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Sunday, January 25, 2009

Looking out for my cub

mama bear

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.


Eternal Lizdom said...

This is one of those times when there aren't "right" words, i think. So I'll just do the cyber... {{{hugs}}} for now.

Hang in there. My parents have gone through quite the battle to get things right for my brother (who is 16). So I kind of understand.

Annie said...

It isn't easy having to fill those things out!! I've had to fill out a similar assessment for my little guy since he's in early intervention due to his hearing impairment. They make you feel like you're a horrible mother even though you aren't and you are doing everything in your power to make sure he leads a normal, happy life! NORMAL isn't easy to achieve now-a-days with all of these assessments and it is all we really want for our kids. Hang in there, Sweetie, one step at a time. Big {{HUGS}} to you and a prayer, too, that all will go well on Thursday!

Shannon @ Gabi's World said...

I know those assessments all too well! Ironically, I never had to fill one out until I moved to Indiana, and Gabi had been in school in Florida since she was 3 years old prior to that. I think it is an Indiana thing to make us suffer through those questionnaires! I fit a lot of those things too! I hope your meeting goes well! Is this the IEP?

Angie Seaman said...

Oh gawwssshhhh girl. I feel your pain on this one. Having a special needs daughter, our 5 year old precious princess, we've had to endure many tests and forms similar to what you are describing. Part of our move from Center Grove (Greenwood) to Carmel this year was due to CG's school district ticking me off when it came to Kenidi's services. I don't know if you were following my blog back then or not but boy did the mama bear ever came out in me then. WOW WEE! The move we made to the Northside was the best decision we ever made for her. The schools in Carmel and the services they provide are night -n- day compared to what we got at CG. I'm a CG grad and hate how it all ended up. However, you always have to do what is best for your kids. Remember, you are truly HIS ONLY ADVOCATE when it comes to these things. Hang in there and be FIERCE mamma.
Hugs, Angie

Anonymous said...

I know just how you feel. I have two with special needs and just went to my latest meeting on Thursday. I blogged about a recent parent teacher conference, I called it the Parent Teacher Cage Match. My goal was to make it out without letting them see me cry. Thanks for sharing this today! Let's me know I'm not alone with some of these issues.

Nate's Mom said...

Amy ~ ((Hugs)) I have also been through this twice. We just got Nate diagnosed as ADHD 2 weeks ago. I have known for 2 years, but could not get the dr on board. Anyway, now that we have a diagnosis, we have an IEP meeting this Thurs. I will be thinking of you this week as go through it with you. I hope you get answers that will getthe services Robbie needs. I had mixed emotions about the diagnosis myself, but ultimately, I know it will give him access to the services he needs to learn. Feel free to email me if you want to toss this back and forth.

Sheri in CA

Jeanne said...

I've never had to go through what you are experiencing. I do, however, work in a middle school and see volumes of kids. All I can tell you is for you to trust your instincts. No one knows your child like you do. None of us wants to be labeled, yet our public school system loves to label & diagnose. Hang in there! Listen to your inner voice!!

Micah and Emily said...

Growing up my older brothers encountered similar situations. This was the time before the "advanced" classes were available. Two of my brothers were termed as having mild mental impairments which was seriously incorrect. Rather they were advanced academically beyond their 3rd grade years. I agree with the previous comment, follow your instincts, you know your child, these individuals do not and are more than likely following a standard paper check list.

Best of luck Amy


Anonymous said...

You're right, Robbie is Robbie, great big smile and infectious laugh! Remember by filling out that form and seeking help, you're helping him be the best Robbie he can be and avoid all of those "what ifs" that you fear.

We love Robbie-Dobbie and YOU!!

Amy said...

@ all you guys! Thanks so much for your kind words and your support. This is one of those "hard to be a parent" times. Keep us in your prayers on Thursday -- and Nate's Mom too, who also has an IEP conference that day.

I keep trying to remember, if it doesn't kill me, it'll make me stronger -- or at least justify a giant margarita!

Momza said...

THIS Mama Bear totally gets what you're feeling. One of my cubs has some truly special needs (at 23 yrs old he is mentally around 6--I get it!) BEST ADVICE:
*Be confident in your Mothering skills and in your Child.
* Take advantage of whatever resources are offered to your family and run with them! They can only help in the long run.
* Take tissues to the meetings and never apologize if your eyes leak. That is just your mother-heart confirming your love for your son.
* Be confident in your Mothering skills and in your Child.
Yes, I know I already said that, but saying it again makes me feel better.
Hang in there!

Alan said...

i don't believe there is anything wrong with your kids,it's something wrong with the world and all the politically correct people in it. we all have our foibles some small some large, who are we to decide if someone else is a "freak" usually they are just slightly different and thank the Lord for that.