February 13, 2012

Alone

It began with a simple question at the grocery store last night. We were choosing all the pieces for Schuyler's lunch and were trying to change things up a little. We wanted to get her some new drinks but were unsure if she would be able to open the bottles. Schuyler's polymicrogyria has some big features and some small ones, and one of its less frightening but still annoying impairments involves her fine motor skills. We asked her if she thought she would be able to open the bottle. She said she thought so, but still seemed a little unsure.

"Well, if you have trouble, you can ask one of your lunch friends to help out, right?" I asked, remembering that one of her teachers had mentioned how she thought Schuyler ate lunch with some friends.

Schuyler sighed and simply said, "No."

"Why not?" I asked.

"Because I always eat lunch by myself."

And there it was.

We told her that we'd heard that she had friends that she ate with, but she shook her head. "I eat by myself every day," she said. "No one will eat lunch with me."

It was an emotional ambush, this conversation, and it took the wind right out of our sails. I don't know why we were surprised by this variation on a sadly familiar theme in Schuyler's complicated middle school life, but of course we were. It's happened before, that thing where someone told us a Maybe Thing ("I think she eats with a little group of friends..." or "She could go on to live independently one day...") and our desperate parent brains translated it into a Definite Thing. We can't stand to think of her being alone, so we allow ourselves to believe that of course she's not alone. I've written about how Schuyler's relationships at school are different, but it never occurred to me to imagine her sitting at the lunch table all by herself while the mass of chattering classmates swirled around her, past her, without her.

I didn't know how she would react to the offer (I could only think of how I would have responded to a similar proposal in my youth), but I asked her if she would like for Julie or myself to come to school and eat with her. She surprised me a little by saying yes immediately. As we continued our trip through the store, she asked me again a few times.

"Are you going to come eat lunch with me?"

Later, as we unloaded the groceries from the car, Schuyler looked at me and simply asked, "Why doesn't anyone want to be my friend?"

Because there were some pieces of my heart still intact from her earlier confession about her solitary lunches. They needed breaking, too.

I wish I could say that Schuyler's situation is unusual, but any time I've mentioned this on FaceBook or Twitter, I hear from other special needs parents and grown persons with disabilities, about how yes, their kids had no real friends, certainly no neurotypical ones, or how they themselves had grown up thusly. Some writers with disabilities told me that as adults, they still struggled to find friends, or had given up altogether.

A recent study by Dr. Anne Snowdon shocked exactly none of us when it revealed that more than half of the Canadian children with disabilities that she studied had either only one friend or no friends at all. Only one percent of the kids she studied spent an hour a day with a friend. By the time they turn ten, social pressures diminish most of whatever efforts neurotypical kids may be making to connect with their disabled classmates. The window closes, and rarely opens again.

My reaction to that study was the same as many of the parents I heard from. I was mildly surprised that the number of special needs children who DO have friends was as high as it was, frankly. But then, these are polite Canadian kids who haven't been taught their whole lives that their value and that of their friends and social groups is measured by how very very exceptional they are.

With all the loving adults whom she loves and who love her back so intensely, and with so many people on the Internet pulling for her, it's hard to imagine a kid like Schuyler having difficulty making age-appropriate friends. It's also unfair of me to blame her classmates, even though I guess I just did. These are twelve year-olds, they have so little experience with concepts like inclusion and compassion and intrinsic self-worth. In the Lord of the Flies world of middle school, they are all trying to keep up, and their world is one of communication, fast and fluid. They may simply lack the ability to slow down and connect with someone like Schuyler. I get that.

It's not easy for her, like it's not easy for most special needs kids. And while Schuyler seems happy enough, it is becoming clear that this matters to her more than she generally lets on. I feel like she's waiting on a solution from us. As she should.

We're exploring some mentoring programs that might be able to help, such as Best Buddies Texas. There aren't any middle school chapters in Texas at this point. Well, there ought to be. Maybe it's time there was one, and who better to lead that than Schuyler?

When Schuyler asked me why no one wants to be her friend last night, we brought in the groceries and sat on the couch. While she leaned against me, her head on my shoulder, I tried to explain the best I could that it can be hard for people to make friends with someone who is different like she is. It's not always that they don't want to, I said, but spmetimes they're just not sure how.

She seemed to understand why that might be, even before I said more. "They talk so fast," she said. 'I can't talk like they do."

I didn't have any great answers for Schuyler, and I didn't pretend like I did. I could only tell her that yeah, this is hard, but we'd think of something and we'd find a way to make things better. As has been the case many times before, she didn't seem disappointed by that sad, shitty answer. We could fight that particular monster another time. I think mostly she just needed to put it out there.

39 comments:

Niksmom said...

This breaks my heart in so very many ways. Not just for Schuyler, but for my own child and the children of so many of my friends.

Deanna - Teaspoon of Spice said...

You write so well what so I know I do w. my child with autism (make a maybe thing a definite thing) and then how our hearts get shattered again and again. I so wish Schuyler could have her all virtual friends with her at lunch that have gotten to known her and love her through your writing.

queenbee said...

Having one kid that's aware of his disability and another that's oblivious, I feel your pain with the friendship stuff. When the kid notices friendship is acquaintance-only (and yep this starts in middle school) it hurts! My kid is 20 and still craves real friendships. Sometimes he is satisfied sitting near and eavesdropping, but I think we are both fooling ourselves...

Jodie M. Cordell said...

Seriously, school is a scary place - for the kids, but also for the parents of kids who are "normal." My little guy has ADHD and it's becoming apparent that he is starting to have similar troubles already - in first grade! My heart breaks for Schuyler and I hope this doesn't leave a bad taste in her mouth for future ventures. I want to say "it will get better." But I don't really know that, do I? It's really just a hope, a wish...I hope I'm right.

Jodie M. Cordell said...

Seriously, school is a scary place - for the kids, but also for the parents of kids who are "normal." My little guy has ADHD and it's becoming apparent that he is starting to have similar troubles already - in first grade! My heart breaks for Schuyler and I hope this doesn't leave a bad taste in her mouth for future ventures. I want to say "it will get better." But I don't really know that, do I? It's really just a hope, a wish...I hope I'm right.

Unknown said...

Not on the specific subject matter, but just an observation that this:

"Later, as we unloaded the groceries from the car, Schuyler looked at me and simply asked, 'Why doesn't anyone want to be my friend?'

Because there were some pieces of my heart still intact from her earlier confession about her solitary lunches. They needed breaking, too."


was a breathtaking line.

Because I've been around you for a hundred years, I forget sometimes what a talented writer you are. (I know that sounds super-duh, but it's one of those things I file away and take for granted.) And then you turn a phrase that just flows right out and punches everyone in the face with its excellence.

(can't figure out how to put my name on this comment, but it's tracy)

C said...

This is my fear with my daughter. She is only 5 and it's starting already. My heart breaks a million times to picture her eating lunch alone. Like Schuyler, and every other kid out there, she just wants to play and have fun with the other kids her age. And when they run away-well, I think every parent dies a little inside.

Ethel Mertz said...

Reading this story again makes my heart break all over again.

Is there some way to make a presentation about Schuyler's monster to the whole school, or to the Science class or something?

Ms. Chris said...

My 8 year old would love to be her friend (so uncool when you are her age!) lol. Sending extra hugs for Schuyler! There is an old tale that basically says we pick our parents before we are born and luck has nothing to do with it, and Schuyler's story has, more than once, made me think there is more truth to that than we could ever prove.

Rosanne said...

Middle school sucks. I'm just saying.

She is in band, yes? Sometimes band kids eat together elsewhere, perhaps the band room. Investigate. Perhaps the band director can ask a couple of great kids to take Schuyler under their wing for lunch and things like that.

Or, there is the library. Over three decades as a school librarian, I knew many many kids who ate quickly in a stairway or something -- yes, sad-- and spent the rest of their lunch period chatting with me in the library, or with the other similar kids I would be able to connect them with.

Schuyler is most likely the only one with her particular monster, but I guarantee you that she is not the only kid who eats alone, and the others who do don't have the social skills to find her either.

Please don't go eat with her in the cafeteria. It will not help her. If you must, take her out, or find another place to eat with her. Best plan: talk to her counselor, teachers, or the band director and see if they can hook her up with someone who maybe needs her, too.

Rachel said...

"They talk so fast," she said. 'I can't talk like they do."

This. This, this, this. I'm an adult with autism, and I feel exactly as Schuyler does. Unlike Schuyler, I can speak, but that doesn't mean I can keep up. I have auditory delays and difficulties with verbal speech that are the bane of my social existence, and so very, very isolating. At 53, it breaks my heart to realize how few people will slow down to accommodate the way I process sound and words.

A recent poster on my Facebook page quoted an author who distinguishes between "fitting in" and "belonging." Fitting in is about shaping ourselves to fit the expectations of the group; belonging is about being accepted as we are. Disabled people, by definition, cannot "shape" ourselves to fit in when the expectation of the group is to be able-bodied, so we must depend on groups to accept us as we are. In a society that is relentless in its prejudices against disabled people as burdens that interfere with the otherwise "normal" lives of others, that's a tall order. I have never found a sense of belonging among able-bodied people, despite my many attempts to do so. I've had my heart broken so many times on that score I've lost count. I've only found it among other disabled people who are similarly marginalized.

We've got a long way to go before all this changes. The problems in society go very, very deep.

Leah said...

I have to agree with the librarian-I understand the temptation to have lunch with her, but it won't help-may make things worse. Along the lines of mentoring, many high schools have community service requirements these days, and wouldn't a social facilitor for a rocking kid like Schuyler make for a great independent study? Approach your HS, ask for a student (or students) who is artsy, interested in learning sign, and most important-socially adept-to join Schuyler for lunch and/or any study halls to help her bridge this issue of developing friendships. It'll happen more naturally than your dad joining you for lunch at school-way not cool, no matter how cool you may be. Another idea, if Schuyler had a service dog (?seizure alerting) it could serve as a conversation starter, though of course that's not exactly the intent, so probably not the best idea. Anyway, good luck-keep up the good fight. L

Becca said...

I have a neurotypical son who is and it breaks my heart when he gets his feelings hurt. i can't even imagine as a parent how you must feel at these times. i will hug my kid close tonight and then talk to him about making sure to slow down for non-neurotypical kids he knows.

lilmikeymoodswng said...

I almost wish I was 20 years younger so I could invite Schuyler to my lunch table. We were the outcasts, though I guess we all counted as "neurotypical", and she'd have been welcome if she wasn't embarrassed to hang out with us nerds. She certainly has more style than any of us did!

Maybe she'll find her way as band progresses, since there does seem to be some solidarity with band kids.

Also, if Schuyler needs a pick me up sometime and has any interest in horses, I keep a couple of horses in Plano and you're more than welcome to come out and meet them. The older one would be safe to have her sit on his back if she was so inclined.

Elizabeth said...

Louise Kinross at Bloom has an article on this exact subject on Huffington Post this morning -- hopefully there's a bit of momentum because I think what underlies all of it is a cultural paradigm about disability in general.

This whole issue of friendship makes my heart ache -- and it's ached for nearly seventeen years for my daughter Sophie.

GB's Mom said...

GB is only(almost) nine, but she does have some same age appropriate NT friends... children of people I am friends with. Over time, GB differentness as been a topic of discussion and the adults still occasionally have to step in and smooth the past, but it is the closest I have been able to get to "normal".

Margaret said...

This makes me feel so sad. I read your blog often, Rob, but rarely comment. However- I think your mention of the Best Buddies program is a great one. I am a middle school teacher (social studies, so I have mostly neurotypical kids) and I know that there really are a lot of caring middle schoolers out there. But many of them have no idea how to approach someone with a disability, what to say, how to react to confusing or age-inappropriate behavior, etc. They really need a teacher or other adult to model for them, encourage them in their efforts, and host a space for them to interact. Maybe someone at Schuyler's school would be interesting in starting up a Best Buddies group.

Jenny said...
This comment has been removed by the author.
Jenny said...

This just breaks my heart. I'm pretty sure the only person that eats lunch with Max is his aide.

Jessamyn said...

I have no advice - just wanted to put something down to mark that I was here, reading, weepy & broken-hearted for you guys, too. I'm so sorry it has to be so hard for Schuyler; that sweet, amazing kid doesn't deserve any of this (I know that's kind of meaningless, since of course neurotypical/atypical-ness has nothing to do with what's deserved).

Sheryl said...

Oh, you guys...I am in tears reading this. It just hits so close to home. I was a neurotypical, albeit dorky, kid. Smart, buck teeth, first one to get glasses, socially awkward, and a total social outcast.

In grade school we sat with our class in the lunch room, but I was always, always alone at recess, or hanging out with the teacher that had playground duty. We lived 2 blocks from school and I ended up going home for lunch every day, from 2nd through 6th grade.

In 6th grade, I made the "huge social error" of befriending a girl with some physical disabilities, who was chair-bound. She was new, we had reading group together or something, and she was nice, and I guess I was too, so we became friends.

Seriously, I got harrassed by the "mean (popular) girls" to no end for that friendship, and eventually was beaten up by four of them one day while I was dressing down for PE. I'd been picked on to some extent before that, and certainly socially excluded, but that friendship somehow, inexplicably, upped the ante.

I went on strike and refused to go back to that school. Flatly refused. After a month, the district allowed me to enroll in a different school. Things were tons better there, but the scars still exist.

All of that to say...I don't know what. My heart breaks for y'all. Middle school sucks. It's brutal. I know there are other kids there that would love to be Schuyler's friend, but don't know how, or maybe have their own reasons for not being able to reach out. Talk to the school--the counselor, the band teacher, her main teacher, the librarian. There is a place for her, it's just a matter of finding it. By all accounts, she's a cool kid. There are other cool kids at that school; it's just a matter of them all finding each other.

Sherry said...

I'm a bit surprised that Schuyler doesn't have some solid friends at this point. What's with these kids?! Jenna, my kindergarten type 1 D kiddo, is in a kinder class with a boy with speech apraxia (we'll call him R). He isn't entirely non-verbal but he uses an ipad and some signing to communicate. His speech is very difficult to understand, especially if you don't know him. Jenna's support worker also works with R, so it is likely that Jenna and R will be together for at least the next couple of years so they can share a support worker. Anyway, Jenna and R are thick as thieves. Jenna adores him. And she understands his unique verbalizations better than anyone in the class. If the teacher or another student are having difficulty understanding R, Jenna often clarifies on his behalf. I would guess that Jenna and R will be good friends for a long time to come. My point is, how has Schuyler gone through elementary and now middle school without developing any bonds? I am not implying any criticism of Schuyler, more questioning how so many kids can be so superficial and capable of alienating a classmate due to some differences.

I'm having trouble not judging the heck out of Schuyler's classmates. How can no one have her back after sharing an educational journey with her for so long? How is this possible?

Also, I wanted to touch on what you said about twelve year old kids having so little experience with concepts like inclusion and compassion. This is something that is heavily reinforced in Jenna's kindergarten class on a daily basis. There is also a program called "Roots of Empathy", http://www.rootsofempathy.org/ , that has been implemented in her class this year. It is a fabulous program that originated in Toronto and has spread globally. It is meant to teach these very concepts at an early age. Sounds like it could do some good in your neck of the woods.

Becky said...

When I was in high school, someone I didn't even know came and sat by me in the lunchroom because I "looked lonely." It was extremely embarrassing at the time (I avoided social situations as much as Schuyler embraces them) but at least they cared.

I'm a grown woman with no verbal disabilities and it's STILL hard for me to get a word in edgewise when people are talking. I feel for you all.

Calliope said...

Leaving aside my emotional reaction to your piece (really can't address that today, which is our son's 13th birthday), I just wanted to write a quick note and say Best Buddies could be a good solution in the long run. Ted's middle school had a club last year, and it did help him find more folks to say Hi to in the halls and maybe they would have even eaten lunch with him (if he didn't have a feeding tube and opted to skip the cafeteria altogether). Also agree with the library suggestion: the middle school librarian last year provided a place for kids to eat who needed a quieter environment (in the library other kids would be able to hear Schuyler's speech or her talker). Or, could the guidance counselor at least once a week provide a sort of "social group" for Schuyler and some peers identified as sympathetic. I know all this is programmed and not what Schuyler wants (a typical, spontaneous middle school social life), but it could help ease her loneliness.

Loves Pickles said...

Jesus, Rob. I was crushed the second I read the title, knowing exactly where this post was going. But man....the heartbreak. I don't know your awesome kid but through your photos and words, and how many times I've wanted to give her a hug, or buy you and Julie a beer. Now more than ever. Socialization sucks balls.

Rymer said...

At my school, every grade eats at different times (I'm in 7th grade) but I would eat lunch with Schuyler, even if I got in trouble for not eating with my own grade. My mom linked me because I couldn't believe it when she said Schuyler eats alone and I wanted to tell her I wish I could eat with her. Thanks

amylia said...

I kept the tears in until Rymer's comment. Schuyler, Rymer, you give us all hope at a time we need it most of all. Thank you for being you!

watchwhathappens said...

Honestly, I don't understand why this isn't on the teachers/administration. If kids can't find it in themselves to get to know her socially, how can the teachers see her eating alone every day and go, "eh, that's how it goes. oh well"? Kids have to be forced to be socialized, especially in situations that don't come easily, and adults have to guide them in doing so. That they're not seems like the problem to me.

Laura D said...

Reading your previous post about the advantages of technology made me wonder, why couldn't Schulyer connect with virtual friends at lunch time? Could she use FaceTime? Text? Get on-line with Pinkessa? Could she use her technology to bring her community to her? School rules be damned. If she has to deal with limits of having to rely on technology, surely she could enjoy the perks too. Just thoughts...

kimmy said...

Damn, Rob, break my heart why don't you?

Kim in AK

Matthew said...

My son will be 5 in a month and has severe expressive and receptive language problems and this is the future that I fear for him. About a week ago we were at the park and he kept trying to engage NT kids in play but many of them ignored him or in one case went running to his daddy cuz he was scared. Deven can be a little much when he is excited and I can understand why the other boy was a little scared but it still tears at me. Will he have friends, will he ever carry on a conversation, I know the other kids talk to fast for him, it remains to be seen if he will speed up or not as the nature of his monster is not diagnosed yet and may never be. we are going to be getting him an IPad soon maybe his generation will be so used to the tech that they will be able to look past is processing delays. only time will tell.

Jan said...

I just want to say how much this hits home for me. My 15 year old has similar issues, and it has really gotten worse as she has gotten older. The last 2 years (7th & 8th)were better because she had one "best friend" with whom she ate every day, and that friend was somewhat more social and so drew a few other folks in. Now they go to different high schools, that friend has "moved on" socially, and my girl is alone. She does eat with kids most days, be she has no actual friends. Her social skills and pragmatic language are weak, she's immature, and she's a slow language processor, so it's hard to keep up with the conversation or think of things to add. Kids like her to begin with, but then they lose patience with how weird she is. (I love her, but I know she's weird!) It breaks my heart, and we're beginning to wonder when/if it will ever get better for her.

She has always gotten along well with adults; we're kind of hoping that once she's closer to adulthood herself, she'll fit in better, but who knows? We just keep hoping, and trying to support and love her at home.

Kerri said...

I've been reading your blog for several months, but never commented. First of all, Schuyler, you're awesome. Hang in there. I hope it will get better. And second, for the last three years of high school, I never once ate in the cafeteria. Like some of the other comments said, I would think maybe there's somewhere else to go (library, band room) that would provide some good interaction with other kids. I'm just your average NT girl, albeit shy and kind of awkward, and I remember hating the cafeteria in middle school and high school, and eating alone many times. I hope you guys find something good that works for Schuyler.

Tess said...

Oh so much to say on this one...I will keep it short. I once burst into tears in an IEP meeting when my son's teaching assistant casually told me that my son had bravely asked a group of kids to join him in a board game and they all said no... I was crushed. All his current friends are kids a lot like him...his "typical" friends started dropping by the wayside around grade 2 or 3.

Tess said...

I once burst into tears in my son's grade 4 IEP meeting when I was casually informed that he had bravely asked a group of kids to play a boardgame with him and they all said "no". I still have a hard time with that memory...and there are so many others...he's 15 now and has lots of friends, but they are all "kids like him"...the typical friends started disappearing around grade 2/3...

Sequins said...

I found your blog a couple of months ago and settled in for what I expected would be a very long lurker, comment-free reading habit. This post pulled me out of my silence, though, with its gut-wrenching honesty.

I would chime in with my suggestions (in a very respectful-of-you-and-Schuyler's-mom's-rights-as-parents-way) but other have already thought of them, so I'm just chiming in with what i agree with as good suggestions (which I"m only doing because you two seemed out of ideas, and a community can help with that? hopefully?)

1) The library--maybe even structured "game time" programs for lunch. I know a few people said it might not be a great idea for you to join her, but honestly, you know what's best, and sometimes it is super cool to have a parent sit in every now and then. My friends thought my mom was the coolest, and when she joined us on field trips I also ended up with a couple extra friends (despite being paralyzingly shy and socially awkward).

2) Tapping into the virtual world of support that Schuyler has--I know most of your readers aren't middle school kids, but there are safe(ish) online communities that Schuyler could hook up with. It doesn't really solve the lunchtime loneliness problem, but maybe knowing she has a community that she can access will give her the strength to continue to endure school awkwardness.

3) Man you are a good parent! (You both are!) As rough as all of this is, I think both of your support and love for her is going to make a much stronger impression in the long run. It isn't easy, and it isn't fair, but at least she knows her parents know how cool she is. And, honestly, she's going to have her parents in her life way longer than she's going to have anyone she knows from middle school.

(See? Not a single original thought!)

Lucy said...

Ok, now I'm angry. I'm a middle school teacher (with 25 years of experience) and there is absolutely no reason why a child should eat by herself in the lunchroom. Where is her special ed. teacher? Why isn't a teacher intervening? There are many ways a teacher could make this better. Our special ed. teacher has a lunch bunch in his room for kids who don't fit into the lunchroom for lots of different reasons. Where are the counselors? There must be a few students who can understand the value of kindness and acceptance.With the help of an adult in the school, these students I'm sure would include Schuyler. But a teacher/counselor must be the one to be the conduit - middle schoolers are so self-absorbed they often don't empathize as much as they should - it's the job of the school to teach social skills and empathy and acceptance of differences.
Sorry this is so long. I wish Schuyler were in my school, which ironically, is located right outside of New Haven.

mooserbeans said...

Oh man this breaks my heart. We all know that middle school sucks and from listening to my daughter's account it sucks even more than it did when we were kids. I think that you are on the right track looking into a group for her like Best Buddies. Do you have any Very Special Arts programs near you? With her quirky sensiblilites and musical interests that might also be a fit.

Speaking as a teacher, it is up to the adults in her school to help her and other kids interact. Middle school teachers often seem to have this ridiculous notion that these kids are mini adults who will make the right choices. No, they are children who really have no idea what they are doing. Hence the reason for teachers.

On an off note, this piece was beautifully written. You have such a voice and a way of cutting right to a person's heart. Please don't ever stop writing.

wordspursued said...

I wish wish wish there were more programs for the neurotypical kids who want to be friends with kids like Schuyler, though.

I was one of those kids, and I "made up" for it by volunteering at a therapeutic riding center in high school, by volunteering with Special Olympics, by working as a home and community supports provider and at an autism center throughout college, by pursuing a master's in speech pathology and a doctoral degree in early intervention.

But I wish what someone had told me was that, it's okay to be [her] friend, but only as much as you want. You can eat lunch with her once a week; you don't have to eat lunch with her every day. You can smile and say hi and hang out with her waiting for the bus, but you don't have to invite her to your birthday party. I know it's unfair, and I know you know it's unfair, but the little things count, and the little things are good enough.

Because I found that the kids who sat alone cared about connecting, and that when you were the only one who tried to connect with them, you became their lifeline. You became such an intrinsic part of their identity - their friend - that it was scary, at eight or at twelve or at sixteen. It's scary in adulthood - I have a girl who still calls me most Sundays, even though it's been years since I was her support worker. I can't imagine what goes on in her life those weeks when I don't answer the call. There are caring kids out there. They might need someone to suggest it or initiate it. They might need someone to stand up for them and make sure they're not socially isolated for doing it. More than anything, they might need someone to tell them it's okay to make baby steps.