Tuesday, May 1, 2012

IEP fun

We had Asa's IEP today. An IEP is an education plan for Asa. These always make me nervous. There's so much formality in it all. I know this is to protect everyone but I'd so much rather just chat and do what needs to be done for Asa. The paperwork and witnesses and 9 signatures on a page makes me afraid ill say something wrong. I've never felt like Asa's been passed over or cheated and I believe he is certainly cared for so it should be easy peasy! Even still, it took 2 hours!

It's like when you get a mortgage. You love the house and you don't mind the payment but something about sitting behind the big desk signing a stack of papers with language you can't begin to completely decipher, well you start to wonder if you are buying a house or taking on the national debt! And that's my fear with the IEP! The school is great, the teachers are great, the therapy is great but the paperwork is a booger! Thankfully it's all in my head and I only bring the stress on myself! I do feel that I could take out a pack of wild animals for Asa but thankfully Asa's team is more like a pack of cuddlely puppies! :)

Another tough part of the IEP is hearing how delayed Asa is. Of course it's necessary but not fun! And everyone in the room just bragged about how much progress he's made but it doesn't come across on the testing. So Here's the dirty:
-gross motor-9 month old
-fine motor-20 months old
-social/emotional behavior-24 months old
-communication-16 months old
-cognitive processing-16 month old
-language (expressive)-2-4 month old
-language (receptive)-20 month old
-pre-vocational skills-8 out of 31 items tested
So, yep, at best my 4 1/2 year old has the skills of a 2 year old! Fortunately, he is about the size of a 2 year old so he could play it that way. Too bad he couldn't just hang out in a nice daycare instead of starting PreK next year. And we won't even get into K the next year! I can't breath again!

We cleared up some ends that were loose. He wasn't getting the best support when sitting. He can sit in a regular chair but like us sitting on the bleachers to watch a ball game, we are more comfortable with good support. We also went over his heat intolerance. His school is old and HOT! The AC is on or off, no thermostat. We documented the need for him to be cool and there are several rooms that are now deemed cooling rooms for him. The school has an awesome adaptive playground but I told them he probably won't be able to use it for the rest of the year. Today was 83 and humid. So sad because he loves the playground! I also documented that as we transition to full day, they will probably see more of the anxiety and meltdowns we see when he's tired, over worked or over heated! I think they are prepared but maybe they won't need the the info!

One of my big goals was to change his AT (Assistive technology) plan. He was evaled a while ago and definitely needs some technology to communicate. The proof is in the test that shows he can only make sounds like a 2-4 month old but can identify pics and follow directions like a 12-14 month old. He's got a lot more in his head than what he can get out. We started using the PECS system. It was good in small form but to be used widely he'd have to carry a book of pics around and flip through to choose a choice. Too much gross and fine motor work! I was ready to beg for an iPad but the AT consultant was all aboard from the get go! His IEP now includes an iPad for him with GoTalk ready for him to use!! I also requested he get 30 min. a week of dedicated computer work with an AT consultant. He was previously getting 30 mins every other week so we doubled his computer time!

Another huge goal was for me to get him a one-on-one assistant. His first class was so small that he basically had one-on-one help. This new class is still small (5 kids for 2 adults) but its half day and next year will be full day and larger classes. I'm told this year those classes had 7-8 kids. So more kids, more hours, more expectations, more work is gonna equal a greater need for help. He needs hand over hand or direct instruction in nearly all situations. He needs help getting to circle time. If he doesn't have direct contact then he is quickly distracted from circle time and without help he will rarely mimic any songs or hand motions to songs. Without someone making him, he'd probably be happy to just sit alone and color. And then the diaper situation. Asa isn't a quick change but a full on ordeal! The most I can hope for is that he will help pick his bottom up when I put his pants back on!
More importantly than all that physical need I feel he needs an extra close watch so he doesn't overheat, over work, get stressed or get dehydrated during the day. We have been on such a good run but have had many days where he runs a low grade fever and no other symptoms. The assumption is that his body is stressed is trying to reset itself. He's had a couple of episodes of over heating, once getting so hot that he puked and couldn't stand up until he had rested and cooled off. He has had to be taken to a coolor room on a couple of different occasions and thankfully the school had staff and his class is small enough to pull someone out for him. How long will that last though. And if he's gotten to the point that he's in a meltdown it's too late. He's missed instruction time, caused a scene and experienced horrible physical symptoms. The goal should be to prevent all this by constantly monitoring him, watching his behavior, skin color, muscle tone and the GI stuff. It's a balancing act to keep this boy going?!

All that to say that the principal said I need to take this proposal to our director of special education. The school doesn't issue the aides. So I'll gather more info and go that route. And I could be wrong and he could go in seamlessly but many days just the 2 1/2-3 hours a day is enough to have in meltdown mode at home! If anyone has any tips I'd love to hear them. I'd also be interested to know if I'm being unreasonable wanting an aide. I guess everybody would love their own aide so maybe he doesn't even really need one.

So, any thought?


kathy brower said...

I have 3 with IEPs - you are not being unreasonable wanting an aide; your son needs one. It's easier getting one now than when he's further along in school. He needs one for his safety, which should not be debated.

The Martin Family said...

Have you tried a cooling vest for Asa? It sometimes helps Will on the playground and even inside. There's a wide range of costs, but we just do the cheap version for some extra support. http://www.silvereagleoutfitters.com/categories/Cooling-Vests/Childrens-Cooling-Vests/

Nan said...

Kudos to you for fighting for the aide - it is so difficult in Massachusetts to get one. It sounds like the school is willing to do what Asa needs and that you are right on top of things. I wish more parents were able to advocate so well for their children.