Touch
We received an email from one of Schuyler’s teachers this week.
Well. That is VERY rarely a good way to start.
There’s a problem. Schuyler is touching her classmates. Not so much her fellow special ed students, because those interactions are watched and regulated pretty closely. No, it’s neurotypical kids who are getting touched by Schuyler, and some of them don’t like it. A few of them have complained to the teacher about it, and thus the email to her parents.
This is a tricky situation. On one hand, the email made clear, Schuyler isn’t touching anyone inappropriately. The teacher said it wasn’t the nature of the touching itself, but just the fact that it’s happening. On the other hand, I recognize that students have an absolute right not to be touched if it makes them uncomfortable. I would never make the argument otherwise. Well, of course not.
At the same time, however, there are several ways that this can be approached, and the path that a teacher takes, particularly a mainstream teacher, tells us a great deal about the expectations of both a school and society at large with regard to kids who develop differently from birth.
There’s a near-universal fact about nonverbal kids who don’t have social or sensory issues. They touch. They’re not creepy gropers or anything, but a kid who has grown up without the benefit of spoken language is a kid who has spent his or her life tugging at shirt sleeves, touching hands, drawing attention to their faces, practically begging the world around them to try to understand what they need to communicate. Nonverbal kids touch. They touch as little children, but as they get older and their skills improve (if they do), the need to physically in react with others never goes away. This is particularly true of their interactions with their neurotypical peers. Schuyler touches other kids because she is desperate for them to hear her, and to understand her.
So what is to be done? The schools have their own policies and their own procedures, and that’s fine. I get that. Every kid has the protected right to have their need for personal space to be respected. That’s a very real concern.
But at the same time, there’s a teachable moment here. As often as I’m told I need to engage in those moments, I’m surprised and frankly disappointed that in this case, that moment has been ignored. There’s an opportunity to explain to these mainstream students about how a kid like Schuyler communicates, and why it is that she may be touching them. It’s a chance to expand our society’s tolerance for the obstacles that kids like Schuyler face.
But that’s not what happened here, and frankly, the conversations I’ve had with other parents suggest it rarely happens anywhere. We live in a society where the public schools require a level of conformity that can be very challenging for kids like ours to meet. There’s an inflexibility that reenforces that conformity; some schools even have a zero tolerance approach to touching, where not only are teachers forbidden to have physical contact with students, but even the students aren’t allowed to touch. I understand the fears and the very real abuses that have led us to this place. But for kids like Schuyler, such rigidity means that not only do they have to work hard to integrate with their mainstream peers, but the threat of punishment for their different ways of interacting with others requires them to expend energy trying to pass as neurotypical.
Passing is hard for our kids. It’s hard, and it’s usually a waste of time and damaging to their already fragile self-esteem. And when they fail to pass, as they are almost always doomed to, they feel that failure keenly. Schuyler understands that she’s different, and now she understands that if she wants to succeed in her school, she’s got a choice to make. The choice that the school deems as appropriate is the one where she doesn’t communicate, where she learns to keep her hands to herself, and her words to herself.
I’m not sure what the answer is. But part of that answer could involve trying to expand the level of tolerance for how our different kids communicate, how they feel that they literally need to reach out, and how a little bit of patience and focus could make the difference in the life of someone who is desperate to be understood.
As for us, her parents, I won’t pretend that either of us can be entirely or even mostly objective about this. I’m not sure we even should be. But we will talk to Schuyler about the problem, as we have many times before. We will try to convince her of the need to keep her hands to herself, even when it means that she is ignored, walked away from, silenced. We will try to convince her to pass, even though that feels entirely wrong, and hope that in doing so, we’re not smothering a tiny piece of our little girl, the piece that reaches out to be understood.
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
I agree with you that this was a missed opportunity for the kids to learn more of tolerance, and I sincerely hope you will send a copy of your article to the District Spec Ed director, copying to the principal and the spec ed lead at Schuyler’s school, and to her teacher. Don’t let them quench that spark she’s got alive in wanting to communicate with everyone.
Hi — As you say, is this not a teachable moment for the teacher to share with students that Schuyler may touch them when she’s trying to express herself and that the appropriate response is: “Do you want to tell me something Scuyler?”
Has there been no intervention on the part of the teachers to explain why Schuyler would touch as part of a communication attempt?
Is the only solution that Schuyler keep her hands to herself?
If so, that is VERY disappointing and not inclusive.
Oh – this e- mail makes me so sad. I have a 12-year old son with a rare chromosome disorder, and I follow your blog and Schulyer’s journey. It’s not so different from our own. Re: touching. I get where the school is going with this but still it makes me sad. She has less avenues of communication than her “typical” classmates and if it is not “inappropriate” touching then I think they need to think about it and work with both her and the classmates. Is it really not OK to tap a shoulder or elbow to get someones attention? Or to work with her on some other way of attention getting. I just feel that they want to silence her even more and that makes me sad.
to Schuyler:
“Let your smile change the world, but don’t let the world change your smile.”
Get the guidance counselor involved, have a meeting with the classroom teacher, and make the necessary classroom education happen.
This teachable moment (like so many others!)has got to be courtesy of you, Rob, because everyone else has dropped the ball. More likely, they haven’t made the connections you have, and don’t understand just how important touching is for Schuyler to communicate.
Yes, everyone has the right to their personal space. No, a tap on the shoulder or arm is NOT a violation of that space. And as Louise pointed out, those children need to be educated that the POLITE, CORRECT, AND ONLY response to her tap on their arm or shoulder is, “Do you want to tell me something, Schuyler?”
I think it’s critical that her classmates not only understand what Schuyler is trying to do, they need to understand what THEIR response must be. Responding to her arm/shoulder tap is basic politeness, and we all know that kids need those lessons taught over and over!
I have such mixed feelings reading this. My first thought was asking when did we “evolve” to the point of not being able to deal with being touched by someone else when the touching was not inappropriate. Touch is of course one of our primary senses and we all use it to some degree each day. Beyond that, we used to be able to hug and show kindness towards each other, even getting in each other’s
“personal space” without worry or incident. When did we decide that because some touch comes inappropriately, ALL touch is inappropriate, and when did we teach our children that message. Obviously there are people with certain types of disabilities for whom touch is truly an invasion and we must be sensitive to that. But I totally agree that responding to a tap with “Do you want to tell me something, Schulyer?” is a far more reasonable response to a tap on the shoulder than turning it into an offense. What does that teach Schulyer and what does it also teach the student she touched?
My 9 year old daughter has Down syndrome. One of the common characteristics of people with Down syndrome is their affection and desire for closeness. Of course not all people with DS are like this but my daughter fits that generalization completely. My daughter loves to hug and be hugged. I’ve had ample teaching moments with this, like when she hugged the man who came to spray our home for bugs. He told me it was okay because he has kids, and I told him no it was definitely not okay because she didn’t know him. She’s become a little more choosy in terms of whom she directs her affection toward, but it is still something she seeks out frequently. Fortunately she goes to a school where the staff are able to see the difference between appropriate and inappropriate touch and don’t make a huge deal about that particular behavior.
Yes, this is a teachable moment, yet I would argue that it should involve teaching the other kids in the class as much, if not more, than working with Schulyer.
Years ago when my very intelligent and usually thoughtful NT son was a high school junior and on the cross-country team (and far from one of the best runners), he told me he “hated” one of the boys the team — this was very unusual language for him — because the boy would often grab him and try to hold him back so he could get ahead of my son when they were running. It turned out that my son had absolutely no idea that this boy was mentally challenged and apparently did not understand that his behavior was inappropriate.
I tell this anecdote to point out that even very sophisticated teens may be unaware of what we adults think is obvious and/or may not know how to handle situations like this.
I would’ve asked her teachers (mainstream and spec. ed.) if you could talk with her classmates and explain why she does and acts the way she does. This might’ve made their tolerance a bit better, and it could also help others in the future! I hope all goes well!
Wow, this is a dilemma! I totally understand where Schuyler is coming from … but I totally don’t think everyone in the class should be ‘made’ to accept touching that they don’t want (thinking of my Sensory Integration Disorder kid who can’t stand to be touched). Neither do I think that Schuyler should be ‘banned’ from touching other kids. I heard that, long ago, there used to be a travelling classroom for teacher education, where they could experience one class from the experiential viewpoint of a sensory integration disorder person – and how enlightening that was. Perhaps the BEST way to approach tis is to have a project that the whole class can do – each child (and this can include Schuyler) spends a day in a wheelchair, or deaf, or blind, or non-verbal – and reports back on what were the hardest parts? Perhaps THAT would teach, in a less forced way. And I fail to see why Schuyler wouldn’t be allowed to find out who doesn’t want to be touched and who doesn’t mind. Why should she be denied this valuable part of her communication skillset for ALL students if some of them are OK with it? I was told a couple of years ago that I wasn’t allowed to hug my Girl Guides (I’m a leader). My response was that I would never force a hug on anybody, but if some of my girls, with whom I’ve worked for many years, come up and want a hug – they’ve got it! I’m in a privileged position there of being a volunteer – if they want to fire me, too bad for them! But it all comes back to having a blinkered approach – which way too many of our institutions cling to, rather than taking the time and thought to come up with a customized and COMMON-SENSE (God forbid!) solution on a case-by-case basis.
“but I totally don’t think everyone in the class should be ‘made’ to accept touching that they don’t want”
Not to nit pick, but where did anyone say that kids should be made to accept unwanted touching? Not only did I not say that, but I said pretty much the exact opposite. And unless I missed it, I don’t think anyone else did, either.
Has the teacher done a unit with the class about non verbal communication? Schuyler’s touching is not a bad thing, and should not be extinguished, as it is her need for input and communication. I am a behavioral therapist to children on the autism spectrum, and many times- verbal or not- my student’s do not express their feelings well through words, but can express themselves well through other mediums. Schuyler’s teacher should do a unit on all types of communication, include written expression, and explain sensory needs and input (perhaps watch the scene in Temple Grandin, with the ‘squeeze machine’). I would encourage her to explain different needs to the class, and keep in mind that if touching makes anyone uncomfortable, that is ok, and to let someone know. But if it is child specific- that is not ok. There needs to be an understanding of why an action is happening- getting to the communication she is trying to convey and then give her appropriate outlets for that communication, but not extinguish it. ALL ‘behaviors’ are communications- and they all must be treated as such- never ignored or shamed.
This sucks. I can imagine that a computer generated down at hand level “hey you” or “excuse me” would not be nearly as effective as a spoken, “hey” right at face or ear level, and that a ton of interaction would be missed out on when unable to reach out to be understood. I can also imagine that as wonderful as the speaking devices are they are unable to express emotion as clearly as a voice or a touch. I hope that the school will indeed make this a “teaching moment” but after being through difficult situations with a special needs foster child through the public school system, I am not optimistic for you guys. Good luck!
Hard issue. I imagine it’s even tougher for parents of boys, and of physically larger individuals, especially later in adolescence as sexual curiosity becomes a factor.
that is where the importance of privacy comes up. I have worked with lots of non verbal teenager’s, and as those feelings come up (which they will, in any child of teen-age), a social story and explanation of feelings and appropriate outlets and choices for them is important. If a child has a crush on someone, it needs to be explained that those feelings are normal, and OK- but there are ways to go about dealing with those feelings appropriately and give positive choices- give a high five, ask to do something together, etc. Or ask for private time and let there be an appropriate-private place for the child to go. The correlation between shame and normal adolescent feelings and development- especially in special needs children- because of sensory seeking actions- is often misunderstood, instead of confronted as a normal part of development.
I am the mother of a big-for-his-age, 12½ yr old, 6th grade Asperger son (same school district as Schuyler and we’ve also had to work hard this year). He gets in trouble for touching at school and it has never been inappropriate. He is continuing to practice his social skills, continuing to learn about ‘personal bubbles’ and how they are different for each person, and that each person’s bubble can change its size. It is not an easy concept for him, especially when he sees friends patting each other on the back, hugging, etc. and they don’t get in trouble.
My son has poor social skills because of being on the autism spectrum.
Schuyler is just trying to communicate!
Surely something can be worked out where there is a certain spot on person’s arm that she is allowed to touch to get that person’s attention.
I have extremely mixed feelings about this. My now 14yo was non-verbal till she was about 6 but she was also very sensory defensive so touching her would freak her out and so she would respond by touching others the only way that didn’t bother her which was the arm tap. It never ended up being an issue on our end.
Fast forward to 6th grade and i had to be the one to talk to the the school counselor to get a similar issue addressed. A fellow child with sensory seeking behaviors felt the need to hug my daughter every single time she saw her and touch her whenever she talked directly to her. My own child won’t hug me because she says the sensation hurts and I had to in turn have this conversation about an overly touchy child.
It is a teachable moment not only in the school but also at home because while many people have personal space issues there needs to be an approaiate way to address others. Of course this child is not doing “bad” touching but you have to teach what is acceptable and that may be a shoulder or an arm tap while a leg shake may be not ok. Working with the children to see what they would feel comfortable with is equally important. The outnumber our children often and instead of forcing them to adjust to our children both sides need to adjust and meet even if its the NT who have to adjust more.
Wow, I never really thought about the reason behind a non-verbal person to touch. The school might have missed it, but I got this teachable moment loud and clear.
I don’t know what the answer is here, but I hope that one is found to let Schuyler continue to communicate, and still allow the other kids in the class to feel “comfortable”.
Like Sara I too have a daughter with down syndrome. She is 8 and in the 2nd grade and she too is the very affectionate huggy DS kid. My heart hurt when I was at school with her one day at lunch and a classmate asked her for a hug and she said “No…not allowed”. The other little girl looked so confused. I know my daughter can be too rough sometimes and often tries to pick the other kids up during the hug but I don’t think banning hugs is the answer. How is she supposed to learn and practice the proper way to hug? Now I’m hearing that the other kids have even been told not to hold her hand because she may squeeze or pinch. Again I feel that they are sending the wrong message. The other kids don’t need to be taught to “avoid” a special needs peer, they need to speak up and tell her “No” if she hurts them, and she should be “punished” accordingly. If they choose to avoid her then I understand but having the adults send that message is just wrong.
As a mainstream teacher, I can say that many mainstream teachers simply may not have realized that Schuyler is trying to talk to people with her touching. You could just tell them that, and ask them to think about it from her perspective. Also, you can teach her to tap hands or arms only. And as a teacher, I apologize to you that you will have to teach and re-teach every teacher every year and so many new classmates all the time.
I had a student several years ago who appeared similar to Schuyler, in that she was non verbal, and communicated with a combination of sign, AAC, gesture and non specific sound. She also would touch to get people’s attention, but I did have to teach her that if she was approaching me from behind, she must get my attention by sound first, as I have a rather unpredictable startle reflex. She did learn well, that coming up behind people and touching them was inadvisable, but she was not expected to entirely “keep her hands to herself”. Why should she? By high school, she had learnt what was and wasn’t appropriate, and her classmates soon learnt to accept her communications. Many learnt the sign language alphabet and some signs. I hope that Schuyler can have as good an outcome as this young lady did.
I wrote a very similar post about touch a few weeks ago, but in Tim’s case, he touches his peers because, frankly, he isn’t always sure if they are real or a hallucination. Tim has Schizoaffective Disorder.
My Hard of Hearing(HOH) son attends a NT school that has a special Deaf/HOH program where everyone is mainstreamed as much as possible. When the Deaf children try to get someone’s attention, they will wave their hands or just gently poke someone’s shoulder (depending on where everyone is standing). This would seem like a reasonable approach for Schuyler to get her classmates attention.
Is the touching that Schuyler’s teacher refers to really just tapping a fellow student on the shoulder to get her or his attention? It seems hard to believe that that would be enough to warrant complaints from students/a letter home. I know the teacher advised you that the touching was not inappropriate, but was Schuyler trying to connect with people by touching them in a friendly way? I’m not sure if it matters either way, but it would be surprising if occasional shoulder tapping would warrant such a reaction.
I am sorry, I should clarify. If Schuyler is using many other methods to get her classmates attention, maybe the school could encourage her to just a simple poke instead.
There is a teen in my after school program (let’s call him B) who has an autism spectrum disorder (I don’t know his full diagnosis, but he’s pretty unique). Anyway, he can not hold a typical conversation, but will remember events and birthdays with amazing accuracy. His conversations mostly involve him telling you a story that you have probably heard about 50 times, or him quoting a line from a cartoon. It can be more than just annoying, especially to a 7th grader who just wants to play video games or do his homework. However, it’s my job to make sure that this 7th grader understands that B isn’t trying to annoying, and that this is how B’s mind works. I also make sure that the 7th grader isn’t feeling uncomfortable because of B (especially during homework time). But it’s MY JOB to look out for the needs of ALL the kids in my program, just like its the Teacher’s job to look out for ALL the kids in her classroom.
I always take the time to explain to the teens who don’t know B that he has trouble communicating, and I always ask them to look out for him, because kids are mean to him. I don’t know if I’m lucky in my after school program, but these kids will defend B, help him out and tolerate him so much more than if I don’t take the time to educate them. I feel like because I have “leveled” with them, and explained a little bit about what’s going on with him, they are much more understanding and patient with him.
It burns me that this teacher has not addressed the reason behind Schuyler’s touching, tapping etc with the students. Middle schoolers can be, well, middle schoolers, however, they are also smart and if approached the right way, I feel like they would understand Schuyler so much more if what was going on inside her head was explained to them.
I hope you are able to turn this into a teachable moment 🙂
Is it possible that the students who have complained about Schuyler are uncomfortable simply because they don’t know how to respond to her? As a middle school student, my neurotypical, socially reserved son expressed his discomfort with some of his classmates by talking about how annoying THEY were, not about how awkward he felt.
It’s both sad and disheartening that the teacher apparently did not try to explain Schuyler’s possible motivations for touching. Perhaps if these students had been offered an explanation for Schuyler’s touching, as well as ways to respond to Schuyler, the touching would no longer be an issue. Sometimes middle school kids just need to be offered an explanation or a different perspective. This is truly a missed opportunity in their education