Annual IEP, check!

This morning we had Monkey’s annual IEP meeting. We walked in expecting…nothing…since we already knew that he was staying at this school, that his teacher was changing but that the classroom aids would remain the same and who his classmates would be. All that was left were goals and we don’t sweat IEP goals. This is the one area that we’ve always trusted the professionals to handle responsibly. Sometimes we’ll comment if it sounds like it might not work because of an FXS related quirk but most times we just smile and wave.

The meeting was as anti-climatic as expected. Monkey has met a lot of goals this year and made progress on the rest. Everything was stepped up a notch but his main deficits remain the same so the target areas remain the same as well.  After we had worked our way through all the steps of the IEP we reached those last few pages…the ones with supplementary aids & services…that’s where it got a little fun.

Though we had amended Monkey’s IEP since we had signed the horrid thing to get away from last year’s team, there were still some remnants in there. Monkey’s teacher was asking to remove some things, like the note that said though his parents wanted him to be included in Science it wasn’t happening. We deleted the ridiculous note recording our protest of the math substitution as well.

Then his teacher slid a page across the table toward us and asked us if the “Vision Statement” was accurate.

The team envisions that with the additional support of a self-contained classroom, beginning in September 2011, Monkey will make progress with the skills required to be increasingly included in the general education classroom.

I looked at it and laughed and told her, “This is not our vision statement. Ours was rejected, this was written by the team leader and it’s ridiculous.” They could not believe that our vision statement had been rejected, she said, “If you say you want him to grow up to be a missionary in China, I will put it in there!”  I then told her that our Parent Concerns was also rejected and rewritten but we’d won that battle. Honestly.

Just as we were winding down she looked at us and said, “When Monkey first started here I looked at him and I looked at his IEP and I looked at him…it wasn’t the same kid.” All we could do was nod, we knew that the IEP as written last summer was not appropriate but we were unable to get the team leader to back down.

I’m beyond the1anger part of it now. Now all I really wish is that I could see the team leader again, or at least his teacher, and talk about it because they didn’t do themselves any favors by digging in their heels so drastically, they didn’t do Monkey any favors by distorting his abilities and challenges and they didn’t do his new team any favors by preparing them for a child who never existed.

I’m so grateful that his current team members were able to see him for who he is in spite of it all. It just reinforces our main contention all along which is, if you give him the chance, he will prove himself. Every time.

Onward to 2nd grade we go!


It’s not too late!

I posted this a while ago, Excitement and Disappointment, trying to raise additional money for the NFXF’s scholarship fund to send MORE families to the July conference. I received a stack of notices from the Foundation letting me know that some of you even donated money in my name which made me cry, you guys are the best.

I’m so excited to share an update! Based on some cancellations and the money that was donated, we are really, really, ridiculously close to offering a scholarship to everyone who asked. Given where we started, with the Foundation heartbroken over having to say no and the disappointment the families who were told no faced, that’s pretty awesome.

What is *most* awesome, in my opinion, is that this money is coming from our OWN. It’s coming from moms & dads who may not be able to go themselves but want to help someone else, it’s coming from people who’ve been before and know what a huge difference attending will make to those who haven’t had the chance to go before, it’s coming from friends with no other connection to FX but love of one of us…see?? Awesome.

I just want to say that it’s not too late, there is still time to send a little something to the scholarship and help change a family’s life.

Add a note in the acknowledgement area directing the money to the scholarship fund!

Today you are eight.

Dear Monkey,

I’ve been sitting here and staring at this blank screen watching the cursor blink for a long time, much longer than I expected. So many times I sit to write about you and the words flow like magic from my fingers, not because I have any particular magic but because you do. I’m having trouble today finding the right words to convey what’s in my head and my heart.

When people describe you, “soft” is one of the most commonly used words…soft curls, soft brown eyes, soft skin, soft heart. Everything about you brings out the protective instincts in those around you and sometimes I know we baby you too much because of it but you’re so patient with us.

There is also a quiet strength that I think a lot of people miss. When someone hurts you, intentionally or not, I’ve seen you take a breath and look to either Honey or I as you try to figure out how to feel about it. There have been times when I’ve thought, “Smack him…don’t take that!” but you always forgive them. You shake it off and give them another chance to do better, to be better. I wish I knew how you did that.

You have a way of making the most average of days fun. When I’m with you it’s hard to take my eyes off you. I find myself watching you…waiting for that mischievous twinkle in your eye that signals things are about to get hilarious. Even when I’m completely wrapped up in you though, watching you, you can still do or say something so unexpected that I’m taken by surprise by my own laughter. The pure joy that I see on your face when you make me laugh makes me feel like I’m the center of the universe.

You also can see right through people…right to the core of who they are. If you like someone I know, without a doubt, they are a good person. There have been times I’ve watched you interact with someone and I think, “Really? This one?” but it’s only because I let myself get hung up sometimes on how a person looks or talks or dresses. It only takes you a few minutes to bring out whatever it was you saw in them, a sense of humor or patience or kindness, and let everyone else see it too. Last week you took a picture of Daddy and I that left me speechless. This photo did for me what I’ve watched you do to others over and over and over…it shows the essence of us…our love of you. If this is what you see when you look at us then I know we’re doing alright by you.

Love you always,