Wednesday, January 20, 2010

Where does the time go?!

I am a terrible, terrible blogger when life is crazy. I admit this. This last couple months it seems like it has just been one thing after the next. Jaymes has had a lot of appointments lately, mostly because I'm trying to get everything finished up prior to Jason going back to work on Monday.

I had a meeting with Jaymes EC teacher, and also the school OT. I LOVE the school OT, she is just wonderful. She's about the nicest person I've ever met, and she has great ideas. Better yet, she actually follows through with things she says she is going to do- a rarity in the school system, from my experience.

Jaymes teacher is also really good. She seems to have gotten a much better understanding of Jaymes, and of my goals for his future. She spent quite a bit of her after school time on Tuesday, showing me Jaymes' work, his workstation, what they've been doing in class, and the really neat sensory area, relaxation thingy the OT set up in the classroom.

I was incredibly impressed with Jaymes' progress, and the fact that his teacher considers him one of the easier kids in the class is a wonderful thing! He participates in everything, and his vocabulary is expanding at an amazing rate. He particularly loves Letter Land, and can recite the character names, their letter sounds, and do the hand motions that go with each on from A to I. He enjoys showing me this skill on a fairly regular basis, and it never fails to make me smile.

He also LOVES music time. I came to get him last Thursday, and he was out of the classroom doing music, so we walked down there. We caught them in the middle of a song, and Jaymes didn't see us. He was dancing, doing the little gestures that go with the song, and looking SO happy. It was the cutest thing I've ever seen. I love seeing Jaymes doing well at things. he's always been a fan of musical stuff, so I can't say it suprises me that he is so good at music class! I believe they are going to start trying him in a regular-ed music class to see how he does. Should be interesting.

Anyway, the game plan has changed. I've thought long and hard about this, and discussed with with my husband, Jaymes teachers, the OT and the speech therapists both at school and at therapy up at Baptist, and everyone in in general agreement that it's not a terrible idea...

The more I look at what's left of the school year, I realize that while Jaymes had made HUGE leaps and is doing so incredibly well, no amount of good teaching is going to get him ready for first grade. Rather than let him continue to move up the grades in special ed classrooms, I've decided that the best plan would be to have him retained in Kindergarten next year. He's done really well this year, and this way the teachers he has now can continue to slowly add more and more time spent outside of the EC classroom. I can stop pushing so hard to get him more time, and let things go at the pace the teacher sees fit, now that I know that they are actually trying to get him out of the EC room and into the regular Kindergarten population. My hope is that over the rest of this school year, both the teachers working with Jaymes will help him gain the skills needed to join a regular Kindergarten class for at least 50% of his day next school year.

The point of all this can be a little hard to understand, because it's a little different. I'm pushing really hard right now, not because I expect him to be mainstreamed by first grade, but because I want to put him on that path. I don't want Jaymes to go on and on in special classrooms, on the vocational track rather than the academic one. He is smart enough, and capable of learning the academics. He wants to leard, and he wants to do well. So this is really just setting the stage for later down the line, when Jaymes hits middle school. He will NOT be pushed into Lowrance Middle simply because of his diagnosis- that is not acceptable to me. I'm hoping by starting early, I will save myself and Jaymes the stress that I see friends going through with their children.

I like to think I'm pretty realistic where Jaymes and his abilities are concerned. I know what he can and can't do, I accept him for who he is. If I did not think he'd be able to do the academics, or that he would never be able to be with the "regular" kids, I wouldn't be pushing him. But I know that he has the desire, and the capacity to learn and to function in what will eventually be a regular education situation.

Anyway, since life has been so hectic, I have not even begun to think about another IEP meeting. I don't have the energy right now. I hate those meetings SO much. They are so uncomfortable, intimidating, and honestly pretty embarrassing. I don't like being talked down to, particularly by upper level school folks who barely know my child or his situation. The benefit of all these meetings is there though- I think that many members of Jaymes' IEP team have come to realize that I'm not an idiot, and that I am only trying to get the best for Jaymes.

Right now the only real issue is the fact that the school will not let Jaymes case manager observe in school anymore. I imagine she's working on this, but I find that really frustrating. I could observe, obviously the school allows that, but it wouldn't be worth the effort- there would be nothing to observe. It would be incredibly distracting for poor Jaymes to have mommy in class. That's why I liked being able to have Julie observe, because she isn't distracting to him. But, like I said, I'm a little tired right now. I'm realizing that I need to choose my battles, and sometimes we all need a break from the constant arguments.

I went riding yesterday, that was a wonderful mental health day for me! We were out for quite awhile, and decided to be sneaky and ride around the TRAIL CLOSED sign. About halfway through the creek crossing, we realized that the water was realllllly high, and that perhaps we should have listened to that sign. My friend got wet legs, I kept mine up and stayed dry until we crossed back over later, and slipped and ended up with equally moist feet. We saw a ton of deer, the temperature was perfect, and the sun was shining- it was great riding weather! On the way back, we had a nice gallop. I rode in the english saddle, and boy am I sore! It was a really nice day to relax and have a life again. Seems like I spend all my time in waiting rooms, or at school. And after the fiasco last week with Jaymes hearing aids going into the wrong backpack and being basically lost for 24 hours... Well, I needed some sanity. We did get the hearing aids back, and thank god for that. The school very nearly saw the wrath of an angry Amber, something they have not ever witnessed. It's not a common phenomenon, the Angry Amber. I don't think any school has seen it. It's scary, trust me.

So anyway, that's the update. Not to thrilling, but overall good news.

Saturday, January 16, 2010

A break from the regularly scheduled autism related blogging...

Today I attended the celebration of the life of Jana Sheets, who passed away January 6th, at the age of 35. Jana was the daughter of my mother's very close friend Sue, and was about the happiest person I ever knew. I didn't know her closely, but she has been in my life off and on for the last 10-13 years and in the last couple of years we talked back and forth via Facebook. Jana took time out of her day to answer my questions, as much as she could, about Duke Hospital up in Durham, when Jaymes was referred there for a couple different things. She loved seeing photos of my kids, and especially liked Jaymes. She also made Sierra a really beautiful necklace a couple years ago. The last time I saw Jana was the Thanksgiving before last, and while she was on oxygen and pretty frail, she was as happy and smiling as she had ever been. Jana was one of the very few people I have met who I have never seen unhappy or grumpy. I honestly cannot say I have ever seen her without a smile on her face. You really can't say that about a lot of people.

Jana had a rare disease called Lymphangiomatosis, and (copied from the Ithaca Journal's obituary)was the founder of the Lymphangiomatosis & Gorham's Disease Alliance, a charity dedicated to patient support and organizing research interest, Jana was known throughout the worldwide patient and medical professionals communities concerned with these two catastrophic, mainly pediatric diseases. She had devoted the last 4 years of her life to the cause of patients and families affected with these rare, poorly understood, orphan-diseases. Jana was also a founding Board Member of the Lung Transplant Foundation, Durham, NC. (end quote)

The service today was very unique, and very well done. There was a beautiful slide show with photos of Jana, from the time she was a baby until very recently, and some very appropriate songs. Her mother did a wonderful little speech about Jana, and the kind of person she was. It was well written and well delivered, and I think Sue captured the essence of Jana perfectly.

Several other family members and friends also spoke, including Jana's sister, Megan. Her husband, Eric, read the eulogy, then the whole thing ended with another slide show of photos choreographed to music, and the entire group gave Jana, and the way Jana lived her life, a standing ovation. I think she would have liked how things went, it was really very nice.

I think the thing I enjoyed the most was hearing about the way Jana looked at the world, and how she met life head on rather than letting circumstances get the better of her. The fact that she began to advocate for herself as a kid really impressed me, and hearing the specific little anecdontes from people who knew her so well was inspiring. She was an incredible advocate for herself and others, and she lived her life with a bright smile and an upbeat spirit.

I think you all know how much respect I have for anyone who is able to advocate so effectively, a skill that I have been very slow to learn, but that I try to use daily in my interactions with Jaymes' doctors, therapists, and school. Jana inspired everyone around her to be a better person, and to spend more time smiling, and less time carrying around anger and bitterness. With the things she went through, she had every right to have been angry and unhappy, but she was better than that, and she chose to live her life, and not let herself be mired down by self pity.

I wish that I had taken the opportunities I had to have been closer with her. I feel privileged to have known her, though, and enjoyed every interaction we had over the years, as few as those were.

My strongest memory of her was back when we lived in New York. Jana and I were sitting on the front porch, and she told me a story about a nickname someone in the family (Sue, I think) had given her, jokingly. She told me because she wanted to make me laugh, and it did. I also felt really honored, as a kid, to be let in on what seemed like a big secret. It was really just a silly play on her name with a couple extra syllables added in to make it kind of an embarrassing nickname, but she told me never to say it in front of anybody but her and trusted me with that secret. That's a big deal to an 11-12 year old. I never did tell anyone, and I won't post it here for obvious reasons. Not sure why that's the strongest memory I've got, but go figure. Her sense of humor was wonderful, and she could even laugh at her embarrassing nickname. That was just the kind of person she was.

I'm glad that I was invited to be there, to celebrate the way Jana lived her life, and to hear the stories and poems read by the people who loved her the most. I hope that her family, particularly her mother, can be strong and look back on memories of Jana with joy, instead of with grief.