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.