Photobucket Photobucket Photobucket

Wednesday, February 18, 2009

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.


Eternal Lizdom said...

My mom went through this struggle with my brother. His issues didn't start really showing themselves until he was about 9 or 10. And the school didn't show any interest, didn't believe my mom, etc. Fast forward a few years, and several bad decisions later, and my parents ended up sinking a lot of their own money into a serious evaluation over the course of several days at their children's hospital.

Auditory Processing Disorder

And his school now acts like it isn't a real problem. So my mom has to fight for him to have the allowances made on his IEP.

It's a struggle. But it sure seems like your guy has some good fighters in his corner!!

varangianguard said...

You aren't alone. Take heart.

SPD Foundation

There are other web-based resource sites as well.

Anonymous said...

I feel for you. Could you appeal to the school board or the head of Special Services? I know how hard it is to go to a meeting designed to tell you what may be wrong with your child. I've blogged about my experiences too. I'm here if you need to vent.

Anonymous said...

I've got one of those SPD kids myself. It is rough because our OT did not even understand it unless it was autism related, not institutionalized kid related. There are a lot of online resources. I have the name of a couple of books if you are interested.

My sweetie is a challenge, but she is mine, she is an awesome kid, and she is so very special in so many ways. Call if you need to talk.

Shannon @ Gabi's World said...

With Gabi, we have to go through yearly IEP meetings and re-evaluations. They can be very frustrating. The last couple years were easier for me, but we had years (in Florida) where they threatened to take away Gabi's speech therapy! I hit the roof! "How can she learn anything if she can't communicate?" I argued. The problem was that she was being compared to other children her age with Down syndrome. She was much farther advanced than the majority, but if you compared her to the general population in her age group she was severely lacking in her communication skills. We managed to keep the Speech Therapy, and she still has it to this day. She also still has OT. They recommended we stop PT a year or 2 ago, and I agreed. She walks, hops, skips, runs, etc without any difficulties.

I hope you find a way of getting Robbie the OT that he needs. I would look online for resources of things you could do at home with him. I can ask Gabi's school if they know of any good programs or websites. I'll see what I can find out and I'll get back to you.

Mom said...

First off, You just need to know that You are a Great Mom. You care about your child and it shows!
So pat yourself on the back for that!
Second, Take heart that there are so many other resources available--they may not be easily accessed, but they are there.
Last, how grateful we are that your little guy isn't worse off than he could be. That, my dear mommy, is a gift.

Momza said...

oops, I forgot I was on our family blog when I last commented...Mom=Momza.

Nate's Mom said...

Oh Amy,

Been there done that. Robbie sounds very similar to my Jacob. He has some sensory processing issues, which have been completely resolved with 2 years of OT. His diagnosis was fine motor dyspraxia, which basically means that he "knows what to do" but has a difficult time doing it (coloring, drawing, cutting). Ask his pediatrician to refer him for an OT evaluation. We got nothing from the school, but our insurance paid for 2 years of OT. (cost weekly co-pay, but was so worth it). If this doesn't work, I'd be happy to share some of the things the OT did with him and the "homework" she gave us to do with him.

Sheri in CA

Amy said...

Thank you all for your kind support. I am so thankful that Robbie's issues are not worse and having stepped away from the conference, I do have hope that we'll be able to get him what he needs. It'll just take a little more work.

~ April ~ EnchantedDandelions said...

Thanks for commenting on my blog. It really does help to know I'm not alone, although I'm sorry you are facing similar issues. I hope that Robbie can get into some OT. ((HUGS))

Mrs4444 said...

I like Nate's Mom's advice.

This is heartbreaking; hearing about this frustration. I hope they suggested lots of positive reinforcement, giving him special roles in class to gain the attention he craves in an appropriate way, and maybe an exercise ball to sit on in class. We have three such balls in each of our 6th grade classrooms. The kids fight over them, but they don't realize the benefits for building core strength while forcing them to pay better attention (if they lose focus, they fall off!)