Every day since we took our little turn about the city on the MBTA Monkey has asked, “Time? Yes? My turn? Green train? Blue one?” and today he upped the ante with “Green line?”
I guess we know what we can use for a reward if we need a reward chart in the future, lol.
This past weekend was easily the nicest weather we’ve had since last summer and we took full advantage of it! We really needed all that sun to dry up the 12 inches rain that fell in March. I thought we might start growing gills if it hadn’t let up!
Saturday was supposed to be a “lay around and be lazy all day long” sort of day but Monkey had other ideas. Almost from the moment I woke up he began asking to go for a ride on the “blue train.” Normally if he asks to go someplace he will quickly change his mind once I agree but I didn’t want to risk it this time so instead I gave him lots of reasons why we couldn’t ride on the train. And he kept eliminating those reasons while continuing to pester me, lol. He showered, he got dressed, he ate lunch, he put on his Crocs and grabbed my sandals even. D.E.T.E.R.M.I.N.E.D.
Duhdee thought this was hilarious and blamed my family for the behavior. He is kinda right on this. I think my mom would agree that there is one particular member of my family who, once he gets an idea in his head, is relentless in pursuit of it. *cough*Dad*cough* This is one reason Duhdee rarely tells me no when I want something, he’d rather not listen to months of reasons why we should do exactly what I want. He just skips to the inevitable. So, you can see why he thought this was so funny 🙂
We had a few errands to run and I hoped that I would be able to convince Monkey he would enjoy our plans just as much. You probably won’t be surprised to learn that after our first errand of the day (dropping books at the library) we found ourselves being dropped off at the nearest T station while Duhdee did the rest of the errands by himself.
The subway system in Boston has 4 lines, the Red Line, the Green Line, the Blue Line and the Orange Line. We rode ALL FOUR. It didn’t take as long as it might seem, we were able to do a loop in about 2 hours. We then caught a bus (another favorite of Monkey’s) home. He loved every minute of the trip. He was saying “Hello, how you doin’?” to everyone, lol. He sat in his seat with a huge grin on his face and kept telling me what train he wanted next. Fortunately, his plans matched up perfectly with the route I wanted to take.
After our ride we played in the yard which, I have to say, I had promised him 4 hours earlier for AFTER we ran our errands. Punk, didn’t run any errands and got to play in the yard. Who told him I’m an easy mark? 😉 We all went to the local farm store where we visited with the llama (with severe dental issues, you just have to enlarge that photo, lol) and the chickens, including peeps! Very exciting for both Monkey and I. After dinner we walked the dogs. Unsurprisingly, Monkey was out like a light shortly after we got home.
Sunday morning, around 5:15, we were woken up by a little Monkey standing by our bed with an egg. “Look! Egg! Awwww!” as he hugged it to his cheek. Duhdee managed to get him to go back to bed but 30 minutes later he was back again and we knew we were beaten. Monkey was thrilled that the “bunneh” had been to our house and hugged every single egg. When we asked him what was in the egg, thinking he’d open the egg to see, he told us “baybee pen-guin!” He wasn’t too disappointed to find that it was “only” candy and no baby penguins, lol.
Sunday afternoon, Great Grampy came up for a roast. Monkey was a little anxious about Grampy being in our house but the second Grampy left to go back downstairs Monkey was hot on his heels, lol. He and Duhdee hung out downstairs just long enough for me to clean up all the left-overs and dishes…hmmmm…that sounds a bit suspicious now that I think about it! Bums.
Sunday night was another walk with the dogs but this one was interrupted by a nasty encounter with an off-leash lab. Copper took the worst of it but he seems to be mostly OK, a little sore. Monkey was terrified. I think we’re going to have to find a different walking route, I don’t see how we’ll ever be able to convince him to walk past that house again. Bugger, it’s the nicest way to get to the pond :-\
I think that’s it…well, except for the cleaning but no one wants to think about that part now, lol. I’ll upload more pictures once I convince Monkey to share “his” laptop with me. *Ahem.*
I read through it carefully last night and there was not a single unexpected item in the entire document! So very exciting!
The bestest thing? In every location where it was appropriate, it was marked that Monkey be in a regular education program with special education supports. He’ll be pulled out of class no more than 20% of the time for ST, OT, AT and PT. By making one of his OT sessions a push-in session instead of a pull-out he moved from the 40-79% tier to the 80% tier.
This is important only because the district has poor record of including special needs students in the regular education classrooms. There is a disproportionately high number of students placed in out of district settings and in substantially separate classrooms given the district’s size. They are trying to make changes but not everyone is on the same page and as we move from IEP team to IEP team we’re going to need to be able to prove that he’s progressing in these settings.
We’re going to get resistance from the administration and from teachers at times because we aren’t interested in taking the “easy” route. I am sympathetic to the fact that teachers don’t always get the supports they need to be successful but we also know that there are ways to make this work. I believe that our doing whatever we can to get the teachers the information and support they need is a vital part of our fight to keep Monkey in an inclusive setting. I don’t think its fair of us to sit at the table and make demands of the district if we’re not willing to work just as hard as we are asking them to work to make this all happen.
I am so glad we’ve fought as hard as we have to keep him in an integrated setting, clearly he is making progress (and lots of it.) He has a lot to learn from and to share with his peers. I don’t want any of them to miss out on the opportunity by putting up any unnecessary barriers between them.
I finished charting all of the data that Monkey’s teacher tracks for us on our daily sheets (See HERE if you want a visual) and I’m seeing an interesting pattern.
His “regulation” and “participation” generally rise and fall together throughout the day, as you would expect. When he’s not self-regulated he can’t fully participate in the learning activities, totally makes sense.
What isn’t making sense to me is the bigger pattern. When you look at the data between September 2009 through March 2010 you see 4 or 5 days where he’s on an upswing and then 4 of 5 days when he tanks. It’s up and down, up and down…and it doesn’t line up with school breaks or anything that I can identify.
So, out of curiosity, do you see this with your children? It’s remarkably consistent, there must be something behind it.
We had our IEP meeting last Thursday, we still don’t have a copy of the IEP to sign. I asked Monkey’s teacher this morning and she said she gave the team a Wednesday deadline to enter changes. A week? I wonder what they’re changing, we didn’t have many comments to their draft. I like these people, they’re a great group of providers and I’d love to keep them for another year…but this makes me suspicious, I hate that.
Potentially adding to my paranoia, I bought “Wrightslaw: All About IEPs” and it arrived last night. I like the way it’s set up, it’s very accessible. After a quick browsing I’ve already picked up on a number of things our district does that they should not…maybe I shouldn’t read it after all, lol.
I had so much maple syrup yesterday that I think I will be sweating maple syrup for the rest of the week! We had…vanilla ice cream with maple syrup, maple whoopie pies, maple butter, more vanilla ice cream with maple syrup, maple peanuts…I passed on maple baked beans, maple cotton candy, maple doughnuts and pancakes with maple syrup. And this was all before lunch. I think I’ve had my fill of maple syrup for a while!
Maine Maple Syrup Sunday is one of my favorite days. We visited 5 sugar shacks, 3 of which were on working farms. We rode on a wagon pulled by a team of draft horses (“Cows!” according to Monkey, to the amusement of the gentleman driving the team.) We smelled manure and old silage…I prefer the smell of manure. We saw calves, pigs, cows, more horses and farm dogs. We froze our noses and toeses and enjoyed time with family and friends. See why I love it?
Monkey did not love it so much. We had to get up early. Everytime we stopped at a sugar shack he had to shut off his movie (either “A Bugs Life” or “Monsters, Inc.”) and walk around in a crowd. He was so completely unimpressed until he had a bite of maple whoopie pie. After that first taste, though, he followed Duhdee around with his mouth open like a baby bird. “Pie? I want? Monkey ((He doesn’t call himself Monkey. If we’re friends on Facebook, he says his name and replaces the middle letter with a “y” and it’s so frickin’ cute.)) turn?” He ate 1/2 of one…it’s a good thing he’s cute when he’s on a sugar high, lol. The bunny hopping and galloping were especially amusing.
And, to make yesterday even more exciting, I think I found a therapeutic riding location! It’s a long drive but they have Saturday hours and it’s not that far from my parent’s house so we could visit family while were up there too. Here’s hoping their wait list for Saturday hours isn’t terribly long (the locations close to us have 2 YEAR waiting lists!)
Yeah, so we had Monkey’s annual IEP update meeting yesterday and the most exciting part of the whole meeting was…Monkey lost his 4th tooth mid-meeting!
The rest of the topics were pretty unexciting. We talked about what sort of evaluations the school would be requesting for the 3 year re-eval and we were fine with all they suggested. We were happy to learn that his current providers will be doing the evaluations. It will make everything much easier on Monkey and I know they’ll get the best possible results out of him. I did suggest that if they do cognitive testing that they use the K-ABC test which I’ve seen recommended for kids with FX in the past but the psychologist expressed a preference for using just the Vineland. That is fine with us because parent and teacher report IS going to show his skill level much more accurately than any standardized testing will.
The team set goals for the rest of this year, everyone is excited about his progress. We’re pushing forward on new goals with only one exception…alphabet and number recognition. He is about 80% on identifying the letters at school (he’s probably 99% at home, just Q and Z sometimes give him a hard time) but the teacher wants this to be a solid 100% skill before moving on. Works for me. He is much less interested in numbers and he is basically guessing. If the card has a two digit number on it he will start at 10 and work his way up until he gets it right, lol. Definitely an area he needs to work on.
We had 4 things on the agenda we put together with our advocate and 3 of them were already addressed in the new goals. 1 was something the OT wanted to discuss with us. She wanted to change one of her OT sessions to a push-in delivery. Currently, he has 2 sessions a week and both are pull-outs. We wanted to request that they try to do more push-in services for him to keep him with his peers as much as possible. The OT was relieved, apparently a lot of parents prefer pull-out services and fight her on the issue. Not these parents, I keep telling them that this is the sort of thing that will play to his strengths!
The only semi-annoying thing at the meeting was the discussion of how many IEPs we need to write in the next 3 months! We did a re-write yesterday for his annual, we will do a re-write in June for his kindergarten placement beginning in September 2010 AND we need to do a re-write wrap-around IEP to bridge the annual IEP and the kindergarten one. Gah. So annoying. No one understands why but the order is coming from the SPED director and she is SO not a person you want to p*ss off, as many in our district have learned. Soooo, 3 IEPs in 3 months it is!
“Oh, how exciting! He can count to 30! ”
His teacher ratted him out this afternoon. He can, and does, count to 100 at school. The booger.
and…we discovered this all on our own…he can count to 30. He could probably go higher but he starts objecting around twelve and by the time he gets to 30 he’s not a happy camper.
*Covers ears* ALLLLLLLLLL DOOOOOOOOOOOONNNNNNNEE!
We stop the torture about that point although I will admit that I am laughing my @ss off at him the whole time ((Don’t call CPS, he’s grinning too!)).
The best part is, really, you can’t force anyone to count, right? They just stop talking and *poof* they’re done! Monkey has a weakness that we exploit mercilessly though. If we repeat the last number he said, he feels compelled to say the next in the sequence. It’s quite hilarious. Poor kid.
