Saturday, September 27, 2008

R-E-L-I-E-F


I've hesitated to say a single word about it, here on the blog or even to our friends. This is the 3rd contract our house has been under (yep, we had contract #2 and it also failed) and I think this is the one that will stick. We're heading to Athens today to clear out the garage and get the place ready for closing, which should be towards the end of October. 

I'm so excited for us! This literally changes the whole picture for our little family. The amount of relief this brings to us financially and emotionally is staggering!

We've got our eye on a very cute little place that is for sale by owner and happens to be less than 2 miles from Ethan's school. We're going to be looking at it again soon and talking to the owner about price, home inspection, and all that other good stuff that goes along with this miserable business. 

Ethan continues to grow and change in ways that are hard to articulate but that are constantly amazing us. Everything seems to be improving and changing for him all at once. His balance and coordination, his speech, his sign language, and his behavior are all on a major upswing. 

I leave you with Ethan's first photograph which he took with my phone last weekend. 


Sunday, September 14, 2008

Recharged


This is what Rich and I look like when we're A.) all dolled up at a wedding and B.) relaxed and enjoying some time together. Our weekend in Cape Cod was probably the best weekend I can remember having in all of my 38 years. Rich didn't miss a single detail and I felt like royalty from the moment we left town to the moment I returned. I didn't worry about Ethan at all because he was in good hands and I knew he was having a great time. Whenever Rich called home to get an update we could hear Ethan's laughter in the background. I slept through the night 2 nights in a row in big comfy bed and ate amazing food the entire weekend. I saw old friends and spent much needed one on one time with Rich. I danced and laughed my self sore. 

Now we're home and Ethan and I are on the mend from some weird upper respiratory illness that he probably brought home from school. He missed 3 days this week and was pretty bummed about it, each day signing "backpack" and "school" as if to remind me that I was forgetting something important. In addition to signing more often, interacting with peers, and following directions; Ethan has also been putting things away when he's finished and he's getting better by the minute at going up and down the steps. School has really transformed him already and he's only gone for 3 weeks! 

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Last night I read a blog post written by a mother of a child on the spectrum that really resonated with me:
 
"And so here's my five-cent revelation, guys: the hardest thing about having a child on the spectrum is the relentless advocating--every damn minute of every damn day--to make sure that the rest of the world treats him with the respect and care he deserves, until such time as he can do it for himself."

I have been teetering on the edge of losing my resolve when it comes to the dispute over his placement at the deaf school. Most of the time I just want to cave in and pay the tuition ourselves. Giving up isn't really an option for us financially, but neither is taking this to the bitter end. Going through due process could cost us up to $10,000 and we could still lose. In Illinois (the only state I found stats on) the court favors the school 2/3 of the time. So if that statistic were similar here in Ohio, we'd be out the money and still be stuck with the cost of tuition. 

Our advocate gave me some extreme advice after just one harried conversation. She has a great record of winning her cases (she's not a lawyer, but she knows the law) so I decided to follow her directions and I withdrew our appeal. She instructed me to request another IEP meeting instead because we have a new report from Ethan's SLP that we would like to use as part our argument. She thinks (and I'm sure she's right) that if it isn't part of the IEP or MFE (sorry for the education terms) that the school won't give it a second thought. I hate the idea of going back into another IEP meeting, but from what I know about this woman, she's a shark and she'll likely do all the talking anyway! She sees multiple issues with his IEP that need addressed, so I know this is the right thing to do. 

She also wants a psychologist to visit the placement at the public school as well as observe Ethan at the deaf school. This report can support our argument that Ethan's social/emotional development will be stunted in a public school vs. a school where all the children and adults use sign language. How we get this paid for is still a mystery. 

The only good aspect of all of this is that Ethan's deaf school is very understanding and they are allowing him to stay on as a "visitor" for as long as it takes to resolve the situation. They have never asked a deaf child to leave for lack of money. That would go against everything they are there to accomplish. So Ethan will remain in this wonderful place that is helping him find his voice while I continue to dig deep and try to find my own. 


Thursday, September 04, 2008

Intensity

I spent the better part of the day today dealing with an advocate and making strategy changes to this conflict with the public school. She is intense and high strung and I'm, NOT. So I have been trying not to absorb too much of that frantic energy but it has been difficult and this whole process is starting to get the best of me. I'm starting to feel like things are going to go from amicable and friendly to aggressive and adversarial. I am a peace-maker personality, so willingly entering into this state of mind is a tough choice. 

But I'll settle for nothing less than what is appropriate for Ethan's education. 

As I prepare to take Ethan to bed, I'm smiling at this thought:

At my high school reunion last weekend Rich was wearing a name tag that said that he married me. In the bathroom a man he doesn't know or remember approached him and read his name tag, then responded "You got a real live one! Free-spirit!"

Now I just need to channel that firecracker to deal with the challenges of the day and all will be well in my world. 

Wednesday, September 03, 2008

6 Reasons to Celebrate






#1 Ethan LOVES his new school, he is at the school for the deaf here and it's amazing how well he is taking to it. He's a new kid! He signs so much more often and has been seen initiating social interactions at school! We have never witnessed Ethan engaging, much less initiating interaction with a peer, so we're THRILLED! He is starting to follow directions! The other day he wanted to show Rich and I the circle in his classroom, so he took us over and showed us while signing "sit", then he sat down. On the way out of the building he likes to sign "eat" as we walk by the cafeteria and "ball" as we head past the gymnasium. This level of  communication is totally new for our family and I think being immersed in a sign language environment is the Main Ingredient. Finally, after 3 years, my son is finding his "voice"! There just aren't words for it.

Of course we're still dealing with the public school here and I've written and submitted a letter of appeal. I linked to it over on the sidebar just in case any readers find themselves in need of a template. It took a long time and I'm hoping that we can help someone else in a similar situation. 

#2 I love our new babysitter. She is a young woman who happens to be profoundly deaf, so she and I have been emailing, but I've also been holding my own in our signing conversations, which feels pretty amazing. She's wonderful and Ethan also loves her! 

#3 I'm taking ASL classes at Ethan's school. My teacher works there and though she is hearing, she is a fairly fluent signer with 20 years experience. This is a great opportunity and our babysitter is making it possible (Rich is usually out of town on the night of my class).

#4 I just attended my 20 year high school reunion and am still flying high from the feelings that accompany being reunited with some of the most important and memorable relationships in my life. Can't beat it. 

#5 My birthday is Saturday and Rich is taking me to a weekend getaway (for a wedding) on Cape Cod. Rich and I haven't had that much alone time since Ethan's birth, which has been even tougher for us as we've been under some intense stress. It will be awesome :-)

#6 My parents spent last weekend watching Ethan and a great time was had by all. Those are pics from their trip to the zoo; apparently the polar bear was really putting on a show.