Friday, July 30, 2010
Today was a day filled with tears, both happy and sad. Our entire family has made such good friends here and we will miss them terribly. Noah repeatedly asked why his friends couldn't go on the airplane with him and now keeps singing "If you're ready to go to school clap your hands" as if somehow magically that will make things not come to an end.
So what is the biggest thing I've taken away from the JTC? Hope. Hope that I can do it. Hope that Noah will have friends and learn and grow up to be productive and happy and independent. Before I didn't dare to think too far into the future, but now I feel like I have the freedom to dream.
Thank you John Tracy Clinic - for everything.
Wednesday, July 28, 2010
Wrightslaw: This website is really great at explaining the federal laws and can be helpful when you want something that you KNOW your child needs but the school hasn't done before. Finding just the right bit of law that supports your request can mean the difference between an easy conversation and a long fight.
Virginia DOE: This website has a listing of all the SOLs by grade and subject which can be a big help in trying to come up with IEP goals. Under the special ed. section there are also guidelines for working with kids with various disabilities, which in my experience the school districts are not particularly familiar with. I imagine that other states also have similar websites.
I'm determined: I'm a big fan of this VA DOE initiative that teaches self-determination skills and gets kids involved in the IEP process at a young age.
Hands and Voices: This website is a great resource for families of deaf/hoh kids no matter what communication modality they choose. There are lots of great articles about everything from eligibility to mainstreaming and the "pop up IEP" can be really helpful if you're not getting the answers you want from your school district.
Speaking of Speech: For some reason I always struggle the most with coming up with speech goals for Noah. The IEP goal bank on this website isn't particularly navigable, but it is fairly exhaustive - just what I need.
DB Link: Anything and everything you need to know about deaf-blindness can either be found of this site or using the links contained on it. It's great for educating IEP team members who just don't grasp the implications of a dual sensory impairment.
Monday, July 26, 2010
After the first week at JTC we headed to Disneyland for a day of rides and meeting some of Noah's favorite characters. There wasn't a whole lot of new vocabulary to learn (since he already knows everything there is to know about all the Disney movies) but he really enjoyed conversing about some of his favorite topics with many of the cast members there.
Thanks to a very generous John Tracy donor, Noah learned a ton of new language at his first baseball game. He is now quite the Dodgers fan and has been singing "Take Me Out to the Ballgame" and "We Will Rock You" quite regularly. It was hard for Noah to see the action of the game, but that just made him more eager to learn new language so that we could describe things for him.
We spent much of this past weekend at two of the museums in Exposition Park. At the Natural History Museum Noah learned all about camouflage and mimicry during an "animal talk" and had lots of practice with his listening skills as I described the upcoming animal for him to guess in the galleries. He was really good at guessing most of the standard animals but needed pretty detailed hints before he was able to guess others (apparently Noah best knows opossums for lying dead on the side of the road).
The best part of the California Science Center for Noah was definitely the dress up rooms. He used some of his emerging conversational skills while playing "TV studio" "rocket" and "forest" with other kids. Noah also learned lots of new vocabulary thanks to the "Ecosystems" exhibit. There were so many hands on things to see and do and he loved every minute of it.
We're now into our final week at the JTC and I'm wishing we could stay longer. I can't imagine where Noah would be now if he had spent the last 3 years at a school like this one, and I know that I will be a better parent and advocate because of the things I've learned. I'm forever grateful to Mrs. Tracy for her vision and for all of the donors who keep the programs running.
Wednesday, July 14, 2010
We have completed two days at the JTC summer program so far, and it is so worth all the hassle and the stress involved in preparing to travel cross-country while moving. I highly recommend it to anyone thinking about going, but start saving now. The program is free, but 3 weeks of travel can get pricey.
My first happy mommy tears came yesterday when the teacher told me about Noah and another student playing on the playground talking back and forth on Monday. That pragmatic language is always a struggle for Noah, and hearing about a successful peer conversation on day #1 was amazing.
So far the parent classes are fairly basic in terms of what I know, but I think Brian is probably learning a lot. I'm looking forward to some of the later topics, and right now am totally enjoying hearing other family's experiences and learning from them. Day #3, here we come!
Friday, July 2, 2010
Yesterday started as an ordinary day. Noah woke up way too early, got his reflux meds, his ears, and a fresh pull up and headed downstairs to stare at the blank TV screen, willing it to play cartoons. As is also typical at some point in the morning he fell down. He doesn't have the greatest balance or much peripheral vision and he enjoys spinning in circles, so falls are fairly common. They're more frequent later in the day when his muscles get tired and his gait gets wonky, but they do still happen in the morning. He's rarely upset when he falls, and it's not at all uncommon for a new bruise or scrape to show up with little fanfare.
I remember him falling. He was a bit startled and headed to daddy for a hug before going over to read a book. About 10 minutes later as I was helping Noah to get dresses I pulled his hand out of his mouth and noticed that his fingers were bloody. Further inspection showed bleeding and bruised gums, one tooth that was very loose, and another that was loose and not in it's normal position. After talking to the dentist it was agreed that he did need to be seen but that it could wait until after VBS (which Noah didn't want to miss).
The dental appointment was traumatizing as ever, but Noah was very brave. He cried uncontrollably the entire time but stayed as still as possible and tearfully agreed to cooperate. An x-ray showed that Noah's roots were barely there, probably indicating that this fall was the final straw in a long line of fall related tooth trauma, so out came the teeth. Noah now has lots of presents and a little yellow treasure chest with his two teeth in it. We weren't quite ready for introducing the tooth fairy, but it's just as well because I think it would break his heart to have to give up his treasure. Hopefully next time Noah can lose his teeth in a more natural manner.