School

Fun, fun, fun!

Melissa

We have a home visit tonight for the 3 year IEP evaluation. The school psychologist, who chairs Monkey’s IEP team, will be coming over to administer the Vineland.  90 minutes of pure fun, I tell you!  Gah.

The whole home visit thing cheeses me off, actually.  First, the school psychologists do not do home visits for all of the kids in the district, just kids on IEPs.  I wonder what people would say if they started doing home visits for all the kids in the district based on other criteria, like socioeconomic status, for instance.  I’m thinking that wouldn’t fly. 

Second, the idea may be to have a chance to observe Monkey in an environment where he is most comfortable but his comfort level drops to ZERO when there is a stranger invading his space (and she is a stranger to him.) 

Third, and finally, duuuuude, I don’t like strangers invading my space either.  I want to go home, put on my ‘jamas (to stop Monkey’s inevitable freak out) and chill.  Instead, I get a stomachache all afternoon because of the anxiety over the whole deal.  Some of the anxiety is the social anxiety I deal with all the time but add to that my deep-seated need to excel in all tests…

I get freaking test anxiety and I’m not even the one being tested.  Pitiful.

We’re having doubts about the medication.

Melissa

When we first started Monkey on the R*italin we saw a really big improvement in his eye contact.  The teachers noticed the increased eye contact as well and also noticed that his speech was more on topic.  We were all very excited. 

We did notice that he was having a bit of a down period right before his 2nd dose and so, at our one month follow-up visit, we switched to the extended release formula.  We also increased the dosage.  We made the switch over April vacation and since then we, and the teachers, have noticed that the benefits we were seeing before have faded.  He’s making less eye contact and he’s more distractible.  On top of that, he’s been very emotional. 

Very emotional.  To the point that we have been staying home as much as humanly possible to avoid the whining and out-right meltdowns on outings.  He starts whining about going home the second we get in the truck and when we return he’s a mess.  When I get home in the evenings he loses his *mind* within 30 seconds of me walking through the door because I haven’t changed into my pajamas (yoga pants, fortunately.)  Even *if* I’m in the process of walking from the front door to the bedroom to change. 

I mentioned yesterday that he was a mess on Saturday while we were party shopping.  It wasn’t just the idea of a party that was upsetting him, it was the very fact that we were not home.  It has been rather unpleasant and getting worse, it seems. 

On Sunday, we skipped the medication.  We saw about the same eye contact as on Saturday, which was less than what we used to see.  We also saw a much happier little man.  We went to the nursery to get plants for the window boxes and the hanging planter, he did amazingly well.  He wasn’t whining.  In fact, I heard more than a few giggles.  When we got home Duhdee’s parents were there visiting with Great Grampy and Monkey did really, really well with them.  He played ball with them in the yard for quite a long time and he even gave hugs when they left.

We decided we were going to skip his medication today to see what the teacher’s report.  We didn’t tell them.  Duhdee will mention it after school to see if they noticed any differences.  I’m pretty sure they are going to tell us he had a good day.  He was having a much better morning than he has been.  He seemed less anxious.  If that holds true for the rest of the day we’re going to have to talk to the doctor about switching again.  *Sigh.*

Follow-up visit.

Melissa

This morning we had a follow-up visit with the developmental pediatrician who has prescribed Monkey’s medication. 

He looked at the weekly reports that the teacher has been filling out.  He was impressed with the depth of information that his teacher provides, she adds explanatory notes rather than just rating Monkey on a scale of 1 to 3.  He asked us what we’ve seen at home and it matches up with what the school has seen.  Monkey is making more sustained eye contact and his verbalizations are clearer, more on topic and he’s combining them in new and longer variations.

Monkey hasn’t exhibited any reactions to the medication.  He is, at times, more emotional at transitions but not terribly so.  He’s still sleeping well, except for this week because he has a cold and wakes up coughing at least twice a night, ugh.

We had him on a “tiny” dose, we’re going to double it and switch to the extended release formula.  We didn’t start with the extended release form because it’s a capsule rather than a pill and we needed to split the pills.  Next week is April vacation week so we’ll have lots of time to observe him for any changes in behavior or appetite. 

Though the changes we have seen are not earth shattering they are worth celebrating.  The increased eye contact has been particularly nice, I didn’t realize how little true eye contact he made with us until we saw the change.  It still startles us at times to find him looking at us so intently when we are talking or playing.  I’m excited to see what happens next!

The budget passed!

Melissa

The new integrated kindergarten classroom will be established in September of this year!  Nothing is official until we have that IEP in hand with the placement but since the room was sort of designed for him, lol, and he’s been on the list since the fall of 2008…we’re feeling really good about where he’ll be spending next year!  Woot!

We got the IEP and it’s good!

Melissa

I read through it carefully last night and there was not a single unexpected item in the entire document!  So very exciting! 

The bestest thing?  In every location where it was appropriate, it was marked that Monkey be in a regular education program with special education supports.  He’ll be pulled out of class no more than 20% of the time for ST, OT, AT and PT.  By making one of his OT sessions a push-in session instead of a pull-out he moved from the 40-79% tier to the 80% tier. 

This is important only because the district has poor record of including special needs students in the regular education classrooms.  There is a disproportionately high number of students placed in out of district settings and in substantially separate classrooms given the district’s size.  They are trying to make changes but not everyone is on the same page and as we move from IEP team to IEP team we’re going to need to be able to prove that he’s progressing in these settings. 

We’re going to get resistance from the administration and from teachers at times because we aren’t interested in taking the “easy” route.  I am sympathetic to the fact that teachers don’t always get the supports they need to be successful but we also know that there are ways to make this work.  I believe that our doing whatever we can to get the teachers the information and support they need is a vital part of our fight to keep Monkey in an inclusive setting.  I don’t think its fair of us to sit at the table and make demands of the district if we’re not willing to work just as hard as we are asking them to work to make this all happen.

I am so glad we’ve fought as hard as we have to keep him in an integrated setting, clearly he is making progress (and lots of it.)  He has a lot to learn from and to share with his peers.  I don’t want any of them to miss out on the opportunity by putting up any unnecessary barriers between them.

Does this pattern sound familiar?

Melissa

I finished charting all of the data that Monkey’s teacher tracks for us on our daily sheets (See HERE if you want a visual) and I’m seeing an interesting pattern.

His “regulation” and “participation” generally rise and fall together throughout the day, as you would expect.  When he’s not self-regulated he can’t fully participate in the learning activities, totally makes sense. 

What isn’t making sense to me is the bigger pattern.  When you look at the data between September 2009 through March 2010 you see 4 or 5 days where he’s on an upswing and then 4 of 5 days when he tanks.  It’s up and down, up and down…and it doesn’t line up with school breaks or anything that I can identify.

So, out of curiosity, do you see this with your children?  It’s remarkably consistent, there must be something behind it.

How long should it take?

Melissa

We had our IEP meeting last Thursday, we still don’t have a copy of the IEP to sign.  I asked Monkey’s teacher this morning and she said she gave the team a Wednesday deadline to enter changes.  A week?  I wonder what they’re changing, we didn’t have many comments to their draft.  I like these people, they’re a great group of providers and I’d love to keep them for another year…but this makes me suspicious, I hate that.

Potentially adding to my paranoia, I bought “Wrightslaw:  All About IEPs” and it arrived last night.  I like the way it’s set up, it’s very accessible.  After a quick browsing I’ve already picked up on a number of things our district does that they should not…maybe I shouldn’t read it after all, lol.

IEP update? Eh, ok.

Melissa

Yeah, so we had Monkey’s annual IEP update meeting yesterday and the most exciting part of the whole meeting was…Monkey lost his 4th tooth mid-meeting! 

The rest of the topics were pretty unexciting.  We talked about what sort of evaluations the school would be requesting for the 3 year re-eval and we were fine with all they suggested.  We were happy to learn that his current providers will be doing the evaluations.  It will make everything much easier on Monkey and I know they’ll get the best possible results out of him.  I did suggest that if they do cognitive testing that they use the K-ABC test which I’ve seen recommended for kids with FX in the past but the psychologist expressed a preference for using just the Vineland.  That is fine with us because parent and teacher report IS going to show his skill level much more accurately than any standardized testing will.

The team set goals for the rest of this year, everyone is excited about his progress.  We’re pushing forward on new goals with only one exception…alphabet and number recognition.  He is about 80% on identifying the letters at school (he’s probably 99% at home, just Q and Z sometimes give him a hard time) but the teacher wants this to be a solid 100% skill before moving on.  Works for me.  He is much less interested in numbers and he is basically guessing.  If the card has a two digit number on it he will start at 10 and work his way up until he gets it right, lol.  Definitely an area he needs to work on.

We had 4 things on the agenda we put together with our advocate and 3 of them were already addressed in the new goals.  1 was something the OT wanted to discuss with us.  She wanted to change one of her OT sessions to a push-in delivery.  Currently, he has 2 sessions a week and both are pull-outs.  We wanted to request that they try to do more push-in services for him to keep him with his peers as much as possible.  The OT was relieved, apparently a lot of parents prefer pull-out services and fight her on the issue.  Not these parents, I keep telling them that this is the sort of thing that will play to his strengths!

The only semi-annoying thing at the meeting was the discussion of how many IEPs we need to write in the next 3 months!  We did a re-write yesterday for his annual, we will do a re-write in June for his kindergarten placement beginning in September 2010 AND we need to do a re-write wrap-around IEP to bridge the annual IEP and the kindergarten one.  Gah.  So annoying.  No one understands why but the order is coming from the SPED director and she is SO not a person you want to p*ss off, as many in our district have learned.  Soooo, 3 IEPs in 3 months it is!