Thursday, April 14, 2016

IEP and Assessment Overload (recap)

I'm happy to report that I'm past the "assessment fog" that persisted for the past, what, two months?

Assessments are good. I mean, it's important to know 1) where one (Elena) is regarding her physical/academic/social progression, 2) what are the next logical areas for improvement, and 3) realistic preparations for the future. Better to know than get, in Elena's words, "the bad surprise".

But they can really be a downer. Assessments can show you how far behind the curve your child is, if/when they will need intervention, and shove it in your face how hard it is to integrate them into normal life.

In our case, it was just…a lot of information. I guess I've been doing this long enough that the setbacks/differences aren't upsetting as much as this whole process (preparing for middle school from elementary school) is overwhelming. So. Much. Information.

I'm going to break down this recap into private assessments vs. school (public) IEP notes.

Private Assessment.

This isn't necessarily to prepare Elena for middle school, but our PT stressed to me on multiple occasions that Elena should be evaluated for Occupational Therapy. I did this through the school earlier this year; E didn't qualify for services. Basically, she was in the lower to normal range of fine motor skills (finish the picture, trace a certain line, identify shapes in an array, pick up small items, etc.). It took her longer to do the tasks, but she still scored within "normal" range. There was a definite deficiency in visual (FIND SPECIFIC WORD) processing--where the question involved moving a shape in your mind to find the answer. Basically, if Elena had to involve a motor process--pen to paper, for instance--she was going to perform better than if she had to do it in her head. In itself, this is not highly unusual; lots of people perform better when using hand-eye-mind coordination than just one at a time.

I chewed on that for a while. Our PT strongly suggested I do a private evaluation--where they would look at things that would impact her life in general, not just her academic performance. Jason and I were definitely looking for some help in this area, mostly related to time management and self-care. We had an OT assessment performed last month. Elena qualified for services. Her greatest deficiency is called "executive function", which as far as I can tell, means "figure out what you need to do in a space efficiently, in order, so you can leave that space and do the next thing". As in, get dressed in your room,  and do other things in your room (deodorant, brush hair, put hair up) before coming downstairs (instead of going up the stairs because you didn't put on socks, or shoes, or leave the only hairbrush you'll use up there etc.) . Use the bathroom before sitting down to eat, etc. Our OT gave us this homework (which she has never done before, for various reasons): When Elena wakes up (not on a school day), tell her to make her own breakfast. (I told her there was a smaller container of milk in the fridge; there is plasticware in a lower cabinet). She had to figure out what to do, what to move, how she would carry, etc., and problem-solve through the task. (It took a long time--but she did it, very well. No disasters yet, but when they happen, it'll be a learning situation).

Other things to work on involve her arms not at her sides (washing her hair in the shower, for instance--she's doing well, but it's a work in progress), ordering, organizing (regarding homework, diligence in cleaning up (otherwise she'll lose work, or trip over her things, or forget them, etc.).

The OT assessment and IEP were basically done around the same time; I didn't talk to E about them because I didn't want her to feel like there were all these things "to fix". Really, these are things that a lot of kids work on--but for Elena, they pile up and up and up--I don't want her to be overwhelmed with therapy or improvement tasks. It's a new idea for me. AND all this was going on during the school play production--so, a lot was already going on, so I figured any OT work was going to have to wait until after Spring Break.

School IEP.

This was a huge one. We met FOR THREE HOURS. I wasn't apprehensive of this meeting--Elena's educational team is truly fantastic, and want the best for her. There was one rep from the middle school (Special Ed; the PT was not available), and some of her current educators. Overall, the meeting was positive--very eye-opening for me.

My only experience with middle school was mine. The short version is it was fine, mostly positive; technologically lacking and no one had ever heard of an IEP. Times have changed, and I feel like new parents of middle-schoolers feel like they must be going to some alien nation where the only familiar thing is their child.

The Cliff Notes: Elena will have a full-time aide. This will probably feel like a setback for her, b/c for the first time she doesn't have one this year--and she's doing well. The school is just so much bigger, the classes much further apart, the necessity to carry and be on time--she'll need one. She will get her homework in advance (apparently most kids get the week's work on Monday anyway), and will have extra time to complete tests and large projects. She will have two sets of books (one at school, one at home) so she does not need to carry them at school. The kids get laptops--I asked how heavy they were. They said "pretty light"--that doesn't mean she can carry them, though. We'll have to test whether or not she can manipulate it and put/carry it in her backpack and plan accordingly. They have stairs and an elevator (only on one side of the school), they'll need to figure how what's fast/safe/appropriate. She'll have adaptive PE (pull-out), on a schedule she wants; they will also let her work on skills that they don't necessarily work on at school (her choice! she could bring in her bike, for instance, or do trampoline work, or try to work on tennis). We're not sure about lunchroom yet. She will have a special chair for each class (they made one last year, looks just like everyone else's chair but has a clear footrest so she has her best posture). Since there are multiple classrooms, she will have to have multiple chairs (that will have to be moved when the classes exchange). The logistics are complicated. They have a science lab, where kids sit, or typically stand. They use flames, for instance (what will E do? She can't use her hands without leaning on a surface, not great for heating elements or knives, and she can't sit down or be in a stander--what if she spills something caustic or catches fire? Things to think about!).

If that wasn't enough, the biggest issue I see for Elena is time. Things take her longer--walking, writing (they want us to use talk-to-text, I have mixed thoughts), self-care, moving things, eating. I tried to find something that could be done to save her some time…she needs more rest than her peers, so staying up late isn't a source of more time. Here middle school starts later than elementary--which means they get home later, and have more homework, making the after school-before bedtime squeeze even worse. After school they have cool activities (non-sport) that I think E would love; I don't want her to feel like she can't participate, or has to spend all her time with tutors. My best quick fix is to drive her to/from school. I figure that saves 20-30 minutes on each side of the day. I've been trying that lately, and it makes a huge difference (more on that in another post) in terms of fitting in fun, homework, and good rest.

There's more, but it's a jumble in my brain and I've put all the paperwork to rest for a while because I don't want to look at it right now.

Overall--I think we are in good hands. Her team want what is best for her, they want to work with me, and more importantly--they want Elena to have control over what she thinks is important. Elena is nervous about middle school; a lot of kids are. Jason thinks it'll be great (eternal optimist!). Elena tends to pleasantly surprise me in situations like this, so I'm crossing my fingers.


Just the Tip said...

I a SO SO grateful that I can drive the girls to school (for now). P is only in Kindy but our bus ride would be roughly 45-55mins...and we live 8mins from the school. It allows her so much more rest and because parent pickup is first she actually saves more time in the evening as well. And because she lacks good bladder control I did not want her to have an accident on the bus. Afterschool stuff is rough for us, we've always had a strict 7/7:30pm bedtime..we just tried swim lessons and didn't get home until bedtime...yikes! P has EDS/mild CP/mild spina bifida.

Good luck with her transition..i'm sure it's scary and a lot of unknown! Can't believe middle school didn't know what an IEP was!?!?

Anonymous said...

Hi Amy,
Thanks for the post. I’m a 20 year old college honor student with CP. I can tell you now that E will not be able to carry a laptop in her backpack. I’m twice her size and no matter how light the laptop is I cannot carry it in a backpack. I got assessed at 4 years old for OT and text to speech and both proved useless. I did not need OT or text to speech at all. My issue was not the skill itself but the fact that I was not given enough time to learn the task or the task was not explained effectively. You seemed to be concerned with speed. Speed should not be the goal here. Let her learn the task CORRECTLY even if it takes 5 hours. Then once it is learned it will stick. In regards to shoes, when I lived in a house with stairs at Elena’s age I kept shoes and AFOs DOWNSTAIRS so I could take my time and had to sequence less. I also do my hair last. The way you are sequencing her movements seems like a bit much even for me and I have done these tasks since I was 7. Teach her very slowly what each task is, let her take as much time as she needs as long as she is still moving, then explain to her the general order the movements should be in. If she continues to do the movements out of order there may be a neurologic motor or sensory reason for doing it out of the normal order. Sometimes I go the long way to be closer to a wall or object in case I lose my balance but these kinds of neurologic desires are invisible to others. Ask her if she has any particular way that her brain likes to see where to move. She may not be able to explain fully but it may give you some clues as to what her motor plans are. In regards to not being able to move shapes in her mind, that’s exactly why I can’t do math. If someone tells me a math operation or shows me a visual I can do it perfectly but if I try to picture the math set up in my head to write out what I saw or heard before even just a few minutes later, I can’t. This could why Elena has math issues.

TheCzarsOf45 said...

Also, when she has to carry a laptop, ruggedness is critical. I am a broadcast engineer, and when tone happens, laptops get killed around me. Which is why I carry Panasonic Toughbooks at work, and business class laptops in personal service, I need machines I can repair myself when they take tumbles with me. Remember, Elena when too many tests happen gets overwhelmed sensory wise, and needs outlets for frustration and managing test taking at her speed, which is not normal people speed. We sit poorly if we must sit too long. Even at 52, I still have those issues in college modernizing my skillset.