February 15, 2012

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 almost pass 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.

22 comments:

  1. I am relieved to have the painted picture of a sad, lonely Schuyler eating in solitary wiped away. Don't forget, middle school is awkward and hurtful and confusing for almost everyone, at least at times. It's part of the growing up experience, I think. It's an odd time between elementary and high school where everyone is hopped up on hormones and figuring out where they are socially. I hope the inclusion program finds someone awesome to pair her with. :)

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  2. While I'm sure it wasn't exactly comfortable to see what's going on, having the understanding is such a gift. Everything you've written about this gives me hope that it *will* come together for Schuyler and for many of our children...with our help. I hope the Best Buddies program provides that and look forward to reading more as it unfolds.

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  3. I love your blog entries. Thanks for sharing your journey. I have a daughter with Down syndrome. She is quite social but as I read your entry, I felt a lot of what you described. Best Buddies is a great program. I look forward to hearing about that leg of your journey.

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  4. This was such a great thing you did Rob, and I was one of the lurkers who was thinking 'I hope he eats lunch with her!!!!!' - I agree with julie, how could there possibly be any other answer and how could you possibly help Schuyler if you don't even know what's going on. I think the visit and lunch yielded remarkable insight into what's happening/not happening.

    My gal is 15. Autism. She eats lunch in the Library every single day. By herself. Because the cafeteria is TOO MUCH - too much everything - sights, sounds, smells. You would think it would be lonely. Until I ate with her last year and sat with her at the table. At least 15-20 people came up to her while she ate, touched her and said 'Hi' and asked about something. And I honestly don't think it was because I was there. I can actually see why she likes the Library - she's the Mayor, that's why. I don't tell you this to compare to Schuyler or suggest that eating alone is preferred, I'm just saying that sometimes things aren't what they seem to be.

    I also was thinking - what if you pulled in this fabulous Special Ed Director and team and described the situation - they might have some great ideas on small steps that gets Schuyler more involved with her peers and not on the island.

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  5. Where I teach (a HS), there is a kind of "occupational therapy" program for kids who need help with social relationships. As you can imagine, most of the students are on the aspergers/autism spectrum, but not all are. These are all mainstream kids, and they simply meet once per week with a school psychologist to work on, I don't know exactly what to call it, social navigation? It helps a lot of kids quite a bit. All that stuff that seems like it should come "naturally" is really hard for a lot of kids, many with diagnosed disabilities, but some without. Is this a part of Schuyler's IEP? If not, you might want to consider adding it for next year, if you can. Hopefully a therapist would have specific tools and techniques that Schuyler can use to help navigate the difficult waters of social interaction.

    What I've seen as a teacher, is that once a child has friends, those friends are really willing to look past or even embrace a lot of "differences." It's making the friends in the first place that is sometimes almost impossibly hard. The nice thing for Schuyler is that she's cool, she has interesting interests to share, she really has things going for her that could make a friendship really feel two-way. That's a lot to hang a hat on.

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  6. I can see how dancing between both "worlds" can be hard. I sometimes wonder if my daughter will have these same issues. Though she may be more impacted than Schuyler so who knows. I do know that I remember lunch time and man it was awful. I set with the "nerds" mostly or outcasts (I’d like to add now nerds are my fav people and friends lol) ..I didn’t really fit in but I sat with them because it beat sitting alone since I was kinda awkward and shy. Eventually we grow up and lunch time isn’t really an issue! But for those few years I dreaded lunch every day.

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  7. Rob, I have always done what my daughter asked of me (withing reason) simply because of the isolation of the hospital and the exclusion in some school activities made her feel set apart. My daughter has congenital heart disease and she got sick often. She is also the only child I know of in her elementary school to have her picture posted in every staff lounge with health notes on it. I can tell you that to this day (she will be 20 in May) her elementary classmates still ask after her when we see them. And I think by our accepting and explaining her differences it made it easier for the other students to relate. Also, I noticed that she would have particular children who would ask her to join them and never teased her about her exclusion in certain PE activities. We were lucky. Elementary school was on a military base in California. I remember thinking at the time that she wasn't feeling included and went out of my way to be a great classroom mom and look for ways for her to make friends. It happened in High School and I had nothing to do with it. I like to think that by putting her in social situations and explaining the reasoning - it helped.

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  8. THANK you for your follow up on this topic. It is a relief to erase the picture most of us were imagining... and while I was one who advised against joining her for lunch-how else would you have learned this had you not? And of course! Julie's wisdom of what other answer is there... pardon my gaff, but it was given with only good thoughts. It hurts to hear that middleschoolers could do anything other than embrace your remarkable daughter. You bring up good points-in some ways she doesn't fit in either camp. There is still merit in exploring some of the student mentoring ideas. I hope things improve-I have no doubt that one way or another, Schuyler will pave her way. And as another commenter commented- you are a gifted writer-keep up the good work-we learn from you!

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  9. I have to admit that I too had visions of Schuyler completely alone, the only person sitting at a table in the furthest corner of the lunch room. I am glad this is not the case, yet I totally understand what you're saying. I really hope that the Best Buddies program goes forward and that she can be paired up with someone really great that can take her under their wing.

    *And I LOVE her fuzzy purple hat!

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  10. Here is a great article on how parents can help to give their children a happy childhood even when school can royally suck.

    http://greatergood.berkeley.edu/raising_happiness/post/rigging_kids_brains_for_happy_memories/

    I, for the record, had a horrible time in middle school. Rob, you are such a funny guy (I love your writing!), that I'm sure you and Schuyler are laughing often. What a great way to counter the pain of middle school!

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  11. Argh. My link got cut off. Instead, you can search google for the article entitled, "Rigging Kids’ Brains for Happy Memories". (By the way, I'm not associated with the Greater Good Science Center. I just think it's a great article, and I wished that there was more laughter and optimism in my home when I was growing up.)

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  12. Rob, this may be kind of a naive question, but have you ever thought of having Schuyler pick one of her friends and maybe have them over to stay the night? Maybe the little girl that you liked so much? Maybe they could bond a little more that way -- just a one on one situation. Just a thought...

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  13. Just thinking that I cannot remember middle school lunch at AT ALL. Granted, I am 40+ years old and can't remember lots of things. But I have a feeling that middle school lunch was so horrible that I (neurotypical, slightly-to-significantly dorky) have completely blocked it all out. Also relieved to know that Schuyler is not completely alone (even if she is not completely not alone). You don't need a stranger on the Internet to tell you that you are an amazing parent, but . . . you are an amazing parent. I have a toddler son and I get crushed just thinking about someone even slightly bruising his feelings. I hope I don't face the same middle-school challenges you are, but if I do, hope I can meet them with the same intelligence and grace.

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  14. Just my two cents: my brother in law has severe epilepsy and is mentally impaired. He is a funny, loving guy but because of the effects of his medication and the damage caused by his epilesy over the years (he is 34 years old) he cannot relate very well socially. He has been in the Best Buddies program here in Florida for about ten years now and it is wonderful. He has a male best buddy that helps him with social skills by taking him out and guiding him. They play basketball, watch movies, go out to eat etc. The Best Buddies program has been a blessing for our family.

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  15. I wanted to say something earlier but forgot: having my dad or mom come eat lunch with me in middle school would have been amazing. And you are super excellent for doing it.

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  16. My older sister is involved with a local Best Buddies organization near her college, and I know she and the other young adults involved really enjoy themselves. At my high school (and I'm sure at the others in PISD) there is a club called STARS that has a lot of fun events on Friday afternoons attended by both neurotypical students and students in special ed. I have quite a few friends in it, and it sounds like the club is great. I think you will get a great deal of interest and enthusiasm from the other kids in Schuyler's class about getting involved in a program like Best Buddies. Best of luck to you and Schuyler. Middle school is tough socially for everyone, but I definitely think Schuyler will do well with a little bit of help.

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  17. I"m glad to know that Schuyler isn't eating alone. I remember middle school, and like everyone said, it wasn't easy socially.

    There was one part of your post that hit home to me as an individual with mild disabilities. It was the part where you mentioned "passing." There were many times growing up in which I passed, or tried to, as a sighted person. It only got me into trouble, either physically or emotionally because either I wouldn't use my cane when I should have been or told someone I saw something when I didn't really see the object he or she inquired about. I finally learned after many years that passing will get me nowhere. It's best to be open and honest with people about what my limitations are.

    Good luck with navigating this scene. I'm thinking of both of you.

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  18. I'm so glad that the scene you panted isn't the same scene many of us were imagining. Like everyone has said, middle school can be tough socially for everyone. I think I have blocked it out of my memory for that very reason. smile

    There is one part of your post that rang so true with me. It's the part where you described her not being neurotypical yet not being disabled enough. I understand this oh so well as someone with low vision. I'm not sighted yet not blind enough for the general public to understand why I need certain adaptations. Being in the middle sucks! I totally get that.

    If I may offer some advice regarding this issue, passing as neurotypical is not the way she should handle this sdituation. I tried to pass as sighted, but it produced more problems than it solved. For example, I refused to use my white cane. As you can imagine, I fell more than was necessary because I ran into objects that I pretended to see and told people I saw. I would only use my cane when working with my TVI (teacher of the visually impaired) or COMS (certified orientation and mobility specialist.) I think the TVI and COMS knew what I was up to, but they didn't confront me about it. I wish they would have. Eventually, like when I sarted college, I realized that using the cane all the time was a smart idea.

    The same issues were present in my adaptive tech training. My TVI would install speech or screen enlargement software on the computer (Apple IIGS and Macintosh at the time), but I decided that I didn't need these adaptations. Therefore, I would uninstall them or not use them as soon as she let my home. I imagine it was a battle to get me to use them at all. I'm sure my TVI and mother blocked those memories out because they were witnessing my stubbornness. LOL Poor TVI. I really have to feel sorry for her.

    So, I guess what I"m saying in my long winded way is passing is understandable and even expected at this age. If passing is what gets Schuyler friends, I can see why she's doing it, but if she needs to use adaptations, i.e. AAC, for better understanding, people who truly care and truly accept her for who she is won't care that she uses these devices. On the other hand, if people tease her about AAC, then they aren't worth her time. I learned that lesson too. Children who teased me because of my VI (visual impairment) were insecure in their own skin.

    I hope things work out. If Schuyler ever wants to talk to an adult who has been through middle school, please don't hesitate to contact me. I'd be glad to talk to her. I just wish I lived closer so that I could take her out to lunch sometimes.

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  19. "Schuyler tries hard but doesn't quite succeed at being typical. Apparently she's not entirely successful at being disabled, either"

    Well said-I know exactly what you mean...middle ground can be an interesting place to stand...

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  20. I am so glad you went to lunch with your daughter! Sometimes the only real way to 'know' is to experience it. Knowing what really was going on gave you an insight not all parents will have. What a relief for you as a parent to no longer envision your daughter all alone eating with no one! And what a wonderful opportunity to help her learn to be 'inclusive' too. I also have to agree with others who have said "middle school is just hard" because you do not need to be special needs to find yourself with no friends, no one to sit with at lunch, no one to talk to you, or to be bullied for that matter. The age is difficult for all children equally.

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  21. Thank you for this! It's an interesting perspective, and useful to those people who find it easier to group all the "different" people together. I wonder if those other kids at the table/island see Schuyler as one of them?

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  22. I think it's great that you ate lunch with your daughter. I have fond memories of my mom eating lunch with me occasionally all the way from elementary through high school. I wasn't a special needs kid, but I was weird and didn't have a lot of friends, and I really loved showing off my mom to people, cause she's just that awesome, and I think you are, too!

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