I know you are all DYING for an IEP update.

Heh.  I’m so sick of this.  I cried at Duhdee the other day “And he’s only FOUR!” I cannot believe we have…uhhh…too many more years of this ahead of us.

Anyway, I spoke to our advocate and she advised me to call (and e-mail) his team chair.  I don’t know why I didn’t think of this before!  She was not present at the last meeting and I think that’s the fastest way to cut through the BS.  So, I called her and told her that the meeting got off track, that we had agreed to update his goals and add a summer program to his IEP, then reconvene in Sept. to discuss the rest.  I also told her we still haven’t seen an IEP that meets these two (and only these two) requirements.  I told her that I don’t want to sign it until we go back to his February IEP with ONLY these two changes.  I also told her that I don’t want to reject in part, which is our other option if they can’t give us what we had agreed to sign, because we don’t want the Department of Education getting involved (which they would automatically have to do if we reject.)  So, that’s where we are at.

If his team leader can get us the report we want quickly enough we’ll sign it.  If she can’t, I have a list of issues so I can reject it in part and we’ll have to let the DOE get involved which I don’t think any of us want at this point.  There’s no reason we can’t handle this ourselves without mediation.  Either way, we’ll be signing something and returning it to them so that he can go to the summer program.  It’s up to them to decide which route we take.

Our advocate also is now up to speed on what went wrong last week, what we have coming in for reports/information from the Fragile X clinic and I think she understands how far apart we are right now on placement.  I’m glad we have the summer to plan for this, I need a little time to recover from the stress of last week!

***CUE THE ANGELS**** We have an IEP we can sign!  WOOT!  WOOT!

The Fragile X Clinic (Day 2 of 2)

On Friday we were back at Children’s Hospital for the genetics portion of the yearly evaluation.  There was quite a crowd this year.  Besides Monkey and ourselves there were 4 other people in the room for this part.  This visit gives them a chance to observe Monkey and ask questions about seizures (none), eye problems (none), heart problems (none), etc.  It also gives us a chance to voice any concerns and get some great advice/input.

We discussed the toileting challenges we’re facing.  Dr. Picker suggested keeping a food diary to see if we can pinpoint foods that might be related to his excessively soft stools.  We haven’t set this up yet but we’ll get there 🙂

We discussed our concerns with Monkey’s ability to focus and sit still for learning, this seems to be a constant source of comment from his teachers and therapists.  Duhdee and I are well aware of his high activity level.  The child does not stop moving.  We take a tag team approach to get through the day.  On a good day we’ll take 30+ minute shifts, sometimes a few hours…but on bad days…we will drag though 10 minutes of chasing him before we cry uncle.  It is tough.

Since ADHD is common in boys with FXS they are going to take a closer look at his Connors scores.  I did one on Thursday and we’re going to have his summer teacher rate him as well.  If they look “off” we’ll have to consider medicating him.  They really don’t want to do it at this age, it’s hard to even diagnose ADHD at this age, but if it’s holding him back we’ll do it.  Personally, I’d like the school to implement a sensory diet and a behavior plan before we jump to medication.  I am not convinced they’re committed enough which is unfortunate.

We also discussed Monkey’s PDD diagnosis.  It was first given to him a few months after he was diagnosed with FXS by doctors who were not familiar with FXS.  At that time they said that it COULD be the FX and that he’d lose the label at some point but that it would make us eligible for extra services so we didn’t argue.  Dr. Picker doesn’t see autism when he looks at Monkey.  He said he’d be surprised if he kept the label but he also said that if the evaluator is not familiar with FXS that he very well could get a straight autism diagnosis and lose the PDD.

Duhdee and I feel that the school looks to that PDD too heavily.  They’re not focusing on the whole child, they’re focusing on the PDD aspect.  We’ve put off having the additional screening because we were worried about the evaluator confusing FX symptoms with ASD symptoms.  Dr. Picker knows of a psychologist, however, who is very good at recognizing the differences between FX and ASD.  He said that even though he does not see it, if she sees it and gives him that label then he’ll be confident that it’s proper.  That’s all we can ask.  He’s going to see if she thinks we should do the evaluation now of if we should see how the school situation plays out.

We also discussed the benefits of extra OT.  The OT did say that it would benefit Monkey to get extra OT but our insurance company is notoriously difficult to work with on this.  I am going to see if we can get the OT covered on my own first but they did indicate that they would write a letter of medical necessity if we have any trouble.  Of course, even that does not give any guaruntees.

Dr. Picker commented on how very well Monkey is doing overall, he said he’s seeing great maturity from him and physically he’s doing great.  He’s going to work with our pediatrician on a couple of things (folic acid and ultimately ADHD meds if necessary) but he thinks we’re doing as well.

Oh, and, I was brave and asked for help for me too 🙂  I asked for a referral to a psychiatrist who has at least a basic understanding of FXS carrier issues.  I should be seeing that soon.  Also they’re starting a support group for FXS carrier moms through the clinic and I’ve asked to be included in that as well. 

This was a great way to end a very stressful week!

The Fragile X Clinic (Day 1 of 2)

On Thursday and Friday we went back to the FX Clinic for Monkey’s yearly evaluations.  Thursday was the long day, he had a psych evaluation and his OT evaluation, the two were scheduled to last for a total of 5 hours combined with a break for lunch in between.

The fabulous Dr. G conducted the psych evaluation again this year.  Monkey hadn’t seen her since March when it was decided that we had the tools we needed to continue with her behavioral plan.  We did update her in May when the plan finally reached it’s primary goal of Monkey walking into his classroom under his own power.  The room she uses is really, really small.  Monkey normally doesn’t mind it but he was struggling on Thursday for some reason.  I left the room to fill out REAMS of paper evaluations while Duhdee stayed with Dr. G and Monkey.  After she had finished I went back to the room and we discussed current issues and concerns.

We gave her copies of the various reports and IEPs that the school has provided recently.  She had some concerns with the goals that were proposed (and those on his last IEP) because they were too vague.  She wants numbers and measureable goals, not language like “will improve self-regulation.”  She also wants to see academic readiness skills on there, colors, numbers, shapes, recognizing the letters of his name, etc.  She feels like this year was a bit of a waste for him.  He DID make progress, of course, but she feels that if he had been given the proper behavioral supports that he could have done so much better.  She doesn’t want to see that happen again. SO, her report is going to include a lot of very specific goals and behavior related suggestions.

Our meeting with Dr. G ran over so we had to ask the OT to delay the evaluation until we could eat lunch.  Only in Boston is it going to cost you almost $30 for 3 sandwiches, 2 drinks and fruit.  Oh my.  Monkey did eat the tuna salad though which is nice, he’s never been a fan of sandwiches (besides PB&J) so we weren’t sure what to expect.

After lunch I had to go back to work.  The evaluations and the IEP happened at the very worst time possible from my perspective.  I am basically doing the job of two people last week and this coming week.  Ugh.  Duhdee took Monkey to his OT evaluation and he did GREAT.  It was the same OT as last year and she could not believe it was the same kid.  Duhdee left the two of them alone for the evaluation and sat in the waiting room and it seemed to work wonders for Monkey.  One of the goals on last year’s IEP was to build a tower of 6 blocks, the OT left it on the IEP for this summer/fall because he hasn’t met it yet.  He did during the evaluation so I guess we can update that one now.  He has made 5 months of progress in the last 12 months which is a bit discouraging but he is showing so much more maturity.  There are a couple of skills that are holding his score down that were not put on his IEP previously so she is going to recommend those goals for next year.

So that was day 1.  He had a rough AM session but bounced back for the PM session.  We are going to get some great, specific goals from both evaluators in their written reports which we’ll provide to the school.  We should be in good shape for our next meeting.

Day 2 up next but we have a family barbeque today in New Hampshire so I need to get motoring 🙂

SO much to share.

We received a revised version of the IEP after the teacher received my note.  I don’t have time to read it today.  I’m swamped at work and I’ve missed way too many hours over the last two days for the clinic so I’m drowning.  I’ve forwarded all versions of the IEP to our advocate and we’re going to talk on Monday about what we should do with our multiple drafts.

Fragile X clinic visits btw, very cool.  I can’t wait to share, how’s that for a teaser?

 🙂

We did not sign it.

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*

For today’s FX Memory we’re going wayyyyy back to…

June 17 and 18, 2008.  Ha.  Read the posts, these are just about the worst days we’ve had since the diagnosis.  Our stress level is at the very highest.  We’re worried, angry and feeling isolated.  But there was an awesome moment in there, that’s what I’m going to share here.

We’ve been working very hard to potty train Monkey for the last few weeks.  He’s not a big fan.  As often as not, he will tell us “No” and/or sign “all done” when we mention trying to use the potty.  It’s not a lot of fun for any of us.  It’s not awful, just not great either.  Our results are pretty dismal, we get him to successfully pee in the potty 1 or 2 times a day at most.  He’s still not telling us when he has to pee, he’s not telling us when his diaper is dirty (pee or BM), his BMs are still loose (despite Benefiber)…ugh.  There’s just not much encouraging us but we keep plugging along.

Yesterday morning Monkey came to my side of the bed and touched me to wake me up.  As soon as I opened my eyes he pointed at his bum and said “Yuck” and then pointed at the front of his diaper and said “Yuck” again.  Sure enough, he had pee’d and had a BM!  WOO HOO!  That’s the very first time he’s shown that awareness and/or communicated it to us.   The best part?  It was 7:30 and I’d overslept so Duhdee had to change the diaper while I showered for work.  Really, it can’t get any better than that 😉

I could just cry.

Ok, fine, I AM crying.  Can anyone please explain to me why every thing has to be so complicated?  We agreed to update Monkey’s IEP.  We agreed to update his goals/benchmarks and add the summer preschool classroom.  We specifically said at the meeting that we would not sign an IEP that changed anything other than these areas.  Two different people confirmed that that was exactly correct, one of whom was his teacher.

So, why, do you suppose, am I reading an IEP with new accommodations, omitted accommodations, altered language in the methodology and a re-written parent statement in ADDITION to the things we agreed to change?   Did they think we wouldn’t read it?

I’ve got to be wearing some sort of “Kick Me” sign, right?  His teacher is going to show up tomorrow between 7:30 and 8 AM expecting to pick up a signed IEP.  I’m trying to decide what to leave her.  None of my ideas include a signed IEP, some might be illegal…

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.