Thursday, October 28, 2010

Thursday, September 16, 2010

Back to school... take two!

Every moment of this week has been awesome since Monday morning. Hours after my last post Manny was offered a place at two different private preschools, as well as a part-time place over at a new program. Between the two we managed to get him back into a 5 day schedule within a couple of days. One of his former teachers (not his teacher this year) came over to me and did a little dance and sang "We got Manny! We got Manny!" I smiled all the way home. They sent a note that said "He had SUCH a great day today! Ms. P and I couldn't get over how much his gross motor skills are improving! He climbed all over the playground equipment :-) And he even spoke a few words to us!" He's a PERSON to them. Sometimes it takes a bad experience to make you appreciate the amazing people in your life.

I don't think I've stopped smiling since Wednesday. I've gone back to the gym, I've been dancing again, bags have been sewn, reservations for the Market this Sunday have been made. Karen has been in the sewing room helping me and becoming part of the Bratsacks team. Life is somehow even better than before.

Jake came home today with his report card from Kindergarten. He's "in progress" on everything. That's OK. Something tells me that both of my kids will be a "work in progress" their entire lives. Heck, I am a work-in-progress myself. In Jake's backpack were the most wonderful pictures I've ever seen. I opened the envelope in front of my mom and husband and my mouth fell open. "What kind of miracles are they working up there at that school?" I whispered. I can't wait for the order to go through, I MUST show off the proof. MY baby, smiling at the camera WITHOUT HIS HAT! This is his first professional portrait:

On Comments:

I've never had much respect for the Anonymous Comment and I don't think I've ever left one. I've published a few that showed up here, most I've deleted. In my opinion they mean: I'm ashamed of what I'm about to say, or I'm ashamed of who I am, or both. I can deal with the comments that have said "You are in denial," "You are insane," "You need to get off the drugs." I was shocked at at the comment saying that Manny shouldn't be in a class with normal children, and the comment that told us to "be careful, bad things happen...". I didn't know that sort of intolerance still existed. Fortunately my life has been an open book for so long that I have grown a pretty thick skin, and I think that confuses people with something to hide. I would have continued to endure such "anonymous" comments except that some of them have contained Manny's full "real" name, which I never use online, or in real life for that matter. After a quick poll of my friends it became apparent that even those close to us are unaware of how to spell his full name. Only teachers and doctors call my children by their "real" names.

***This indicates that at least some of these comments could have been sent from people who have access to Manny's former classroom. As disheartening and downright frightening as that is, it only solidifies our confidence in our decision to remove him immediately, once the first few nasty comments came in. ***

I have disabled comments on my blog, because it has become a vehicle of harassment, and that is just silly. I enjoy the input, advice and support that I received in my comment-box until Friday, so if you are a regular poster and interested in commenting, please send me a message and I'll add you as a member. You can also send any negative commentary to the same address provided by this blog.

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:

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.