Thursday, April 14, 2011

Prader-Willi Syndrome and the IEP*

*IEP = Individual Education Plan.  This is a legal document which is developed by a team of individuals including the parents/guardians of a special-needs child, the school principal, the school Intervention Specialist, any physical/occupation/speech therapists, and sometimes if necessary the school nurse...and possibly other school district or school staff members.  The IEP is a legally binding plan for any and all therapeutic, academic, behavioral supports and accomodations a child may need in order to participate in the "free and appropriate public education" (FAPE) every state is mandated to provide for every child.  The Individuals with Disabilities Education Act (IDEA) drives the structure of, and policies/procedures for developing, an IEP.  (Warning: that is a very simplified explanation!)

An alternative title for this post would be "Thankful Thursday".  Brad and I had S's IEP meeting this morning.  At this point the only thing that makes me nervous about these meetings is hoping I will remember to bring up everything which S might need, over the next school year.  I don't really need to be that nervous about it, as we can call a meeting at any point to make any changes to S's IEP.  And fortunately, our school district has thus far been really great in working with us to make sure S is learning appropriately and is in a food-secure environment.  Some of the details of her IEP:
-she does not EVER go anywhere in the building without adult supervision.  We have to make it clear that she must be accompanied by an adult and not a classmate; I don't want another seven-year-old to have the responsibilty for keeping her out of lockers, lunch boxes, or trash cans if she suddenly decides to search for food.
-she must have 1:1 direct supervision during lunch and snack.  We had to clarify this today, as the wording for this accomodation was simply going to be "supervision", which to me could easily be interpreted by an aide as "I can stand 10 feet away from her, supervise 10 other kids at the same time, and she'll still be 'supervised'".  S needs someone sitting right next to her; having someone stand 5 feet away and possibly get distracted is still too much opportunity for her to snag a classmate's food.
-This time around, for this IEP covering the next year, we made it a point to add a behavioral detail to the document.  S has not yet, thankfully, had a meltdown during school hours.  There have been plenty of times since the school year began that a meltdown would start almost as soon as she came home, usually triggered by something really trivial.  While I'm glad for the school staff's sake that she hasn't had a meltdown at school, I would not be surprised if, at some point in the next year, these started to happen.  So I had to let them know what a meltdown looks like for her - and for those of you who have children without diagnosed behavioral issues, S's meltdowns are nothing like your average tantrum.  She completely loses control, screams, and has started kicking/hitting out of sheer anger.  It is, to put it bluntly, an ugly moment.  These moments are only going to get more challenging as she gets older and bigger.  So, the school staff needs to be aware of this possibility, and they need to have a plan in place.  They also need to know that restraining her during these meltdowns is a really, really bad idea.

We also talked with the staff about where S is at, academically.  They have stated bluntly that at this point, they see absolutely no reason to hold her back and have her repeat any of the next couple grades.  She is behind in math and reading, and does need accomodations in those subjects.  At the same time, her progress since the beginning of the year has been phenomenal - she is getting really good at her reading, and can read quite a few of the Dr. Suess books on her own - so at this point the consensus is that she is gaining so much from advancing through the grades with her peers, that it is greatly to her benefit to keep on this way.  We are glad for that.  In S's case, and perhaps for many children with PWS, she may never be able to learn at the same level as her peers.  But continuing on in the same classroom, spending as much time as possible with those peers, is an incredible motivator for her.

We are so incredibly thankful that we landed in this school district.  I mean, obviously my husband and I have tried to go about all of this as calmly and firmly as possible, and made ourselves quite visible to the school staff over the years.  But I still feel fortunate that the school district has responded more than adequately to what we need to keep S safe at school.  I know many, many families of children with PWS have problems - serious, long-lasting problems - obtaining appropriate services for their child from their school district; and sadly sometimes this happens simply because the school district doesn't want to take the time to understand the child's needs, and needs to face a potential lawsuit before they'll do what they were supposed to do all along.

I hope you have lots to be thankful for today.


Lisa said...

So glad to hear all went well with your IEP. Sounds like you did a great job anticipating issues and putting supports in place. Great job! So nice to get it over with, isn't it?

Diplo_Daddy said... that's somethig I've never heard of. Thanks for bring this to our attention. Good luck to you and I hope all works out well.

Rachel said...

I am so glad your IEP meeting went well! It is excellent that your school district is so accommodating to S's needs. I hope there are no melt downs at school, but in case there are it is good that you have prepared them on how to handle it. Great Job Mom and Dad advocating for your girl!