School

Duhdee, Monkey and I just finished an evaluation and I’m in a good mood. That never happens! Generally I leave the evaluations with a headache and a sick feeling in my stomach. I leave with all these reminders that our lives are not normal, we’re not even close but today…wow. I’d go back to visit this Dr. every day if I could, she made us feel so good about where Monkey is and where he is headed.

We heard things like…

• “He’s so bright!“
• “He finished all of the puzzles!”
• “He definitely has kindergarten level skills.”
• “He nailed all of his letters and numbers.” (Funny story there, the school says he doesn’t know them…we say he does…huh. Anyway, he was so into the numbers part that he kept naming every number he saw through out the eval and then in the elevator and then in the parking garage, lol.)
• “He’s ready to read.”
• “He’s so happy!”

Basically, everything we’ve been saying, I guess it’s not a surprise that I’m happy about it.

She did say that he is on the spectrum. He is not autistic but there are certain things, social activities and language skills that he is missing. He has some great skills but he’s one of those kids who is going to have to be taught every step of these interactions. She also said that it’s clear that we’ve been teaching him this stuff all along and just didn’t realize it. She also added that he WILL get it, she is 100% confident that he can master the skills.

So…not all roses…we wouldn’t have believed her if she had tried that on us anyway…but she listened to what we want for him educationally and she said she can definitely support that. Yay!

And when I got back to my office I had a message from the Assistant Director…we’ll have a meeting in two weeks to see what we can work out. I let her know that we feel like we’re pretty close which perked her up. I guess she was expecting someone unreasonable to call. I’m really glad I’ve been working on FRIENDLY thoughts these last few days. OH! And! It turns out our team leader IS available this summer depending on who asks *ahem*

I know I’ve been quiet, I haven’t even visited the blog myself since that last post. I told Duhdee that it just really sucks when all the things you want to say, shouldn’t be said.

But, here I am to give you the latest and greatest report on our latest IEP. The last day of school is now 9 days away and we have met with the team twice and exchanged several e-mails and we have decided…ready for this?

N.O.T.H.I.N.G.

We are no closer today than we were when we walked into the first IEP meeting. OK, that’s not precisely true, the team leader has at least acknowledged that not only are we, his parents, part of the team but we are the ones who make the ultimate decision. So! That is progress, right?

We have also accepted placement in a summer program with a wrap around camp. Monkey will attend the school program for 3 weeks (we miss one week because of vacation plans) from 8 – 12:30 and then at 12:30 he will go to the camp portion where he will swim and take field trips and make art projects until 3.  Basically he’ll have 3 weeks of full days instead of 3 weeks of 1/2 days. We’re pleased…we can also send him for an additional week of camp if we choose…I suspect we will. There is more progress!

Look at me talking myself down off the cliff, aren’t you proud?

All that we have to do now is…find a classroom for the fall! Easy! Except it doesn’t exist in our district. Oops? We’re going to tour the substantially separate class they had already picked for him (before we ever discussed progress or goals…AHEM!). They are still stuck on lunch, recess and specials (art, music, gym) even though I told them point blank at the last meeting that we won’t ever sign off on that…not when he continues to make progress in an integrated class. The team leader very enthusiastically told us she would have our IEP to us no later than…yesterday. They say they don’t want to go to mediation (for good reason) and yet they’re going to send us an IEP that we will have to reject, at least in part. I guess that buys them a little more time to try to wear us down.

A fundamental problem here is that they want us to trust them to do the right thing by Monkey and we are unable to do that. They are unable to understand why we don’t trust them and yet continue to do things like…plan an IEP meeting knowing that the OT won’t be there. It is not OK for the OT to miss an IEP meeting for a child with Fragile X and it’s not OK to schedule the meeting knowing that the OT would miss it and not tell us.

At some time in the next week they will have his teacher hand us a form to sign excusing the OTs abscense. It’s just a formality she’ll say, as she did the last time someone missed a meeting. Of course, it won’t be just a formality when we refuse to sign it. Then it will be one more violation in a long list of violations of federal law. See why they don’t want to go to mediation? 😉

I’m not going to get into details because nothing was decided. The meeting ended up being a forum for the school to argue their case for Monkey’s placement for next year. We were not surprised by anything we heard. We had read the reports and could discern the direction they were leaning. Duhdee and I…disagreed with… their conclusions; conclusions they reached based on the district’s ((outdated)) special education philosophy and not targeted for Monkey specifically. That is to say, they are not picking on us. They are simply…misguided…in our oh so humble opinions ((Stop laughing!)).

There were a few things that were said that were rather upsetting ((UNDERSTATEMENT OF THE YEAR!)) and we are working on our counter arguments and, also, preparing our argument for the placement we believe is most appropriate for Monkey. This all sounds so civilized doesn’t it? Some of you know better 😉

SO. The details are unimportant right now because it’s an ongoing discussion. There is something very important I want to say about the last few days. I suppose I should start with my mindset going in to yesterday’s meeting. If you have a child with an intellectual or developmental disability, you will know exactly how upsetting these reports always are. Even when the reports are glowing in reference to the progress your child is making, they are devastating when they (necessarily) point out how far behind your child is. It is heartwrenching and it is disheartening.

Speaking for myself, they make me question every decision I make about Monkey. Would he be so far behind if we’d done more or made different decisions? I feel personally responsible for everything, right down to his very genetic make up, that has put us in this situation. I don’t blame myself ((Down Holly!)) but I do feel like I should have worked harder somehow. Self-doubt creeps in.

I left for that meeting with those awful, dark voices whispering in my head. I’m failing him. I have made the best decisions I could and it’s still not enough. Maybe they’re right. Maybe I just need to let them decide. Maybe they know best. Maybe Monkey would be leaps and bounds ahead if we’d just listened back when he was 3 and put him in a self-contained ASD classroom.

Fortunately for me I have this personality quirk…I’m allowed to question myself, to doubt myself, but no one…NO ONE…is allowed to talk down to me or question my intelligence. I am allowed to question whether I ((or you)) have done enough to bring out the best in Monkey but no one…NO ONE…is allowed to question his potential. To do either enrages me. To do both…not good.

Some of you picked up on how angry I was yesterday…and I was much more polite publicly ((Except for that unfortunate incident at the grocery store when they would not let Duhdee buy me the wine I had just spent 20 minutes choosing! Dicks.)) than I was in person. The texts I sent yesterday alone would probably win me a spot in hell 😉 It could have been really bad. I could have sent angry e-mails to the school. I could have continued in that useless spiral of anger but instead the most amazing thing happened.

You. You all lifted me up when I couldn’t see through the anger and hurt to do it myself. The support I received from other parents got me through that first rush of anger and despair so I could get to where I am now. Where Monkey needs me to be.

I have remembered why we have made all the decisions we have. I have remembered all of the inspirational stories you have shared about your perseverance and your kids’ resulting achievments. I have remembered that the only person with the power to hold Monkey back is *ME*. And I will be damned if I let that happen.

So, thanks to you all, we are re-committed to, and confident in, the course we chose 4 years ago. Monkey belongs. No matter how you phrase it, no matter how well meant it may be, you will not ever convince me that he doesn’t. I have the love and support of hundreds behind me…you will not win.

I just found this, wrapped carefully, in Monkey’s backpack.

I assume that Monkey made this. I also assume it’s supposed to be a bowl. Whatever it is, it is our first bit of school-made pottery…and I love it.

Today at school, Monkey was sitting at circle time enjoying a story. Well, he seemed to be enjoying a story right up until the point where he…*SNORED* loudly. The rest of the kids thought this was hysterical and *LAUGHED* loudly. Of course, you know what this means, right? Monkey spent the rest of the day just randomly making snoring noises. His poor teacher. Hopefully he comes up with a new joke soon! ((Holy cwap! TWO positive posts in a row! Hopefully that means it becomes a trend! I certainly would enjoy more !!!))

Oh, I’m going to get some great search hits from that title *smile* ((Did I mention that I got one recently that has cracked me up randomly since I saw it? It was: why do my balls smell like maple syrup? *Snort*))

What I meant, is that once again I have two drafts in my drafts folder that I’m too chickensh*t to post. The first one was downright depressing and the second one started out talking about the first in general terms and then fresh ugly stuff erupted. I hate when that happens…terribly messy.

So (in my best chirpy voice), let’s talk about Monkey.

This morning Duhdee was really, really sore ((His sciatica is getting worse again after so much progress *sigh*)) so I was on my own to get Monkey ready for school and I did it in record time, I might add. He was bathed and fed and dressed early enough that I let him use his laptop for a while.  He was happily watching airplane videos while I finished getting ready and when I grabbed his coat he closed down YouTube, put his jacket on and then ran…away….as in, not toward the stairs which lead to the truck which takes us to school. Grrr. It had been going so smoothly and now I’m going to have to drag him from his room, down the stairs and to the truck and probably into school for good measure.

I walked into his room and, just as I’m about to open my mouth to bark a few orders at him, overhear him saying “Are you? Are you?” while he looks through his toy storage…thing…I should post a picture of it, it’s quite cool and I designed it myself. Anyway, I asked him what he was looking for, not expecting an answer really when he stopped, looked at me and said, “Airplane.” 

Thankfully, I actually knew where that was. Once I handed it to him he trotted off toward the stairs yelling, “Ready! Ready!” Woot! Any morning free of Monkey-wrangling is a good morning.

And that’s what I need to focus on right now…another good morning…

I spoke to Monkey’s teacher this morning, since she’s the teacher she is the team leader and I know (and love) her, I thought I would ask her about it.

So. Yes, it reads like a 3 year reevaluation but it’s really only an annual. Kindergarten is such a big year for kids and he’s come so far they want to repeat the evaluations again. I made her say ((Twice.)) that it’s an annual meeting. So we are ALL clear.

And I’m still e-mailing Super Advocate copies of everything before I sign anything.

OH! Also! They hired another assistive tech specialist so the district is back up to two…from zero in November when our tech specialist passed away. That’s the good news. The gooder ((It’s Monkey Monday (geeze), cut me some grammatical slack!)) news is that his teacher acknowledged that Monkey has not received any of his tech services since November and that the school must make them up. The less good news…the new specialist has been assigned to Monkey’s school so we are transitioning to our 3rd tech specialist in 5 months which means she isn’t going to know how to use Monkey’s device and will need training…which will be the 3rd training session we’ve had to set up with the device manufacturer.

Oh, and, Monkey hates the device. You know, the one we fought for two years to get my insurance company to buy for him? Yeah, that one…ugh. We knew he wasn’t a fan of it at home but no one has said anything about him refusing to use it at school before. The teacher confirmed this morning, when I brought it up, that he hates it and does everything he can to avoid using it…which has resulted in him popping out with some new words…he’ll say anything to avoid the stupid thing. Not precisely what we were going for…