School

We also did not reject it.  I left a note for the teacher which pointed out that we had agreed to sign the new IEP on very specific conditions and that they had dramatically exceeded those conditions.  We also let them know we will have a response after we discuss the situation with our advocate.

As for our advocate, talk about a sign!  When we got home from the IEP meeting from hell there was an invoice from her in my inbox.  It was sent in error since we had paid in full last spring and haven’t needed her assistance since then.  It struck me as being very odd, though, that the first day we need her we get an automated note from her accounting program.  Do you suppose Quicken has ESP? lol.

**Edited to add** The teacher left a voice-mail apologizing for the IEP (what??) and asking to meet with us and the school psychologist tomorrow at 10 AM or on the 25th.   No.  Tomorrow is day 2 of the Fragile X clinic which they KNOW about and the 25th I have large closing.   I really need to be concentrating on work here and it’s become impossible. *sigh*

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.

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.

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.

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?

For some time now I’ve been tossing around the idea that we should homeschool Monkey.  I feel very strongly that he learns best from us.  He has learned great things in pre-school from watching other kids but he also experiences a lot of anxiety at school. 

We had horrendous transitions to school from late October until February and he was really struggling in the classroom.  Despite the fact that we had written into his IEP the need for him to have a sensory diet, one was never put into place.  They’ve simply relied on giving him access to his blankie (for comfort) and a chewy tube whenever they think of it and the teacher has periodically argued to remove even those supports because they make him “look different.”  She’s been very adament that she wants him to look “normal” which is all well and good but not at the expense of his ability to cope in the classroom.

So, it’s been in the back of my mind that this would be a good thing for Monkey but I had never heard of anyone homeschooling kids with special needs before and I was, honestly, scared to even try it.  Last week a message came across the fragile x mailing list that I subscribe to from a mom who does just that.  Eventually someone mentioned that there is a yahoo group on this topic.  It’s been around a while and is a bit quiet but I hope that the renewed interest in it will change that.

I encourage anyone who is homeschooling or wants to homeschool to join, the more voices the better.  I actually think anyone could benefit from joining, I’m sure there are lots of things these folks do that we could use even if we continue with public school and supplement at home.

HS_FXS:  Homeschooling Fragile X Kids