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Well, it's happened. The Team is talking about modifying Jaysen's curriculum.
Shit.
I mean, if it's what he needs, of course I am all for it and will support it fully.
But how do we know he needs it?
This is his first year being mainstreamed, due to technicalities of the district...
Their response to me was that he bombed his econ test. Okay...well he's also aced some other tests, so....?
I have a meeting next week to discuss it. We're also doing a REED and Hopes and Dreams? The REED (Review of Existing Educational Data) is to determine what evals we would need in his 3rd year re-eval coming in December, based on class reports and standardized tests. Mkay. The Hopes and Dreams? Sounds like a load of fluffy bullshit to me. Let me guess- we're all going to sit around in a kumbaya circle and talk about where we want to see Jaysen a year from now, then 3 years, 5 years, blah blah blah. Oh gawd, make it stop.....
Back to the issue at hand...
I'm pissed off that they just want to modify.
I don't think they've exhausted their efforts beyond a moderate attempt, and even then, it's been more of a "let's see what's on our bag of tricks" approach.
Yes, Jaysen has accommodations.
He has a parapro. He has extended time. He is allowed the option of working in a quieter environment. He is allowed breaks.
So what's the problem?
I'm not convinced that he knows how to use these "resources".
I'm not convinced that he is able to identify when he needs these "resources".
He knows he should take a break when he's upset, but does he know when he needs the break?
Jaysen has self-regulation issues. He misses the "cues" that tell us we are getting worked up, and can seemingly go from 0-60 in no time. Is a break effective, if he's already a 8 on a 1-10 scale?
The real problem???
Jaysen is one of those kids who is all over the board when you talk about function. He's smart, and he's verbal. That combination is usually assumed to be "high functioning", based on presentation. However, his verbal abilities are way above his cognitive ones. You can ask him a question, and he will answer it like he is "supposed to". Ask him to expand, or the same question phrased more open-ended? Omg, are we even having the same conversation? I tried studying with him for a test, the night before he knew NOTHING. He ended up acing the test. ACING it.
The problem is that Jaysen is so "internalized" (I just made that up), meaning that he perseverates, a lot. So much in fact, that I believe that's his main deficit. His perseveration leads to heightened anxiety, not knowing how to deal with that anxiety leads to heightened frustration, frustration leads to refusal, non-compliance, outbursts, or kaboom. He doesn't show outward measurable signs, so FBA's have been ineffective. They can't track what they can't see, and there are no patterns to pick up on. So to them, it looks like "totally random behavior".
Well we all know better than that. Nothing is "totally random". Something is happening, we just aren't able to identify it consistently. But it's not "random".
I'm all over the effing place on this post, no?
Anyway, because they can't identify patterns in Jaysen's behavior, they want to modify his curriculum because he's still getting frustrated and upset. They think a reducing expectations will help that.
I think that's kind of nuts.
You're telling me you can't identify what's upsetting Jaysen, so you are going to assume it's the expectations placed on him. You are also going to assume that reducing these expectations is going to decrease his frustration and raise his willingness to participate in school.
Let me ask you this.
I suck at math. Seriously, that's even exaggerating for me. I am embarrassed at how horrible my math skills are, and I should have been paying more attention in 3rd grade instead of stuffing my bra in the bathroom. But back to the topic....
If you put 20 algebra problems in front of me, and see that I am struggling with them, what can you do?
1- You can reduce the number of problems from 20 to 10.
This is great, if I even knew how to solve for "x" on even ONE problem, but I don't.
2-You can give me more time.
Another great one. I have even more time I have to spend in algebra hell...
3- You can give me a calculator.
Great. That whole "watch I can make it say hell and boobs" joke never gets old.
4- You can break it down and explain it to me in steps.
Now this may work...I have bigger boobs now and don't need to stuff my bra.
5- You can give me basic math facts instead of algebra.
This is a great option if I don't have a strong grasp on basic math and need to back up.
My point is, if you can't identify the problem, how do you know what the solution is? I think they are wanting to jump into "modification" (option 5), before 1-4 are exhausted. Moving from Accommodated to Modified curriculum is a huge deal. It means my son will never graduate with a diploma. It has the potential to affect his life negatively. He will not have the opportunity to attend college. He wants to go to college. He wants to be a teacher. Even if college isn't in the cards, I at least want him to have that option. Options are important, people.
I'm not comfortable that they've shown me he is unable to achieve the minimum required outcomes in the general setting with accommodations. What are those accommodations? That's where identifying the problem comes in.
I'm rambling again.
Because I'm frustrated.
Because Jaysen is *rightfuckingthere* on the fence.
I've asked for the Autism specialist to come in and observe. The Autism consultant is the douchebag from the "shitty school" who had no freaking idea anything about Autism in real life with real kids. But that's where I have to start.
I need help peeps.
I need your opinions, advice, experiences, stories, etc.
I need to know if it's better to not modify but maybe put in a more restrictive environment like up his sp.ed time and increase Resource? Or is it better to modify and keep in gen.ed?
I hate this.
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4 comments:
Welcome to Hell. Fortunately, Jaysen and joey have a lot of similarities. And guess what? They need to try some more testing accommodations first.
Does he have 1:1 testing? Are they making sure he is given his tests on a "good day"- ie, they can change the day he takes a test, based on whether he is "test ready" (a child running around the room shouting "Beep Beep!" is NOT ready to take a test today, but might be fine tomorrow). How much language is involved in the test? Does it need to be simplified? Is the testing format appropriate in the first place? In other words, are they testing his skills in econ, or his autism?
Having the autism specialist observe is a fab idea. Ask for an independent evaluation, too, from someone you trust- is there a local autism school? A private OT or speech therapist? Almost anyone who actually knows something about autism would be a help.
Also, before modification, asking for the more restrictive environment, but insisting on the regular curriculum, is actually usually preferable.
Also, if he is struggling in this subject, but not others, ask for him to be "mainstreamed" for the subjects he is fine with, and place in the more supportive environment for those he is struggling with. Modify his schedule, not his expected work level or outcome expectations.
Answering questions is another issue we share. Joey can answer in an expected manner because we have taught him to- it is a script. Move to something more open-ended, and you have to let him process- which takes too long for teachers who have no fucking clue what autism is really about. They don't want the answer twenty minutes from now, they want it right now. So I suspect he knew everything just fine for that test- he just had trouble expressing it for you the night before.
Your staff needs to be trained to recognize when Jaysen needs a break, and prompt him- BEFORE he reaches the 8 in the 10 scale. They can start by implementing a system where the regularly ask him how he is and if things are going ok. We did a color system/engine eval (blue- bored, engine too low, need stimulation/green- just right, all good/yellow- feeling ramped up, anxious, overstimulated/red- DANGER! DANGER, WILL ROBINSON!) You can make it a back-and-forth while everyone is learning. "Jaysen, you seem to be doing great- are you feeling yourself in the green zone? Jaysen, you seem a little upset- are you in your yellow zone and need a break? etc). The FBA should include these kinds of strategies, so that they 1. can learn the cues they are supposed to be looking for, not the ones they simply expect to see- the ones he actually uses! 2. see what of feedback they can get from him, and try different feedback systems to see which ones work for him.
NO BEHAVIOR IS RANDOM. I have NEVER seen a child act randomly. If it looks random, that is because you missed the meaning and need to spend more time in figuring out what is happening- what are the antecedents? How is Jaysen perceiving what is happening around him? What are the triggers? What consequences occur from the behavior? What reinforces the behavior? How can the staff work to reinforce desired behavior and enhance communication?
When reviewing existing data, look for data holes. Make sure he has an up-to-date, independent eval for OT and speech and anything else you think needs evaluating, or any evals you think are inaccurate. You can ask the school to pay for those independent evals- they are your right.
And having a para doesn't mean he has the RIGHT para. Is she trained? DO they have a working relationship as student-para? Can s/he pick up on Jaysen's cues and "Speak Jaysen"? How long have they been together? What experience and background does s/he have with autism? Paras needs to be more than just warm bodies.
So yeah, reducing expectations before determining antecedents is nuts. What happens when that has nothing to do with the issue, and doesn't work?
I would have written what Joeymom did, but she beat me too it! :-) My son is a Junior in high school now. It's taken 3 years of trial and error to get the right mix of courses (some mainstream & some resource) and course content. He has a para some of the time but much less now.
In the beginning, my son had a really difficult time knowing when he needed a break or needed to ask for help. In middle school, he started to get a grasp on how to self advocate, but lacked some language skills to talk about his feelings.
Now 5 years later, his coping skills have grown, his self advocacy skills have grown, and he has built a vocabulary to describe his feelings and what he needs.
Most of this is because my boy is a developing human being. Heck, we all are. But his dad and I have never ever backed down with the school when it came to where we want him to be after high school.
Our goal is independent living.
So in every IEP meeting, we state the goal and what it means to us. We challenge our team to challenge our son so he can grow, but to be aware that when he says he needs a break....he really does need a break. If I find out he was pushed too far and had a meltdown, you bet I'm the one saying, "Well duh. He told you he needed a break. Listen up next time."
It's a huge juggling act. No denying that. There are nights I lay awake wondering what change can be made here or there if we are having difficulty.
In the end, you must be your child's best advocate. Be the squeaky wheel,challenge the school to think outside the box to create solutions that work. Ask your son what he needs. We did. It took a few days (ok..sometimes weeks) to get an answer. But it was also an important step in teaching him to be a self-advocate.
Hang in there. I'll be thinking of you guys and sending strength in your direction.
The previous two posts were great! The only thing I would add is that on many occasions we have been told by a therapist, specialist, teacher, expert things that limit our child. These experts were using their past experiences to project the future for us to "help" us decide which route to take. If their analysis didn't agree with my own it was really hard for me to listen and then basically ignore it. I often felt that my child was more capable then they thought he was. When I disagreed I usually was on the receiving end of a "this parent just doesn't understand their child's limitations" comment.
But I ignored them an pushed for what I felt was right and every time I did this my child rose to the challenge. Just the other day one of our therapists said "I could not have predicted how far he has come." Well, I could have predicted and I did.
Don't let them convince you that Jaysen needs modifications if you think he can do it. You are likely the one that is right. They will tell you that they are the experts but they aren't. You are!
You guys are friggin awesome.
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