June 24, 2011

The cheese stands alone.

I've described how Schuyler tries so hard and almost succeeds in being just like everyone else, but within that "almost" lies an unhappy and oft-repeated story. That's never more true than in her relationships with neurotypical kids.

I'm going to just say it. I feel like this is probably my fault, mostly. There was a time, back when she was much younger, that Schuyler lived in a very internal world. In the months before and a year or two after her diagnosis, we were at a loss as to why she was so very very different, so very Schuyler. It was unclear just how much of her remoteness and ethereal quality was due to her lack of communication, and how much was from something more. More serious, more difficult to identify, more developmental in nature.

When Schuyler was old enough for school, and especially after we began looking for news ways for her to communicate, we made a choice, and it probably wasn't even a conscious one, either. We didn't worry about, or even consider, whether she would ultimately be happier simply growing up to be who she was, without forcing her into the world. We believed, as we continue to believe, that Schuyler had the ability to learn and to adapt and to one day live independently in the neurotypical world. Whether or not that was actually the most desirable goal never occurred to us.

Now, though, I'm not so sure. Did we push Schuyler to work hard, and to wish hard, for something that was ultimately going to be out of her reach, even if it is just out of her reach? I don't know. I still feel like anything less than a total commitment to the fight for inclusion, both academic and social, would be cheating Schuyler, but I'm no longer certain. I once thought that Schuyler's transition from her beautiful but mostly opaque inner place to the imperfect and sometimes cruel world of the rest of us was a mostly positive thing. She was smart enough to do it, she was ambulatory, she was socially precocious. If she could get close, what could be better for her? If Schuyler could become mostly one of us, surely we could all make up the difference.

Now I'm terribly unsure. I think perhaps I set her up to fail.

What do you do with a kid like Schuyler? More to the point, how do neurotypical kids roughly her age process who she is? She falls into a very specific crack, and it's no doubt a confusing space for typical kids to understand. I think most of them understand how to approach a kid with more severe (or perhaps simply more apparent) disabilities; kids are learning compassion from their families and teachers (or at least we hope they are), and they put that to good use with their disabled classmates. Likewise, I think they know how to navigate relationships with kids whose impairments are more superficial in nature. They know how to reach past those obstacles and reach a kid like themselves, and build relationships with those modest accommodations in place.

Schuyler continues to present a middle place, a child who looks and plays just like them, but for whom those standard rules of human interaction don't apply. It's not entirely, or even mostly, about communication, either. Schuyler presents as much younger, and frankly much stranger, than she appears, and it doesn't help that she has grown into a very tall girl, one of the tallest in her class. Schuyler can be very hard to understand in her entirety.

Grown-ups get this, and if you asked Schuyler to list the people she loves most in the world, almost all of them would be adults. But for kids, even those who know Schuyler well, she's confusing. She's happy and she wants to be their friend, but she's inexplicable and unable to play by the rules that they've been learning. It's not just communication, although that's part of it. It's also that she doesn't fit; she's not age-appropriate in some ways but ahead of her years in others. It's not anyone's fault, certainly not the typical kids who push her away. She's simply broken in ways they don't know how to accommodate.

This is inclusion's dirty little secret. It's a story I have heard from more parents than I can even number.

We've been having conversations with Schuyler this afternoon, trying to help her understand. How do you explain to a kid like Schuyler that because she's different (which she very much knows that she is), sometimes other people don't know how to be her friend? How do you get her to see the difference between a kid who doesn't know how to play with her and a kid who is being mean?

I'm not sure if she understands. She moves on quickly, so it seems like she's blowing it off, but then she'll mention some slight at a later time, perhaps days or weeks after. That's when it becomes clear that she carries all the little hurts with her, as if stuffed in her pockets. She doesn't obsess about them, but she doesn't forget.

I wish I had some answers.

25 comments:

Laura said...

It's like you are writing about my daughter. She's neither fish nor fowl and it is heartbreaking to watch her try to become a part of her peer group and be rejected. Like Schuyler, adults are her favorite people. I have this fantasy that it will get better as she ages and her peers become older and are able to see something of value in her. Deep in my heart though, I'm afraid that it will never happen though, and she'll be lonely forever.

Thursday's Child said...

"Schuyler continues to present a middle place, a child who looks and plays just like them, but for whom those standard rules of human interaction don't apply."

This. Vic looks neurotypical. Sounds mostly neurotypical except for some slight awkwardness and muddiness in his speech. Acts largely neurotypical. Until you hit one of his triggers. On of his inexplicable, inconsistent, unexpected triggers. One moment he's a happy 9 year old running around with the others, the next he's spinning out of control into an autistic tantrum for any number of reasons that make sense to him but don't scan for other kids.

They shy away. They don't know how to react, flummoxed by this very tall child who seems older than 9 but winds up acting closer to 4 on an emotional spectrum.

I've been struggling with the idea of mainstreaming him not this fall but next fall as he enters middle school. He just spent a week at a mainstream YMCA day camp and did really well - no major issues, no major meltdowns, just some little issues with behaviors here and there.

But he's been 'safe' so far, in his little bubble at the special school. It's an intermediate unit school, run by the county and therefore somewhat a part of the public school spectrum. But there are no 'typical' kids, neuro or otherwise at this school. They all have issues from serious remedial needs to behavior adjustment disorders, autism and so on.

I'm a little bit afraid of pushing him out there, afraid he'll get 'lost' in the system as well as having to face all of those little myriad slights and hurts, especially in middle school. Middle school which, all on its own, scares the bejeezus out of me even for a neurotypical kid.

And yet I think he's just about ready and will need to move into a more neurotypical environment and face some of those challenges /now/ if he's going to succeed in the wider adult world when he's older.

knittingwoman said...

I know this heartache. It is one that we keep dealing with, IMO it just gets worse in the teen years, my dd is 14 1/2. I am hoping that once through the junior high age it might be different. We also homeschool which means that while she has less casual interaction with her supposed peer group she also has less heartache from repeated rejection.
I focus on keeping her happy and busy instead just now.

Hillary said...

Many friends have recommended your blog to me over the last couple of years as we struggle to pinpoint my son's severe communication disorder. I always read but I never comment because I fear sounding like a totally insensitive asshat, "Oh, I know JUST how you feel having been through this for TWO WHOLE YEARS." But I have to say that this is such a huge part of my internal struggle as we face the decision to integrate into traditional schooling situations or homeschool and choose our social situations wisely. Since my son doesn't have ANY diagnosis from a single professional (and we've seen so, so many), we really have no idea what we're dealing with long term. He has no autism, no aspergers, no adhd, he's not cognitively impaired. He just doesn't process language. We see his blind faith in other children when he tries to jump into social situations, and then we see the puzzle looks when they ask him to participate and he doesn't process their request so it's as if he is deaf. When they ask him his name and he stares blankly. He's proved that he's able to participate in academic activities, he is a reader and is very much on target for his age. Can we possibly sacrifice his feelings in an attempt to force him into a mold that others define as acceptable? Or do we just teach him that he is perfect as he is, and it's the expectations of others that are broken? It's a tough call, and I'm glad you have written about it here. Thanks for always keeping it real.

daisyjo21 said...

This is why I am none-too-eager to put Jessica back into school. Everyone is crying that she needs to be around her peers. Really? I've seen how her peers who have known her since pre-school look at her now, I hate to think about how those who never had the opportunity to know her before her accident would look at her. Waters I am not ready to set sail in.

Me said...

Here is a good article on this topic. It talks specifically about the social problems affecting blind and visually-impaired young persons but I think it (and at least one of its references) is applicable to non-NT kids as well.
http://www.afb.org/jvib/jvib981102.asp

Penny said...

I hear you Rob and I have been there, and at times am there still. My 14 year old daughter who has autism has been included and in inclusion programs, since Kindergarten, at my instance, not the district's I might add. They would have put her down the hall in Life Skills or Autistic Support. The years have been a struggle, but they have been the most worthwhile, for my daughter. I can only speak from personal experience.

Those early years it was the teachers who questioned her existence in classes. The kids and her peers never did frankly, or never did that I noticed. It was the adults who had problems with inclusion. As the years have passed, that has sort of switched. The teachers more accepting in Middle School and now, 9th grade - the last frontier, High School this Fall. To say I am nervous is to be right. But I am also glad that for my daughter, her peers who understand her surround her.

Her peers in Middle School were typical Middle School kids. Many of her peers already got her, but some never did and I don't think ever will. But I wouldn't trade the experiences she had for anything - of being in Chorus, the Spring Musical, on the newspaper committee. I believe it has enriched her life in ways I don't even know yet. It has given her exposure to the real world, the one in which we all live, integrated and included. Am I delusional that it will always be like this? No I am not. But I have given her every chance I saw to be friends with kids, to have relationships, to meet that one true friend (typical I might add) who gets her, truly and wholly. She has that now and I believe she wouldn't if I would not have risked all these years in public education, fighting like hell for a general education for the girl.

I just had to share my story with my gal, in hopes that it gives you hope that all is not lost, or that she will never _______ (fill in the blank). My gal is truly who she is, and no, she doesn't fit the typical mold of a 14 year old girl, but she has had all the opportunities and chances and risks and belief I can muster for her education. I have spent years with OT, PT and social workers fighting for her to be taught social skills in context - how to make a friend, how to keep a friend, what friends do for each other - and sure enough, it worked. After explicit teaching of it. And I don't believe it made her feel bad. The loneliness made her feel bad, without a friend, I do know that.

Just my story and take on things. I believe in Schuyler. I believe in you, fighting for whatever Schuyler needs.

Paula said...

I know you've tried some of it, but it seems to me that sign language would open a whole new world of communication to Schuyler. I don't know, but wouldn't she be able to express herself more fully? To have real give and take conversations? Not with everyone, but with anyone who knows ASL. Maybe she could forge some real bonds of true friendship with hearing impaired kids her age so she could have sleepovers and go shopping and to movies with her friends. Anyway, I know I'm not telling you anything you haven't thought of. I just know there are hearing impaired kids out there who would be thrilled to have Schuyler as a friend.

Rob Rummel-Hudson said...

Penny: We're really feeling that shift now, whe suddenly it's not so cool to be Schuyler's friend, whe before it really was. I think it chiefly happens as the kids transition from wanting to impress their teachers to wanting to impress each other. We're hoping that joining band will help offset that to some degree, as band kids tend to protect each other.

Paula: The catch is that because she is hearing and has been raised in a hearing world (and schools), Schuyler uses Signed Exact English rather than ASL. Teaching her the different structure of ASL would be a lot of work, and I'm not sure it would be worth it for her. But she does love learning SEE, and still uses it. I think I'm going to try to teach (and learn with) her a lot more signs this summer. These an extremely cool app on the iPad for signing.

Annie said...

I think not only do you have the issue of kids wanting to impress each other, but the equally vexing issue (for Schuyler) that for NT girls of this age words and communication are in most cases their only form of "play." Being able to join in a game or activity means a lot less to girls in middle school, then being able to engage in a discussion about yourself, others, boys, life. And understanding the social rules of those conversations is of prime importance. As someone who failed to understand those rules myself, I am shocked and amazed by my daughters who clearly do understand those rules. If I'd never had a kid who did, I wouldn't even have understood just how important they are or how a kid, like I was, who misses those rules, is so far behind its hard to catch up.
From what I have seen, your alliegence to band is a good call. It's not just that those kids 'protect' each other, it's that for whatever reason this activity seems to draw in kids who also have issues fully meeting the "new social contract' that seems to be drawn up in middle school. Who don't quite get the rules, or even sometimes that these rules exist. And they are thus much more accepting of others in the same boat.

Rhonda said...

It seems to me that we are all "almost" like everyone else as we enter our teen years.

And before you say, "but Schuyler's case is different..." yes it absolutely is...but...

Even the neurotypical girls--you're not quite cool enough, or too smart, or not interested in reading the same books, or a year or two younger because you skipped a grade, or you're from somewhere else, or your parents don't let you have a Nintendo DS, or you just don't have the same financial advantages...and the kids exclude you, and you feel left out, and you carry those slights like stones in your pocket.

And therein lies yet another aspect of the heartbreak that you're dealing with. In some ways it's perfectly normal.

Medkid said...

I don't have a child like Schuyler, but have spent years teaching skiing to all sorts of not NT kids, and I truly love working with all of my unique kids on the slopes. I only wanted to say the band idea is awesome! I spent YEARS in bands playing trumpet (and still am) including during that awkward middle school time, and you're right. Somehow it seems to be an unspoken rule that we respect our section-mates no matter how different from ourselves, and the social bond extends beyond rehearsal. Maybe it's the type of kid, or the common goal or both, but either way I truly hope band can become an accepting place and refuge for Schuyler (have you considered trumpet? :P Not so fun for you guys, but girls make pretty awesome trumpet players! :).

Rob Rummel-Hudson said...

Unfortunately, Schuyler's condition prevents her from playing a wind instrument. We really wanted her to play trombone, for about a dozen practical reasons (we have a trombone for her already, could teach her, etc.) and some tied to her disability (requires less finger dexterity), but she has a really hard time exhaling through her mouth and controlling the throat mechanism that changes how she routes her air.

Also, as a trombonist, how could live with myself if I raised a trumpet player?

Linda said...

I know that Schuyler's struggles to make friends are unusual and are not the same as neurotypical kids who just struggle socially, and I'm not at all claiming they are.

But! I do believe that as kids get older, the ones who, for whatever reason, need to find just the right friends have more opportunities to find them. And I think some of the same things that apply to other kids who wait and wait but eventually find their tribes may very well apply to Schuyler. I'm not dopey enough to be like, "OH, IT WILL ALL BE FINE!" because that's ... dumb, and mean. But I just ... I do believe that good, interesting, lively souls always have a shot at finding people to connect with, even when it's hard. But it often takes longer -- sometimes a lot longer -- and it doesn't make that in between time any easier. And there are obviously no guarantees, and I know that stinks.

I'm not trying to blow sunshine at you, but I just cannot help feeling like she is going to find her way into a flock of kids who just love her. I cannot help it. So I am stuck, in this case, with optimism.

Laura said...

(Disclaimer: I have no kiddles neurotypical or otherwise. I am neurotypical.) :)
I really think this will get a significant degree better and easier for Schuyler as she gets older. I was kind of an odd(?) kid and often identified more with adults than I did with kids my age, all the way through high school actually. I was often asked if I was a high school teacher while I was still a student. It started to level out in college and got infinitely better as a working adult. I am sure this also has to do with my peer group getting older along with me.
www.itgetsbetter.org is a project to try and reach out to teens who are are LBGT and struggling with being bullied. Maybe there is a similar project for kids with disabilities? Or maybe there is a mentor/big sister type that Schuyler could chat with. It can really help to talk with someone who has "been there, done that and gotten the t-shirt". :)

Julia Roberts said...

I'm with you Rob and am working on a post for Support for Special Needs.com, as you know.

But while I want to believe some of your commenters that think things will get better for our kids as they age, I do not. I think the years and years of being behind their peers just adds to the differences. I think they will find friends but I believe their friends will be limited. Maybe one, maybe two. Like for our son.

marythemom said...

I have to agree with Julia that most non-NT kids don't get better as they get older, but I hope that with help they can find ways to adapt to their environment or adapt their environment to fit them.

The school always pushes "least restrictive environment." When we ask for accomodations that they consider restrictive they say my child is going to have to live in the real world and needs to be prepared. My son needs lots of structure and support, if we can't find a way to help him get that then he will most likely end up in jail where he will get what he needs. I finally came up with a response to the school, "My child is choosing a path that will be more restrictive and trying to force him to be in a more "normal" environment, is what is not appropriate."

Mary

mooserbeans said...

The hardest thing is going to find a peer group who can relate to Schuyler as herself. You are so right, she really is between. From listening to my daughter (nuerotypical and very quirky) explain the dynamics of middle school it can be a jungle. Sometimes the most compasionate kids are afraid to reach out to those who are alone for fear of being made fun of by the masses. It is social survival at the very basic level. Do you think that Schuyler would enjoy Girl Scouts or something like that? Also, now that my daughter is older she has internal conflicts that she wishes to work out without my input. She tends to journal. I wonder if there is someway to help Schuyler express her feelings through art, writing, keyboadeing?? I am sure the combo of communication and fine motor difficulties really makes it hard.

Miss Pink Ponsonby said...

Having recently seen the documentary I Am, I am seeing the world through a different perception. One in which we have overrated -and therefore overdeveloped- the brain and underrated the other systems we have that help us survive and learn and grow, like the Vagas nerve for instance. In reading your blog over the years I think of Schyler as having so many skill sets that just aren't brain related. Were you wrong in trying to get her to 'fit in'? No. You just helped her develop, to whatever extent she is capable, a brain centered skill set. It's what she has in ADDITION to that, that makes her happy and alive. Your child is dancing her life, and it's her own unique dance. You've helped her add steps and delete some steps and so she's dancing the only dance there is. HERS. Oh, just go see that documentary it says it so much better than I can!

Anna said...

"More to the point, how do neurotypical kids roughly her age process who she is?"

As the mom of a neurotpical 6 yr old girl (whatever that means) , I have worried about this from the opposite point of view. I want my daughter to be sensitive to other children's difficulties and to be kind with those who can't defend themselves as well in some situations. Please don't feel that parents of 'neurotypical' children are not worrying about this at all. I talked about this with my daughter. She identified one particular child in her class who, in her words, is as old as she is, but 'behaves like in preschool'. I know that this child has autism and I was relieved to hear that he is her friend. We mostly talked about demonstrating kindness.
In the end I think exposure is key. Children need to have 1:1 play dates with each other to learn to interact, to appreciate each other and to find that special friend. I would recommend talking with other parents as much as possible to identify families who will be sensitive to your child's needs and to organize play dates with other children, as many play dates as possible. Some will go very wrong, but some will be a delight. Little girls very often need a 'best' friend, and finding a 'soul mate' has often nothing to do with their skills. This will also require you to interact with other parents a lot, which sometimes is the most difficult thing!

Stephen said...

I understand the process of going over and over what's known or thought to be true and questioning the choices made. But it's hard to see a case for how you set her up to fail!

All parents want their kids to go as far as they can with what they have. If they don't appear to be on the route we wanted or that still seems best for us, sure, there's going to be a lot of pondering. For comparison's sake, I wrote down some recent thoughts on my son's path here.

However, what's the alternative? No, we don't have the answers but we do the best we can based on the information available to us at the time. No reason for you, or Schuyler, to feel bad about that.

Amy said...

You say it exactly like that: they don't know how to be her friend. she's not doing anything wrong (I assume), and they may not be doing anything wrong, either. They just don't know how to do what they should do, and that's not really anybody's fault.

As a teacher, I've seen this one play out more than a few times. I've seen regular kids rush to help kids with wheelchairs and crutches, and become angry when the "normal-looking" kids act a little funny. Unfortunately, the problem is pervasive, for the simple reason that even the mean kids are just kids, and still struggling with their own development.

Wish I could offer some advice. You're definitely doing the right thing to get her involved in something in which she can be an equal to the other kids, and communicate with them in a common language (music). Hope it goes well!

sjcadd said...

I'm a little late to the party on this one...I'm a long time reader, but been away for a while. What struck me here, was how much Schulyer is much like a neurotypical little girl. At the risk of being sexist, girls have the most amazing ability to recall slights, and hurts, well after the fact. I remember my daughter's first grade teacher commenting, "C is quick to respond to slights, both real and imagined." My daughter and I have the unforunate ability to hold grudges -- even after we've forgotten the details of the offense!

Not sure what my point is here, and not to minimize all you and Schuyler go through, except to empathize, as the (very sensitive) mother of a very sensitive (but depression-prone) neurotypical child, that the hurts are out there, and sometimes they penetrate in ways that we don't even see... and to observe that to assure our children that we love them more than anything in the world, is pretty much all we can do -- and by and large, it's enough, even though it never feels like it is!

Loves Pickles said...

I've felt that same way when I read about autistic kids that were flourishing in their "special" classes but after "inclusion" in the mainstream classes, were more excluded than ever. It's almost as if the polarization becomes that much more apparent. I have mixed feelings about inclusion for that reason. Are we doing what's best for people with disabilities, or for the ones wearing rose-colored glasses wanting everyone to get along? But I do believe that there is a point where we need to try. We cannot isolate people, and this is part of the fight to make our differences not such a big deal. I don't think there's a "right" choice here, you pick one path and deal with the consequences or you pick another path and deal with those consequences.

PS: You capture all of her moods beautifully, and tragically, with your photographs.

wattle said...

For Hillary, have you looked at auditory processing disorder?