This weekend we had a wonderful treat. Kevin and Arianne, Donovan and Ethan came up to our house on Friday night, then we all left and went camping at Cloudland Canyon State Park on Saturday night. Much much fun was had.. it was Donovan and Ethan's first camping trip and they did AMAZING. We never have a bad time when we hang out with that bunch. We love you guys, thanks for being our friends.
Here's pics: http://www.flickr.com/photos/56083521@N00/sets/72157624121298620/
Manny is getting a little easier to take on these types of trips, although he's still exhausting and takes constant supervision because he wants nothing more than to escape and run down the street. Still, he has started to respond to us a little bit when we tell him to stay close. Its something, and I'm just happy that he's showing signs that he understands us. His inability to sleep carries over to camping, and he woke up around 3 AM.. which, coincidentally was about the time I went to bed. We just resign ourselves to the fact that we won't sleep when we go camping. Its the price we pay to do what we love.
This morning I went to meet Jake's special ed teacher and my cousin Amber, his speech teacher at Westside elementary to check out their Kindergarten program and meet the special education teacher there. They have a really nice program and really a very very nice school. Then, this afternoon I met the ladies again at Beaverdale and I was SUPER impressed. I met Ms. Nancy, the person who oversees the special autism class there. Amber, Micaela and I toured the school and then went back to Ms. Nancy's class. I was getting very excited about this school, which seems to be quite forward-thinking and I was really surprised to find such a place nestled way out in the middle of nowhere-East-Whitfield. Ms. Nancy began speaking to me privately and said "Well, I've only observed Jake for one day, but I don't think he's ready for kindergarten, and here's why..." My heart sank. There are really no other options for him other than repeating Pioneer headstart again, and I KNOW he's bored with that and needs more challenges. I thought she was saying that he wasn't ready for her program, but that's not what she meant at all. I think she was quelling my enthusiasm that Jake might be ready for going to the Kindergarten classroom for much of the day. She disagrees (which is fine, since I really have no idea what a kindergarten class looks like anyway). She thinks that Jake SHOULD come to her class, but with the expectancy that he is going to need a lot of help, and may spend much of his time working with her or her assistant. He needs to work on being able to sit still and concentrate for more than a few minutes at a time, among other things. The prospect being that this year be a "practice" year of kindergarten, with the expectation that he will repeat K again next year. I am happy with that.
I have only one concern about him going to a school that is so far away, and that is that if he rides the bus, it will come at some ungodly hour like 6 AM.. which will be hard. We can drive him, but the school is about a half hour away, and that can get tedious and very expensive. But honestly, as far as I can tell right now, transportation is the ONLY concern and that's just a matter of convenience and not worth giving up such an amazing opportunity for Jake. While Westside is really nice, I really think that Beaverdale is more specialized and exactly what Jake needs.
I will be going to Pioneer headstart for an arena meeting with about 10 people or so who seem to care a lot about my son at 7:30 on Wednesday morning. I will have both kids in tow, because childcare just isn't in the cards that day. I'll tell them YES to Beaverdale Elementary, and I'll sign a bunch of papers and hopefully someone will hold Manny for me for part of the time.
The frenzy of meetings to coordinate the next step in Jake's education has fallen at an interesting time. Sunday I went to the Chattanooga Market as a consumer (SO much fun!.. I had no idea what it felt like just to go and SHOP) and then realized that the big two-day "Beast Feast" is this weekend. Several acts that I want to see will be playing, and it is a great opportunity to vend and make some money. Despite the fact that I'm very understocked, I decided to take it on, and I RSVP'd. I sewed every spare second that I wasn't at school meetings today, and will continue to sneak in any time I can the rest of the week. Sam came and sewed for me today, and I've asked Sherlene to help me with some finishing work (Thank you guys.. SERIOUSLY.. THANK YOU!). This weekend will be a lot of long hours and hard work, but hopefully it will pay off. Next weekend is the Thingamifling! Oh I do love the beginning of summer.
We haven't even told Jake about the Thingamifling. His "actual" birthday is Sunday, which he will spend with Mom (thanks Mom!) while Steve comes up to the market with me. Even though I'm not touting "the fling" as his birthday party, I will probably get him a chocolate cake from Greenlife Grocery and make sure he gets a song and some candle blowing going on sometime during the fling.
Tomorrow marks the one year anniversary of the day that the nurse called me and told me that they found a tumor on Manny's brain. A lot has happened in a year. My mind has changed so much over the course of that year. I can't even describe how EVERYTHING has changed.. my children, my relationship with my husband, my relationship with everything. Things went down.. they went WAY down, but they're coming up again, in a wonderful way. Manny is due another MRI in June, according to the doctors, however.. I will probably postpone that until closer to his birthday. I might get criticism for that, however.. sometimes what we don't know doesn't hurt us, and so far my mommy gut has been pretty dead-on. I think we'll ride this wave of O.K.-ness through the summer unless something changes.
The 'fling will be our practice session this year. We hope to turn it into a benefit for NF1 research in the future, and with the help of some very special friends, I think it can happen. If you would like an invite or more information, just email me at firstname.lastname@example.org BAREFOOT NELLIE! YEEEHAWW!
Well Manny is finally asleep (he's trading waking up all night for staying up until midnight the past few days, which is actually slightly more desire able). I am going to follow him.