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.
I want to go to school with not so typical Kindergartner everyday … I feel actual pain thinking about our kids all alone. Thank you for sharing ~ Peace to you
oh my heart hurts reading this. i am so sorry that people are cruel and do not understand that everyone is different.
I don’t think that it’s just because people are cruel- at least, I don’t think that was the author’s intent. It certainly seems that way, though, doesn’t it? We hear so many stories about schoolage bullying these days…
I think the real problem is that kids have very little exposure to those who are different, and that’s not really their fault. It’s the parents’ job to introduce their children to diversity of all kinds, and to teach them and show them how to embrace it. Not to be merely “accepting” (like the other children in Schuyler’s class are about her being present), but engaging in questions, conversations (inviting Schuyler to eat with them and asking her why she does ___ a certain way, etc).
Even popular kids who visibly seem to have many friends can feel isolated, feel like they have no one sometimes. It’s unfortunately just the nature of being a child in this day and age; dealing with insecurities and questions about one’s self worth.
(We all need work on being inclusive, hm? This community is a great start to that!)
edit: I don’t mean to make this comment as a targeted response to you at all. I just want to believe that we’re all just a little socially misguided, not cruel. 🙂
Is there any way you can homeschool her? I was bullied relentlessly in Middle School. I wish my Mom had pulled me out. I’m 39 now and I still may as well wear an, ‘I’m a Loser’ t-shirt, from my days as the kicking can.
I don’t know if homeschooling would be the answer. My daughter is Autistic and she goes to a pre-K special program within our school system. We thought about homeschooling, but that would involve trying to get her IEP team at the house and more expense for us. Plus both her dad and I work. I do not think this is a bullying situation. It’s more or less that kids are kids and they do not know how to handle the situation. We are lucky that the school our daughter helps kids understand that kids who have some disability are the same, but move or learn in a different manner. As I read the follow up on the blog to this story, it seems that the kids who do not have a disability may not know how to deal or build a relationship. If anything else this may develop into something at her school to bridge a relationship between the world of those who have a disability and those who do not have one.
I agree. I was raised in a house where we were indirectly taught to ignore and run from our problems. Because my mother did not know how to teach us some basic skills to cope with social situations she pulled us out of school to homeschool when some minor problems arose. I feel that homeschool should not be used as a crutch for kids with social barriers.
wow, thank you for sharing this story even tho it made my heart a little sad 🙁
I taught at severe learning difficulties schools in England and loved watching and helping our students build friendships and relationships that I knew that they would not otherwise have had the opportunity to make had they been intergrated into mainstream classrooms.
people often make the argument that children should be intergrated for “social benefit” but as this Dads story proves, but pre-teen age socialisation doesn’t usually happen
Thanks for including the link to the follow up blog post from the Dad sharing the experience of sharing lunch with his daughter
As an argument for integrated classrooms, I work in a preschool (The Rise School, there are a few scattered throughout the U.S.) that is 50% special needs and 50% typically developing. It’s wonderful for the special needs kids to have a model, but it’s just as great for the typically developing kids to have a chance to develop that empathy for kids who are different. I hope that that empathy lasts throughout middle school (and beyond!) for them.
Both my children’s classrooms are integrated within our public school system. While they have no special needs, this situation has proven to be a wonderful experience for them both. In fact, at the last parent teacher conference, my son’s teacher broke into tears when she was telling me how he helps other students that are struggling with patience and empathy that most 7 year old boys do not have.
Wow, that’s an amazing idea; I can’t believe I’d never heard of it before! I think a large part of the problem is that there are only a few, if any, special needs students in any given group of students, so there’s little chance nor incentive for the neurotypical/typically-abled students to get to know the kids they might see as “weird”.
Of course, being as the atypical kids are statistically exactly that, it might be hard to ensure that most students get those opportunities for those interactions.
I also teach an inclusion program. I teach about half and half typically and non-typically developing 3-5 year olds in a Texas public school pre-k class. One of my biggest hopes for my program is that exposing children at this age to an inclusive setting and helping them learn to interact with each other will give them social and life skills to carry with them through their future. Programs like this are becoming much more predominant. Although they come a little late for your sweet girl, I can foresee a future where kids are more informed and exposed.
That’s rough. I work with kids ages 4 to 21 with emotional issues and some kids with autism that run the gambit on that spectrum. Some are verbal and aware of being left out while others are nonverbal and it’s harder to determine how they see the world, but they still know when things are not as they should be. I’m always glad to see parents that are advocates for their children because you are the ones that know your kid best and what’s going on in their lives. I wish I had a solution for you and Schuyler, but there is no easy fix it answer. You definitely handled it in the best way by being honest. I currently am the proud mama of a Kindergartner and there is a nonverbal special needs little girl with behavioral concerns in her class. My daughter has come home and told me “Janie” did this or that in class and they were told to ignore her. I tried to explain to my 6 year old that when when she is having these behaviors that she probably should ignore her if it is during work time in class, but when they have what little free time they get at school theses days to at least just say Hi. You never know what a little greeting or act of kindness could do to help this little girl and you never know one day she may just say hi back. Good luck! I know this was a long post, but I wish more people would try and teach their kids at a younger age when they are more open to things that this is the way it should be. My daughter still talks about “Janie” sometimes and I don’t know if she has taken my cue or not, but at least it has been put out there for her to absorb.
This makes my heart weep. It also makes me angry that society has deemed that everyone that is different should be ostracized. Some of the sweetest people I’ve had the pleasure of meeting and calling my friend (at one or another in my life) have been those with special needs. They always have so much love in their hearts that they just want to share. I hope that one day soon Schulyer’s classmates will see this.
Hey guys: I’ve just emailed Rob and asked if he wants to address your questions, especially those about why Schuyler is in public school. While he’s been blogging about this for years, I know it’s not feasible for everyone to go through years and years of his blog to find the answers to the questions you’re asking.
Basically: let’s please hold off on the “Why is she in public school in the first place/socialization doesn’t happen” questions and comments until he addresses them. I think it will be best to hear from him about a decision that’s already been made than to speculate or generalize.
Thanks. 🙂
thanks Stephanie
I wasn’t meaning my comment to come across as a “why is she in public school, it isn’t the right place for her” but reading it back I guess it could have been taken that way.
Each childs circumstances and needs due to their disabilities are as individualised as the children themselves.
I would love to hear more about her condition and her education tho 🙂
No worries! I didn’t think you or anyone was being out of line.. I mostly just didn’t want similar comments about the topic to pile up before he can respond. Rob’s awesome at responding. 😉
I was just reading this at my desk, first thing in the morning and it was so hard not to let the tears fall. It just breaks my heart to think of her sitting alone. My daughter is nearly 2 and hasn’t shown any sign of having special needs and the idea that someone one day will not want to be her friend already breaks my heart – let alone what your beautiful girl goes through. How lucky she is to have parents who love her so intensely. Thank you for sharing your story.
My heart aches for the pain your daughter is going through. But its so wonderful that she has such caring parents.
Rob I think you are a super dad! My nephew is autistic and I know how hard it is for him to socialize. After reading your blog it is an inspiration to see how much of an advocate you are for her!
I hope next time she wants something from the American Doll store it goes better. That place is crazy and by my house!
Best of luck and I look forward to reading more of your adventures 🙂
Thank you, Rob, for sharing. This just makes my heart ache. My two year old is not showing signs of special needs, but I have another on in the oven right now and who knows what the future holds. In any case, I agree with Stephanie that this is good not just for parents of children with special needs to read, but also parents of typical children, so that we can encourage our children to look for opportunities to be social and friendly – and also to help them understand how to act around somebody “different.”
I also wonder if your daughter’s school has some kind of peer counseling program or something like that which could be of assistance. When I was in high school, I was a peer counselor and our teacher asked us one day if somebody could volunteer to eat lunch with a girl who was not only always alone, but who also turned around to face her locker while she ate. I volunteered, and I was very nervous the first time that I approached her and asked if I could join her, and she did not really converse with me, but I ate with her once a week for a few months.
YEARS later, she wrote me a letter to thank me. I am mortified and embarrassed to say that I was busy when I received the letter and I never responded and then I lost it. I have tried to find her online to no avail. I so wish I had responded to her effort to reach out to me. I feel very terrible about it, and I often wonder about her and her story and how her life is going for her now.
In any case, my main point was that there might be teachers or a group at the school who would have some ideas.
You and your wife sound like wonderful parents — an d I cannot imagine how heartbreaking this realization must have been for you — and I look forward to reading your follow up blog posting and other parts of your blog when I am home and have more time.
I just wanted to say that I just read your follow up blog and found it very interesting, and I think Best Buddies sounds like a great program! It sounds so much better than the ad hoc thing my school did back in 1990. I am eager to bookmark your blog and read more about your family. Thanks for sharing.
THIS! THIS!!! You have to read Rob’s next post about what he found when he went and had lunch with Schuyler!!!
http://www.schuylersmonsterblog.com/2012/02/not-alone-although-not-entirely-not.html
Thank you for writing this. I’m in tears for your daughter. I didn’t have a disability but grew up at times, for grades, eating lunch by myself so I know the loneliness. I vowed to raise my children to be nice and friendly to all and do one unexpeted thing nice for someone everyday and this has reaffirmed that. While my daughter is only 8mo old I will instill in her that she should get to know everyone.
I’m the advisor of the Best Buddies chapter at the high school I teach at. I started the chapter last year and got a ton of support from Best Buddies Illinois to get things going. Best Buddies has been absolutely awesome for the students with and without special needs! It is one of the most popular clubs at my school. I would strongly suggest reaching out to the teachers at your daughter’s school and Best Buddies Texas to see about starting a chapter!
thank you, rob for sharing. this makes my heart ache. i have no words of wisdom, but send love + light…
what a courageous amazing daughter you are raising, she’s so blessed to have you.
i can relate to this so much. my son is 12 and has autism. he often says he doesn’t have any friends. he says he eats alone every day at lunch and during break he sits by himself. kids often tell him he is gross or say ewwww, go away to him. no one engages him to talk to him or plays with him. he hasn’t really experienced anyone bullying him yet but i am sure as he gets older, that will come. it breaks my heart every time he says he is lonely and sad. his teacher puts on a social group for kids with special needs. they meet two times a month and do fun things like bowling or going to a movie. it has helped a little, but not a lot. i also have one of his classmates that has autism come to our house a few times a month so he has someone he can play with. that has seemed to help too. i put my son in public school because there are no other schools here. i think he needs the socialization. i also think his special education teacher works with him in a way that i can’t.
I just died a little inside. This is terribly sad. She is lucky to have you guys.
Thank you so much for this post. My son is just 4 years old and has Childhood Apraxia of Speech, which greatly affects his ability to socialize with other children. He has started to realize he is different from other children at his preschool and often has a hard time socializing. We currently have his special educator meet with him at lunch time to help him converse with the other kids, but I know this isn’t something that can continue as he gets older. I totally understand the heartache, knowing your child is isolated because of something you have no control of. I will keep Schuyler in my thoughts and look forward to reading your blog.
crap situation. she sounds like a very strong young woman. glad she has you as an ally and parent, rob. i went through school with mental illness, and ate lunch alone a lot. i didn’t have parental support, and it really could have made so much difference for me.
best.
I think a huge part of the lesson in this is teaching our children the importance of kindness and befriending everyone.
My 4 year old has a friend with a sister that has Treacher Collins Syndrome and my son ADORES her he wants us to name our unborn daughter after her. And I am soooo proud and pray with all of my heart that this compassion and acceptance he has in his soul continues all his life.
How am I going to get any work done when Rob’s blog archives are available? What an amazing family.
As someone who’s been reading Rob’s blog for over a decade, I gotta say: have fun trying to leave the house this week! 🙂
First of all, how brave of you to post this. Having a sister with a disability it was always hard for me to understand why people wouldn’t fall in love with her or want to be friends with her? As I’m sure you see in Schuyler, I see some of the best and purest things in my sister. I became a special education teacher I think in part because I want to spend more time with this population. I will hold Schuyler and your family in my thoughts and prayers.
Thanks, everyone, for your comments. They really do mean the world to me. It’s really nice to be back at Offbeat Mama.
To quickly respond to the statements about why we have Schuyler in the public schools instead of homeschooling or private school, the simplest answer is that federal law provides a lot of protection for kids with disabilities, and guarantees (at least in theory) a level of education that is actually pretty extensive. Private schools aren’t bound by these laws, and while many provide excellent services and environments for kids with disabilities, none are actually required to do so. Living in Texas and being agnostics, we would have quite a search ahead of us for a private school that could provide a good secular education for her. Public education at the very least provides avenues to address problems, although we’ve seen how daunting that process can be in a bad school. Fortunately, Schuyler’s current school district is excellent for special education. That’s no accident; it’s actually the whole reason we moved here.
As for homeschooling, well, even if we didn’t need to work, which we do, I value high quality teachers enough to know that I am NOT one. In the same way that I wouldn’t try to do surgery on anyone in my family (well, not my immediate family, anyway), I will leave teaching to the professionals.
But we’ll continue to watch them closely.
ah, sounds like the education system is quite different between the UK and the USA then.
We have special schools which are funded by the government and have to meet standards and are inspected by OFSTED
Thanks for taking the time to share your reasonings.
p.s. I LOVE your daughters fashion sense 🙂
This story hurts my heart a little, but when I read his follow-up blog it made me feel better. It is sad that anyone is made to feel lonely or excluded. I would like to point out, however, that many people, even neurotypical people, experience some time in middle and high school in which they have no friends or are left out of social groups. It’s really because adolecents are not people at the peak of their inclusiveness and empathy. While we should be doing all we can to guide them in the right direction, it is a reality that we need to acknowlage when discussing this issue, both for kids with special needs and neurotypical kids. The Best Buddies program is one great tool in guiding kids into a more inclusive place.
Also, I jsut wanted to tell a little story to maybe give you some hope. One of my best friends has autism. I didn’t actually realize until after knowing her for a few months. She also described a relatively lonely childhood, but as an adult she has an active social life, goes on dates, and generally lives a “normal” life. At some point, those adolescents grow up into mature adults who are capable of forming true friendships with people who are different from them.
Oof. My heart hurts. Thank you for sharing, and for the reminder that our kids need excellent role models to learn how to live their lives embracing diversity and inclusion.
I’m sad. I’m sad for your daughter, for my son, for all the kids who go through this needlessly. I’m sad for us, as parents, who want to fix it and can’t. Hugs and love to you, and to all of us, compassion.