Monday, October 13, 2008

Accepting a new label.

E-boy modeling his Halloween costume

The puzzle that is Ethan is coming together in some extraordinary ways. It seems like we've spent the first 3 years just waiting and wondering what he would do and now it looks like he's actually going to do whatever he darn well pleases; "the sky is the limit" as his teacher said to me last week. Of course, we really need to get him to focus for that phrase to ring true, and we're working on it. He has needed a one-on-one aide at St. Rita not only for safety reasons, but also because it's tremendously hard to keep him focused on an activity that isn't of high interest to him. 

We have new ammunition going into our next IEP meeting, which has yet to be scheduled. I'm waiting until we get the evaluation and report from the child psychologist who I met with last week. I was beyond impressed with his resume, his personality, and his specialty in deafness and ability to sign fluently. This guy is top notch and perfectly suited to work with Ethan. 

Our new ammunition comes in the form of a new label, one that I think carries a lot of weight due to the emotional punch that it delivers. Ethan has ataxic cerebral palsy. His developmental specialist has been seeing Ethan since infancy and started mentioning the possibility of CP at about 18 months. She has been going back and forth on it since his case is so mild, but the most recent physical therapy evaluation combined with his neurological history (intracranial calcifications) and his current age just came together to seal the deal. 

Rich and I aren't by any means happy about it, but we're not dwelling on the negative either. In our estimation, Ethan is the exact same child as before this new label and we have also learned that these labels are what open doors for us in terms of support and services. This whopper might just make it possible for us to get assistance so that Ethan can finally get the weekly PT that he has needed all along. Our insurance (that is about the size of a monthly mortgage payment) only allows 20 visits of any of his therapies per year. He needs weekly OT, weekly PT, and 3 x's weekly Speech. He has never had any of those because the insurance won't cover it and we simply can't afford it; each session is nearly $200 per hour. 

There is also a possibility that the diagnosis will secure that one on one aide for Ethan in his IEP. I'm not counting on it, but I'm going to work it like no ones business. 

Ethan has also been unveiling outrageously impressive new attempts at speech lately. He is trying to say words like never before, and of course signing along with his vocal attempts. I'm so glad he's signing since many of his vocalizations are unintelligible. I've also discovered that he has been memorizing what words look like and remembering their meaning. I arranged magnetic letters to form the word "stop" and Ethan looked at me and signed "stop". So I tried it again with the words play, go, cat, ball, mom, dad, table, kitchen, frog, girl, boy, hat, car, etc. He signed each word correctly! I'm not suggesting that he has the concept of reading, but I am certain that he has a photographic memory for words! Each of the words he knows are in his books, and he has spent countless hours in his life staring at his books. It's interesting and exciting to uncover the workings of that little mind that has eluded us most of his life.  He's much more complex than even I have given him credit. 

We go to Athens on Friday to close on our house. Our lease here will end in January and we're seriously considering signing on for anther 6 months just to sit back and  see how bad this economy is going to get before taking the enormous leap of buying a house. The place I wrote about that was close to Ethan's school didn't work out since the home owner decided to lease the house before we could make an offer. Oh well. As Rich put it, "We're getting good at being disappointed". Our dealings with 2 public schools and losing 2 contracts on our home have really taught us how to keep the old chin up!

Friday, October 10, 2008

Milestone: 1st Political Rally

That's Barack Obama in the white shirt on the other side of the flagpole :-)

Saturday, October 04, 2008

Fall on the Farm

I've met a handful of parents through Ethan's school and this morning one his classmates and his mother invited us to visit a heritage farm. The weather was gorgeous and the kids painted pumpkins, pet several animals, and watched a group of cloggers do their thing to some bluegrass tunes. It was so nice to get out and enjoy the day with a new friend! 

Ethan loved watching the chickens, I hated smelling them.

Ethan signing chicken...

A line forming for a hay ride around the farm. We didn't opt to try this since Ethan would have been diving head first off the back of the wagon. 

Looking at the billy goats.

The sight of this cow prompted a sign as well as a spirited "Moo" sound from Ethan, minus the "M" phoneme. He's still working on that letter...

IEP Update 
We're moving things forward, slowly but certainly strategically. I dropped in and observed the preschool classroom at the public school where Ethan would be placed if he were not at the deaf school visiting. This is a classroom that we were told would be total communication. It was far from a TC environment. I saw very little sign language while I was there and even saw some being done incorrectly. So....

Next we are going to have an IEE (independent education evaluation) performed by a psychologist that will focus on Ethan's social emotional development with regards to his communication modality. Ideally, this person will visit both classrooms (public and deaf school) and assess Ethan as well, then write a report that will confirm what we have been saying all along. How is he supposed to develop socially or emotionally (or even academically) in an environment that at its most basic doesn't have any fluent signers?

Needless to say, I didn't see that interpreter/aide that they promised and even if I had, it wouldn't change the whole environment to a TC classroom. It would mean that one person in it was fluent in sign. Big deal. 

We're also giving up on our advocate and are shopping for a new one. The one we've been dealing with has been harder to work with than the school. She's an abusive bully who yells at me when I ask any type of question. Yesterday after a quick question she responded, "Aren't you listening? Haven't you heard a thing I've said?"! She also never lets me finish a sentence. And she's very unorganized and is unable to focus her attention. People put up with her because she does it for free and she knows the law and understands apraxia and hearing loss. I'm not a glutton for punishment, nor am I incapable of reading and understanding my rights without being berated in the process. I think she's a liability in the long run. 

This isn't easy and I'm sure I'll look back on this time in my life as a period of intense stress and worry. But the big picture remains unchanged, Ethan is going to be fine.