Schuyler attended a band event this week, held at a local video arcade/mini-golf/go-carts place. The kids were set loose with a cup full of tokens and free reign over the place. It was a nice gesture by Schuyler's new band director, and the kids seemed to have a good time.
There were a number of parents in attendance. We went because no one, not us and not her band director, was certain how Schuyler would do in a setting like that. It felt a little early to just throw her into the mix. But after playing a few games with her, we held back, went to another room and just waited. We watched her try to step up, and to make connections.
She tried. She was awkward, but she tried. After wandering the arcade for a while, looking for someone to play with her, she made her way to the laser tag room, where a bunch of her classmates were being divided into two teams. I watched her disappear into the dark.
When she came out later, I detected a change. And here's the thing that's hard to explain, and yet it's maybe the most important part. When Schuyler came out of the laser tag room, she wasn't defeated. She came out alone, and she didn't try to talk to anyone else, but she wasn't upset, not exactly. We asked how she did, and she gave a thumbs up. She then asked for more tokens and we sent her back into the mix. After a while, I slipped into the arcade and hung back in the shadows. I just wanted to see how she was doing.
Schuyler wasn't interacting with anyone. She wasn't trying to connect. Whatever happened in the laser tag room, it convinced her to retreat back into her private world. I watched her play games, alone. But again, she wasn't dejected. She played a motorcycle game until she was out of tokens, and then she came to find us. When she saw us, she gave us a little smile.
"Did you find any friends?" Julie asked her, even though I guess we already knew the answer.
Without really looking at us, Schuyler just said, "I'm fine." She repeated it a few times.
Her tone suggested that she didn't want to talk about it, so we didn't. We took her outside and played some miniature golf, and the evening ended as a family outing. After the three of us got away from everyone else, she perked up. She said she was fine, and she meant it.
Schuyler wants to be like everyone else so much, and it breaks my heart. I see how hard she tries to make friends with her neurotypical classmates, and I see how they walk away from the effort. I don't think they're mean to her, not exactly. Maybe they just don't know what to make of her, like so many before. Maybe they aren't sure yet if it's cool to be friends with the strange girl. I don't know.
I've shamefully confessed in the past that I often don't care much for neurotypical kids, and I'm not always much better with their parents. It's tricky, because we really do stand apart in so many ways, and when I see what their worlds are like and the (to me) alien obstacles they face, I have to really fight off resentment. Is that awful? I think it must be.
I watch Schuyler's neurotypical classmates walk away from her and I think "Wow, random NT child, you just missed a shot at getting to know the one kid in the room who is truly unique." I feel like if the rest of the neurotypical world would just stop and try, they'd discover a friend like none they've ever had before, and their lives would be transformed by Schuyler, as mine has. There are a handful of people in the world whom I would say have really gotten to know Schuyler, rather than just the idea of Schuyler. They've stuck with her for the long haul. And I think it's fair to say that every one of them feels enriched by the knowing of her.
But kids don't think like that, not at this age. A lot of adults don't either, actually. A lot of people are missing Schuyler, missing out on the chance to enter into an authentic relationship with her, on her terms and in ways that make her happy and make her grow. Well, school's just started. I think perhaps they'll catch on.
And so she retreats, head held high, and she plays alone, or with us. Mostly she plays alone. She doesn't seem happy about it, not exactly, but she does seem to be at peace. Schuyler has a back-up plan, it seems. Her world may be a little lonely, but it's cool. She's cool, too cool to wait around for admittance to a world that is frankly a little grey compared to the one she constructs and reconstructs.
We talked this evening as she got into bed.
"Do you like school?" I asked her.
She nodded her head and said, "A little." She held her fingers slightly apart.
"Are you making any friends?"
"No," she said, but then changed her mind. She held up two fingers. Schuyler has made two friends, or so she says. I met one of them this morning at her Miracle League soccer game. He's in her special ed class at her school. He's impaired, but even without clarity of expression, he made it clear that he genuinely likes Schuyler.
"Are you happy?" I asked her.
She gave her little secret smile and said it again. "A little."
I don't know how happy Schuyler is, exactly. Not all the time, anyway, and certainly not when she finds herself standing alone, as she does so often these days. But she seems determined to keep moving. Not like a shark, exactly, because she's easily the least predatory person I've ever known. Schuyler keeps moving like a hummingbird. She is always in motion, always searching for the prettier flower, the better place, a happier world with sweet nectar and loyal friends.
Hummingbirds don't seem strong. They're fragile, but they never stop. And in their perseverance, we see their genuine strength.
29 comments:
I've written about Gage's ability to hang in there around people even when he's truly alone. I think it takes an extra dose of "I don't care what they think of me" gene that so many kids do not have.
Let the NTs in though - we've found huge supporters and people who've really embraced Gage and encouraged their kids to appreciate his qualities. Two families and they have taught Gage a lot.
I related so well to this post on such a personal level. So much so that I wrote a post on this subject. For me, straddling the two worlds, much like a lot of our kids do, is the toughest hurdle to cross each and every day.
Socially, I'm very outgoing, typically, as evidenced by my vibrant social media presence, but when it comes to admitting my needs to friends or to people my own age, it's tough. The fact that I can't do things at certain times of the night because I actually do need rest is tough. Just the fact that they have none of this crap to worry about is tough. If you, Julie, or Schuyler ever want or need to have someone who's been through this to chat with, please let me know. I'd be totally open, and I'd love to meet you all!
Thanks, Rob, for speaking and writing so candidly. You're very much appreciated.
Wow Rob, You have so completely captured what we go through with our girl around the endless unreciprocated play dates of elementary school and the unreturned phone calls of middle school and the basic cluelessness of so many people we encounter. Our girl has her own private version of bowling alone, along with the spectacular private world that she makes for herself; I imagine quite like Schuyler.
We get tired of trying. I can only imagine how our girls feel. Where will they be embraced? I want to launch my girl into a world that gets her and I usually find it's not there.
That photo of Schuyler shows the woman she is becoming -- it's so beautiful and strong. It takes the breath away.
Especially at this age, what about maybe getting a couple names of friends Schuyler wants to get to know and setting up individual times to get them together? Like going to a movie or fun dinner or something? Middle schoolers have such a herd mentality that maybe breaking that up a little for Schuyler might make building friendships easier. (Middle schoolers are also Lazy. So setting up the situation so it's easier on both Schuyler and the other kid could help.)
I was a very awkward kid who didn't make friend's easily until HS (I'm still awkward, who am I kidding). While it's not the same thing that S is having to deal with, these are some things that worked for me that could work for her.
What a beautiful strong little girl you have... and what wonderful, supportive, caring parents she has.
Thank you for this post. I have twins, one completely NT and the other has some challenges. His aren't as obvious or severe as Schuyler's, but they exist nonetheless.
It is a very difficult world to have 2 kids, same age, same grade and have one be a social butterfly, friends everywhere and the other more alone, desperate for the connections the other has, while trying to learn to be okay without them.
Like Erin, I'm straddling both worlds, and it's difficult. I don't feel like I belong in the NT parent world much anymore, but I think I'm doing a disservice to my NT kids if I don't try to function in it somewhat.
As for kids not wanting to get to know our kids who aren't NT....there are some who will. I have met some amazing teenage kids who are interested. The ones I know have siblings with disabilities. I've seen my own 14 year old daughter reach out to others in ways that have made me very proud of her.
My daughter and I have talked about this a few times. I think she feels that she should be good friends with the special needs kids in her classes espec. since I have worked with kids with special needs for most of my life. She tries to be polite and kind, but often feels like she is risking being outcast from the rest of the group. It is such a hard age. It's like Wild Kingdom out there and some kids can be very nasty. Those that aren't (like my child) are just trying to avoid the nasty kids.
There is an Very Special Arts group that puts on musical theater. NT and ND kids (usually siblings) put on plays together. I wish it were closer and we'd join in. One evening my daughter and I were talking with a girl her age who had disabilties, they couldn't find much common ground. They liked diffierent music and TV shows, but all of the sudden they struck on pay dirt: how annoying thier mothers were!
All that said, it might be easier to try to set up situations away from a school setting for her to make new friends. At this age it is so much about common interests. Poor Schuyler has it so much harder becasue of the communication issues. If she didn't have fine motor issues on top of everything else, I bet she's be a texting demon.
I think that what you would like to see with other kids embracing Schuyler borders on the impossible at this stage. Even NT kids are doing so much work at this stage to just find their place and try to fit in that doing the work that would be required to learn how enriching a relationship with her could be is likely a no go unless there happens to be an unusual child in the bunch (often with siblings who may not be NT and from whom they have already leanred much).
Second, your comment about the other parents is very interesting because I imagine not only are you dealing with the issues brought up of them not dealing with what you all are.
But even if that were not present, are you and Julie the kind of people who tend to just fit in to a very social circle? I think from what you have written the answer is no (believe me I can relate). And I can see how this puts any child of parents like this at a social disadvantage. It's not your "fault" it just is.
The non-NT child I know who does the best socially is one whose parents by dint of personality are very very socially engaged people. Their kid gets this modeled every single day because his parents are uber-connected to the social scene here. They are the kind of people who ALWAYS ALWAYS have a million plans with people. Taking trips with groups of friends, having parties for almost every holiday or event.
These people almost never for example have, even when their kids were little, said "hey let's take the family minature golfing" or "family movie day" instead they round up two or three other families and go.
Thus while the rules may escape their son more than most, he is seeing them in front of him so often I can see how it helps.
My guess is that you (like me) may be at the other end of the social spectrum and thus this is simply where Schuyler is coming from.
She seems to be at peace with what is. She seems like such a brave kid who can be a great friend. But it may take til High School or later for her peers to figure this out.
Middle school is tough! Big time. All kids want to do at that age is fit in/blend in and the NT kids are really immature (almost more so then they were in elementary school) so it does not lead to a very accepting environment for the kids that struggle. It will get better in high school and as the kids get older. Whenever exposed to a large group of kids my son gravitates towards high school kids because he likes their maturity level. They know themselves better and so can be more accepting of others.
I can't imagine what it feels like to have a non-neurotypical child, or what that parenting experience is like. What I do know, however, is that I would want to know Schuyler, and I would want my kids to know her. But if I tried to be friendly to you and you gave me the brush off, if you didn't help me give some language to my children around Schuyler's differences, I would take that as a sign that you wanted your family to be left alone. And that would include Schuyler. I am genuinely sorry that you feel that you don't have anything in common with other parents. However, I think that as much as Schuyler's challenges are unique, there might be some bridges that you can build with those NT parents that might enrich your experiences with Schyuler's school and hers as well. Without being preachy, because that's not how I mean it, if you want other kids to put themselves in a socially uncomfortable position reaching out, it might be nice if you tried too. Lots of NT families would love to be friends with you all, but you have to let them.
Jane, where did I say I give the brush off to anyone? Seriously, show me where I said that and I'll be happy to entertain your scenario. Because I believe I also wrote about resisting the impulse to push away (from which you may infer that I am subsequently RESISTING those impulses).
Seriously, if you as an NT parent are insulted because I WROTE about how I feel and concluded that I am out there with Schuyler, telling every neurotypical parent and child to kiss my big ass? I can't help you with that. Because I'm not treating people like that, and I've never claimed otherwise.
I've never been anything but welcoming to NT families who are interested in getting to know Schuyler. It doesn't happen often, but I am thrilled when it does.
Incidentally, not only are the friends who will get custody of Schuyler if we die NOT parents of a special needs child, they're not even parents. They are dear friends who have taken the time to get to know her and understand her, and at no point did we ever think for a moment that they were somehow incapable of doing so.
Sorry to be so abrupt about this, but you're extrapolating things about me that are incredibly unfair.
Jane, what did you think when you read this line:
"I feel like if the rest of the neurotypical world would just stop and try, they'd discover a friend like none they've ever had before, and their lives would be transformed by Schuyler, as mine has."
Wondering how that turned into "But if I tried to be friendly to you and you gave me the brush off, if you didn't help me give some language to my children around Schuyler's differences, I would take that as a sign that you wanted your family to be left alone."
"I've shamefully confessed in the past that I often don't care much for neurotypical kids, and I'm not always much better with their parents."
That's where I got the impression that you were giving folks the brush off. I read this part of the post as "it's really important for you to try to like my kid, but I'm probably not going to like yours." Maybe that hasn't been your action, but can you see how I read it that way?
"I've never been anything but welcoming to NT families who are interested in getting to know Schuyler. It doesn't happen often, but I am thrilled when it does." I'm glad to see that. But you just might find that you'll have more NT families who are interested in getting to know Schuyler if you also are a little bit interested in getting to know them.
Finally, I didn't think that you were, "telling every neurotypical parent and child to kiss my big ass." Not at all. But there is a wide margin between that position and "I would like to be your friend" and I was only suggesting that, in a scenario such as the one you described where there were other parents there, also worried about how their kids are doing socially, moving more to the middle might be advantageous.
I didn't mean to make you defensive. As I've said before, I read this blog because it always makes me think, not because I always agree with you. I only hoped that my comment might make you do the same. Didn't mean to be accusatory.
This resonates with me Rob. My gal Maddie only has 2 or 3 close girl friends, and she is entering 9th grade at the HS. That's all she really needs. These girls have taken the time to get to know Maddie, with all her idiosyncrasies and different ways of doing and knowing. And I truly believe they like her for her.
It took some doing though. Once they started to be friends with her in 6th grade, I nourished it like no other. I invited them over to hang out. Maddie returned all their phone calls. We asked them to join us on outings. We got to know their families really well. I'm not saying we were stalking them, it's just that I knew without the expressed intent of ME going to pursue the connection, it just wasn't gonna happen. Now, the girls call up Maddie, come over our house, Maddie goes over their houses, she's invited places with them (and they know what that may entail at times) and I don't think it would have gotten nearly this far if I hadn't somehow purposefully followed through on their first interaction and friendship with my daughter.
My gal also likes to be alone and she will tell me she is 'fine' with it, but I also see the different reaction when she is asked, by a friend, to do something with that friend. It's a little light I see inside of her - that someone likes her outside of her family and relatives. I wish that for Schuyler, even though she says she is fine. I wish that for all kids, NT or otherwise, that they have 1-2-3 really good friends in this world, people who understand them.
Just my thoughts and experience Rob. Thanks for a great post. Getting to know Schuyler through your blog is both a honor and a pleasure.
I'm not sure if I've ever posted a comment.. but hummingbirds... through my friend corinne i've been lucky to very up close and personal with hummingbirds the past 2 summers. they do seem like the are fragile little birds, but they aren't. they really are tough, incredibly tough. i think it is their smallness, compared to us, that makes them seem not so strong. look at what they do - how they move, their ability to fly.. they are amazing little buggers, and beautiful, and known to be territorial, although what i've seen is that when there are a lot of hummers in the same area they get more cooperative.
i'm not sure what my point is.. except that i think comparing your daughter to hummingbirds are a great comparison even though i only know your daughter through your writings. if you have time to read a great book about 1 person's relationship with a hummingbird that ended up living with her for a winter, check out the book "a hummingbird in my house": http://www.amazon.com/Hummingbird-My-House-Story-Squeak/dp/0517577291 .. maybe it'll lead you to liking the comparison more, or less.. but maybe you, all 3 of you, would at least enjoy a sweet little story.
:)
I myself am what I call "Splashing in the shallows of the autistic spectrum", and I truly feel for what Schuyler is going through. My sixth grade was my hardest year of school socially, and I had so many buttresses that Schuyler doesn't. I could speak, and I could handle the academic end easily. I also went to a small K-8 school, so everyone KNEW I was smart, no matter how weird I seemed.
I was the target of a bullying campaign by three girls, and in accordance with the views of the time, no adult intervened because kids were expected to learn to "stick up for themselves".
In the seventh grade, a group of my old friends realized that for whatever reason asking me to fend for myself was unreasonable, and almost drafted me into their group. I remember what a great relief that was!
As an adult, I've learned to celebrate the unique perspective of being "not quite neurotypical" and to head off the spectacular communication breakdowns that bedeviled me into adulthood.
I'm not really sure what to suggest you to do as a parent that you're not already doing. Maybe read Schuyler books about the contentious middle school years, and talk about the issues they raise? Teach Schuyler to be an 'Anthropologist on Mars' and try to learn the bewildering social universe of the neurotypical in that way?
My heart was in my throat the entire time I was reading this. I can't imagine what your heart was feeling watching this.
I hope middle school proves to be kinder then we all remember, and that S is able to find a good friend or two along the way.
Hummingbirds don't seem strong. They're fragile, but they never stop. And in their perseverance, we see their genuine strength.
Perfect line. Spot on perfect.
Someone must have left a window open in my room, letting dust in. Suddenly my eyes are stinging.
My daughter Sarah is a kind of mix of NT and special needs, mainly stemming from sensory processing issues she has fought hard to reach some accommodation with, and she too always looked to kids 2 or 3 years younger than her for friendship. In middle school things change, and kids who were very open and friendly seemed to become more conscious of their place in the social hierarchy and the "different" kids were more or less left in the dust. These were Sarah's worst school years ever.
However, Sarah herself [and I'm thinking this may apply to Schuyler at some point] seemed to mature in a different way than her peers in those same years. She became LESS self-conscious, more accepting of herself and her differences, and less hurt by social rejection. It was a blessing, and I think a very important stage for someone who will struggle with their different neurology for their entire life. So how it appeared from the outside and to the adults around her was that Sarah grew more mature and confident at a time that her peers were growing less so. By high school this process managed to even the scales, though she never really mixed freely with NT kids in the way other NT kids do - just the special/kind ones.
All of this is to say that Sarah formed a group in eighth grade that, with the guidance department's help, buddied up NT and special needs students for things like lunch, walking to classes, study hall, gym, and other times that NT kids would typically group off into cliques. The NT kids who were willing to do these things are a wonderful group of kids. Some have special needs family members, some are just kind and open minded kids. They are fine with awkward conversation and minor or even major lack of social skills. In some cases their [NT] social skills are modeled for the less socially skilled special needs kids, in other cases it's just companionship and friendship on both sides with no expectations.
Now that Sarah's in highschool the program is called "peer leaders" and I've seen a huge change in the way the NT and special needs students are able to interact and flow together - probably more to do with age and acceptance of differences than because of the buddy program, but I honestly think the buddy program helped during the super socially charged middle school years.
You may want to check in with the guidance department at Schuyler's school to see if this is a possibility as a program there. Just a thought.
i read this post with more interest than usual.
one of my big fears with my son, after thoughts of "Will he ever talk?" and "Will he ever read?", comes, "How will the other kids treat him?" and he's only 4. i can't imagine how hard it must be in middle school. heck, i had a hard time in middle school and i was NT. it must be so much worse with a monster, as you call it.
i remember asking one of his daycare teachers, when my son was 3, "Does he have any friends?" i remember how relieved i was when she said, "Yes, he does." apparently there was a girl in his class with the same first name as his last name, so her little 3 year old mind thought they were related: she called him "Bubba" for brother. she followed him around and made sure he was taken care of, because she had to take care of her "bubba." every morning she came to greet us, holding my son's favorite pen so he could play.
i know kids get crueler as they get older, but i'm trying to relish these memories of their innocence right now. i hope that my son can be as strong as Schuyler is when the cruelty becomes evident.
Neverland:
I forwarded your comment to Schuyler's SpEd team leader and got a fantastic reply. Basically, she's developing a similar program in her school, although it's about a year out from implementation.
This year, she's doing a "reverse-inclusion" program, where General ed peers go into the Special Ed world to help students who need a peer model. Next year she wants to send Gen Ed peers into Gen Ed classes to be a buddy/peer leader instead of a SpEd assistant. Apparently another middle school is doing this with really positive results.
Every day, I feel better and better about Schuyler's new team.
Neverland:
What an awesome idea! Rob, I am so glad that Schuyler's school is doing something similar. In this day and age of test, test, test, score score, score; we seem to forget that we are in the business of helping to create future adults. What a wonderful first step!
Glad to hear that there is going to be some kind of buddy program started. Our middle school has Rachel's Challenge which teaches kids to be compassionate
http://www.rachelschallenge.org/
I watched my special needs son at the bus stop this morning on the first day back to school. He so badly wants to connect, but he presents as loud (he's hearing impaired) and overly eager and I see the other children physically step away, back off. It hurts me, but it doesn't appear to hurt my son -- he seems oblivious to the slights/disinterest. But I can't help but wonder -- is this why he relishes isolation and playing his DS? Is there anything I can do to facilitate these kinds of social interactions?
Occupying a special place in the hearts of many, sight unseen, is little comfort to a young child who just wants to play. I hated those days when I was young. I hope they pass quickly for her and become blips in her memory.
Long time lurker and big fan, of your writing, your journey.
I would say, middle schooler kids and most parents haven't the faintest idea how to bridge this distance w/o risking making a huge gaff-they don't know what to do, what to say, how to approach-so they don't do anything rather risk an offense, an unintentioned hurt. Neverland's daughter's experience of pairing NT w/ unique kids is interesting, a step in the right direction. Ultimately, I think you'd have better success pairing Schuyler w/ a cool, artsy/musical kick-ass high schooler to take her out and help navigate social things. Schuyler is absolutely typical in that she doesn't relish trying to do this in front of her parents-not that you guys aren't cool-but hey, you're her parents. She senses your angst in 'did you make any friends?' and 'how was it?', 'are you okay?'; all understandably so. Find a great older kid w/ a clean driving record, some Sign (a little is ok, Schuyler can teach them more and it's a bonding opportunity), to take her for pizza or bowling or whatever kids like to do where they meet other kids, and let that person facilitate; being a hip older kid, they may draw interest of Schuyler's peers rather than repel it the way parents do. Perhaps it could even be included in her IEP or respite service, or it'd look great on some kid's college application. Plus you'll likely make a lifelong family friend who will give you insight to how Schuyler is doing when you're not there-and they'll get what a great kid she is, help bridge that gap for others. It'll be good, who cares if it's a paid friend? That is so not the point-she'll get a ton out of it. Give it some thought! Oh,the only other idea I had was perhaps connecting w/ some signing groups, true she's not hearing impaired but it's the manual language connections you want to try and make. best, Leah
She reminds me of Amelia Earhardt in this photo. I can't tell you why, maybe a sepia quality to the photo? Anyway, I really believe that Schuyler is going to kick life's ass. It's not going to be the other way around. Please write about her all the way to 18 and beyond. We are only readers but we are so, so on Schuyler's side.
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