Rob Rummel-Hudson has written for us before about his perspectives on special needs parenting. While this post is especially relevant to parents of children with disabilities, we think parents of neurotypical need to read it, too…
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.
Broken Phantoms: understanding visually identifiable and invisible disabilities
If there is any one particularly great experiential divide in the vast disability community, it may be that between the visually identifiable and the invisible... Read more
“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 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.
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.
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.
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 sometimes 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.
Thanks for writing this. Too often children with disabilities and their families suffer in silence. My brother has cerebral palsy, while I have ADHD and a Learning Disability that affects my social skills so I strongly identify with this article.
One resource I would strongly recommend is the book and/or DVD “It’s So Much Work to be Your Friend: Helping the Child with Learning Disabilities Find Social Success” by Rick Lavoie. Rick Lavoie is an educator who has spent many years working with children with learning disabilities and ADHD. A trailer for the DVD is here: http://www.youtube.com/watch?v=Ys_t-LpxnQw
Rick is probably best known in educator circles for his groundbreaking Video F.A.T. City (Frustation, Anxiety Tension) or How Difficult Can this Be? that he made in the 80’s. The video takes a group of neurotypical people and puts them into a situation where they feel what it is like to be learning disabled. It’s powerful stuff. Here’s an excerpt from youtube: http://www.youtube.com/watch?v=zhzh9kt8z7c
I especially *love* what he has to say about fairness:
I love this article, and I went to your blog and read the update… also insightful and moving. Your realization that your daughter, too, has trouble relating to other kids at her table with special needs (who she DOES sit with but doesn’t identify as friends) is fascinating, and I really commend you for having the humility to notice that and ponder how to work with it. It’s thought-provoking that special needs kids aren’t actually that good at interacting with each OTHER and they might have an easier time forming friendships with kids without special needs. Good luck forming your chapter of the mentoring org!
I was a neurotypical (but from a dysfunctional family) child who didn’t have any friends. At my school all the students had to sit together at lunch, but I only remember a handful of times where anyone sat with me by choice. My school years vacillated between periods of being ignored or being bullied, or occasionally, having some sort of mutual attempts at friendship with another kid at school, which usually ended badly because at this point I was so socially isolated that I didn’t really know how friendships worked.
From my own perspective, I often didn’t really feel that bad about it. It was just kind of how things were. But it definitely sucked, and I’m sorry that your child is going through a similar experience. My parents had no idea this was going on with me, so in that regard I think you’re fortunate–it might be difficult to have your illusions about your child’s school life dissolved, but in the long run it’s so much better if you’re able to support her through this, and advocate for her.
I obviously don’t know your child’s full school situation, but if you think it might help, you should talk to her teachers and the other school’s staff about it. At my school my teachers often spent time with me during recess or lunch so that I wouldn’t feel alone.
This story kills me. My little sister is special needs, and middle school was so hard for her. It was like a switch flipped, she’s always so happy-go-lucky and LOVES school but the first half of 7th grade she started hiding homework and stopped talking almost completely. Her whole face broke out in cold sores from stress, which I’m sure made it worse. Then she came home and sat down and was like, “Mom, am I retarded?” I had to leave the room, I still don’t understand how anyone could be cruel to one of the kindest, most amazing people I know. I heard from a friend’s daughter later that people were really rough on her.
She ended up testing into a program at another local school for special needs and it’s been amazing. She won’t “really” graduate but she has lots of friends and the general school population is a lot better because they’ve all grown up with a huge portion of their school being special needs, and they offer training for jobs after high school and take them out 6-8 times a month to do things like buy clothes, groceries, etc. The school is saying now that she’s testing just a bit too high to stay in the program and wants to put her back in special ed in her old school district, but as she’s halfway through high school with no credits my mom is trying to fight it.
My sister is on the spectrum. She recently graduated from high school, but I know that this was her life in middle and high school. I know how much she realizes her limitations and aches for a normal life; she cries for joy practically every time she sees my son but knows she will never have children. It breaks my heart, how she recognizes all the things she can’t have.
Middle school is the worst for pretty much everyone, I’m convinced. I’m pretty sure I (neurotypical as far as I know) sat alone a lot of the time in 6th grade, and the times I didn’t I definitely sat at the “misfit” table. And to be honest? I didn’t even like the other misfits. It’s like what you describe in your follow-up (which I love, by the way). So it may be heartbreaking, but know you’re daughter is definitely not alone, and that despite the stress of her life right now, she probably has a great future ahead of her. Good luck!
Single Dad here. Hope I’m not intruding on the offbeatmomma theme.
My son has ADHD and Aspergers. He has had the same experience regarding no friends and even preferring to eat lunch by himself in the classroom (he is in an emotional support class).
It’s heartbreaking but what can you do besides force inclusion. Which is only risks alienating the kid even more.
Happy to say, he has made great progress and does eat lunch with the other kids now and even brought home a kid’s phone # yesterday. So lesson learned is love and support them while being patient.
Just wanted to say you’re definitely not intruding — we welcome all kinds of parenting voices! 🙂
I don’t mean to diminish what you and your daughter are experiencing, but I do think most parents and kids experience situations like this at some point in middle or high school.
My niece, who is neurotypical (wasn’t familiar with that term until this thread, so I hope I’m using it right!), had a fourth grade teacher who really focused on the kids’ relationships and problem-solving, and the difference in the class from the start of the year to the end was really striking. Unfortunately, her fifth grade teacher doesn’t seem to care about this aspect, and I’ve seen my niece regress.
Even though we’re a social species, a lot of how we relate to each other is cultural, and culture has to be learned. I understand that your daughter’s situation may make this process more challenging, but please know you’re not alone! And I give you mad props for recognizing the problem and being proactive about it! It’s scary to think of the number of kids learning to relate to each other by watching television.
This is off topic… kind of…but have you considered taking the new drink for her and putting it in a Shuyler friendly container?
I recommend that people who read this article please read his follow up article when he goes to lunch with his daughter at school. This article is the one that made me bawl my eyes out, the next one is the one that gave me hope that there are answers for her.
Thank you for introducing me to Rob & Schuyler. What a moving blog.
This broke a piece of my heart that never really recovered from how absolutely horrific middle school girls can be. You are an amazing dad.
This just about broke my heart. I was not special needs, yet I too ate lunch alone, every day. By the time I was a sophmore in high school, I begged my counselor to let me overload my school schedule so I would not have to take a lunch. What you are describing happens to neurotypical children as well. I recommend you read Please Stop Laughing at Me… and Please Stop Laughing at Us… by Jodee Blanco. I’m not sure how true the second book is (I believe and hope it is), but if it is all true you may want to see if you can get her into your child’s school. If only I had had that type of help when I was in school!
I went to a small, private elementry school where I didn’t have any friends. When I went to a larger middle school I had a few and when I got to highschool I gained a bunch. The conection was the larger the class size the more oppertunities for friends.
I have no disabilities but as a child had severe post traumatic stress and anxiety disorders that meant I didn’t handle much very well, and school was an impossible trial. I didn’t have anyone to have lunch with until I was 16- I had forgotten about it but I remember when I was in middle school my Dad offered to come and eat lunch with me every so often, and though other kids thought I was even weirder for it, it made me feel better about school because my Dad was my friend. I think you made a great choice going to eat with her, school is a tough road for many but it will get better with time.
Ugh, stories like this break my heart. I think a big problem is that young children don’t have enough interaction with a-typical children and don’t know how to act around them. Where we live there is an amazing pre-school that purposely mixes children of all levels of need. I think that if children are exposed to all types of people, it makes them a lot more comfortable around different children when they get older. Happiness and friends for all!
this made me tear up a little. I sure hope you find a solution. xx
Oh this makes my heart ache so much. I had a horrible time in Junior High to the point where I was pulled out and homeschooled for the last semester of it. I went back to regular HS and that went much better. I think it allowed everyone some time to mature and forget about the crap they put me through. Now, I have a daughter who is currently in 2nd grade, and I am so happy to hear from her teacher that she is best friends with a little girl in her class who has severe cerebral palsy and is nonverbal, in a wheelchair, has “helpers” in the class to assist with her daily needs, etc. According to her teacher, she’s taken her under her wing and has decided to be her friend. I hope this trait continues, and I hope that the other students in her class continue to be friends with this little girl who already has a rough enough time as it is, I’m sure. It makes me sad to think it could all change in a couple years.
Tears are still rolling down my face. That middle school pain never quite disapates completely… But things do change, Goddess Bless!
I think part of the problem is that kids don’t know. When I was in kindergarten, there was this kid who was special needs, but no one ever talked about it. So we just knew him as “that kid who talks funny and throws fits and doesn’t play right.” The deaf kids, we got along with: we all knew WHY they didn’t talk. But raoul? Nope.
It was the same later in fifth grade, with the Learning-disabled kids. We didn’t know what dyslexia was, or ADHD, or autism. We thought they were being weird on purpose, until one of our teachers had the idea to TELL US what those disorders were. Once we were allowed to talk about it, things got better.
And by the way, best buddies is fantastic. I’m in it at my high school, and the one thing I’ve really noticed is how much the club means to a lot of these guys. On both sides, I’ve seen kids pestering out Director to find out where their buddy is. I think a lot of the differnce comes My buddy and I are sort of an odd couple: I talk/think/everything to fast for most people, while most people go too fast her. But we’ve been buddies for four years, and I’ll honestly miss seeing her when I go to college. That’s more than I can say for a lot of people in my “normal” social circle.
(note: I’d like to clarify: I’m not a teen mom. My friend from Best Buddies linked this on her Facebook.)
Well, first of all this is the first offbeat post to ever make me cry. So I offer advice both as the kid who sat alone and one with some background in education.
What worked for me was small groups outside of school but with the same kids from school. Much easier to tackle 10 kids, who didn’t have 100 kids judging them, to form some bonds. Some were just deep/shallow enough to keep me from being thrown off of gym teams, others led to invites to join drama club and choir. Which led to a broader high school experience. But I still feel very “me” alone in the woods, with my best friend nature.
This kills me. When I was in 2nd grade, there was a blind girl, Amber, who also had some sort of mental disability. Super sweet and outgoing, but she flailed a little, and spoke a little slowly with a slightly misshapen cranium. She was maintreamed in my class that year. I was the ‘smart girl’ and my teacher paired her with me. She was so nice and funny, just not as fast as the rest of us. I took her to eat lunch with my friends and no one had any issues with her being around. She was only with us that year, but reading about your Schuyler reminded me of her. It makes me sad, I hope she was able to make friends down the road.
BTW…her hat kicks ass!
I can relate to the other side of the spectrum. Not now, as an adult (I have actually worked a lot with special needs-children) but I was very unsure of these “other kids” when I was little.
There was a factory near by parents house while growing up where people with Down Syndrom were making doorknobs and stuff. I was really scared, because (in my eyes), you could never know what they would do. I had a man run after me once, because he wanted to stroke my long white hair. For a 3 year old, that can be scary and sparked my childhood insecurity with special-need people.
I think it is terrible sad when children are lonely, whatever the reason, but there is a difference between being friends and being accepting.
I am a teacher in a class (teenagers) where we have a girl with Downs. The other children is incredibly accepting, but because of the intellectual difference, they are not friends, but “helpers”. It can be easier when a child has physical disabilities, but can still mentally relate to his classmates.
There is no final answer here, but a child with mental dissabilities may find equal friends in a special class, or special after-school activity. A child with physical disabilities may show the other kids something he is really good at. Maybe he can’t run, but he is a hell of a Mario-cart-driver.
And also, friendliness, acceptance and saying “hi” goes both ways.
I hope for the best for your daughter.
i think the school and the teacher should make what ur daugther has into a subject in class. i started crying reading your story. i dont feel like no child should be treated different just because they are different. maybe if they knew more about ur daugther and what does make her different they might have a different point of veiw on how to inter act with her, asked the school to set up a conference maybe you can host it and remind them everyone is different.
I’ve noticed in the past few years that asking questions has become more acceptable. I know when I was younger, a lot of kids didn’t know the right pc terms for certain disorders or disabilities. Often just asking a question results in being harrassed over word choice or percieved insensitivity. It can be hard for young kids like that to word questions without fear of offending.
There’s also the possibility that it has nothing to do with disability. Does she reach out to them? Are they intentionally rude or mean to her, ir is she just quiet and forgotten?