The Softness of Island Living
For special needs parents, the circumstances of our children’s lives are very rarely black and white. And really, woe to us when they are. Most of the time, the issues are complicated. The information we receive from doctors and therapists and teachers is usually of the “I’ve got some good news and some bad news” variety. Despite this very grey area existence we find ourselves in, or perhaps even because of it, when we advocate for our kids, we find ourselves looking for very straightforward situations, ones in which the good things and the bad things are clearly identifiable. We want it to be that simple.
Sometimes, it simply isn’t.
We made a discovery about Schuyler’s school situation last week that gave us pause. I think what caught us off guard was the manner in which we discovered it. On Schuyler’s last day of classes before Thanksgiving break (she gets the whole week off; kids these days don’t know how sweet their gig really is), we decided to treat her to a nice lunch from the place of her choice. When we contacted the school to find out where we should meet her, we were told that Schuyler doesn’t eat lunch with her neurotypical classmates. She sits in one of her special education classrooms with one of her teachers. And really, we only found out my accident.
This set off all kinds of warning bells for us. Schuyler had social anxiety issues before, in middle school, which her special ed team addressed by letting her eat in their room when she felt overwhelmed and by having us come in on Fridays to eat lunch with her. Now, suddenly it felt like she was back in that place.
What we discovered when we showed up for lunch was that again, as in so many aspects of her world, things aren’t that simple.
Yes, Schuyler eats lunch in her special ed classroom. And perhaps more troubling, when she walked us from the front office to the classroom, and later when she walked us back, in hallways full of mainstream students sitting everywhere (it seriously looked like a tornado drill), she didn’t interact with anyone. Not so much as a “hello” or a high five. Schuyler walked through crowds of neurotypical kids invisibly, like a phantom.
But our fears of her sitting sadly in a lonely classroom by herself were unfounded. Put simply, Schuyler’s lunch hour is a swirl of socialization and friendly chaos. It’s not just Schuyler. Her special education classmates come and go from the room, and they all interact like friends. They talk and laugh and give each other shit. In some very real ways, they take care of each other. They exist on an island of their own, and it seems like a safe and nurturing island at that.
I’m left with deeply mixed emotions. When Schuyler was in middle school, she worked hard to function in what turned out to be a fairly inclusive environment. (I wish I’d done a better job of seeing that at the time.) It wasn’t always easy for her. Really, it was rarely easy. She was usually a little self-conscious, occasionally paranoid, and had to work hard, not just to keep up academically, but also simply to find her fit in a neurotypical world. Her mainstream classes challenged her, and her social interactions even more so.
Now she doesn’t deal with that, not really. She still has to navigate her band community, and she’s in an art class about which we honestly hear little. But all her academics now take place in this accommodated environment, and it’s not just a matter of the materials being easier for her. The social environment is different. It doesn’t challenge her or stress her out. It’s protected.
That’s a good thing, and it’s a troubling thing. When Schuyler was in a largely inclusive environment, the ground shifted under her feet a lot. It was a difficult time for her, and it sometimes made me question my own total commitment to the inclusive classroom model.
Things are different now. I wouldn’t describe her current academic setting as inclusive, despite our very clearly expressed desire for such an environment for her. Significantly, I feel pretty confident that if you asked Schuyler for her preference, she would pick her present situation. She’s more comfortable on the Island of Misfit Toys. You can keep your Lord of the Flies island, thank you very much.
I’m going to be honest. I’m not sure how to feel about this. I’m truly glad that she has a place to feel safe, where she’s surrounded by her special needs peers and isn’t stressing about fitting in, or worse, with passing for neurotypical. Seeing them all together, I feel a kind of relaxation of some of my anxieties. She’s alright. She’s happy. She’s surrounded by people with whom she identifies and can be herself. Believe me when I say that is not a small thing at all.
And yet.
The world that awaits her in a few short years is not going to shelter her. She likely won’t live in a community of disabled young adults. She has absolutely no desire to do so, as she makes extremely clear, and it’s still unknown if she would qualify for such a community as it is. Schuyler is stubbornly committed to making her way in the larger world, and her current school environment might not be preparing her to do so. She’ll be leaving her island, and the world in which she is so determined to live and work in independently won’t treat her gently. Hiding from it now might not be doing her any favors in the long run.
So it’s hard to know how to feel about all this. I confess, it was very encouraging to see her in a setting with her special needs friends, and there may very well be opportunities for something like that to continue in some limited form after she leaves school. I certainly loved experiencing how relaxed and happy she was. It did my old heart a lot of good to see it.
But there’s something waiting in the mists ahead, and I can’t help wondering if she’ll be ready for it at this rate. My intuition tells me that it has claws. And it is coldly patient.
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About The Author
Rob
Robert Rummel-Hudson is the author of "Schuyler’s Monster: A Father’s Journey with His Wordless Daughter", which tells the story of raising a little girl with a disability and learning to become the father she needs. It was published in February 2008 by St. Martin’s Press.
Many neurotypical kids walk through those halls feeling the same invisibility that Schuyler feels….only they don’t have the safe haven of the special ed classroom full of peers with whom they can identify. I understand your concerns as a fellow parent, but it seems to me like Schuyler might be faring better than you realize, maybe even better than many of the neruotypical at that very same school. Anytime a teen finds a sense of belonging and that belonging does not lead to drugs and destruction….that is something to celebrate. Yes, the future is very uncertain for special needs kids, but don’t let those fears overshadow the good things that are happening now. **BTW, there are many disabled adults going about their daily business outside of the disabled community and they do find eachother. Just like the neurotypical misfits that never fit in as children, who grow up to be adults that don’t fit in, also find their tribe in some way, big or small, sooner or later!
My bet is that whatever is up ahead Schuyler won’t be ready for, but that’s because most of the time we can’t really be prepared for what’s coming. Perhaps in this more protected space Schuyler is tanking up on feeling relaxed, supported, valued, and welcomed in ways that will give her something to draw on when the big bad world pounces. She’s spent a good chunk of time in the trenches (middle school–ack!) and perhaps needs not to be operating on a constant energy drain. Plants, animals, and people all grow better in situations where they are not constantly stressed, although they need stresses periodically to move forward and to bloom.
Even in the big bad world, we have to find our safe places and build our own communities that will understand and support us. This too is a lesson. Schuyler will have many challenges to face in the wider world, but it’s useful to know that you can have these islands of safety in between. Whether it’s an internet community, or a support group of other disabled young adults, or whatever way she connects to other people with disabilities, she will need to draw on these resources in the future. Also, she needs to build up her social skills with *somebody*, and interacting *only* with neurotypical kids in a challenging environment may mean her social skills degrade and she becomes too intimidated to interact with anyone. Let her enjoy the island of misfit toys. It may give her the confidence she needs to be more relaxed with the other kids.
One small point of clarification: I don’t believe I’ve ever advocated for her to interact only with neurotypical kids in a challenging environment. Even in this piece, I think I was pretty clear about how pleased I am to know that she’s got a safe zone that she can be a part of. I’m simply concerned that ultimately, she may not be properly prepared for the world after she gets out of school. It’s about striking a balance.
When has high school prepared us for *anything* in the real world? Did high school prepare anyone socially? Kudos to your daughter for finding her tribe. Finding your tribe is how you survive. She has learned something valuable.
I agree completely. I simply hope that she’ll be ready for what comes next, too
Would Schuyler enjoy or feel supported by a group of NT kids who understood her brain issues and knew that by hanging out and socializing with her, they were actively helping her brain learn and grow? (Obviously it works the other way, too–i.e., the NT kids learning and growing–but that’s easiest to see in retrospect.) I remember as an awkward teenager, in many ways too young for the kids around me, being afraid of their “bad influence” and rejecting their friendly and supportive gestures. Now I wish I’d had more perspective, because I think peer interactions can prepare you for the outside world in ways that parents and teachers really can’t. You need all of the above to make it work.
So, I’m an educator and I was thinking about your post. The mainstreaming versus not situation is complex. In terms of human development, the thought struck me that adults can learn many things quickly, and flexibly. For example, it is infinitely faster and safer to teach an adult how to cook a turkey than an eight year old.
However, some kinds of permanent learning happen faster during early development, during childhood and adolescence. Self-acceptance, confidence, optimism, an innate sense of belonging, are things I learned as a teenager.
I think that coping mechanisms are going to be somewhat situational and can be learned any time, maybe with less hassle in adulthood, but the lifelong benefits of feeling secure as a kid can only happen once. So having safe places now means knowing safe places exist, and fitting in now means knowing one can fit in later.
I do not think there is much value in the inclusive model for some kids. Of course, it works for some, but for my daughter, the “least restrictive environment” was the worst thing for her. My daughter is only 10, so obviously worlds away (yet way too close for my comfort!) from anything Schuyler is experiencing, but I fought tooth and nail to REMOVE her from a more inclusive setting. I wanted nothing more for her than for her to be on that island of misfit toys, a protective bubble of sorts (a private school for special needs kids.) My daughter gained nothing socially from being mixed in with her neurotypical peers, and I’m talking about Kindergarten-2nd grade here. After kindergarten, the only kids she had any real, meaningful interactions with were the ones in her special needs classroom, but in our small town that was only a small handful of kids. The parts of the day when she was being included in the mainstream classes in the name of “least restrictive environment” she floundered. She was stressed, miserable and really, on a good day, was nothing more than a class “pet.” I fought for 6 months to remove her from the public school and get her into the private one, and when the district started communicating through only certified mail, I pulled her out and have home schooled her since. In the year and a half since I have had her home and out of that environment, she has made such gains in ALL areas, not the least of which is socially. She has friends of all ages, from age 4 or 5 through her own age, some neurotypical, some not. Kids who genuinely like her and include her because they want to. The difference is that this is a bubble that I have created for her, and I don’t see any issue with that right now. She’s happier now and more self confident, and in turn is able to focus more on school work, and positive interactions with kids of all ages (and adults too.) She still faces challenges with her peers, but there are always plenty of engaged and attentive adults to oversee interactions and step in if needed. I’m not saying all special needs kids should be homeschooled, and I actually think it’s disgraceful that I didn’t have any other option, but faced with the choice of homeschooling, or the inclusive (but not) public school environment being offered to her by the district, homeschool wins by a landslide.
Childhood, and especially middle-high school is such a difficult time for kids, even ones who don’t face extra challenges. Why not let them have a safe place in which to develop and grow without having to deal with the pressures of trying to fit into a neurotypical world? The neurotypical high school setting is a pretty crappy place for ANY kid. Of course they will have to learn to navigate the real, and sometimes cruel, world when they leave school, but I think they will be better prepared for it if they have a strong sense of self confidence and belonging, even if that’s belonging to a special needs group. I think there is a very real danger of those things being stripped from our kids in an inclusive, public school environment, where teachers ignore or miss SO many incidents between students, sometimes by sheer necessity due to time constraints, and sometimes on purpose because they can’t be bothered to deal with it. My kids who have been through high school have described some pretty awful things being said and done to the special needs kids in their cafeteria, even with aides looking on. I’m not saying that’s happened or will happen to Schuyler, but I’m just saying that having a safe bubble to navigate high school in is a HUGE positive for her. Again, my daughter was only in that environment up to 2nd grade, but I was a wreck when she had lunch in the big cafeteria without her aide (and so was she-in the last 6 months of school, even with her aide, she stopped eating and lost weight)
Honestly, I wish one of my neurotypical kids had a safe and caring environment, like the one you described for Schuyler’s lunch, during her years in middle and high school. It would have eliminated many problems that she faced then, and still suffers the effects of even now, at 21 years old.
Anyway, just trying to give you a different perspective to look at this from. It sounds like Schuyler has the closest thing to an ideal situation and I think you can safely relish in that without worry that she will be less prepared for what’s to come. I really do think there is more value in her being happy and comfortable, having lunch in a peer group where she feels wanted and loved for who she is, than there is in her learning to navigate the sometimes terrifying place that a typical high school cafeteria can be. 🙂 For what it’s worth, I can’t remember any situation that has come up in my adult life where I thought “Gee, I’m so glad I had that awful time in the high school cafeteria to prepare me for THIS!”