When Sarah Kate was very young, I fretted a lot about her future, and one of the aspects I worried about most was school – middle school, in particular. I didn’t know anyone who had a child with cerebral palsy in middle school. I worried that Sarah Kate wouldn’t be accepted and that she would be bullied or mistreated. With middle school now in the rearview mirror, I think it’s important for me to share our experience, both for parents who will be facing it a few years down the road and for others who may be interested in learning more about the world of disability.
Truth: Middle school is a mine field for everyone.
Most of us recall the challenges of navigating middle school, that angst-filled time of life when hormones begin to rage and we are trying to figure out who we are as individuals while battling (or succumbing to) the pressure to conform. Middle schoolers want to be unique, but they don’t want to be different – an impossible contradiction.
Sarah Kate wasn’t immune; she BOTH believed that her cerebral palsy made her unique and special AND wanted it to go away so she could be like everyone else. We had a lot of conversations about why it’s better to be yourself than to be a carbon copy of everyone else. She has a lot of years of being different under her belt, which helped, but she still got tripped up by a number of pitfalls we didn’t see coming.
Pitfall #1: Helpers Who Weren’t Helpful
After years of helpful peers, things went awry when they all got to middle school. Some kids saw in Sarah Kate a way to be special that didn’t cost them anything, volunteering to be her helper, not out of compassion or a genuine desire to help, but because they wanted to get out of class and/or make a show of being benevolent. On the other end of the spectrum were kids who she thought she could depend on, but ditched her at the first distraction. Sarah Kate’s seventh grade 504 plan stressed her need for peers to assist with books and escort her in the hallways, but we requested a change before the first grading period had even ended because the peers ending up being more trouble than they were worth.
Pitfall #2: Friends Turned Bullies
Sarah Kate was never picked on because of her disability, but her disability indirectly led to an instance of bullying, and left her vulnerable when things went south. When Sarah Kate grew weary of one of the aforementioned “helpers” who used her to get out of participating in P.E. (and to get to leave early each day), she stood up to the student and refused to let her assist anymore. The student, who was significantly bigger and stronger than Sarah Kate, reacted poorly. At first, she simply refused to comply, then when she saw she wasn’t going to win the argument, she escalated the conflict. She knew Sarah Kate has a strong startle reflex and would come up behind her and intentionally startle her so that she would fall – in at least one instance, Sarah Kate hit her head hard against the cinder block wall of the school and had to see the nurse.
Because we’ve always taken the approach that Sarah Kate needs to learn to live in the world as it is, not as we wish it to be, we sat down and devised some strategies to deal with the bully. She fought her own battle and triumphed in the end, I’m pleased to say, but it was an eye-opening experience for us all (to clarify, I did notify the school about the situation, because I wanted them to be aware of what was happening and to keep an eye out, and they stepped up).
Pitfall #3: Changing Classes
Sarah Kate’s middle school was large – roughly 400 students per grade – with no lockers and only three minutes to move between classes. The kids had to carry everything with them all day long (except for band instruments, which could be stored in the band room). Navigating the hallways was a challenge because middle schoolers are, in the main, a self-absorbed lot. They are like magnets, always seeking someone to walk with, talk with, or sit next to in class. Walking alone is verboten in the middle school social structure, so it wasn’t unusual for groups of kids to completely miss seeing Sarah Kate and plow into her, knocking her off balance.
Both the physical load and the time constraints were a challenge for Sarah Kate, so her 504 plan allowed her to deviate a bit from the norm – she could take a shortcut through the cafeteria and use the elevator when she needed to go upstairs, and her teachers were required to allow her to leave a little early and/or arrive a little late to class without penalty. In an atmosphere that chaotic, these accommodations seemed like a good solution, and they were – for the “changing classes” problem. Which brings us to…
Pitfall #4: Constructed Isolation
The problem with all of those accommodations is that while they did make it easier (and safer) for her to change classes, they also isolated her from her peers. She cut through the cafeteria alone. She took the elevator alone. Most of the time she walked in the hallways alone (because she left class early, walked slow, and arrived late). She was the last to arrive not only in class, but also to break, and was typically either the very last or very first person to arrive at lunch. Most of the kids never slowed down enough to notice, or thought to save her a seat, or remembered to wait for her. It wasn’t that they didn’t like her – at that age, they mostly live in the moment, and in the moment they simply forgot about her.
One unfortunate side effect of being the last to arrive at lunch, or at break, or on the field trip bus, was that she often ended up stuck in whatever seat was left (and there was a good reason the seat was empty). The behavior of some of the kids she would end up sitting near shocked her (I’ll skip the details), but she had little choice in the matter unless she wanted to make a big stink, which isn’t her style.
For the first time, I began to understand how celebrities can be lonely. Sarah Kate was chosen for the Mardi Gras court, which conventional wisdom would suggest she was well liked and had tons of friends. Well liked? Yeah, probably. Tons of friends? Nope. Another mom told me one time that her daughter talked about how Sarah Kate had a lot more friends than she did. I told her that simply wasn’t true – a lot of people said hello to Sarah Kate, but that’s because everyone knew her, not because they were her friends. I can’t tell you how many times I’ve heard people (parents and kids) say, “Everybody LOVES Sarah Kate!” Maybe they were right, but she wasn’t feeling it from 8am-3pm each weekday.
Fortunately for Sarah Kate, she did have some good friends, and is (or was) a member of a few good “tribes” (theater, swim team, band…) She doesn’t struggle socially, so the constructed isolation of middle school was limited to the campus of the school itself, rather than bleeding over into other areas of her life. Not all kids are so lucky, though.
The Bottom Line (As I See It, Anyway)
When I mentioned to my mom that I was planning to write a post titled “The Truth About Middle School” she told me not to do it – Nathan will be coming up through the same school system, after all. She didn’t want me to publicly criticize the school when I will need their support in the future. I pressed on, however, because this post isn’t about how Mayberry Middle failed her. I don’t claim that our experience is universal, but I’m also not willing to point a scolding finger at our school. In fact, I’ll go a step further and assert that the school was very accommodating and responsive to our needs.
Could they have done more? Maybe. But even if the answer to that question was Probably or Definitely, the fact of the matter is that the things that bothered me were rooted in the culture of middle school itself, not in the administration. These pitfalls have the potential to exist at any middle school, and I don’t have the answers about how to avoid them.
Taking it a step further, middle school is, in its way, a microcosm of society. People with disabilities are all too often invisible, forgotten, taken advantage of, or exploited, because we are all too focused on ourselves. Procedures and protocols and laws may provide safer access to public spaces, protection against discrimination, and other much-needed benefits for those with disabilities, but they don’t make people actually care about others.
Something Else to Consider
In a few weeks, Sarah Kate will begin high school. Despite a good experience in virtual school, we’ve decided to enroll her in a private Catholic high school that opened in our area last fall. The new school has a lot to offer – college-preparatory academics, faith-based instruction, and a smaller size (a LOT smaller), all of which contributed to our decision. Sarah Kate is incredibly bright and also a devout Catholic, so the academics and faith aspects are important to her (and to us). One day I hope to get around to sharing how we came to this decision and the leap of faith that we took to get her there (Spoiler: we stepped out on faith and trusted God to work out the details. He did.)
From a disability standpoint, however, the smaller school is a big plus, and the more I’ve thought about it the more I’ve begun to believe that a smaller school – regardless of whether it’s public or private – is a superior option for a lot of kids, not just my own. I hope I’ve given you a lot to chew on in this post, but there’s one more thing I’d like to add: a quote from G.K. Chesterton about small communities that perfectly incapsulates the benefits of a small school, but has much larger ramifications for our society in an age where tribalism of thought is prevalent.
It is not fashionable to say much nowadays of the advantages of the small community. We are told that we must go in for large empires and large ideas. There is one advantage, however, in the small state, the city, or the village, which only the wilfully blind can overlook. The man who lives in a small community lives in a much larger world. He knows much more of the fierce varieties and uncompromising divergences of men. The reason is obvious. In a large community we can choose our companions. In a small community our companions are chosen for us. Thus in all extensive and highly civilized societies groups come into existence founded upon what is called sympathy, and shut out the real world more sharply than the gates of a monastery. There is nothing really narrow about the clan; the thing which is really narrow is the clique. The men of the clan live together because they all wear the same tartan or are all descended from the same sacred cow; but in their souls, by the divine luck of things, there will always be more colours than in any tartan. But the men of the clique live together because they have the same kind of soul, and their narrowness is a narrowness of spiritual coherence and contentment, like that which exists in hell. A big society exists in order to form cliques. A big society is a society for the promotion of narrowness. It is a machinery for the purpose of guarding the solitary and sensitive individual from all experience of the bitter and bracing human compromises. (G.K. Chesterton, Heretics, #14, 1905)