Tuesday, July 27, 2010

Tuesday at the Clinic

Checking out Santa Monica

We had an awesome panel with two school-aged graduates of the John Tracy Clinic today. One boy was leaving elementary school and the other was in the fourth grade- both were absolutely brilliant. Hearing words like, "I used to be interested in astronomy, but now I'm more interested in the paranormal" from a nine year old is reassurance that no professional can give. Not only were these kids amazingly witty, but they were also confident, diplomatic, and had mad self-advocacy skills. Their mothers were pretty amazing, too.

We also had lectures on U.S. Laws and Deafness, and watched an I.E.P. role play while discussing I.E.P. ideas. This is rather pertinent, since I just found out Nolan's IEP meeting is on August 5. Yep- four days after we get back from John Tracy! We are going to be quite busy, with Nolan's IEP, sleep study, and an ENT appointment that I still have to make. As a side-note, Nolan is complaining about his right ear today and there is some drainage. Beautiful- I will have to call the ENT from Los Angeles and try to get a Ciprodex Script filled if the drainage keeps up.

I'm too tired to write about the IEP lecture in detail, but here is a key point:

In the United States, the parent is considered an equal member of the IEP team.

Any material submitted by the parent must be considered when creating the IEP. This includes independent educational evaluations, informal and formal language assessments, etc. Be cool, professional, gregarious, and know your rights.

Since Nolan has a permanent sensorineural hearing loss in addition to a permanent, fluctuant conductive loss, an FM System is absolutely essential for his functionality in the classroom. This is Priority One on his IEP. Since his aids cannot be set appropriately for his random fluctuations, an FM System's ability to improve the signal-to-noise ratio is vital. Speech therapy is also good- for monitoring and maintenance (even if he is currently age appropriate- it took intensive therapy to get him to where he is now).

After school, we headed out to the Santa Monica Pier and enjoyed the sun, wind, and salty air. Nolan loved riding a few of the rides they have on the pier. He also saw a bunch of rocks off the coast and was convinced they were a whale- we let him think it was a whale, since he is quite keen on them at the moment. We stopped in for dinner at Gilbert's again, since there is no such thing as too much Mexican food. We're having a difficult night since Nolan is complaining about his ear hurting and having trouble sleeping- I really hope this isn't a nasty infection starting again (right ear- the same one that perforated through a tube in 2008). We'll see what tomorrow brings, I suppose.

Rides on the pier- definitely more fun than IEPs!


xraevision said...

Awww, nice photos of the pier! We didn't quite make it to the rides or the little aquarium because we spent too much time at the beach and then in the arcade. It was almost impossible to tear X away from all of the buttons, levers and guns.

Your first week home sounds like mine: full of appointments. It was a busy time, but at least all of my JTC momentum was still rolling forward swiftly! I think I made quite an impression on all of our service people!

Herding Grasshoppers said...

Yah, Leah!

I'm commenting here on your behavior post, too... you know what I love about all the ideas? They work great with our "other" kids, too - not just our "special" kids. Hurray for practical.

And oh-my-goodness, an IEP meeting right after JTC? You're going to have a lot of momentum, my friend!

Love that they emphasize that the parent is an equal member of the IEP team. We've met up with quite a spectrum of attitudes from the education professionals while Tate was in public school.

Our specialist (HoH teacher) was a gem. And the mainstream classroom teachers too. (They may not have had any training on working with D/HoH kids but they were very willing to listen, adapt, take advice, etc.) But some of the administrators and specialists... really seemed to believe that they were the Professionals and what could mere parents know. Ugh.

I would give myself a little pep talk before every encounter, that went like this:

I am the General Contractor of this "building" project, and these people are all Sub-contractors. They're good at what they do, but I'm in charge of the project... he's my baby!

Nobody knows your kid like you. You're the expert and you care the most.

Praying for Nolan's draining ear...


Christian and Lily's Mommy said...

Love the pictures on the pier. Have such a wonderful time!