School, abstraction, and so-called requirements: part 2

I recently posted about Nick’s school requiring him to study poetry and decipher figurative language. This requirement caused Nick a lot of stress and was leading to meltdowns. When he was finally able to explain to us what was going on, we promptly requested an IEP meeting to solve the problem.

Here’s what we started with.

Problem: A child whose disability prevents him from being able to understand abstraction is being required to show understanding of abstraction to meet graduation requirements.

School’s position: Any deviation from the curriculum would put Nick on a modified diploma track, eliminating many college and financial aid options in the future. They did not see a way to help him around the poetry requirement.

So we brainstormed in preparation for the meeting and went in armed with proposals and justifications.

Our position: It is not acceptable to require a disabled student to do something he can’t do. If he MUST take units on poetry, he must have accommodations and supports designed for his neurology. Just as a kid in a wheelchair gets a ramp to get him past stairs, Nick needs a ramp to get him past figurative language.

The solution: Provide ramps in the form of “Cliff Notes” about the language in the poetry unit assignments. Tell him that rivers symbolize connection, butterflies mean rebirth, etc. If the goal is to help him recognize these abstract meanings, the best way to help him do that is to let him memorize them. That is now his neurology works.

To head off protests that this means giving him the answers instead of making him figure it out, I pointed out that in other classes, the kids routinely get the answers handed to them. In history class, for example, the teachers provide the dates, events, and names during lectures, and it’s up to the kids to memorize them for tests.

When it comes to taking the poetry unit test, they won’t know ahead of time if the questions will be about the specific metaphors and other abstraction he has already learned. (He takes Language Arts via an online program called PLATO, with the guidance of a teacher who is present in the computer lab. Tests are automated and randomized.) But he can learn to recognize certain patterns, like words about sunshine and light meaning happiness, and make his best guess at what the language means. Also, though the test is graded automatically, the teacher can review his answers and give him credit for any that make sense from Nick’s perspective, as well as explain the ones he got wrong.

Karla is drawing up a matrix for Nick and the teacher to follow–a visual flow chart of sorts, so that they know what to do in every situation. For example, when you don’t know the answer on a test, you either a) guess based on what you know or b) guess randomly so you can move on to the next question. This helps keep the class as predictable as possible and eases his anxiety (keeps him from getting “stuck”) about not knowing the answers.

Last resort: He can fail the units on poetry and still pass the Language Arts class as a whole.

The requirement is not that he show the ability to understand abstraction. The requirement is that he do the unit assignments and take the tests. Now, he will be able to do that with minimal anxiety, as we provide him a ramp with respect for his neurology.

Bonus: Meanwhile, his IEP team asked if Nick would be willing to critique the PLATO program from an autistic point of view, so they can consider modifying it for future students. Talk about being on the forefront of really excellent change! We could have given up a long time ago, but because we stayed in the system and insisted they accept our point of view, and because the district decided to work with us instead of against us, we are changing minds and opening doors of possibility for other kids.

Score: Team Nick 1. School… also 1! I love a good win/win.

P.S. While Language Arts has been “on pause” while we figured all this out, Nick got straight A’s in all of his other classes in his first semester of freshman year. Two science classes (including one where he is the only freshman among juniors and seniors), math, and social studies. Straight A’s for the kid they weren’t sure would ever learn how to read. Booyah. 

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Pros, cons, and trust: the mentorship experience

There are pros and cons to everything. As awesome as it has been to see Nick learn from his amazing mentor, I have to admit that there are some drawbacks:

• I’ve had to watch my kid happily take the same advice from someone else that he has been rejecting from me for years.

• As he learned to be proud of who he is, I had to bite my tongue when he bragged about how autistics are SOOOOO much better than NTs.

• I get way fewer hugs from him now, because he has finally recognized that they stress him out.

• I’ve had to face my own mistakes and hear “you’re doing it wrong.”

Wait a minute…. Are those really drawbacks? For him, or for my pride? OK, I confess: those aren’t really “cons” at all. If there has to be a negative side to something, and all it entails is me swallowing my pride, well… bring it on!

Far from resenting Karla’s ability to get through to Nick where I can’t, I rejoice that she gets through to him. I’m thrilled that he is proud of himself and his neurology, after feeling hopeless and frustrated for so long. (And I loved it when, after being diagnosed with ADHD, I got to tell him he couldn’t to call me NT anymore!) Every hug is now a treasure, and I enjoy the lack of meltdowns compared to what he used to have from too much touching. I have learned to look ahead instead of wallowing in regret about my past mistakes. If I look back, it’s only to share what I have learned with the hope of helping other people forge an easier path. “Cons”? No. Win/win? HUGE.

A lot of people are curious about what the mentor/mentee relationship looks like. People often ask me what they do together, if they have formal “lessons” or how she teaches him. But really, all they do is hang out together, doing things they both enjoy. If he chooses to bring up an issue, she helps him with it. When something comes up where they are–for example, when he is served the wrong order at a restaurant–she helps him navigate it and understand different contexts. Sometimes she has a plan in mind, like the decibel meter experiment, but usually they just spend time together, two friends doing what friends do. In the process, he benefits from the “pros”:

• He gets exposure to an autistic adult who is successful, independent, and happy, but who has struggled in her life. She can teach him how to avoid those struggles through awareness, acceptance and advocacy.

• She helps him to be proud of his logical way of thinking, his intelligence, his incredible memory. For a time he went full-bore into the mindset that the autistic way is always better than the NT way, and this was actually OK with me because he really needed to spend some time feeling great about himself even if it meant that he thought a bit less of me for a while. Now, he is more likely to appreciate individuals for themselves, but he is still proud of himself. He comes up with great ideas, as he always has, and credits his autistic mind for them, reminding me that “this is why we have autistic people.”

• She has taught him to be aware of his sensory processing issues. Before, we didn’t think he really had any. But we also didn’t know why he had so many meltdowns. Karla brought a decibel meter on one of their outings and they measured the noise levels of the various businesses they went into as well as their own stress levels. This was the first time Nick had ever been willing to focus inward like that and try to recognize signs of his own stress. His dad and I had tried for years to help him recognize these signs before he exploded, but he had always angrily refused to try. Enter Karla with a decibel meter and a science project, and he happily joined in.

Since that day, he has been more aware of the effect of sensory input on his general sense of well-being. He now plugs his ears against loud noises (or just his good ear, LOL; he has moderate hearing loss in the other) and protests if I do something like run the garbage disposal without warning him. He shies away from crowded places and bright lights. We now buy him Transitions lenses with non-glare coating for his glasses, and he has custom-fitted earplugs he can wear on a string around his neck. In a way, he seems to be “acting more autistic” since meeting Karla. Some people in Nick’s life see this as regression. On the contrary, I see it as huge progress because the flip side is fewer meltdowns and a genuinely happier kid. He continues to become more self-aware and to protect himself, and this means not getting overwhelmed and melting down due to sensory overload. He has also learned to accept and feel good about himself just as he is, whereas before he met Karla, he felt hopeless and wished he were different.

Karla and Nick are very well-matched. They both struggle with executive functioning, but Karla has developed so many strategies over the years that she can teach him as they go along. When he has trouble regulating his emotions, she defuses his temper with her irrefutable logic. Since his sensory issues are mild compared to hers, he looks out for her when they are out together in loud and/or crowded places, and she describes the effects she’s feeling so he can recognize them within himself. They’re both incredibly smart. They understand each other so well that they can communicate without speaking. And they both love reptiles and fishing and enjoy them like any good autist: with thorough research, scientific experimentation, and exuberant glee.

I’ve always believed that kids need a village, not just their own parents. Nick had a hard time accepting people into his life in that way because he never felt truly understood. In our society, we are relatively isolated, lacking the diversity of a true village. Reaching out beyond our inner circles does often involve swallowing our pride and admitting that we need others, but that is not a “con.” That is the power of awareness that leads to acceptance and advocacy: the three A’s of true autism support.