My heart leaps when I read these articles about parents who truly care about their child and how to bring them into a world that, in most cases, is so judgmental with those who have special needs or even those who are ESL students.
I struggled a good part of my life as a student with special needs and still have some painful memories of how cruel kids can be . ESP on the play ground.
The wonderful end to my story is that I managed to get through school, move on to college and find a place in the world ..We all do , but for some it seems like it might never happen.
I can remember my father driving me to school and I would dread being dropped off as school for me ... for the most part was torture.
I am amazed at my students here at the Muse and how they all have no idea of any difference between a child that has special needs from one who is highly functioning. We all have special needs ... lets face it.. in some capacity or another we all do... or we at least should all be treated SPECIAL for we all truly are.
This article was posted in the latest Off Beat Momma.
I wanted to share it with those of you who are checking in on my blog. I have had some folks ask me why I feel kids are so important to me..? Kids are the most honest and genuine creatures on the planet. Rob Rummel-Hudson has written for us before about his perspectives on special needs parenting. While this post from his blog 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. "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 spmetimes they're just not sure how. She seemed to understand why that might be, even before I said more. "They talk so fast," she said. 'I can't talk like they do." I didn't have any great answers for Schuyler, and I didn't pretend like I did. I could only tell her that yeah, this is hard, but we'd think of something and we'd find a way to make things better. As has been the case many times before, she didn't seem disappointed by that sad, shitty answer. We could fight that particular monster another time. I think mostly she just needed to put it out there. |
Not alone, although not entirely not alone, either
A few days ago, when Schuyler asked "Are you going to come eat lunch with me?", some of you thought it was a bad idea, maybe leading to further ostracization from her peers. But I think everyone knew what I was going to do. And, really, how else was that going to go down? How do you tell a child who is experiencing problems making friends that yes, you know she wants you to come eat lunch with her at school, but sorry, that's just not going to happen? As Julie said, "She's lonely and she wants to eat lunch with her father. How is there more than one possible answer to that?"
So yeah. Yesterday, with the school's permission, I ate lunch with Schuyler in her school cafeteria. She was thrilled, I had a good time, and perhaps most importantly, I got a better idea of what's really going on.
It's... complicated, I guess.
If you, like me, were imagining Schuyler sitting lonely and forlorn by herself at the lunch table, I am very happy to report that she's not. Not even close. As soon as she came down to the main office to fetch me, she took me to meet the people at her table. This was not what I expected.
Schuyler doesn't eat lunch alone. But she kind of does, in a way.
Schuyler's table is populated by a regular group of kids who are familiar with each other. It's apparently the same ones every day. They are kids with special needs, and they all sit together and are checked on periodically by teachers. They are taken care of, for sure, and for the most part they seem to get along just fine. I can't tell you how the kids feel about it, other than my own. I got the impression that many of the kids at the table have somewhat more serious impairments than Schuyler. They appeared to feel safe at their table, and that is tremendously important. It's probably the MOST important factor of all.
But as I said before, it's complicated. Schuyler and I talked entirely to each other, almost completely apart from the rest. She didn't engage with them, and they didn't engage with her. There was one notable and very encouraging exception.
There was an awesome little girl sitting next to Schuyler with whom I chatted over the course of lunch. In our conversation, I asked her if their lunch table crew was assigned and if everyone else was seated in a specific place. She said that no, anyone can sit anywhere they want, or (perhaps more to the point) with whomever the want. Schuyler piped in that there's never room at any of the other tables. "No one wants us to sit with them," she said.
So I don't know. On one hand, I understand how their table can be a sanctuary, and a way for the teachers to monitor everyone and make sure their needs are being met. That's not a small thing, and we have no problem with the special education team setting up this arrangement if they feel it works best for the kids. These teachers take their kids seriously, both educationally and as a community. Ultimately, we trust this special education team, completely.
At the same time, however, the thought of Schuyler's table as a kind of typical-kid-enforced Island of Misfit Toys, that saddens me. It happens, a lot, and from what I remember of that age, it is perhaps inevitable on some level. But still.
As we discussed the lunch situation after Schuyler got home, something very interesting began to reveal itself. I understood why Schuyler said she eats alone now. She doesn't really identify the people who sit at her lunch table as her friends, which was a little baffling at first since she was incredibly nice to them and introduced me to them all. And that little girl I talked to was great. It's not my business to describe someone else's child to you, so I'll simply say that her impairment appeared to be entirely or mostly physical, not developmental. She seemed to really like Schuyler and also took care of some of the other kids despite her impairment. I liked her immediately. I have high hopes for this relationship, assuming they're not actually mortal enemies and I just didn't pick up on that.
But much like with her typical classmates, Schuyler hasn't made connections with any of them, not on the level of real friendship. And by the time I left the school, I suddenly understood why. Schuyler may just have the same problem with the kids at her lunch table that she does with everyone else.
The neurotypical kids at Schuyler's school may not understand how to build authentic relationships with persons with disabilities. But actually, neither does Schuyler.
She's different, particularly in how she communicates, and that can be a daunting obstacle for typical kids. But she's equally stymied by the communication challenges between her and kids with more serious developmental disabilities. I've written before about how Schuyler stands astride two worlds, being ambulatory and also socially adaptable enough to almostpass in the typical world but also being significantly challenged enough to be forever different.
Sometimes that duality is a gift. In this case, when meaningful friendships are hard enough for her to understand, much less form, it is probably standing in her way. It's not that she doesn't see value in her special education classmates. Much to the contrary; she is as loving and as fiercely protective of them as ever. But her ideas of what friendship means are probably delivered to her mostly through a neurotypical lens, via television and through what she observes in her integrated classes. Her understanding of those typical friendships is limited, and extremely naive. Schuyler tries hard but doesn't quite succeed at being typical. Apparently she's not entirely successful at being disabled, either.
The good news is that Schuyler's exceptional special education director is extremely open and enthusiastic about getting on board with a mentoring program like Best Buddies Texas. A mentoring program would be a very important step in teaching Schuyler's typical classmates how she can be a valued friend and classmate.
It hadn't really occurred to us until now that Schuyler might need a little extra help in that area as well. She's so close. I'm confident that she'll get there.
So yeah. Yesterday, with the school's permission, I ate lunch with Schuyler in her school cafeteria. She was thrilled, I had a good time, and perhaps most importantly, I got a better idea of what's really going on.
It's... complicated, I guess.
If you, like me, were imagining Schuyler sitting lonely and forlorn by herself at the lunch table, I am very happy to report that she's not. Not even close. As soon as she came down to the main office to fetch me, she took me to meet the people at her table. This was not what I expected.
Schuyler doesn't eat lunch alone. But she kind of does, in a way.
Schuyler's table is populated by a regular group of kids who are familiar with each other. It's apparently the same ones every day. They are kids with special needs, and they all sit together and are checked on periodically by teachers. They are taken care of, for sure, and for the most part they seem to get along just fine. I can't tell you how the kids feel about it, other than my own. I got the impression that many of the kids at the table have somewhat more serious impairments than Schuyler. They appeared to feel safe at their table, and that is tremendously important. It's probably the MOST important factor of all.
But as I said before, it's complicated. Schuyler and I talked entirely to each other, almost completely apart from the rest. She didn't engage with them, and they didn't engage with her. There was one notable and very encouraging exception.
There was an awesome little girl sitting next to Schuyler with whom I chatted over the course of lunch. In our conversation, I asked her if their lunch table crew was assigned and if everyone else was seated in a specific place. She said that no, anyone can sit anywhere they want, or (perhaps more to the point) with whomever the want. Schuyler piped in that there's never room at any of the other tables. "No one wants us to sit with them," she said.
So I don't know. On one hand, I understand how their table can be a sanctuary, and a way for the teachers to monitor everyone and make sure their needs are being met. That's not a small thing, and we have no problem with the special education team setting up this arrangement if they feel it works best for the kids. These teachers take their kids seriously, both educationally and as a community. Ultimately, we trust this special education team, completely.
At the same time, however, the thought of Schuyler's table as a kind of typical-kid-enforced Island of Misfit Toys, that saddens me. It happens, a lot, and from what I remember of that age, it is perhaps inevitable on some level. But still.
As we discussed the lunch situation after Schuyler got home, something very interesting began to reveal itself. I understood why Schuyler said she eats alone now. She doesn't really identify the people who sit at her lunch table as her friends, which was a little baffling at first since she was incredibly nice to them and introduced me to them all. And that little girl I talked to was great. It's not my business to describe someone else's child to you, so I'll simply say that her impairment appeared to be entirely or mostly physical, not developmental. She seemed to really like Schuyler and also took care of some of the other kids despite her impairment. I liked her immediately. I have high hopes for this relationship, assuming they're not actually mortal enemies and I just didn't pick up on that.
But much like with her typical classmates, Schuyler hasn't made connections with any of them, not on the level of real friendship. And by the time I left the school, I suddenly understood why. Schuyler may just have the same problem with the kids at her lunch table that she does with everyone else.
The neurotypical kids at Schuyler's school may not understand how to build authentic relationships with persons with disabilities. But actually, neither does Schuyler.
She's different, particularly in how she communicates, and that can be a daunting obstacle for typical kids. But she's equally stymied by the communication challenges between her and kids with more serious developmental disabilities. I've written before about how Schuyler stands astride two worlds, being ambulatory and also socially adaptable enough to almostpass in the typical world but also being significantly challenged enough to be forever different.
Sometimes that duality is a gift. In this case, when meaningful friendships are hard enough for her to understand, much less form, it is probably standing in her way. It's not that she doesn't see value in her special education classmates. Much to the contrary; she is as loving and as fiercely protective of them as ever. But her ideas of what friendship means are probably delivered to her mostly through a neurotypical lens, via television and through what she observes in her integrated classes. Her understanding of those typical friendships is limited, and extremely naive. Schuyler tries hard but doesn't quite succeed at being typical. Apparently she's not entirely successful at being disabled, either.
The good news is that Schuyler's exceptional special education director is extremely open and enthusiastic about getting on board with a mentoring program like Best Buddies Texas. A mentoring program would be a very important step in teaching Schuyler's typical classmates how she can be a valued friend and classmate.
It hadn't really occurred to us until now that Schuyler might need a little extra help in that area as well. She's so close. I'm confident that she'll get there.
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