Dialing it down a notch.

So, yesterday, I went a little “Mama Bear” on you all…I’m not apologizing and if you haven’t already read Do You Really Want A Cure…go do that, OK? It’s important stuff that clearly gets my heart rate up! THAT is the face our IEP team members see when they let Monkey down and don’t do right. I might have earned my reputation with certain folks in the district.

There’s something else I’ve been wanting to talk about that is also very important. Speaking to your child’s classmates. There is nothing like the zeal of a new convert, eh? A lot of people have been doing this over a long period of time and they do it very well. Of course I’ve read Holly’s blog on the NFXF, I’ve listened to the podcast, I’ve attended her presentation at a conference. The girl knows how to do this really well and you will too if you read that blog, listen to the podcast and check out the presentation that she has done. In addition to those materials I also found this post by MOM – Not Otherwise SpecifiedA hair-dryer kid in a toaster-brained world. That’s the first in a series of posts and it’s amazing.

So, with all that information in my head, I sat down and wrote one for Monkey.

I’m not going to go into detail because

  1. Those two ladies have got it covered, and
  2. Your presentation is going to look different from what everyone else does.

It HAS to, because your kid is different, your kids’ classmates are different…there are a ton of variables that will make your presentation unique but if you read/watch/listen to those materials you will see why it has to be different and how to make it work. It sounds daunting, hopefully you will be surprised at how quickly it comes together once you make the decision and do your homework. Even if it doesn’t come easily though, do it, work at it, it is worth the effort. I spent maybe 3 hours total and part of that was rehearsing it with my husband. See…there were two of us presenting…that right there changed the dynamic and it changed the presentation.

One thing I will say is you don’t have to do ALL the things or cover ALL the topics. Do what feels right for you. We did not use a visual, except for my endless imitations of Monkey’s quirks, of course. We also had 3 points that really, really mattered to us.

  1. That fragile X is genetic, it’s not something you catch, and it makes some things harder for Monkey but he can’t help it.
  2. That they were all very much alike, way more alike than they are different.
  3. How they can help.

That was it for us. We used Holly’s ideas to convey those things but we kept coming back to those 3 points.

What I really want to say is that this works. You’ve been hearing it, I’m sure, from lots of people but I feel compelled to add my voice to the crowd.

Monkey’s teachers loved the presentation and that afternoon his special education teacher told us that that very afternoon they saw kids using the “How they can help” ideas. Immediately there was a change. Instead of ignoring one of Monkey’s off topic interjections, they were responding to him, acknowledging what he said and then ADDING how they felt about the topic to it.

There is no amount of therapy in the world that is going to teach Monkey social skills the way that right there will…and the kids? They just needed someone to tell them how to take the next step, they’d been willing all along.


3 thoughts on “Dialing it down a notch.

  • October 5, 2012 at 10:29 am

    I have heard that the Novartis prospect (and Seaside and Novartis are now collaborating on STX209) might be an even better drug…same pathway but the formula is different. And Seaside is getting really close to hitting their numbers but Novartis is really struggling to find FX families. Just FYI 🙂

  • October 5, 2012 at 11:51 am

    I piggy-backed on your Mama Bear, added my own 2 cents, and got NADA….no likes and no comments. Yeah, I guess people do describe me as “brutually honest”. lol


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