Wednesday, December 20, 2017

When Help Harms: Surviving Special Education


The author, surveying the forest and deciding navigation while pondering how to provoke a shift in
attitudes towards disabled students on parent and educator sides that would eliminate learned
helplessness, encourage self-advocacy and self-confidence through autonomy and understanding
of real-world situations. 




Winter Cevik is a small, unusually vocal hen in her mid-thirties. In her spare time, she enjoys laying eggs (usually 500 words or fewer), writing IEPs, and offending neighborhood wildlife.


 Two perspectives plague special education. They’re twin roads paved with good intentions, and fail for the same reason: they reduce a disabled individual’s worth to how they make us feel.

We do this with everything, of course, caring about or disliking others, ourselves, even objects, based on personal utility and emotional payoff. It’s a reflex old as language, but when we’re talking about it governing how we decide the futures of other human beings, it merits a closer look.

For the sake of delineating these two mindsets, I will label my examples as “parent” and “teacher”, but these ideas aren’t mutually exclusive or limited to one side of the table. Both groups can and often do indulge in both sets of ideas, or move between them. Sometimes everything from pop culture to district-level administrators encourages and promotes them.

TEACHER:

"Lacey" is a 10-year-old diagnosed with intellectual disabilities. She’s petite for her age and often behaves like a much younger child, with language and interests far behind her peers. For most of her time in elementary school, her friendly behavior and trusting nature with everyone has made her a hit with school staff. She’s often made the unofficial mascot during trips, performances, and events. Whenever she encounters a new stranger in the school building, she will march over and introduce herself—then offer a big hug. Staff have laughed, cheered, and encouraged her. In inclusion, she often asks her gen ed teachers to hold her hand or cuddle while she does her schoolwork, sometimes taking their hands and putting them around her as she’s speaking to them. On a few occasions, she’s also asked this of friendly peers.

Her parents are concerned. Lacey will be a middle schooler soon, and she needs to learn appropriate boundaries with staff and peers. During an IEP meeting, they request that school staff stop holding Lacey’s hand when walking down the hall with her. Her parents also want to discourage her from approaching every stranger she sees in the school building—they see this becoming a serious issue as she grows older, especially if she’s in the habit of immediately attempting physical contact with strangers.  They’ve also asked that gen ed teachers be firm about making peer contact age appropriate: no “baby” talk, no attempting to pick her up/carry her, no using pet names. This, they say, is stigmatizing, and gives her peers the wrong message.

Results have been mixed. While many teachers understand that Lacey will have to deal with the realities of adulthood eventually, right now, they see a vulnerable, sweet young child who is reaching out for love and approval. What’s the harm in holding her hand while walking to the bus? What’s wrong with giving her a hug now and then? And her peers are being so supportive of her. Why ruin that relationship by pressuring Lacey to live up to unattainable social standards?

The hand holding, hugging, and greetings persist until Lacey graduates from elementary school. During the end of year party, she sits on her favorite teacher’s lap and serenades them with her favorite song from preschool.

Everyone’s a genius. Don’t judge a fish by its ability to climb trees.

If I could ban one quote forever from professional development meetings, it would be that one. Ostensibly, it’s a reminder to evaluate each students’ unique set of strengths and needs, rather than trying to measure potential through inappropriate standards. That part is fine. The problem is how this idea manifests in special education.

In districts with attentive management, good funding, and well-rounded teachers, this becomes meticulous data and research-based interventions, great home-school relationships, and a strong sense of what skills the student will need to thrive in future environments, including upper grades. In districts with poor management and overindulgent staff, this idea morphs into doing away with any sort of standard, lowering the bar to nothing, and refusing to acknowledge any environment but the current one for that student.

This isn’t done out of spite, or even incompetence. Worse. It’s done out of pity.

Some kids just function way below age level and continue to need adult support far beyond their peers. Some students come from heartbreaking situations and have had to grow up too fast, with no opportunity to be themselves. Some are bullied for their disabilities, by peers or staff. It’s hard not to read their stories and break down. How do you establish a loving, trusting relationship with a child who is having—and is likely to have—a very tough life, with few people showing them any love or sympathy? How do you get to a point where this child builds up self-esteem? How do you get this student to pass the class and move up a grade level so they don’t continue to be behind and feel hopeless?

It’s easy to see where the idea blurs from creating a supportive environment to creating one with few demands. Our job is to provide care, socially as well as academically. If we can give students a safe place to be their sweet, na├»ve selves, why wouldn’t we?  We can build up their confidence and trust in people again, we can repair burnt bridges. We can give them a chance to move up a grade level, get that high school diploma, apply to that trade school, talk for them at their meetings. We just need to do most of the work to get them there, because, bless their hearts, they just can’t do it alone right now. But they have time. Maybe in a year or two. Or three. Or after high school. There’s no rush to make them little adults right now when they can’t even feed themselves properly yet!

Let’s face it, short term it feels great. The student loves you for it. Maybe admin loves you for it because it makes you the all-nurturing, sweet-as-honey teacher-martyr special educators are often stereotyped as being. It diminishes behavior concerns. It’s more work for you than the student, but you go home feeling accomplished. It’s gratifying.

Until it isn’t.

This is how I end up with high school students who can’t tell me anything about their own disabilities. This is how I end up with students who have no idea how to follow schedules, interact appropriately in groups by doing basic things like taking turns with others, or understand what tasks they are capable of doing themselves, without any outside help. This is how they end up knowing nothing about how to achieve post-transition goals. This is how learned helplessness happens with neurodivergent students—they mentally check themselves out of tasks they have learned others must do for them.

Their educational lives had been characterized by extremes: bullying or indulgence, isolation or saccharine attention to gratify the sensibilities of a non-disabled crowd of caretakers. Rarely has it even been a balance of challenge and support, very rarely has it been age-appropriate learning. They’ve been given just the wrong kind of latitude to “be themselves” without any foundation to help them understand who they are, what they need, and what they’re capable of. They know that teachers are there to give answers to tests, give out stickers for good behavior, and snitch if you don’t comply. Their teachers are there to be needed, and they are there to need.

I’ve watched "Lacey’s" story in my own classrooms, while I chastised paraprofessionals, teachers, and peers about infantilizing students. I had strong talks with students about deadlines, missing appointments, and actually using their resources to finish their assignments once they were aware of how to follow a schedule and look up information. I fretted over the fate of students who were too touchy, too friendly, too trusting of others when administrators referred to my self-contained class as the “low babies.”

Pity kills all relationships. It reduces the other person to a thing that makes us feel bad, drives us to relieve our own bad feelings rather than see the potential in others. It goes beyond ableism: it’s a betrayal of the very philosophy of our field, to provide true opportunities for our students to mature, develop, and come into their own.


PARENT:

“Jay” was diagnosed with autism and severe intellectual disabilities when he was 2.  He’s in 4th grade now and making gradual progress. He’s learned some pre-reading strategies, is doing well with brief interactions with peers and frequent sensory breaks in between.  At his annual IEP meeting, his teachers suggest starting him on sight word recognition, early math concepts such as comparing quantities, and adaptive PE an hour a week, as well as few hours of inclusion in grade level activities. They pull out the data to back up his present levels.

Mom is not pleased. She’s heard stories of students making rapid progress in other districts, innovative strategies to get them to speak, socialize, and participate with their peers. Although Jay’s early prognosis was dire, he had made rapid progress when he was given early intervention—he was toilet trained on time with his peers, participated in inclusive preschool just fine with everyone else. Why the low expectations now?

Easy. The school is holding him back. They’re giving him work that stigmatizes him and makes him realize he has a disability. It’s hurting his self-esteem and he’s shutting down, which puts him further behind. He clearly needs school-sponsored tutoring, increased speech therapy, and social skills class to bring him out of his shell. And adaptive PE? Please. Her neighbor’s campus has a pool, and her daughter uses it daily. Aquatics for an hour a day can triple reading and math scores for kids with autism. Yet they hadn’t even suggested that for her son.

It’s time to call up that advocate.

The Parent Perspective goes something like this:

1.      My child/my child’s true potential is hidden underneath the disability. My child must be separated from his/her disability.

2.      We need to remove/neutralize/extract the disability using the right set of tools so that my child can be who he/she is meant to be

3.      Experts are there as vendors of these tools. The ones that don’t do this, or don’t feel the same way, are roadblocks to be removed from my path.

There’s an eagerness in Parent Perspective to uncover a student’s potential and a tendency to presume competence that many teachers share. But the price is often a denial of the student’s current ability, or worse, an entire part of the student’s lived disabled reality, in the name of progress.

 I have encountered adults who were never informed of their disabilities, because their parents had declined to reveal it to them, effectively cutting off avenues for self-advocacy and community by not giving their children a realistic view of what challenges may lay ahead. I’ve seen parents insist on therapies that no one in a district was trained to provide, push for inclusion during subjects that give no real benefit to the student due to the prevailing belief that inclusion will improve social skills; I’ve seen parents of young echolalic students state their children are doing math beyond grade level because the children can recite high numbers, and demand the student be placed in general education.

Many times, schools will cave in and provide some these trappings of education (I like to call this "education theater") to make the parents happy. Sometimes they do it to avoid advocates. It’s almost never done because anyone else at the table feels like it’s in the best interest of the student.

Teachers face a delicate balance between setting high expectations and documenting attainable goals based on what they can prove a student is able to do, right now, today. This is why IEPs have to be written the way they are, why goals follow a specific format. Schools and teachers face pressure to demonstrate “student growth” while facing an uphill battle to match good resources to what they know and can prove a student will need within a few grade levels. We struggle to find ways of meeting students where they are in age-appropriate ways so we can help them get to where they’re going.

This means not giving a student operating on a pre K level, 4th and 5th-grade math problems that are likely to frustrate rather than empower. It means not dropping off an autistic 3rd grader with sensory integration problems in the middle of a chaotic class period with an overwhelmed gen ed teacher in the name of “inclusion”. It means forcing ourselves, and everyone else, to stick to the facts of what we know a disabled student can and can’t do, right now, and what we can do in the near future to address it.

Denial is a death sentence to this process, not just because it makes the IEP meetings harder, but because of what it implies about how educators now must treat a student—as an extension of the parent’s will, a poor facsimile of a child the parent wants us to bring into existence. It sets a deadline for how much longer the student’s disabilities are supposed to impact him before it becomes unacceptable and we are in some way held responsible. It forces us to look at this autonomous human being, who is in the process of growing and changing, in terms of what parents want her to be, even when the dream is nowhere near reality.

This doesn’t even address what the impact Parent Perspective has on the student. Ignoring who the person is beyond what the person is to you, right now has a lasting impact on how we treat the person. Refusal to see not only a person’s disability, but how that disability’s impact on a person may change over time can mean we dwell on the highlights, rather than listen to what the person is communicating about his own body and mind. It downplays areas where a student needs support by suggesting that the only deficiency is in how we go about uncovering the real person who is unaffected and unlimited by their life circumstances, somewhere beneath the exterior. It simultaneously accuses the disabled person of being an impostor and blames others for her continued existence as a fraud, or the thief of some better, able-bodied, non-neurodiverse person’s life.

This doesn’t dismiss the need to set high standards. A person is not just a disability, shouldn’t be limited or defined solely by it, any more than by race, religion, gender, etc. Parents, in general, are invaluable for giving insight into a student’s strengths, needs, and potential future settings. They can raise the bar for special education programs everywhere. But taken to the extreme, Parent Perspective can morph into a disability erasure that poisons realistic, constructive discussion, reduces children into sock-puppets of Parent resentment, and places the student in an ableist cage of the parent’s making.

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