in one-one-one situations." "Likes the attention of being the class clown."

Some things were shared surprised me, including that he is within acceptable limits in language expression and comprehension. We all got a chuckle when the director of the school resource center said that when Robbie is working with a resource teacher and is asked if he is working hard, he answers honestly.

"Robbie, are you working hard?"

"No. Not really," replies my truthful George Washington.

His most significant deficits are in the area of fine motor skills, though the occupational therapist indicated he might need some work on his core strength. She recommended that he receive OT services.

"Ok," I thought. "That's a start."

But not so fast. Turns out that occupational therapy is considered a "related" service and is only available to students who qualify for academically-linked services. Apparently, fine motor control -- which you need for coloring, writing, and cutting among other things -- is not considered critical to academic success.

So we continued the discussion and went through an "Autism Spectrum Checklist," which he "passed," indicating he does not have enough characteristics on the autism spectrum to qualify for services through the school.

And suddenly, I found myself at once both thankful and frustrated. Thankful that he does not fall onto that spectrum (which was confirmed by another evaluation by the children's hospital last year) and frustrated that, despite the clear recommendations that he needs some level of service and intervention, he isn't "quirky enough" (my words) to qualify for it. Actually what the evaluators said is that our state guidelines don't include services for kids with sensory processing disorder. Anyone have the energy to take on that legislative agenda?

My hopefulness that the conference would lead us to some useful services for him evaporated right in front of my eyes. That's the point at which I started crying, which just made me mad. I had promised myself I wouldn't do that.

The conference ended ok. The resource director said they would start implementing some of the evaluators' recommendations. The occupational therapist offered to meet with us separately to give us some suggestions of how to work with him at home. But I couldn't help but feel disappointed and, quite frankly, emotionally exhausted.

Of course we'll investigate other avenues for assistance, although going through the school would have been easier on our schedule and cheaper. But you can bet we'll do whatever we need to for our quirky little cub.

Looking out for my cub

It's not even 7:30am on Sunday morning and my Mama Bear is already on high alert. I just completed an assessment sent to me by the township school district psychologist for Robbie. We're working on getting some services for him at school, including occupational therapy and some reading support services.

Our conference with the team of assessors from the school district, our school's resource director and Robbie's teacher (both of whom have been very helpful this year) is Thursday. So I sat down to complete the assessment and immediately felt my defenses go up when I saw the title of the form: "Asperger Syndrome Diagnostic Scale."

We have already had him tested thoroughly at the very highly regarded children's hospital here. They determined that he does not have autism or Asperger's and gave him a vague diagnosis of pervasive development disorder-not otherwise specified. Which, I think, in the era before every behavior set had a label would have just been considered "quirky."

But because completing the form is part of getting him the services, I forged ahead. And let me just tell you if you have never had the privilege of completing one of these assessments regarding your child, there's nothing like one of these forms to make you feel like your kid might be a freak:

• Talks excessively about favorite topics that hold limited interest for others (Hell, I do that!)
• Exhibits few or inappropriate facial expressions (Robbie doesn't do this, but isn't that what's made Jim Carrey millons of dollars?)
• Frequently becomes anxious or panics when unscheduled events occur (He gets that one from his dad.)
• Lacks organizational skills (Hey, the apple doesn't fall far from the tree.)
• Displays an unusual reaction to loud, unpredictable noises (Is that so unsual for a small child?)
• Has a restricted diet consisting of the same foods cooked and presented the same way (So he likes chicken nuggets and baloney.)

The survey then goes on to say "At what age did the unusual behavior begin? Does the unusual behavior occur in all settings?"

And I'm sitting here thinking, this is who he is. He's not unusual. He's Robbie. He is quirky and generally happy and somewhat manipulative -- being the baby of the family and all. And I'm offended by the repeated term of "unusual" because in my head it's a euphemism for "freakish."

Which of course triggers the guilt buttons in my brain (and heart). We shouldn't have let him watch TV when he was a baby. We should have delayed vaccinating. He's my only kid to have spent time in day care and maybe that in some way damaged him.

From there I go to the "what ifs?" What if he never graduates from high school? What if he can never live independently? What if he never gets married? Mostly far-fetched, I know. But when my brain gets going, sometimes its hard to stop.

I just want to scoop up my bear cub and his adorable smile and his infectious giggle and his fear of the electric hand dryers in public restrooms and move to some hillside in Kentucky where we can run barefoot and learn about life on life's terms in our own insulated bubble.

But we don't live on a grassy hillside and our life's terms include school and assessments and using the resources at our disposal to help our kids achieve their highest potential. And so I slip the now completeld assessment back into the envelope and, thinking ahead to our conference on Thursday, pray for the best.