Way too much pressure!

One of the academic areas that Caleb is included is “Writing Workshop.” This is when the kids all spend time…writing. Caleb doesn’t write. His fine motor skills are terrible so the only thing he can write semi-legibly is his name1 and he’s still working on learning words…stringing sentences together isn’t really happening yet. With those considerations in mind, this would seem like a terrible time to have him in the room working.

This is where having a great teacher comes in. For the last year we have been emailing pictures from Caleb’s weekend to his teacher with a quick note. The idea was that they could then ask him about his weekend and/or help him tell the other kids about his weekend. For me it was all about social skills and weaving him into the fabric of the classroom. Caleb’s new teacher, however, saw much more potential here. She is now printing the pictures out as a full page each and binding them together with blank paper. Caleb is sitting in writing workshop writing stories about things he has done! It’s an absolutely brilliant idea and a perfect example of why we love her.

There is one slight problem though…he’s out of pictures for stories! I haven’t been able to keep up with them! I need to figure out what I can send along tomorrow night so he can continue on Monday. I’m at a loss. I’m pretty sure I can’t win here…if I scramble and come up with something, Hurricane Sandy will result in a school closure and if I fail, the Hurricane will completely miss us and he will be story-less for Monday.

I really thought I was beyond having to stress out over a homework assignment! Apparently not, it’s just one more perk of parenting my little Monkey!

  1. and we’ve been working on that for ages []

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.


Those freaking IEPs.

I think one of the most stressful parts of having a child with fragile X is the whole IEP process. Obviously, we invest a lot of emotion in this process because these are our babies, our prides and joy and we want nothing but the best for them. Then we are thrown into this mysterious and bureaucratic process where we are being asked to trust total strangers to determine the educational fate of our children. We are turning over our kids to this *machine* for 18 years in many cases. It is asking way too much of a parent in my opinion but it is what it is.

There are ways to make this process less mysterious and I firmly believe that gaining a sense of understanding of the process, if not control over it exactly, can go a long way in making a family’s life better.

Since I’m a fan of lists, I’m going to list off the things I think you should do RIGHT NOW if you haven’t already. OK?

  1. Buy this book: Wrightslaw: From Emotions to Advocacy.
  2. Read it. Put AWAY the highlighter and resist the urge to fold down pages or take notes. Just read it. It may trigger lots of emotions. I found myself getting absolutely furious with the school district over all the NEW ways I was now aware of how they had screwed with us.
  3. If you find yourself getting absolutely furious, get over it.
  4. If you can’t get over it, consider hiring an education advocate. You need someone who is going to reign in the emotions from here on out.
  5. Read it again. I’m serious here, you need repetition to learn…everyone does! I know you’re thinking that you don’t have time to read this even once, never mind twice, but you need to make time for it. It’s important. This time highlight/fold pages/take notes to your heart’s content.
  6. Review point #3.
  7. Develop a vision for your child. I blogged about this for the National Fragile X Foundation. Create a vision statement for your child’s life…think long and short term. You can see our vision statement on the Foundation’s blog: A Vision.
  8. Develop a Positive Student Profile for your child that fits your vision statement. There are a number of samples on that same blog on the Foundation’s website, Caleb’s is here: PSP-1.
  9. Save this file: Learning Styles (this has a page for boys and one for girls.) At least two days before your next IEP, meeting forward it to the entire team and tell them you would like the “Accommodations” to take your child’s learning style into account. We have encouraged them to copy and paste the language right into the document!
  10. Arguably, this point isn’t directly IEP related but I am guessing that at least ONE of your child’s goals involves social skills. Am I right? Yes? Good. So I want you to go to the Foundations’ blog again and read this: Finding Hope in My Children, by Holly Roos.
  11. Look at the slides.
  12. Listen to the podcast.
  13. Ask your child’s teacher on day 1 (or tomorrow if you’ve already started school) if you can give this talk to his or her friends. No one else can do this for your child, no one else knows your child the way you do and, at least in my district, staff are not allowed to give any specifics because of privacy rules so they cannot answer many of the questions that students may have. You have to do this. Next Tuesday, I’ll be making the request of Monkey’s new teacher and I want to puke…so I know how terrifying it is. But really, if you want the best for your kid…and I know you do…you have to do this.


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!


IEPs and the fear of the unknown.

It seems to be human nature to fear what we don’t know…I know it’s certainly true for me!  I’ve said before1 that the hardest part of fragile X is the not knowing. No one can tell you what comes next, no one can tell you that you will live happily ever after and I really, really, really needed to hear that. Not that I would have believed it for a second but it would have been nice to hear at least once.

When Monkey was 2 1/2 we had to start talking about moving from the warm and fuzzy world of early intervention into the dog eat dog world of public schools…and I was terrified. I was so scared of these “IEPs” and these heartless school administrators who were going to snatch my beautiful child from my arms and stuff him into a classroom the size of a closet with no friends. Oy vey! Melodramatic much??

But the thing of it was, I simply did not know what the process was. I didn’t understand the law, it all felt fuzzy and out of reach and I’m a freaking paralegal, I can and do read statutes! Frequently. But this was my child, my heart, the stakes felt so much higher and that terrified me. When I get scared, I get angry. So, clearly, I was going to be a joy to deal with.

Early on I realized that I felt better, more in control, when we had a professional helping us. We hired an amazing advocate, who happened to be a mother of a child with special needs, and we muddled along. You won’t have to read too far back to know that the process still wasn’t easy but there were never any screaming matches and I never once punch anyone in the head2. I call that a win not losing.

Then something terrible happened. My advocate…had a baby. OMG.

Once again we were right back in that terrifying position of not knowing. This time, at least, we knew the process because we had been paying attention to our advocate. The real problem was that we still didn’t know the law. We knew that when we met with the district they would tell us…stuff…and we wouldn’t like this “stuff” but we didn’t know what to do about that. We didn’t know what to say to convince them that they were wrong about the “stuff” and that they should do what we wanted. See? Totally lost.

We finished Monkey’s last annual IEP solo and, though we stood our ground, we were still unable to convince the district that their “stuff” was actually “shit” and that they had no legal basis for pulling this shit on us. We got more of what we wanted than they wanted to give, just enough to leave us all unhappy, I think.

Now, obviously, C’s placement is awesome. We love his school, his principal, his teachers, his aids, his friends…everything. Love them. They rock. BUT, the fact remains…they…the district…the people on his previous “team” had no legal right to put him there, they had no legal right to take away things we had fought so hard, for years, to get for him. This still rankles. It still makes me think, I failed him. I failed to learn what I needed to learn in order to be a better advocate for him.

Last week, I took the first step in fixing that. I attended a Wrightslaw bootcamp and learned…not a lot…just what I needed to know to find what I need, when I need it, and keep this from happening ever again. I still have a ways to go, I need to read, read, read but I at least know where to start now.

I have a couple suggestions to share for any of you who are also blessed to have an IEP team…

  1. Bookmark this website: www.wrightslaw.com
  2. Look at the top left corner of the site and subscribe to their newsletter
  3. Attend one of their conferences, if this isn’t possible…
  4. Buy these books:
    1. Special Education Law
    2. From Emotion to Advocacy
    3. All About IEPs

If you are going to one of their conferences, don’t buy the books…they run the ENTIRE conference out of the book. There are no slides, no notes. EVERYTHING you need is in those books.

It’s rather nice to be regaining a little feeling of control over all of this…

  1. and most likely several times []
  2. though there were times when I really, really, really wanted to punch somebody in the fucking head. []

Pinch me.

It’s hard to believe but, this morning, Eric and I attended an IEP meeting with Monkey’s teachers and his specialists and we left the meeting laughing. We have meetings scheduled every 4-6 weeks per his IEP and we love being able to touch base so frequently. We have daily contact with his main teacher both in person and by e-mail but less so with everyone else so it’s really nice to sit and hear what everyone is working on with him, what’s going well and what else they’d like to try. It’s nice to feel like we’re a part of the team…they take notes when we make suggestions. Whoa.

Today’s meeting was just so amazing…someone actually knocked on the window of the office and playfully shushed us because we were all laughing so loudly. Craziness. His teachers and specialists genuinely love Monkey1 and appreciate his zaniness. They don’t see his personality as disruptive; they see the potential for using his sense of humor to bring out other skills. That’s huge!

First, part of why we were laughing is the obvious enthusiasm of his teachers. They get very, very excited when they’re sharing about Monkey. “Just look at this graph!” and his primary teacher will hold up something like this (this is totally made up but the graph looked a lot like this):

How can you not love someone who loves graphs? If you are a geek, like us, you simply can’t not love her.

Another part of why we were laughing is that Monkey is doing so amazingly well! One of the charts that his teacher showed us had data points that didn’t even fit on the graph! He is literally off the charts in areas. That makes our hearts positively sing.

Finally, we were laughing because Monkey has a terrific sense of humor and the stories they tell of him doing day to day tasks had everyone cracking up. His terrific sense of humor and all around lovely personality has created a bit of a problem though.

It seems that independent reading, just prior to Morning Meeting, is becoming a bit disruptive. Apparently everyone wants to read with Monkey and so he ends up surrounded by friends each trying to get him interested in their book. You can imagine how this might not go very well but…it’s not actually Monkey that is the problem! His teacher reported that he handles it really well, better than she would in his place even, but the other kids get loud and a bit pushy, lol. They are now assigning a reading buddy for him so everyone gets a turn reading with him. Nice problem to have, eh?

There was one last thing that made us laugh that has nothing to do with Monkey but the other students. They are all so interested in him that they follow his every move and recently his inclusion teacher found a piece of paper in the room. It was scrap paper they had been using and on the back was a random/general data tracking chart. The kids had been taking data!

Man…we have just hit the jackpot here. Awesome teachers, awesome specialists and awesome friends. Sometimes I think, “Pinch me, this can’t be real.” But then again, if it’s not, I like my dream world so just keep your fingers off!

  1. *shocker* []

At loose ends.

I don’t know how else to describe myself these days but to say that I am at loose ends. I’m not very good at grieving, I guess. I expected the tears. I expected to keep being brought up short when my Bubba wasn’t where I expected him to be. I expected the emptiness. I expected to be constantly tired. I expected to be revisited by my old friend insomnia. I didn’t expect this restlessness. This feeling that something is missing that stays at a low level in the background of my consciousness all day, everyday…even when I’m otherwise occupied, even when I’m happy.

Sometimes I look at Barley (aka, the other dog) and I get the feeling that he’s there with me, just as lost, and I feel awful that I don’t know what to do for him. I guess there is nothing to be done. This isn’t something fixable. I had hoped that having Copper back home would help but Eric picked up his ashes over the weekend and this is still there. I know time will help but, despite feeling like time is moving way too fast in every other way, it seems at be running at a snail’s pace in this regard.

On a happier note, Monkey is feeling mostly better and he returned to school yesterday! We were all very happy and when we got to school he had more cards from friends. They made me smile, there are a LOT of hearts and a LOT of love in these…click on each image to enlarge.

Sicky boy

Since Wednesday of last week, Monkey has been feeling punky1. He has a nasty, dry cough that once it starts…normally ends in puke. Hey! Have you ever seen a kid cough and puke at the same time??? Oh, man is that FUN! You need a fire hose for clean up. Ugh. Mixed in here and there with the puking were some fevers, just to add some flavor to the mix.

Kids must be fever and vomit free for 24 hours before they can go to school…Monkey has qualified only 1 of the last 6 school days. We have our fingers crossed for tomorrow, he hasn’t thrown up since Wednesday night…now if he can just string a few hours of sleep together we will be golden.

Earlier today we received an e-mail from his teacher asking if she could stop by on her way home to drop off our binder2 and a few cards from his friends. Eric and I immediately swooned, I mean, can she be any cooler? Then this evening when I got home I read the cards and swooned again. His classmates are just too darned sweet! The cards are a mix from his substantially separate classroom and his inclusion classroom.

I’ve got to share them they’re so adorable…click on the photos to enlarge them.

He is loved, he is missed, he is the class clown…he is valued. Have I already mentioned how awesome this school is? Because it is…very.

  1. HAHA! []
  2. All our data! Tracking! CHARTS! That show Monkey is progressing very nicely *phew* []