Nothing to do but bang my head.

The new IEP was dropped off, I haven’t reviewed it yet so I have no idea if we can sign it or not. 

As we were discussing what we need to take with us to the clinic tomorrow I mentioned that we should write up a progress report b/c it was given orally yesterday and I want something for Dr. G. to review.  Duhdee informed me that it is attached to the IEP!  I was happy to cross this off my list but Duhdee then informed me that the progress report that is attached to Monkey’s IEP?  It’s for another boy in his class.  OF COURSE IT IS.

Head, meet desk.  Wash, rinse, repeat.

So, about our IEP meeting yesterday…

I don’t even know where to begin.  I know I have a tendency to praise the district in general and criticise the teacher and I’m sure that doesn’t seem fair to some.  It may strike folks as a “shoot the messenger” issue.  I try, very hard, to give his teacher credit for how much she loves Monkey and how badly she wants him to succeed.  At times during yesterday’s meeting she teared up as she talked about what a special little guy he is and I think that does speak volumes.  I do not question whether her “heart is in the right place.”  It is.  100%, it is. 

I don’t know right now if I’m more angry, discouraged or depressed.  The meeting was just that good. 

As I mentioned below the meeting was a chance to evaluate his progress and set goals for next year.  We had agreed to 4 evaluations in advance so that we could, I thought, incorporate that new information into his IEP.  I think I said 3 previously, I forgot about 1 and boy was it a doozy.  So, let’s start with the evaluations.

1.  Classroom functioning – this is the report that had my blood boiling because the timeline was so far off.  She stated at the meeting, as soon as she started reading, that the timeline was off.  She recited from memory a timeline that was much closer to what we experienced and I was able to take a deep breath and relax.  She talked for nearly an hour and it was a 3 page report.  We were given a chance to ask questions and I did ask her what her conclusions were leading to, I wanted to know what she was thinking in terms of placement.  They collectively danced around the issue but did begin to voice concerns that he wasn’t able to learn in his current environment as it stands.

2.  Functional behavioral analysis – we had received a copy of this in advance.  We did not have any concerns about her observations but we did think she was drawing some faulty conclusions based on her observations because she’s not familiar with FXS.  We pointed out a couple of places in her report that were “classic Fragile X” behaviors and she acknowledged that she did not know them for what they were.  We told the team that we had sent the reports to Dr. G and asked her to review them specifically FX related issues that we may have missed.  They were receptive to that and we’ll share those findings with them later.

3.  Assistive technology – this has not yet been done, they’re going to work on it over the summer and we’ll have the results in September.

4.  School psychologist – this is the one we had forgotten about.  We had signed off on it and no one ever mentioned it again.  When we insisted on getting copies of the evaluations 48 hours before the meeting or rescheduling only the 3 above were delivered or explained.  This one was handed to us when we sat down at the beginning of the meeting.  She tried to dive right in but Duhdee and I insisted on taking our time to read the report thouroughly before we proceeded.  She wasn’t happy.  Neither were we by the time we finished.  Duhdee mouthed “Bullshit” to me after he finished.  Yes it was.  Her final suggestion speaks volumes, she suggested we needed to call DMR (Department of Mental Retardation) for respite services as he ages.  She doesn’t see any hope of independence for him.  He’s 4 and she has observed him 3 times in a classroom.  If that’s not bullshit I don’t know what is.

The best part of the meeting was after we had finished the evaluations and proceeded to the progress reports.  His ST listed all the progress he has made and said she wanted to adjust his goals b/c they are ASL heavy and he’s using much more vocalization now and she wants to add whatever assistive technology that we ultimately decide upon.  The school psychologist stopped her and said we cannot change his goals, this was not an annual review.  She said this should have been done at the annual review.  At which time 6 of the 8 people at the table responded, this IS the annual review.  Apparently the teacher had set up the wrong TYPE of meeting.  Argh!

This began an hour of back and forth about what is and isn’t allowed and what type of meeting this was or should be or could be.  Total “clusterf*ck” to quote my eloquent husband.  Duhdee and I sat there just stunned at the incompetence and bickering.  Finally it was decided that this SHOULD be the annual review (hello, we’re already a month beyond that due date) and that goals should be updated.  The new goals will be delivered to us today by his teacher and we will sign off on them by tomorrow IF that’s all that changes.  I made it very clear that I will not consider any changes to services or placement on this IEP.  We also added the summer preschool to the IEP, it was already in his IEP that he needed summer services due to risk of regression but we had home services last year, not classroom services so that had to be added.

They were clearly pushing us in the direction of a substantially separate classroom or a split between a substantially separate classroom and the inclusive class.  You probably won’t be shocked to hear that I told them I was not comfortable with either of those suggestions. 

When we left I told Duhdee that we’ll homeschool first and he was in total agreement.  We are also in total agreement that we are re-hiring our advocate.  We thought we could do this alone, we’re wrong.  We don’t really have money to throw around (who does?) but this is a priority and we’ll make it happen.  She runs a tight ship and would never have allowed the meeting to be run in such a manner.

So, round 1 is done, we just have to sign the revised IEP today.  Round 2 is set for September and we’re lining up all our ducks and bringing in the hired gun.  Knowing that we have the homeschooling option and that my husband is on board (essential since he’s the primary caregiver here) will perhaps make the next meeting less stressful.  I doubt it though.

It’s the last day of school.

I’m ready to be done with school for a while but no such luck.  Tomorrow is our IEP meeting to discuss goals for next year and how to implement them.  I wish I could say I was excited but you all know that excitement isn’t an emotion that accompanies these sorts of appointments. 

Last night I sat down with his IEP and took notes.  I looked at each goal that we set for this year that has now just ended and noted to the left either “Yes” or “No.”  He met 25% of them.  How is that for a kick in the pants?  We knew we had been ambitious when we set the goals but I wasn’t expecting such an outcome.  If you were to look back here you would see that we proclaimed him to have met almost ALL his goals at that point.  What is the explanation for this drastic re-evaluation?

I plead wishful thinking and willful ignorance.  At that meeting the teacher and his therapists lead the discussion and proclaimed him to have nearly met every goal and I drank the Kool Aid they were offering.  Who doesn’t want to walk out of a parent/teacher conference with a glowing report?  I have to give myself a little credit because I did recognize that the reports in the meeting were not the reports we had been expecting given the evaluation his teacher had prepared for the FX clinic.

Last night when I was reviewing the goals and came to this much lower number I admit I was in a very different place emotionally.  Before reading his IEP I had read his teacher’s report on his classroom functioning.  The first paragraph set the tone for the rest of my evening.  I’m so angry with this woman, how can she be so out of touch with reality?

You see, the first paragraph laid out her version of Monkey’s “transition issues.”  She proclaimed that he initially had trouble with a variety of transition issues in September and October but that, due to their implementation of a “variety” of techniques he was essentially cured in November.  He’s been making fantastic progress ever since.

The woman is delusional.  I looked back at my blog entries (you can too if you search for the “school” category) and she is so far off that I think maybe she forgot which kid she was writing the report on.  Monkey HAD no transition issues in September or October.  I noted on Oct. 31 (the day she scared the heck out of him by dressing up for Halloween) that he was less excited about school due to being more challenged but still doing well.  Of course, it all went to hell from that point on and we didn’t get the kid to walk into his classroom again for another SEVEN DAMN MONTHS. 

All those months that Duhdee and I were prying this screaming, crying, tantruming child off our arms, legs, waists only to get out of the classroom and break down into tears ourselves….didn’t happen as far as she is concerned.  None of it.  None of the stress and anger and helplessness happened.  The world has been peachy keen since November even though we were in TEARS in the office of a private psychologist in February because we had reached the end of our ropes.  We were done.  We were considering pulling him OUT OF SCHOOL. 

I don’t think this meeting tomorrow is going to go very well at all.

Happy Father’s Day!

For all the dad’s out there that work hard, kiss skinned knees, spin their kids’ wildly through the air making them shreek with joy and excitement, read bedtime stories, demonstrate pitching techniques and drink tea with their pinkies extended to the delight of their little girls…today is your day.  Enjoy it and know that there are a lot of people out there, besides your kids, who don’t take what you do for granted.

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Summer session or no summer session.

Duhdee and I have been talking the last few weeks about whether we want Monkey to go to summer session this year or not.  We were offered the 6 week summer session last year as well but declined because he was transitioning from EI to school as it was and we really didn’t want to have 5 transitions in the first 3 months*.    What we settled on last summer with the school district was that Duhdee would take him in for ST, OT and PT services but that he’d be home most of the time (it basically mimiced our EI set up.)  It worked OK for us.

We knew that this would not be an option for us this year.  This year our choices were 6 week summer session in a classroom with a different teacher, at a different school, with different kids, with different service providers or … nothing.  Given how hard transitions are for him, how difficult our experience has been this year with getting him into a classroom each morning and the fact that our normal family vacation falls in the middle of the summer session, “Nothing” was pretty darned appealing! 

We gained some additional information on Wednesday though.  We’ve learned that we can simply sign up for 3 weeks of the summer session (so he will start after vacation, not 2 days before we leave, have a long break and then start up again.)  We’ve learned that the summer program will be at a school he has been to before (for services last year.)  We’ve learned that 2 of his current classmates will be enrolled.  And, the biggest new piece of information we’ve learned is that, his VERY favorite teaching assistant will be leading the class!  How cool is that?

I think we’ve done a complete 180 on this subject now, lol, which is very notable given how stubborn I am and how much I dislike changing my mind 🙂

*The 5 transitions offered by the school last year were 1) Into a “transition” classroom (non-inclusion class with a few hours spent with an inclusion class each week), 2) Summer break part 1, 3) Summer session, 4) Summer break part 2, 5) Inclusion classroom for the school year.  Any wonder we turned it down?

No one was more shocked than we.

Yesterday, we dropped Monkey off at pre-school as we do every morning.  I walked a few steps ahead of Monkey and Duhdee, who were holding hands, doling out M&Ms to induce Monkey to keep moving forward.  It’s a great system that works very well for us. 

Normally, Monkey eats the M’s as fast as I hand them to him.  We usually go through 4 or 5 M’s.  Recently Monkey has started hoarding his M’s.  He will hold the one I have just given him and reach for the next.  If I hesitate and we tell him to eat the one he’s holding he will put it in his mouth only to take it out again as soon as I hand him the next one.  This makes quite a mess, as you can imagine, so this morning I did not insist that he eat each M.  I would hand him a new one even though the last one was still in his hand.  By the time we reached the door to the classroom he had 3 M’s clutched in his hand.

I always hand him the last M after he steps through the classroom door.  This morning I held my hand out with the last M and he reached out with his fistful of M’s to grab the final one but, this time, he did something shocking.  He dropped all of the M’s into my outstretched palm and ran over to the table to join his friends, ST and teachers at their activity*.

Duhdee and I stood by his cubby staring in shock.  We were stunned.  He never runs to join a group activity as soon as he walks in the door.  He never gives up his M’s, usually he’s trying to grab any extras that I might have in addition to the ones he’s been given already.  He never stands across the room and happily waves good-bye to us as we walk out the door.

It figures that Monday is his final day of school for the year.  But gosh it was a nice way to start the day. 

*Don’t worry, the M’s didn’t go to waste.  I am happy to share that celebratory M’s are the very best tasting M’s ever.

Discovering ASL.

Between starting EI and receiving the FX diagnosis we purchased two Baby Signing Time DVDs but we didn’t use them. Duhdee and I had decided early on that we wouldn’t let Monkey watch TV until he was 2, at least. We received the diagnosis a few weeks before his 2nd birthday and we finally decided we really needed to try the DVDs. Clearly he wasn’t just going to start chattering away one day as everyone had been saying and he needed a few more signs than “more” to communicate effectively!

We started playing the DVDs for him, he was interested in them for a few minutes but that was about it. We kept trying, at least we were learning signs even if he wasn’t. That summer we took our normal 10 day vacation with my family in the mountains of Maine. I was a bit reluctant to go up that summer because they were building a new house which meant the lot was not child friendly (dusty/dirty/construction zone) and everyone was going to be busy. It turned out to be the BEST thing for us.

We took the DVDs with us and we played them A LOT because we had no other form of entertainment. In addition to that we introduced Monkey to the quad that week. He LOVED riding in our laps as we drove oh so slowly up and down the driveway and through the shallow brook. We started using the quad as a reward, he learned to sign “go” on the quad. By the time we came home he was sporadically using about 10 new signs!

That vacation truly was a turning point for both Monkey and for me, he finally realized these signs WORKED to get him what he wanted and I finally realized that he could totally rock ASL if we were persistent.

How on earth does he know IGLOO?

Last night, after we got back from our nightly walk with the dogs, Monkey asked for some “bubbles” (soda, in this case, Jones Root Beer.) Normally this would be denied but I thought, hmmm, I bet if I get him some bubbles he’ll stay sitting at the table. I thought maybe I could take advantage of it somehow but wasn’t sure exactly what I’d do. Duhdee looked at me like I’d lost my mind. Come to think of it, maybe I should have explained why I said yes!

Anyway, Monkey sat down at the table and I grabbed the nearest thing at hand. A set of wooden alphabet blocks/flashcards we bought at a yard sale two weeks ago. They look sort of like this:
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The pictures are slightly different but the concept is the same.

So I showed him 5 at a time, A is for apple, B is for ball, etc. Then I separated the picture from the letter and asked him to hand me the apple, ball, etc. We made it through about 1/2 the alphabet before he finished his little cup of root beer and headed towards bed.

I knew he’d nail the everyday objects but how the heck did he know what an igloo looks like?? I’ll have to ask his ST if she has igloo included in his PECs, lol. Somehow I doubt it.

***Update*** It was not, as I suspected, included in his PECs but the teaching assistant was able to explain it to us anyway.  One of his classmates brings his lunch to class in a cooler/lunchbox.  An Igloo brand lunchbox, of course.

Educational DVDs?

Are there any DVDs that your kids have loved?  I’m looking for engaging DVDs that cover pre-school concepts like colors, shapes, numbers, letters, etc.  Monkey has learned so many signs from the Signing Time DVDs, we’re hoping to capitalize on this mode of learning to fill in gaps and firm up what he already knows in some cases.

What other techniques do you find work well?  We’re trying to come up with a list of learning activities for Duhdee and Monkey for this summer break.  Monkey is NOT a fan of board games, puzzles or flash cards *sigh* what creative ways have you found that you’ll share?