School

I so desperately want to invite Monkey’s last IEP team leader to visit him at the new school. I want her to see what he is capable of. I want her to consider that perhaps they didn’t handle him ((or us)) in the best way possible. I want her to see that she still has things to learn.

I know this all sounds bitter but I’m really not, not anymore. Sure I have moments when we are celebrating a new achievement and “In your FACE!” pops into my head but mostly…mostly I want them to do better because there are other kids headed their way who could benefit if they saw what this school does. Which is insane, the two schools are part of the same district. They are .8 miles apart, a 4 minute drive, and yet they are years apart in practices.

What I wish she could see is what Eric described to me yesterday at pick-up. First, on the way out of the school, the principal said goodbye to Monkey and addressed him by name. That has not ever happened in any of our schools. The principals were out in the halls in the mornings and afternoons but they never knew us, they never knew him. For the first time we feel like we are part of the school and not on the fringes. That attitude, recognizing that WE too belong to this community, results in some pretty amazing experiences for a family like ours.

For example, when they stepped out the front door, Eric bumped into a new friend we needed to catch up with. While they stood and chatted a most amazing thing happened…Monkey approached some kids on the playground and engaged them in a game of chase. We see this sort of thing with his classmates but these were not classmates, in fact, when another child approached one of the other boys and asked him what he was doing he said, “Playing chase with this kid.” He didn’t even know Monkey.

This school does such an amazing job of including kids with special needs, and autism in particular, that the rest of the school just accepts them. It’s no big deal to play chase on the playground with a kid who screeches excitedly. He’s just another kid.

Lest you think this is an isolated incident, after they finished playing chase Monkey approached two boys who were playing volleyball over the main gate of the school. He stood and watched them, he loves to watch kids play, but they weren’t satisfied with that. They decided he was going to play too and made sure to throw the ball to him.

Such a little thing maybe, playing chase or ball on a playground, but the acceptance of Monkey with all his little quirks is so casual that it becomes a huge deal to families like ours. And it starts with the principal who decides that we belong and that learning Monkey’s name is important. It starts with teachers who buy into that idea and decide that creating acceptance of all students is just as important as math.

I never expected to be in a place where I would completely and utterly forget that we had an IEP meeting approaching.

After all the battles, I had become accustomed to days or weeks of preparation and fretting before each meeting. We would consult with our advocate, we would research, we would pour over every written communication since the last meeting, we would chart his progress in Excel and if you happened to be one of my SKYPE pals you had best be prepared for us to pick your brains…repeatedly….insane, right? But, that was life in this district. At every turn we expected to be told, “He doesn’t belong.” and we were never disappointed. We always needed to be able to prove that they were wrong. He does belong. He belongs with his peers. He belongs in the classroom. He isn’t an object to be pulled out at recess or lunch.

As a completely refreshing change of pace, we walked into today’s meeting questioning whether we even needed a notebook ((We did take one, but did not take a single note.)). Given the fact that we’d reached a place last summer where we were strongly considering a tape recorder…that’s pretty impressive. We’ve been getting regular communication from Monkey’s teacher, she’s very matter of fact in pointing out the positives and the not-so-positives. When she points out a problem, she always has an idea of what to try next. She clearly finds Monkey to be an engaging, funny, lovable little guy, as all of his teachers have, but she also knows he’s smart and full of potential. She won’t wait until the next meeting to bring up a concern because that would be wasting her time, ours and Monkey’s. It’s very refreshing!

So, we walked in expecting nothing major and that’s what we got! He is making progress in all areas. Switching him from the inclusion room to the smaller room for math and substituting writing workshop is going very well. Writing workshop is more suited to his strengths so he’s less anxious in the classroom in general and becoming more social with his peers. They’ve increased his inclusion by using reverse inclusion for afternoon circle and Monkey LOVES having his friends from the other classroom come visit him on “his” turf…he shows off for them even. They’re continuing to work on ways to increase his independence.

There is one class he’s having continued struggles with though…music. So many kids with fragile x love music, Monkey is not one of them. They realized that this class is the most unpredictable of all of his specials. The teacher will randomly call on students to sing or dance and Monkey’s anxiety over being called created some issues. He would go limp noodle and try to escape, lol. They’ve given him a tool to use in that class, he can turn his “Not Ready” card over and he knows the teacher won’t call on him, and it’s working, to a point. He no longer goes limp noodle and tries to escape but, just before break, he let his teacher know he’s not quite completely comfortable in there yet.

They were standing in the hall, outside the music room, when the music teacher approached them. Monkey ducked his head and said, under his breath, “Shit, here she comes!” *snort* Yep, they’ve still got a ways to go there but I know she’s already thinking of new things to try.

**One little unrelated note, I redid my long neglected “About” page…so if you’re new here ((And, gosh, there are a lot of new people popping up lately!)) it might be a good quick way to figure out just who the hell I think I am ;-)**

 

I have another grumpy-ass post eating at my brain but I am going to stick to fluff today. I need a break from me…

Monkey has been working really hard at mastering sight words at school. His teacher sends home copies of the books he is able to read so we can read them at home too. She also sends us a note detailing the ways in which he attempts to manipulate her to get out of doing the work and how she redirects him so we can be consistent in our approach at home. Ahem.

Clearly, he’s not reading War and Peace. The sight word books generally have 1 sentence per page and maybe 8 pages total. The sentences are also generally repetitive. “I see a cat.” “I see a dog.” “I see Mommy’s attention wandering.” That sort of thing.

Given the repetitive nature of the sentences and the fact that he’s read the book several times before we ever see it, it’s hard to know how much of it is his memorizing the story vs. how much he has actually learned to recognize the words.

Last night two cool things happened during forced story time:

1. Caleb excitedly allowed me to read a story to him! Usually he resists and I end up having to tell him, “Sit down, we are reading.” or “No, I won’t get out! We are reading.”
2. I was reading him a book that he is not using to learn his sight words from (Green Eggs and Ham) and I would pause during the story when I came to one of the sight words he has supposedly mastered to see if he actually recognized them in a different context and he did GREAT! I was so proud of him.

After we finished, he wanted to look at the book some more by himself. Since it was bedtime I hesitated, if we stuck to the routine I needed to say “Good night, sweet dreams, see you in the morning!” and shut off the light. It isn’t a good idea to break up a routine in general but the bedtime routine especially is carved deeply in stone, the result of many, many ((many, many, many, many, many, many, many, many, many, many, many, many, many, many)) nights of misery. I stood, hesitating, but Monkey was already absorbed in the book again. So, against my better judgement, I turned on his bedside lamp and told him, “OK, 5 minutes.” and left the room. GAH!

I went and stood next to Duhdee looking a little wild-eyed. “I told him he could read for 5 more minutes.” And then I stood there for a minute before it sunk in and then I grinned because DUDE! My kid had just ASKED to keep the book. My kid was reading QUIETLY in his bed!

When I went back in 5 minutes later he handed the book to me without complaint and told me “Off” while looking at his lamp. I told him “Good night, sweet dreams, see you in the morning!” and just as I closed the door I heard him say “in morning, money.” 😀

This past Saturday Duhdee, Monkey and I went to dinner with some new friends. The little girl, N, has Down’s Syndrome and is in the general education class that Monkey goes to for inclusion.

We met N’s mom over the summer, they just moved to the district and N was at the same school as Monkey for the summer session. She stopped us to talk about what we’ve been asking for and receiving for Monkey from the district. This was right in the middle of our OMFGWDHAFIEP ((OMFG We Don’t Have A Fucking IEP)) period which probably made us poor candidates for that conversation but she didn’t back away from us slowly and run! Which immediately makes her our kind of people.

I was a little anxious ((Right? I should search the blog for that phrase, I am guessing it is the most used phrase here.)) but without any reason ((Another common theme, I wish I could remember this when I am so anxious.)). Monkey briefly hesitated when we got to the front door but after less than a minute he walked into their house, took off his shoes and immediately went upstairs with the kids. **Blink**Blink** For the rest of the evening the kids would periodically run upstairs ((Monkey insisted that if one of them went they ALL went, including N’s older brother.)) to find a toy and then bring it back down to show everyone.

When Monkey wasn’t completely making himself at home with the kids, he was sitting at the counter in their kitchen giving cooking instructions to N’s Mom and Dad. He was absolutely hysterical and they had a great sense of humor about it. They totally understand that when you wait over 4 years to talk, you have an awful lot of things to catch up on 😉

Once dinner was ready the kids sat on stools at the counter and ate while the grown ups ate nearby at the table. Monkey ate a little of everything and asked for more rice. I was so proud of him for how independent and how polite he was! New place, new people and he acted like he owned the place.

As if having a lovely dinner with great new friends wasn’t enough, N’s mom shared a reading program they are using with N and it looks like it would be *great* for kids with fragile x too. And it’s FREE for downloading. Who doesn’t love free?

Check out See and Learn.

Monkey’s new school has a very small playground/courtyard between it and the street. It has been fenced in for safety purposes since the kids stay outside until the first bell rings ((Weather permitting.))and has two gates. Here, let me illustrate:

On day one we walked through the main gate and you know what that means, right? It means, we shall never enter the side gate. Ever. In fact, we shall never look at it…not even when Umma walks through it. We shall continue down the sidewalk, watching her out of the corner of our eye, acting as if she has simply ceased to exist until she reaches the main gate. Then we shall grab her wrist and hold on so tightly that we will leave indents. Or something like that.

Since I can never just leave well enough alone, I have tried to convince Monkey to use that gate periodically since the start of school. Every time I do it I hear Amy Winehouse in my head….”I won’t go, go, go. ((Hey, it makes morning drop off more bearable, shut up.))” Monkey has even been grabbing my wrist before we got anywhere near the gate lately to keep me from even attempting to deviate from his routine.

Totally not a big deal, right? Right. Except…I can never leave well enough alone…I don’t know why I need to pick until it bleeds I JUST DO. So, this morning, I evaded Monkey’s desperate grab for my wrist and slipped through the side gate. Before I was able to even draw in a mental breath to start singing along with Amy, Monkey slipped through the gate and took my hand. I nearly froze but stopping would have been disastrous…he likely would have ripped off my arm and dragged it through the main gate and I’m sort of attached to both of my arms ((OMG, I crack me up.)). Then I heard Monkey say, under his breath, “Spwash.”

There were puddles on the playground. Monkey loves puddles but Monkey had been instructed to stay OUT of the puddles because he tends to end up soaked to his knees otherwise. I didn’t even think twice, I whispered, “OK, go splash.” And he did. And we were both thrilled.

He might not ever walk through that gate again but he and I now know that he can. And that’s enough for me.

 

Soooo, I mentioned that we signed the “hateful” IEP this summer just to be done with the team and get Monkey moved to the new school. If you thought I was overreacting to how awful that IEP was and how much it DOESN’T fit Monkey, let me just say…his new team HATES the same darned things. Talk about feeling vindicated. When we left the room I said to Duhdee, “Now I really want to e-mail that bitch.” ((But I won’t, bygones and all that mature shit.)) ***Deep breaths***

So let’s talk about the most amazing IEP ever in the history of…ever.

First of all, everyone who needed to be there…was. Woot! ((Why, yes, yes we do have low expectations!))

Secondly, the TEACHER brought an agenda…an honest to goodness agenda that she handed copies of to every member of the team! Woah. ((Our advocate has ALWAYS had to bring one before and it was met with widely varying reactions.))

Thirdly, whenever she or anyone else on the team said anything that could have been taken negatively, she would add “We’ll talk about how we are going to address that at the end.” OMG. ((SRSLY? They had SOLUTIONS not just problems??? What alternate universe are we in??? And, can we stay??????))

We started the meeting like every other IEP meeting, except for 1-3 up there, and got through all of the progress reports. Not everything is going hunky-dory…Monkey *is* a challenging kid in his own way. He’s happy and social and funny and all of those amazing things are terrific, except when he’s being happy, social and funny during, say, quiet reading. Can I just say how much I love the fact that all of Monkey’s “behaviors” involve him being TOO awesome? I love it.

Back to the meeting, some of what we were hearing started setting off alarm bells. Every time I heard them talk about his behavior I knew we were looking at another argument over inclusion. Knew it, knew it, knew it. I started feeling queasy but Duhdee and I had already agreed on two things:

1. It’s too early in the school year to make big changes, they even said he’s just getting comfortable with them all ((Every single person on the team, except the PT who he worked with the summer after he turned 3, was new to us and to Monkey.)).
2. If the Gen Ed setting is too much then we needed to discuss reverse inclusion before anything else.

I had those two thoughts running through my head like a mantra. Then it was the Gen. Ed. teacher’s turn…I was scared, no lie. She started off talking about what he does well. He likes the quiet reading time in the morning and he will sit with all the other kids on the mat and quietly look at books, he likes morning meeting and is making great progress there ((Some classic FXS behaviors are showing up, not looking at the person he’s greeting, hiding his face when the attention is on him.)), he’s participating more and more.

Then she brought up math, she had this look on her face…she was really nervous about this and I tensed up ((Which, she saw and switched her eye contact to his teacher for some support…oops.)). She expressed concern about his ability to sit and participate in math. The math class uses lots of manipulatives and Monkey isn’t one to sit and wait for instructions. Also, the social demands are really high because math is done with a partner…which Monkey struggles with. Yes, he is social, but he’s not great at turn taking or not knocking over his partner’s work and grabbing stuff for himself…yet.

I interrupted her there and said, “Can I just interject something, please?” She looked back at me and nodded. I was nervous too because I wasn’t sure how they were going to take this but, I said, “We thought having him in math for inclusion was a really bad idea. Really bad.”

No joking, the atmosphere in that room changed in an instant. The relief was palpable. They were *astounded* by this piece of his IEP. Duhdee and I looked at each other and barely held it together. I told them that we wanted science or some other academic area…ANY other academic area in there instead and that we’d fought this all summer long. They suggested having him in Writing Workshop, which I had ALSO suggested and was turned down flat. So, now, Monkey will go to the Gen Ed class and stay there for the first two hours of the day, every day.  There went 4 transitions out the window with that one small change. It also works with some of his other goals which had the ST and OT very excited.

I also addressed the ST and OT who had been struggling with how much of their time was required to be done in the Gen Ed setting. I told them that if we had signed the IEP that was proposed initially, Monkey would have had virtually NO inclusion. He would have spent no time in a classroom in academic areas. The only way we were able to get that inclusion time was to have a specialist with him. Monkey’s teacher looked at me and said, point blank, “That won’t happen here.”

Then it was time for Duhdee and I to relax.

There is another area that he’s having trouble with too…Art. There are lots of reasons this one isn’t working for him but the biggie is that it is 45 minutes long and the teacher gets upset if the kids leave their desks. Ahem. Also, they spend 3 weeks on each project…that’s not Monkey’s style. So, they’re offering a modified art class with some other kids who can’t handle the Gen Ed setting art and we’re fine with that.

We concluded with this…they’re re-writing or taking out some of the inappropriate or duplicative goals. We’re switching around some of his inclusion activities but not reducing his inclusion time, in fact, they were happy to hear we’re fine with reverse inclusion so I think we may even see an overall increase. The ST and OT are not required to do their sessions in the Gen Ed setting which will give them more time for working on some stuff he really needs 1:1 help on. They’re also adding in goal for the device itself, which we had argued over too but the AT specialist wanted to “piggyback” not have her own goals. So.

Basically…it was the perfect IEP meeting. We love this team. We love this school.

When we drove away from the school, I started crying and, for once, they were happy tears.

It’s not secret that Monkey doesn’t exactly excel at morning transitions to school. We hardly ever have mornings when he holds onto me for dear life until we manage to pry him off and run like hell leave him in the loving arms of his teacher…but they’re are still iffy enough that when we have a good one it feels like Christmas.

It was Christmas here today, on a Monday no less!

Lately Monkey has been asking for “two monies?” on the way to school. We keep a fair amount of change in the car for parking meters and random panhandlers, so I started handing him two quarters. He’d say, “TWO of ’em!” and then ask for “two more monies?” This goes on for just about the entire ride. I make him count how many he has in between to slow him down otherwise we’d have no monies left! It’s been a win-win since he loves money (we’re working on “coins” he can say it but he prefers “monies” lol) and we love a happy Monkey. I even took some into the classroom one day last week and bribed him with it. “When you walk into the classroom, I have 3 more monies!” It worked.

This morning, I realized that we’re going to be broke before too long so I switched to dimes. I expected him to pass them back but it seems that if the coins are all the same, he doesn’t mind what denomination they are. Woot!

About half way to school, when Monkey asked for more monies I told him I would give him TWO MORE when he walked into the classroom. He asked two more times and both times I said, “You can have two more when you walk into the….” and he would fill in “classroom.”  Awesome.

When we got to school, we had to double-park again, which Monkey hates. Then Money did something really stupid, she walked in through a different gate. Monkey was having none of that nonsense and he guided Duhdee to the main gate we typically use. As I was walking to join them I was beating myself up a bit over the double-parking which I knew would bother him and then changing the entrance location. On a Monday. Stupid, stupid. I wasn’t terribly hopeful for the rest of the drop off but he totally rocked it!

He grabbed my hand as soon as I was within reach and he held onto it so tightly, I knew he was making sure I stayed on target ((Some day he may realize that this is an exercise in futility, Money is not a stay on target kind of girl. Anyway.)). Then we strolled on into his class! He took one small break at the trophy cabinet just outside the classroom door but as soon as I reminded him of the monies he walked in with a big smile on his face.

Yay Monkey!

I told Duhdee that a drop off like that is totally worth the $1.20 in dimes. We talked to the teacher last week about bringing in a bank of some sort so they can use it as a math lesson (and a savings lesson since he gets to keep the money, the teacher holds on to it during the day.)

I wish I could find a bank that gave receipts. He is his father’s son, he demands receipts everywhere we go…even at the yard sale I took him to a couple weeks ago, lol. He’d be in HEAVEN if he got one every morning, lol.

 

I have all these stories stored like nuts in my fat, little chipmunk cheeks and I think it’ time to share them or risk exploding and spraying chunks of chipmunk cheeks all over the place! Ewww, nice visual. Also, welcome back!

So…I now have so much to say I don’t even know where to start. Let’s start where I left off…the IEP.

We signed the hateful thing. We signed it so we could get Monkey into a classroom at a school that does inclusion well. They are the model for ASD inclusion in our district. There are a lot of things to love about the school. It has an extended day so Monkey will be squeezing an extra school day into each week. Because of the extended day, they are able to provide the kids with a lot more individualized support and a lot more enrichment activities. ((He will be getting extra gym, music, library, etc.)) Awesome. The school also has school uniforms. Not a big deal for Monkey, he will wear a collared shirt if we insist, but probably not awesome planning for some of the kids on the spectrum. Not our problem, I guess. I did at least raise the issue in a “what if this is a problem for a child” way, and I got two responses…one was, “Huh. I never thought about that!” ((And she was the school psychologist at the old school)) and the other response was, “Well, we won’t force them if it’s an issue.” ((Right, because the one thing our kids need is another reminder that they do not quite fit in with everyone else))

So all is set, the IEP we signed calls for them to provide us with all of their data every two weeks ((Any information they gather on his progress, the class has some ABA aspects so data collection is a big part of it.)) and a full team meeting every four weeks ((Fine, it says four to six, we are just going to pester them to set them up every four weeks.)). At one of our final meetings someone said that they aren’t used to parents who want to be so *pause* “involved,” I thought that was a nice way to communicate what royal pains in the @sses they think we are. 😉

Wait, did I say all is set? Oops…there is one little thing that is not quite settled. We received two letters yesterday. One from the transportation department offering us a bus for Monkey and the other from the district assigning Monkey to his 1st grade classroom. Both letters indicated that he would be attending a general education classroom at his old school. Nice.

I’m sure it’s all perfectly under control though ((Dang, I have missed my footnotes! Does it show?)).