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 before ((and most likely several times)) 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 head ((though there were times when I really, really, really wanted to punch somebody in the fucking head.)). 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:
  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…

New and creative ways to drive parents nuts.

Guess who got a letter from the special education office setting up an IEP meeting! It is that time of year, we’ve been expecting the teacher to mention it at any time now and let us know what they were proposing. It is not rocket science, right? Right.

So…it’s a bit disturbing to receive a letter that says

  1. that the meeting is to determine Monkey’s continued eligibility for special education services, and
  2. that the evaluations were set up in consultation with us.

Mmmhmmm. OK, first, the 3 year re-evaluation was done last year and it was determined that he was still eligible for special education services. They don’t get another bite at that apple until 2013. So, they are either 2 years early or they have completely screwed up his records. Anyone want to guess which it will be ((If you guessed that they are two years early, try again!))? And, second, this letter is the first we’ve heard about any evaluations. I wonder who they consulted with? Monkey must have some legal guardians out there we don’t know about…hmmm…I wonder if they’d babysit for us?

You know, it must be really inconvenient for them when parents actually read the communications they send out…the really *itchy part of me wants to send the form back in rejecting all their proposed evaluations…instead I’ll call and nicely remind them what year it is ((No, really, I will be nice. I swear.)).

It’s time for another IEP meeting!

I feel like this is all I do!  Gah. 

This is our 3 year re-evaluation.  We have reports, lots of reports.  I read through all of them yesterday.  It’s a bit depressing, as usual, to read about the delays.  Obviously we’re aware he’s delayed but breaking it down to numbers is just so harsh.   In his weakest areas (expressive communication and fine motor) he’s operating at about the 2-3 year old range.  In his stronger areas (receptive communication and daily living skills) he’s at the 4-5 year range with some areas on target.   His other skills are scattered in the middle. 

So what does this mean?  Not much, actually.  We already knew he would still be eligible for special education.  We wrote an IEP and updated his goals less than 2 months ago so those shouldn’t change much.  We know what classroom he will be in.  The only things we don’t know now are 1.  who his teacher is and 2. at which school the classroom will be located. 

Neither of those unknowns will be resolved tomorrow.  The district is still interviewing teachers.  They’re planning to hire someone with dual certification so he or she can teach both the special education and mainstream portions.  The space we all thought would be used for the classroom is unavailable.  The space is currently occupied by a substantially separate classroom that the district wanted to move.  Parents objected to the proposals, for some very good reasons, so the class will not be moved until 2011 at the earliest.  

We’re a little disappointed because the school was one of our proximity schools and it has integrated grades 3-8 classrooms already established, no other school in the district is set up in this manner.  We’ll just have to see what happens.  If the parents’ concerns and the district’s concerns are reconciled it will make little difference ultimately but if things continue as they are Monkey will have to go to at least 2 and possibly 3 or 4 different schools between kindergarten and 8th grade while a typical student goes to the same school K-8.  We don’t want that.  We want him to be able to build those long term friendships with peers and teachers so that when he does go to the district high school he has those friendships to ease his transition.

But, none of these things can be addressed tomorrow, clearly.  So, we go to the meeting and hopefully get it done quickly.  I’m not terribly concerned with getting a perfect IEP this time.  Once we have a school, a teacher, a classroom and a classroom schedule then we’re going to have to fine tune it anyway.  It seems so anti-climactic.  The 3 year re-eval is supposed to be such a big deal and it’s pretty much turned out to be…meh

Not that I’m complaining 🙂

Fun, fun, fun!

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 got the IEP and it’s good!

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.

That IEP meeting last week.

I’ve been chewing over the information that was shared at the IEP meeting last week and trying to make some decisions.  Trying to pick a direction to move…it’s not easy being the grown-up sometimes (heh, please overlook the fact that I do not always exactly act “grown-up” and tend to throw hissy fits that put my 5 year old to shame…just for now.  ‘K, thanks.)

Two years ago we went to the same sort of meeting and we heard such amazingly, wonderful things about our special little nugget…only for everything to go straight to hell 3 months later.  It was a mixture of me hearing what I wanted and the teacher … really, I still don’t know what her motivation was.  But, hey, I’m being a grown-up today so…bygones. 

What I’m getting at is that, since that meeting, I’ve tried very hard to hear what the teacher and therapists are telling me…even when I am having to read between the lines at times.  So, please understand that the following is what I am fairly sure I heard at the meeting…but maybe I missed something between the lines…it happens.  Which is why people should just say what they mean and not try to dress up what we all know is a less than ideal situation…oops, was that preachy?  (and also hypocritical because we all know “less than ideal” is not exactly what I mean…sorry.)

So.  What I heard…

  1. He has met his OT goal of holding a pen in the proper tripod position for more than 5 minutes at a time.
  2. He has met his OT goal of cutting a straight line using “regular” scissors and has moved on to cutting out shapes (circles in particular, he has done this successfully one time but it was a very LARGE circle and not quite what they’re going for…babysteps.)
  3. Both of these are very important because it demonstrates that he is gaining significant strength in his hands (those loose FX ligaments are most troublesome in his fingers.)

  4. He has met his PT goal of throwing and catching a ball for whatever distance they’d set.  He’s now working on dribbling. 
  5. He has met his PT goal of moving through multi-step obstacle courses with support.  He’s working on doing it independently.
  6. His tumbling and jumping are better, he is now working on assisted sit-ups.
  7. His PT has also noted that his upper body strength has increase significantly.  He needs to be strong in his trunk before he can really focus on working his fingers as well as he should.

  8. He is able to sit at a table and work on an activity for more than 5 minutes, with support.  They’re now working on increasing his independence.
  9. He is able to sit at a table and work on a preferred activity for … well …forever pretty much.
  10. He follows the classroom routine with minimal support.  They’re now working on increasing his independence.
  11. His assistive tech device…VantageLite…is in process though there are some interesting issues regarding funding.  We’ll get it worked out but we may be needing our advocate to make a call or two.
  12. He loves his peers and will do things for or with another child that he will not do for or with a therapist.

Areas he needs to work on…

  1. Moving beyond a one step social interaction.  He will take a toy or give a toy but he won’t continue the play routine beyond that.  He will initiate a conversation with a classmate by greeting them or commenting on something the classmate is doing but won’t continue the conversation beyond that.
  2. Independence.  He still needs an adult to keep him on task.  He is, by their own estimation, cognitively and physically capable of performing all the classroom tasks but his mind wanders.  Especially if it’s a harder task.  He’d rather watch the other kids work than work on something that tires him physically or mentally.
  3. Eating.  He can and does eat…a lot.  But he needs to be reminded constantly to use a utensil, use a napkin, don’t overstuff.  This is a biggy because of the social ramifications of not being able to eat in a group in a socially acceptable way.  Kids notice.  Older kids will comment. 

We have finally gotten the go ahead to start Therapeutic Listening with him.  The TL Therapist and Monkey’s OT will introduce it in the classroom and pick a goal to work on.  If it works for him we’ll expand it to home and we’ll buy him his own equipment.  We may end up buying the equipment ANYWAY if they can’t locate it within the district.  It’s been almost a year since we asked about this…I’d like to get going!

We also asked about ADHD since we’ll be visiting the developmental pediatrician this week to continue the discussion from last fall.  They can’t tell if he “can’t” focus or “won’t.”  Which is fine, that’s the Dr’s job 🙂  Now hopefully he’ll have a magical answer for that and the sleep b/c OMG, the lack of sleep makes me crazy.  And I don’t need anymore crazy, thank you very much, am full up with it already.

A question for the more experienced IEP moms and dads.

If it is noted that a child can learn the material and can perform the tasks but isn’t always motivated to perform said task through to completion…that’s not a, not sure how to put this…it’s not a comment on the child and the appropriateness of the goal or placement but an indication that the teachers/therapists need to come up with new ways to motivate the child, is that right?

PTSD much?

This afternoon Duhdee and I will be attending an IEP meeting.  Well, actually, it’s what everyone else would call a parent/teacher conference but we live in a special world where everything is governed by our IEP and federal law.  Awesome. 

So, a parent/teacher conference, no big deal!  Right?  Right.  So why do I have a sick feeling in the pit of my stomach?  We haven’t even started kindergarten and I’m already shell-shocked by the entire IEP experience/process. 

This should be fine.  We’ve read the progress notes, he’s doing GREAT!  He’s a magic little being who charms (and manipulates, in a charming fashion, of course) everyone he works with.   Even knowing what we should hear at the meeting still leaves me flashing back to that meeting two years ago when we heard all the same things only to be told 3 months later that none of it was exactly true and whatever was true didn’t matter…no one could handle him or be expected to handle him. 

*Sigh*  I’m going to go buy some cookies and show up with a smile…hopefully I manage to get there without throwing up.  It’s all going to be fine, I wish I could convince myself of that though.

Preparing for battle.

This is sad, sad, sad but Duhdee and I are already gearing up for some more fights with the school system.  I wonder at what point we will give up and just move.   We don’t want to move.  Five generations of Duhdee’s family have lived in this house.  We like our neighbors, a lot.  We like the neighborhood, a lot.  We just may not have a choice.

The “impossible” challenges we need to resolve before the end of the school year are to convince the district to create an integrated kindergarten classroom and/or change their policy on 1-1 aides (“We don’t do them,” is a direct quote.  Our advocate finds that rather amusing.)  If we had sent Monkey to kindergarten this fall on schedule he had two options 1. mainstream classroom with minimal support or 2. substantially separate classroom, possibly with integrated “specials” (gym, art, etc.)   Neither of those would have been appropriate. 

Neither of these changes are really impossible, of course, we have a new superintendent who knows the benefits of both changes…he’s seen them work in his last district.   But there is a whole layer of bureaucracy built up in this district and while most are genuinely good and likeable people there are people in positions of power that are downright hostile.  One in particular causes a visceral reaction, the very sight of her creates so much anger in both of us…sigh.

Our son’s preschool teacher wants us to stand up and push for these changes but the last time a teacher used us as an example for needed changes it backfired big time and almost cost Monkey his placement.  If we start this fight we will have to see it through to the end.  It’s going to cost money…maybe a lot of money if we have to hire an attorney.  It’s going to cost time, guarunteed to be a lot of time (we’ve yet to write an IEP with the district with less than 12 hours of face to face meeting time.) It’s going to cause stress, which is not beneficial to anyone.

I know it’s needed.  I just hate that it has to be us.  I don’t want to have to fight over everything.  I’d just like something, for once, to be simple.

Yeah, yeah, I know…suck it up 🙂