Sunday, September 12, 2010

River Trip!


On Saturday morning, Steve and Manny had plans: Steve was going to watch football, and Manny was going to Granny's house. Steve, in an effort to have a boy's night, said I was welcome to go out. I called my friend Tim, who was camping at the outfitters, and told him that I might come up and camp with him and his friends. He INSISTED that I bring Jake. Now thats a true friend, camping at the river with his pretty lady friend and he wants to hang out with a 5 year old? He loves our kid, and has been dying to take him in the drift boat on a river trip.




We floated the river from 4 PM until about 7 PM. I was apprehensive to take Jake on a trip that long with very little option for "escape." We packed snacks, drinks, and I had my own iphone and Jake's itouch in case Jake needed to remove himself from the situation at any time. None of us brought a camera except for the iphone, which ran out of batteries.

What an absolutely AMAZING trip! Jake did wonderfully, and Tim and Nancy were so sweet and accomodating. He can be a handful, but he knows when people love him, and he and Tim bonded in a way that only two pirates can *wink.*





Jake only got apprehensive the last 30 minutes of the "three hour tour" when it began to rain. The rain went away and we were blessed with one of the brightest, most defined double rainbows any of us have ever seen.

We ate a very late dinner and Jake climbed into the tent and played itouch to excape the pouring rain. What a great Mom and Son adventure. THANK YOU TIM!!! I mean it, you gave us a wonderful gift.

I am sitting here completely free of the Elephant that sits on my chest. I'll post why tomorrow, but this is most free I've felt in ages.

Friday, September 10, 2010

Blog Posts Removed

This probably isn't going to be the most popular decision amongst my readers, but I'm not really interested in being popular.... obviously.

At the request of [the school], I have deactivated the blog posts about the I.E.P meeting, and my school observations. The last post you will see that is specifically about school is this one {also removed]where I talk about how wonderful school is going, and about how the stress in my life has suddenly been lifted. I have not removed the post about Manny's M.R.I and Scottish Rite because I get to describe a miracle in that one.

I am not concerned with being right or "winning." I've often said "I would rather be happy than right." I just want what my son and family needs. I am extending an olive branch to [the school] and removing the posts. I have given up my job, I have given up my time, and now I'm giving up my freedom of speech. I'm not sure what else I can give up to show them that my child is the most important person in this entire insane mess. Today Manny's teacher told me that she is willing to say in a meeting that Manny's disciplinary issues are resolved, he is no longer hitting or pinching. She also said that she doesn't feel like they can't "handle" Manny for a full day, just that he needs more than they can give him, and I assured her that he will be getting that through his therapies, and simply from being around other children.

I hope everyone has a wonderful weekend.

Tuesday, July 13, 2010

Rock City

Saturday, July 10, 2010

What to do on a Saturday



Photo album of the day can be found here:
http://www.flickr.com/photos/56083521@N00/sets/72157624341283343/

Thursday, June 24, 2010

The end of Aquarium Camp

**After reading, please read the letter from the Director of Education at the Aquarium in the comments section**

Well, here's the post I said I wouldn't be making in a while. Its kind of a hard one for me, because I'm going to post an honest review of what happened at the Tennessee Aquarium Camp 2010 with Jake enrolled in the Aquatots program. The Aquarium is a very very important place to us, and we have been members since I was pregnant with Jake, our first membership being bought so that we could preview the Ocean Journey. We get the Family + guest membership which is $155 per year and I don't think we've let it lapse much at all in those 5 years. Jake absolutely ADORES the aquarium and we go there maybe once per month or more, often with more guests than our membership allows. The aquarium has been integral in our homemade therapy sessions to teach Jake appropriate behavior in public. Its the "go-to" place to burn off energy, educate and relax. It will be the same kind of place for Manny as well, and its a safe place for me too.

When filling out the application for the camp, I was pleased to see a section for listing any special needs that the child may have. I assumed that either they were accustomed to having special needs children in camp, or that someone would contact me if they had any questions. No one contacted me, in fact I either didn't receive the packet in the mail with the information or it got misplaced here. I called on Friday morning (yes, I should have called sooner) to try to get some information (like where to drop Jake off) and to speak to the education coordinator about his special needs, but my call wasn't returned until Monday when I'd already dropped him off.

The Aquatots program is for ages 4 to 5 years (must be potty trained). For some kids this camp may be the first time they've ever been away from their parents, and I witnessed a meltdown by a little girl who didn't want to stay. Her mom said it was her first time, and she was fine later. I had butterflies with razor blade wings in my stomach. I attempted to explain to the counselor that Jake was autistic, and really didn't get much said, it was a flurry of activity and there were kids and parents everywhere. I left and barely had the ability to save my tears for the car. I just hoped he made it through the day... I'd just dropped my little boy off at CAMP. A year ago I would have said "No way, there's no way Jake could make it through even a moment of camp."

The first day of pickup (I still wasn't sure of the drop-off pick-up protocol because I didn't have a packet or parking pass) I walked up and was told "Ehh.. *shrug* he did pretty good. He won't sit for crafts."

Tuesday pick-up I was told "Wellll.... I guess he did better than yesterday. I just have to stay with him all of the time. He really doesn't like crafts."

Wednesday pickup went better, one of the counselors smiled and put Jake into his seat while the other gave me the sign-out paper. I asked how he did and got another "Oh, he did pretty well, I guess." I said "You know, he really wanted to do this, and he tries hard." This was met with absolutely no response at all or a small grunt, I'm not sure. I was sad. Was he having fun at all? Did he smile or laugh or like anything? Did they just hate me for bringing him? That uneasy feeling wouldn't go away. Ugh, I never know if I'm doing the right thing! Meanwhile Jake still said he wanted to go to Aquarium "school" and only got a tiny bit apprehensive when he was dropped off (for Jake anyway).

Today Granny took Jake to school and Steve got a call around 10something from one of the counselors. She said that Jake needed to be picked up, that he had yanked a little girl's hair and "besides, we're about to do crafts and we're using dirt, and I'm afraid that he might eat dirt and get sick or something."

As far as I know Jake doesn't generally eat dirt (Manny does). Steve said that he completely shut down after that comment and just wanted off of the phone. Why is that statement offensive to the parent of a child with special needs (who, as far as we know, doesn't have dirt-eating tendencies)? It kind of comes across as "Well, he might eat dirt.. cause well, I've heard that some retards eat dirt." Maybe that's a little oversensitive, but oh well, its been an emotional week. The comment was repeated to Steve's dad.

Granny and Pops and Zachary were actually still AT the aquarium, so they were able to join up with Jake instantly. For all of those who have asked (thank you for loving my kid), Jake isn't really aware of what was going on, and is not upset at all by the outcome. He was probably just glad he didn't have to do crafts.

I called the education coordinator and we had a long talk. She was wonderfully courteous to me and spent a long time on the phone with me. I gave her all of my constructive criticism, saying that it was misleading to have a section in the application asking about special needs if nobody read that section or attempted to address any concerns. I thought it might be appropriate (assuming your program accepts special needs kids) to contact parents who wrote in the application that the child had special needs and find out what was going on. I would have been happy to send Jake for only half of the time of camp, maybe pick him up before crafts, if that was what needed to happen for him to be able to have a positive experience, HAD I GOTTEN ANY COMMUNICATION AT ALL. She said that they had had a discussion about Jake the day before. Really? Because... I'm his mama, I'm always having discussions/IEP meetings and the like so that I can work with his educators to make sure that everybody gets what they need out of a particular situation. I can give you ALL sorts of wonderful ideas about how to make this better for everyone, even if that means picking Jake up every day after only an hour of camp. I told her that I had basically been making big shark-like circles around the aquarium for 3 and a half hours anticipating the call EVERY morning, and wouldn't have been the least bit surprised or upset should I have had to pick him up early. I would have ADORED to have been a part of ANY discussion that they had about my son.

I also talked to her a bit about the counselors attitudes. This prompted a call from one of the counselors. These gals are teenagers/college students, and this particular counselor said that she is going into education with a focus on special needs kids. I told her pretty much everything that I had told the education coordinator. I explained what a big deal that this was for everybody concerned, and that a mama like me could use some positive reassurance just every once in a while. She seemed to also be frustrated that there was no communication whatsoever and if she she had been more prepared, she felt she could have done her job more effectively. She said that she only gets the papers with the information on each child every Thursday and camp is still going on. Maybe someone positioned above the counselors should read those papers BEFORE the young ladies taking care of the children? I commended her for doing an awesome job spending her entire summer with classes of 18 crazy 4 and 5 year olds. I wanted her to know that I didn't blame the counselors, I just want someone to talk to me about apparent problems before it ends with it becoming a disciplinary issue. If he's too much trouble for you to handle, just tell me, we can work it out. Maybe some changes need to be made should the aquarium continue to include special needs children in their summer camps.

I broke down in tears with both ladies, I don't think I've ever cried so much in front of strangers as I do now. I'm really sick of that, BTW. I gave them the example of Toy Story 3: Jake has been DYING to see this movie, we've watched previews, he's been drawing the logo, and the other day I took him to a matinee, his first movie theater experience. I had two choices: 1) I could say "I paid $20 for this, and we're gonna watch the whole thing." or 2) "We're gonna see as much of this movie as we can, its Jake's treat, Jake can decide." After the previews Jake asked to go home. He accepted a potty break as an alternative and I left his backpack inside the theater because I knew he'd be too OCD to leave it behind. That got him back into the theater just in time to see Buzz and Woody on the screen. My baby sat for an entire 45 minutes of the movie. I pushed him to the brink, bribing him and asking him to sit back down, to sit in my lap until he had had enough and was on the verge of a meltdown. I went home satisfied that we got through exactly 1 hour more than I had expected (he could have bolted at the door the second he saw the screen). I opted to take what we could get, and so I was really happy with the result. I would do the same thing for Aquarium Camp.

Jake has been invited back to camp tomorrow, maybe to be picked up before crafts. I told the counselor that honestly I didn't think I was emotionally prepared for that. If something else happened I'd probably fall out.

Hopefully everything will go smoother if Jake decides he wants to do "Aquarium school" next year. Everyone was extremely cooperative and nice to me today. I just don't think they were prepared. Another mom said that its possible that few parents with kids like Jake have the balls to enroll them in such an ambitious activity. I still don't really know if he enjoyed it or not except that he actually WENT with the counselors the second third and fourth day.. which is a gigantic step for him.

Jake has a little plastic frog that he got from camp the first day, I think. Today he told his dad a whole list of things about his frog, like what it eats and where it lives. He talks about "Meggy" the counselor a little bit. It may not always seem like anything is getting through, and teaching him is far from instant gratification, but its worth it, I promise.

Tuesday, June 22, 2010

Summer extravaganza.

For those who are asking for updates and wondering if I've "quit my blog"... please understand that its summer. I had NO idea how challenging that this time of the year was going to be. Its a frenzy of not-being-able-to-work, less-not-more childcare and fun-stuff-to-do. I can't keep up at all. Manny has hit the "almost 3year old" stage that seems to be one of the most difficult times for children with autism. He is trapped inside of himself.. and is showing his frustration constantly, and can barely be taken in public for any period of time. He is on a sleep schedule of approx 10-11 PM until 4 or 6 AM.. which is a HUGE improvement. I can't even begin to describe. I feel pity, love and repulsion.. the thoughts that go through my head plague me. My greatest fear is the future. MY GREATEST FEAR IS THE FUTURE.

Jake is going to Aquarium Camp every morning this week, so my normal schedule is turned upside down, even with the (Omg.. are you an angel from heaven?) help of my mother-in-law. The counselers aren't making me feel all that great about dumping my special needs child on them (maybe its just my perception, but they have NOTHING positive to say) but he deserves camp, he's worked VERY hard to learn to act as appropriately as he can so that he can do these things. Whew.. two days down.. three to go...

I don't talk about my children a lot on facebook.. I post about all of the crazy stuff and partying that we do, but I do post pictures and videos of our adventures, so join me there if you can. Again, I'm just completely not prepared for this time in my life, and I can't even begin to write and blog about it right now. If you are truly curious, and a member of my family or a friend within driving distance, just call and come by the house, plan us a camping trip, or give me a call to chat. I'll give you an earful, but I'm toning down the "in real life" dialoge about my children and what's going on with them. I'm learning that that will polarize people, and its lonely enough already sometimes.

The Thingamifling was a success. If you were there, I hope you had a good time.. if you weren't you missed a good time.

Goodnight, and don't expect a lot of updates until something medical happens.

Monday, May 24, 2010

Summer vacation and Planning for next school year.

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 bratsacksbaby@yahoo.com 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.