Charlie, a member of my church, is my earliest memory of disability. I know now that Charlie has Down syndrome; at the age of ten or so, I had perceived him to be good natured and simply different from the other adults. An involved member of the St. Ann community, he always took up the collection at the 11:30 mass and often attended daily mass as well. I asked my mom about him once – who was he? Did he have a family? Why did he talk, walk, look the way he did? My mom carefully explained that he had something called Down syndrome; he wasn’t able to learn as easily as other adults, and had many health complications. Charlie was in his late forties at the time and my mom told me it was a blessing he was still alive with all the complications that come with Down syndrome. I remember thinking of Down syndrome as a horrible “disease,” not knowing exactly what kind of health complications he had – but assuming that any person with Down Syndrome was marked for an early death. Charlie is still alive, well, and active as always at the church.
Another early experience I had came around the age of fourteen. My neighbor Meg’s son Peter had just started preschool, but was having some issues in the classroom. Peter was and still is incredibly bright for his age. He liked to memorize certain facts and figures when he was little – types of dinosaurs, types of cars, state capitals, for example. He was into the things that most little boys were interested in, and his mind and memory were sharp enough to retain incredible amounts of information at such a young age. Peter was the oldest in his family, and thus, I believe, a little unused to the classroom structure in which he had to share time with the teacher, share toys, and follow a schedule. The teacher immediately noticed both Peter’s brightness and his stubbornness and called to schedule a meeting with Meg. She recommended that Meg take Peter to see a specialist because she thought she was detecting signs of autism. Meg was mortified – she didn’t understand autism, but she knew it to be undesirable. She thought the preschool teacher was completely unqualified to make such a suggestion. She knew that Peter was simply smart and nothing was “wrong” with him. I’m not sure if Peter was ever professionally assessed, but he is eleven now, fully-functioning and still at the top of his class.
Finally, in high school I had a classmate with autism – Vicky. Vicky joined the class our junior year, so she was both socially unfamiliar to us and, by speech, affect, and abilities “different.” I went to a private, college-preparatory high school, known for its stringent academic standards. The students in my class knew, mostly by word of mouth, that Vicky had autism, but I wouldn’t say that any of us knew what that really meant. We figured that autism was equivalent to severe learning disabilities – and we wondered how she would fare in the same challenging classes we had to take. The girls in the class wanted to be nice and reach out to Vicky, but often we would not know exactly how. What would we say to her? Why did she seem to want to avoid us? Many of the girls who tried to reach out to Vicky were hurt by her social rejection. I would often hear people say, “I was just trying to be nice to her – she won’t even talk to me,” or, “It’s sad that she doesn’t have many close friends, but she is so unfriendly; how are we supposed to get to know her?” It saddens me to say that Vicky made very few friends, and likely no close friends. She was the only person in our class with a disability. She was incredibly smart and was therefore resented for being given extra time with teachers, exams, and assignments. None of us knew how to deal with difference, with disability, or with special education.
I have made incredible personal progress in my perception of disability. I no longer think of Down syndrome as a “disease” that marks someone for an early death. I can look retrospectively on Meg’s reactions to Peter’s teacher and understand the pain and the denial that a parent goes through upon learning of potential disability in her child. I also am thankful that Peter never actually was diagnosed because I know that Meg would have been devastated, though news of autism should not be received with such embarrassment. I feel most improvement, however, in my personal treatment of individuals with disability. If I were to return to high school, I would encourage people to actually learn about autism and Vicky’s daily challenges, instead of passing judgments like, “She has no friends because she herself is unfriendly.” I would have tried to interact more with Vicky and would not have been discouraged by her immediate hesitation.
David’s class at Riverside and the following lectures taught me lessons in community, communication, method, persistence, and the various directions of perception. The issue of community is expressed in my earliest blogs. I loved that the class circled up at the end of the day, simply to share, summarize, and discuss. I saw that the students really loved each other and the teachers and assistants. Some pupils have better verbal abilities than others, but nevertheless, everyone was given equal attention in the circle. Communication is a key lesson from what I observed in the 6th Form community, and communication definitely expanded from merely spoken word. I slowly learned how best to interact with semi-verbal individuals like Aroosa and Archie, and nonverbal pupils, namely, Maleika. I learned the persistence I lacked in high school in regards to communication and gaining trust of the pupils. Maleika is the most prevalent example of my persistence. Hardly acknowledging me the first couple of sessions, she now heads straight for me when I walk into the classroom. She takes my hand and hardly lets go until buses arrive.
One of the most poignant lessons at Riverside was mothers’ perception of their children’s disabilities. I think this particular lecture will stay with me for a long time. The mothers graciously shared each fear and apprehension, the different stages involved in raising a child with disability, and the various daily challenges, including sibling rivalry, government funding, mainstream v. special education, etc. I thought of Meg and Peter during this lecture and could imagine the emotions these mothers had experienced. Their firsthand testimonials helped me to expand my perception of disability immensely. If I pursue a career in which I will interact with children with special educational needs, I have an incredibly valuable basis of understanding after being present for that lecture.
I would recommend this or similar experiences to anyone – thank you for reading!
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When I walked into the classroom today, one of the first things I noticed was that Emilie was using her walker. She usually uses her walker outside during recess, but is always in her wheelchair in the classroom, so I was shocked. One of the teachers told me that she had been using her walker most of the day, and had used it to walk around the entire school that morning. “She’s so determined,” the teacher then said. Emilie then stepped away from her walker so she was standing on her own. She took a few steps and then began to fall, but every time the teacher put her walker back in reach, Emilie moved away from it. It was amazing to watch this little girl walk. If you had asked me at the beginning of the semester, I would have said Emilie would be in her wheelchair forever, but now I see that does not necessarily have to be the case and I think she is just going to become more and more mobile.
This afternoon, the younger classes were practicing for their Christmas play. Sitting in the hall for an hour watching this rehearsal was one of the most interesting experiences I have had at Riverside. I was not sure how all the students would be included in such a production, especially as many are non-verbal or in wheelchairs or both. The unique and creative ways the teachers found to incorporate each member of the class into their class’s scene was incredible. Lucinda in my classroom is the only child with significant verbal ability, so she was the only one with a speaking part. She is shy about speaking, so she only has one line that she repeats throughout the scene, but that is perfect for her. In other class, a student who is in a wheelchair and cannot talk has a Big Mac – a button with a pre-recorded sound – to press when her character has a line.
As today was my last day in the classroom because my class is going on a field trip next Thursday, I have been thinking about this experience as a whole. When it came to me that I would never see these children again, I realized how upset I was about it. I have watched these children grow and do things I thought were impossible (like Emilie walking today or Lucinda speaking in a play) and now I have to leave them forever. I know that I will keep the class with me for a long time, but what is more upsetting is that these children will most likely not remember me and will never think back to the experiences we shared. My respect for the teachers and assistants at Riverside and all schools for people with disabilities grew immensely today as I imagined how many wonderful experiences they share with students every year that they remember but that the students do not or cannot communicate that they do.
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It hit me partway through the day that it was our penultimate week at Riverside and I began realizing how much I would miss it. I feel like I am just starting to make significant progress in getting to know the kids. When they remember your name or ask you to help them with something, no matter how simple it may be, it really feels like my time has been worthwhile.
For example, Nnandozia, who rarely talks, though he can, actually responded to a question I asked him. Though it was as he was walking away towards the open door as he always does and I rhetorically asked, “Where do you think you’re going?” and he turns and says, “I’m not going anywhere,” as if I had asked a very dumb question. It was a big step for me because I’ve only heard him speak to the teachers a handful of times during our weeks here. Also Emily was out sick this week and I really missed her coming over to sit by me (usually going out of her way to do so) or at least giving me a smile when I entered the room. It’s these little connections that I’ve been making with the children that have affected me the most. Though to be honest, I feel like I have contributed little more than an extra hand at times in comparison to how much these teachers do, I hope at least some of the children were positively affected by something I was able to do with them.
Now that I finally feel I am getting comfortable enough to not always wait to be told what to do by the head teacher, it has come time to leave – as is typical with most experiences it seems. I wish I could have the chance to come back some day while my class is still working their way up in Riverside. They may not remember me, but I’m always going to remember these kids and how much of an impact they had on me. I’ve been able to observe some simple progress in a few students over the weeks. However, by coming back after a few years, I would really be able to see how much they’ve grown both emotionally and academically. That is the reason that people get into teaching, the long-term effects of what is done at Riverside are the most rewarding.
Ben is usually pretty quiet and keeps to himself. This time, for the first time since I had been there, he was just a ball of energy. When they came back from the store he was running all over the classroom hiding in the play fort, then jumping onto the beanbag chair and trying to get people to chase him to have fun. He has always been one of those kids that I wasn’t sure why he was at Riverside as he seemed quite bright but was just very soft spoken and looked a little nervous at times. Apparently these energetic outbursts can be accompanied by real behavioral problems and aggression. I talked with the teachers after class about it and was surprised to hear that his parents were transferring him to another school. It is for children with mostly behavioral issues but with a higher academic ability. He had originally been in mainstream school but wasn’t able to succeed. After coming here, though his work level was lower, he was able to thrive emotionally and has made great advances in confidence. Now being moved to this more advanced school they worry about how well he will do socially and emotionally. Though the academics will be at the level he can do, will he do them because he may be overwhelmed?
There’s a really delicate balance for the higher functioning children that I never considered. Just because they have the academic ability to succeed at a more mainstream school, would they be able to do so when all the other factors are included. It’s a tough trade off that parents have to face. I would have no idea what to do. You really want your child to learn a lot but you also want them to be comfortable. I hope that Ben’s time at Riverside has given him the confidence he needed so that he can now go on to succeed at his new school. If it doesn’t get him anywhere and he loses ground on everything he has gained, it would be a tragedy.
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• Communication disorders
• Learning disabilities
• Mental health problems
• Physical difficulties
• Emotional problems
• Challenging behavior
Music therapy is a powerful medium through which music is spontaneously created by the child and the therapist. No musical training or skill is necessary on the part of the patient, though the therapist is ideally a highly-trained musician. The therapist seeks to establish contact with the child through the shared use of sound; any form of communication with the child is supported with music or words. Especially effective for non-verbal patients, communication comprises music, vocalization, movement, tempo, volume, or even facial expression. The aim of music therapy is primarily non-musical and individual to each child, including:
• Increasing communication, interaction and self-expression
• Developing an awareness of self and others
• Providing emotional support
• Developing skills such as listening, sharing, and turn-taking
• Developing coordination and motor control
• Increasing self-confidence
The aim of this therapy is not to crack a secret code in the child’s psyche; rather, it seeks simply to create a setting in which he or she feels relaxed and confident enough to share thoughts with the therapist. We watched several videos of sessions and the result could be as simple as “loud music makes me feel excited and soft music makes me feel sleepy.” Often autistic children have trouble expressing such emotions, and music can provide the ideal setting for such expression.
Why music? Music is a unique and incredible medium that sharpens such skills as improvisation, rhythm, and creativity. Though non-verbal, it can improve the same skills used in conversation: listening, sustained attention, turn taking, and even the emphasis of certain sounds, helping semi-verbal children with their chunking and pacing abilities. Also, simply put, music is fun for the child – it creates a multi-sensory environment that is intrinsically motivating. Anyone would agree that music reflects emotion, and the recognition and voluntary expression of emotion is a fundamental social skill for the patients to learn.
I would also like to take time to comment on the amazing cultural experience of working in a school abroad. As part of the continued lesson on citizenship, the class took a bus ride around the neighborhood today. Not far from the school was Hall Place (follow link for picture: http://www.hallplace.com/visiting/) – a beautiful, historic house built during the reign of Henry VIII, right around the corner. Though the class did not have time for a tour, one of the TAs stopped the bus so I could have a quick look around. They then supplied me with maps and pamphlets, should I ever like to come back. During tea, the staff will often ask me what trips I’ve taken, what sights I’ve seen in London, in addition to asking me about various aspects of my home, my university, and my culture. In addition, today was many of the volunteers’ first Thanksgiving away from home, but it was unbelievably touching how many of the staff members earnestly wished us a happy holiday and wanted to know our plans for the evening. As much as I have cherished learning about disability and education, the simultaneous cultural experience of working so closely with British staff and students has been incomparable.
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1. Impairments in reciprocal social integration
2. Impairments in communication and integration
3. Markedly restricted repertoire of interests (also know as stereotypes/rituals)
When discussing ritualistic and obsessive behavior, the question was raised whether certain rituals should be broken. Our professor, who usually has clear and complete answers ready to rehearse, smiled, sighed and said, “Therein lies the debate.” She then made the point that “people with autism” should be referred to as such because they are people first –their autism adds to who they are, but does not entirely constitute their identity. Some of the rituals and quirks of autism make people with autism who they are and interests that are not detrimental to them either physically or socially should not be discouraged. The professor then lectured on savants – individuals who have a generally intelligence in the below average range, and an islet of ability out of keeping with other skills. She specifically addressed the famous Kim Peek, on whom the film Rain Man was based. The lecture further aided my understanding of autism as a fascinating and complex condition.
In class, another major episode displaced us from the classroom. I am in the classroom only once a week for half the day and have experienced such an episode three times already – I wonder how often these disruptions occur on a regular basis. Appropriately, the lecture afterwards with Dr. Hinchcliffe focused on the issue of Challenging Behavior. Dr. Hinchcliffe summarized this behavior as having the potential to:
• Prevent participation in appropriate educational activities
• Isolate a student from his peers
• Affect the learning and functioning of others
• Reduce the opportunities for involvement in ordinary community activities
• Make extreme demands on parents, teachers, staff, and resources
• Place the student and/or others in physical danger
• Prevent the use of ordinary community facilities
• Prevent a normal home life, and
• Make the possibilities for future placement difficult
Some of the possible reasons he provided included:
• Severe communication difficulties
• Need for escape from a particular situation
• Tangible or sensory rewards
• Social attention
• Biological or health causes
• Physical discomfort
• Lack of stimulation
Dr. Hinchcliffe admitted that, “The reasons are obvious, but they are not always simple.” Interestingly, he too addressed the issue of the ethics behind extinguishing behavioral drives and agreed that it is right if they are socially damaging. The difficulty of functional analysis – the determination of the functions that the challenging behavior may serve for the individual – and extinguishing the behavior lies in the myriad of possible reasons behind each challenging display.
Today was the type of day that led me to deeply respect David and his TAs Ev, Jeannie, Amy, and Mark. In the aftermath of the episode, Ev said to me, “You can’t last two minutes in this school without a sense of humor!” I appreciate her humble simplification, but I believe she and the other faculty members are to be credited with a lot more than just a sense of humor.
Further information on Kim Peek:
http://www.wisconsinmedicalsociety.org/savant_syndrome/savant_profiles/kim_peek
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Glen told the story of John, her twenty-year-old son with Down syndrome. Glen was told that John would be born a “vegetable” and struggled with “being told of his disabilities straightaway.” John attended mainstream school until the age of seven, at which point he transferred to Riverside, where he quickly blossomed. She describes John as having a wonderful sense of humor and as being very stubborn. Despite the initial prognosis, John can walk and talk, and is even attending college classes to acquire living skills.
Lisa described her ten-year-old daughter, Gemma. She presented Gemma’s story as one in which a “special need isn’t always immediately apparent.” Lisa explained that Gemma was born “completely normal,” though complications arose early in her life. Gemma was thought to be deaf as a toddler, but tests proved this initial theory wrong. Lisa reported being “devastated – because, as a mother, I knew something was wrong.” Upon Gemma’s two-year check-up, her physician told Lisa that she was being an over-anxious mother, as Gemma was correctly developing in regards to cognition. When it was discovered that Gemma had autism, Lisa said, “I can honestly say I grieved.” She grieved because Gemma wouldn’t be like her sister, saying, “My little girl is not going to be like everyone else and that was that.” She remembers the confusion she felt, having been completely unaware of the complications of autistic spectrum disorders. She was left knowing only that the outlook was bleak, but the future had no form that she really understood.
The third mother, Sarah, then described her fourteen-year-old son James. James survived a slew of heart complications at birth – a reimplanted core artery, a damaged mitral valve, and eighteen subsequent months of heart surgery, thirteen and one half weeks of which he was on constant life support. Sarah also addressed a “grieving period” in a courageous, matter-of-fact tone – she was widowed shortly before James was born and endured these critical years as a single mother. She discussed the struggles of choosing a school for James, deciding that mainstream was inappropriate, as one “can’t integrate to the detriment of other children.” Sarah also spoke the most highly of the impact of Riverside on her son, now a beloved figure in the community.
With humor and optimism, the mothers reflected on three main struggles: relations between siblings, government support, and the future. Each of the moms spoke of the uniquely strained relations that can often develop with siblings of a disabled child. Glen spoke of the difficulties of splitting her attention between her children. Lisa reported that her other daughter, twelve years old, is often teased on account of Gemma. Sarah, now remarried, struggles with divisions in her new family, though James participates eagerly in a Mencap buddy program (similar to ND’s Best Buddies chapter – see below).
John’s government funding was recently cut off because John can walk and talk and, according to the rules, he therefore no longer qualifies. Gemma struggles with defining autism in the context of disability and has similar struggles with funding. Sarah characterized the forty-two-page DLA (Disability Living Allowance, see below) form as “soul destroying.” This form must be updated and resubmitted every five years and each woman expressed frustration at the fact that, in Sarah’s words, “Some person in an office decides whether you deserve help.”
The future is uncertain and somewhat terrifying for each of the mothers. Glen worries about life after college for John, who will most likely be in assisted living, which she described simply as “a very big step.” Gemma constantly worries about the difference in futures of her two daughters. Sarah admitted that even though James is extremely happy at Riverside presently, she must always plan five years ahead, stating, “When you have a disabled child, you battle the rest of your life for them.”
Sarah concluded the session with a touching, positive sentiment, saying through a smile that, “You just don’t know about the future, but it is constantly in the back of your head – the possibility of jobs, spouses, families for our kids? We don’t know. We do know that all we need for now is a sense of humor and complete and utter love.”
Anne Ruggles Gere, “Seeing is/not Believing: Visibility, Invisibility, and Disability Studies in Education,” in Disability Studies in Education: Readings in Theory and Method, ed. Susan L. Gabel (2005), 53-63
Sutton Mencap Buddy Program: http://www.suttonmencap.org.uk/Volunteering/Vol%20handbook.pdf
Recent article on the Notre Dame chapter of Best Buddies: http://newsinfo.nd.edu/news/12215-notre-dame-best-buddies-group-recognized-as-outstanding-chapter
Information on the DLA: http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DisabilityLivingAllowance/DG_10011925
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In the lecture, Gillian Needham of Riverside School introduced the idea of “Intensive Interaction,” developed in the 1970s in England by David Hewett and Melanie Nind. It is an approach to teaching pre-speech fundamentals of communications to those with Severe Learning Difficulties and Autism Spectrum Disorders, developed from research on communication within the first year of life.
Intensive Interaction is specially developed for those pupils who are determined to be “difficult to reach,” engaging in self-stimulatory behaviors, and showing no interest in other people. Some students may have social skills to an extent, but further need to develop their use and understanding of eye contact, facial expressions, and turn taking in exchanges of behavior. Basically, Intensive Interaction is an exchange between two people – the pupil and a trained instructor – based on mimicry. The Riverside faculty uses this method to teach students the enjoyment of being with another person, the skill of giving attention to another, and developing shared attention activities.
We watched several videos of formal Intensive Interaction between non-verbal students and trained instructors. The scene basically plays out like a silent game of Simon Says – the student raises her right arm, so does the instructor, the student claps her hands, the instructor follows, and this continues until the student loses either energy or attention. If the student does not lead the instructor, the instructor will provide motions for the student to mimic; oftentimes in the videos we could not tell who was following whom.
I was especially surprised by how long the sessions lasted. The students were pleased with themselves that they could lead the adult with these silly gestures and it was clear that they were aware of their leadership. At one point, the student scratched her nose, a gesture that didn’t appear to be part of the interaction to the instructor, and continued to scratch until the adult followed her lead. Communication is easiest when the expressed language, be it spoken or nonverbal, is of a similar sequence. In a mainstream classroom, imitation of the teacher indicates understanding of directions. Instructors’ imitation of Riverside students can accomplish the same thing, granting comfort, power, and potential to the pupils.
Reflecting on the lecture, I realize that much of what I had been observing in the classroom with Mark and David is a simplified form of intensive interaction. When the student and teacher can communicate in the same manner, precedents of trust and equality are formed. The interaction can be incredibly simple. For instance, Maleika, a non-verbal student with Down Syndrome in my classroom, will often sit next to me, hold my hand, and accompany me on class outings. It is extremely touching to have gained her trust over the past couple of months, especially considering that she remembers me from week to week though I am only in the classroom on Thursdays. Though nonverbal, Maleika will often play with her hands and clothes, with my hands and clothes, tap various body parts, or otherwise display engagement in a world of gestures. Before the lecture on Thursday, I found myself repeating her actions by intuition as a way of communicating with her.
Background on Dave Hewitt: http://www.davehewett.com/intensive.php
Further Information on Intensive Interaction: http://www.intensiveinteraction.co.uk/
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To supplement my observations, I have been reviewing articles I read in my sophomore year as part of Essaka Joshua’s Disability Studies College Seminar. Recently, I re-read Anne Ruggles Gere’s article “Seeing is/not Believing: Visibility, Invisibility, and Disability Studies in Education.” In this work, Gere addresses the issues as pertaining to her own adopted daughter, Cindy, who has Fetal Alcohol Syndrome (FAS), and talks about the assumptions that teachers and classmates make about each other.
David was ill today, so the classroom was a little less structured than usual and I was able to spend some time with one of the aides, Amy, who is also twenty years old. I took the opportunity to ask her about the self-perceptions of the students. Are the students cognizant of their abilities and disabilities? Are they knowledgeable of their diagnoses? Do they know about the disabilities of their classmates? How do they grapple with questions of visibility and invisibility?
In my October 1 reflection, I wrote on whether it was appropriate to want more information on the students’ various disabilities and impairments. I try to avoid lumping all of the pupils into the “limitations of monolithic labels,” to quote Gere, and I would prefer more tailored words than simply “disabled” and “impaired.” As a student of psychology and possibly a future mental-health professional, I yearn for more specific medical details. Amy responded by saying, “Some of them do – Archie, for instance.” She called Archie over and asked him to show me his shirt, which read, “Don’t blame me, it’s my Autism.” The t-shirt appeared to have been from a fundraiser for autism awareness, and though it was a strange sentiment – alike in appearance and profundity to a shirt reading, “Don’t blame me, I voted for Ron Paul” – it was certainly interesting, and it was real. Amy said that Archie was especially proud of that shirt and had a matching hat as well. Beyond signing his words, Archie is not visibly impaired, but the shirt makes his disability visible – and his reaction is pride.
Gere states that, “The visible is not an accurate measure of the ‘reality’ of another’s body,” yet, “to be visible is to be subject to surveillance and voyeurism” (57). Just as the students in the classroom have an extensive range of abilities and impairments, the visibility of such individual traits is equally wide-ranging. Gere addresses the complexity of disability, and the further complexity of discussing it as, “Much of the research currently being done in education depends upon narrow and carefully delimited categories. The subjectivity of individuals is referenced by terms such as ‘at risk’ or ‘gifted’ or ‘disabled.’ These designations assume a single and stable identity” (59). These issues cannot be solved through studies of one person, but with the understanding of a community.
Riverside is an incredible community for these students at this point in their lives; Gere chooses her daughter as the subject of her analysis as she is an impaired student within mainstream education, and her challenges are subsequently multiplied. I often think of the pupils’ lives outside of Riverside – within their families and their neighborhoods, both now and in the future. Is disability – autism, for instance – a diagnosis that only incites “blame” as Archie’s favorite shirt assumes?
[Somewhat related to the issues of dialect and effect is the following article reporting on a Stanford University psycholinguist’s work on the thought-shaping power of language: http://www.newsweek.com/id/205985.]
]]>Those for whom this task would not be ideal did other appropriate exercises that worked on their citizenship skills. Archie is has difficulties with language, though he is very high-spirited, quick and energetic, and completely coordinated on the computer. His favorite website is www.bbc.co.uk – he checks the weather, stock markets, and loves watching videos of politicians. We watched a speech, by the Conservative Party leader David Cameron, about six times until someone, evidently not a fan, made him switch it off.
Noticing that Archie was especially adroit in running the various programs on the BBC website, I asked Mark if Archie was visiting this site because it was a citizenship activity or whether this was a common occurrence. Mark answered that yes – it is practically the only site he visits. He will report back in sign language to the rest of the class, passing on the weather, news, etc. “Archie!” Mark asked, “How is the money – is it up or down?” A few clicks later, Archie made a loud “d” sound with his sign for down and began running around the room, upset by the bleak financial outlook.
During my first session at Riverside, I noticed that the instructors in the classroom have the habit of mimicking some of the students’ quirks, tone, and behaviors. Archie, for instance, towards the end of the afternoon will starting saying “Ar-chie!” and make the sign for home (a tepee motion with his fingertips) and, distressed, will slap his face with his hands. Often, David and Mark, who are the class clowns more so than any student, will mimic this motion while simultaneously comforting Archie, signing “home is soon.”
Their mimicry is clearly not insidious – Archie’s and other students’ stress is alleviated in these moments, as they are too focused on laughing and, of course, involuntary behaviors are never mimicked – but I wondered at the example they are setting. I hinted at the humor in the classroom in a previous blog, but I avoided describing the degree to which mimicry is a part of it. Frankly, I was quite uncomfortable with this type of interaction at first.
Yes, humor is a good social skill to teach to adolescents who have Autism, but how is humor received when it is directed at the child? After having been in the classroom for several weeks now, however, my thoughts on the subject have definitely changed. I know that I am technically present as a student volunteer, but I’m clearly foremost an observer, learning both from the pupils and the instructors. I accepted very early in my time at Riverside that some things were bound to shock me, put me at unease, and I would doubtless have many questions, regarding method especially. I have come to accept that this imitation is a prompt for social “normalcy.”
I know the dangers of using that word – and “average” is often a better substitute – but by “normal” I simply mean the common patterns of social interaction. For instance, I will make fun of my roommate’s quirk of folding her dirty laundry, among other things, without thinking twice. Most importantly, humor is a common form of expression among equals. I have written on the comfort in the classroom and the intuition of pupils and instructors alike – perhaps this form of humor is an extension of those feelings of comfort and equality. Oversensitivity can be a fault.
In the world beyond Riverside, if a pupil is on the receiving end of ridicule or mockery, it doubtless will not be executed as lovingly as it is by David and Mark, but at least it will not be unknown. The students have learned to laugh at themselves and their classmates’ quirks as any close-knit group does. This self-effacement in itself is a social skill from which, I’m sure, mainstream students could also benefit. These students are nearly adults and well aware of their differences – David and Mark will often ask the class if I should get a “tablet” to calm down (many of the pupils take sedatives several times throughout the day) – and they will protest with laughter that, “Mary doesn’t need a tablet!” Week after week, I am amazed by their incredible attitudes as they are dealing with issues much more complex than the average sophomore in high school, issues that I am trying hard to understand.
]]>There are so many things to reflect on in relation to this episode. The two main things I want to write on are the reactions of the pupils and the adults. As the episode began, David tried to ignore it by simply proceeding with the lesson. As it became evident that the tantrum was turning destructive, David and Mark cleared the area of students, and approached, stopping at a close but unthreatening distance. “You’re alright! Let’s finish this lesson,” was their most forceful command – and even this was expressed cheerfully. Every adult proceeded as if this was an expected part of the day; as chairs and art supplies and food went flying, not one of them panicked, not one of them yelled, not one of them scolded. Mark and David restrained the student only when they perceived him to be a danger to the rest of the class.
The students in the class handled the outburst equally impressively. I was afraid that an episode of one would set off a chain reaction, but quite the opposite occurred. Some students turned their backs, obviously upset, but empathetically concerned. Heads dipped into hands as if silent prayers were being muttered. Maleika was sitting on my right and grabbed my hand seconds after the pupil went off, before I realized what was happening. I first perceived this action as fear, but I think she was actually protecting me. She also grabbed the hand of Harry on her right and did not slouch in fright herself, but pulled us close into her while assessing the situation with a mother-like grip. Thematically, the congruence of the day’s lesson and ensuing events struck me. Malieka, who does not speak except to say “Hello!” displayed an intuition far beyond my own and used this sense not to run from the room, but to protect those closest to her.
As everything settled, the class eased right back into the lesson. The student was warmly welcomed into the semi-circle with a female TA on either side of him. Before too long, he was jovially engaged, having put the hour’s events out of his mind. No one mentioned the outburst or asked questions. In a mainstream class of sixteen-year-olds, any type of behavioral breach would incite gossip, nicknames, and distrust; at Riverside, the empathetic acceptance of the boy’s fellow pupils was profoundly genuine and deeply moving. I had never seen this student upset like this, and the nature of the tantrum remains a mystery. I would give anything to live inside his head for a day or for just that spell to try to understand the reactions that – to an outsider – are set off by nothing at all. Understanding may lead to treatment or coping techniques, but how much can one teenager be scrutinized for explanations no one may have? I suppose, at certain times, that I should follow the example of my students and not wish for such personal information or explanation, accepting what I cannot understand while cultivating a genuine empathy that serves as the conduit of progress.
]]>As communication differences are prominent in people with Autistic Spectrum Disorders, I think it would be helpful first to outline the basics of this impairment. Autism is a biologically based Pervasive Developmental Disorder with a possible genetic component. Over 520,000 people in the UK, about 1 in 110, are affected. Autism can be improved, but it is a permanent impairment and is often paired with learning disabilities, though some forms of autism are compatible with superior intelligence. Asperger Syndrome is a common component of the Autistic Spectrum and is often described as “high-functioning autism.” More info here.
From an outsider’s perspective, I have always found Autistic Spectrum Disorders to be challenging and fascinating; as the name indicates, severity and manifestation of impairment varies incredibly. Just in my classroom at Riverside, the range is apparent: I have never heard James speak, whereas Harry, who gave me a tour of the school on the first day, is familiar and friendly with every teacher and most pupils in the school.
Recently, autism has been a prevalent topic in news and culture. It is not uncommon to see “Autism Awareness” bumper stickers, read books like Mark Haddon’s The Curious Incident of the Dog in the Night-Time, or see movies like Adam, written and directed by Max Mayer. Speculation on the recent surge of ASD diagnoses has been a topic of debate, but many researchers have concluded that health professionals are simply better able to recognize the range of the disability. One discredited theory linked the rise in Autism diagnoses with the measles, mumps, and rubella vaccine.
The DSM definition is a bit lengthy, but I have included it below. Defined in section 299.00 of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), autism includes a total of six (or more) items from (1), (2) and (3), with at least two from (1), and one each from (2) and (3):
1. Qualitative impairment in social interaction, as manifested by at least two of the following:
2. Qualitative impairments in communication as manifested by at least one of the following:
3. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
4. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
A prominent feature in autistic communication impairment is difficulty in understanding humor. The relaxation of the classroom struck me on my first day at Riverside; David and Mark are quick and witty and often harmlessly tease the students. (For example, Harry was asked why he caused the traffic jam as he returned from the sailing trip.) This made me a little uneasy at first; do such informal interactions belong in a classroom setting? Is it appropriate, practical, or even ethical to tease individuals who, biologically, may not understand the humor? Weren’t these men educators, and not friends or playmates? It didn’t take me long to realize that, as Math, English and History are the subjects of a mainstream education, social skills, life skills, communication, even humor and everything in between constitute the curriculum for these teens. David and the TAs have the unique challenge of gaining the students’ trust and friendship while maintaining respect as mentors.
DSM diagnosis info retrieved from the following webpage: http://theautisminfo.com/autism_dsm_definition.htm
]]>Along with last week’s theme of community comes that of intuition. James is the largest boy in the class and was introduced to me as being “particularly volatile” on my first day. If he ever were to begin a tantrum, I was instructed to grab one or two of the girls in the class and run to the hallway. Mark, a TA, is in the classroom solely to look after James. They appear to have a father/son relationship, often arm in arm or playfully wrestling. I have never heard James talk but Mark is extremely keen on his emotional state. At one point James put his head down on the desk and within seconds, Mark realized that an episode may be approaching. He grabbed James by the hand and took him for a quick and calming walk outside. The afternoon proceeded without incident. I highly admire the attention that Mark is able to devote every minute of the school day to James. Many routine jobs easily accommodate mental and physical breaks – Mark’s is not a routine job.
Intuition extends to the pupils as well. Though they have been in school just three weeks now, students are deeply aware of their classmates’ quirks and habits. At one point, Archie was slamming his hand down on the table in front of him with such force that I was worried he would break either his hand or the table. Without turning his head to examine the situation, Adam said from my right, “Don’t worry, M’lady; he does this but it will be over soon;” Adam only refers to me as “M’lady” in his dignified British accent.
On the train home, I reviewed the day with a fellow ND student, Tracy, who is working at Riverside with nine-year-olds. We were told during orientation that it is the sad reality that one or two Riverside pupils die every year, and Tracy was worrying about a student in her class. “They told me she was having a bad day – she had been feeling sick last night and had a seizure this morning.” It strikes me that the average “bad day” for a nine-year-old was a far cry from the struggles of the Riverside pupils.
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The main teacher is David and he is helped by his TAs Evelyn, Jeannie, Amy, and Mark. The students are Tammy, Mohamed, Maleika, Aroosa, Adam, Archie, James, and Harry. I think most, if not all, the pupils have some form of Autism. As this is the first week, I wonder if I will be given more information on the personal stories of the pupils.
As soon as I walked into the classroom, the welcoming atmosphere was immediately relieving. “Where should I put my bag?” I asked David. A chorus of responses from the pupils answered my question – they were as eager to help and welcome me as I them. My name was learned quickly and as TA’s entered the room, back from lunch breaks, the students were first to introduce me. Afternoons are relaxed at the school – the morning having been set aside for more vigorously academic tasks – and we painted pictures of butterflies for the remainder of the day as we listened to the students’ favorite CD, the Mama Mia soundtrack.
One of the pupils who struck me the most today was Harry. Harry is sweet, frail, and gentle. He is eager to please and seems the model student in the classroom. “What did you think of him?” David asked me soon after Harry left for the bus. I told him I thought he was incredibly kind and welcoming. “But vulnerable, too, don’t you think?” Harry is slight and lanky, often shakes as his hands struggle with crafts, and submissive almost to a fault. “I don’t think he gets the best treatment at home,” David mused. I realized how long it would be until I even partially understood the pupils’ individual temperaments.
Community in the classroom was incredibly impressive. The school year has been in session for only a week, but the students and various adults interacted like an extended family. I think it is a stereotype that “special schools” are formed simply for the purposes of practical understanding among the pupils – but community goes beyond commiseration. While understanding is key in the classroom, these pupils are obviously not all functioning at the same level. They are grouped by age and not ability. As in any classroom, community creates opportunities for example – this school works so well because students are willing to help each other in ways that a mainstream school could not accomplish. Reflecting Dr. Hinchcliffe’s emphasis on expectation, students are not scolded when they correct a fellow student in an appropriate manner.
I could go on with my observations of the day, but I will try to focus on key issues each week so as to not overwhelm the readers. The main lesson I learned this week was the important issue of community – I only hope to be able to add to the Riverside family.
]]>My name is Mary McKeever and I am writing this blog as a way to reflect on my experiences and share my insights at the Riverside School for disabled adolescents. I am a junior studying English and Psychology on Notre Dame’s London campus this semester and this opportunity is unique to the London Program. As a psychology major, I am interested in understanding disability in a practical, day-to-day basis; as an English major, I am interested in the depiction of mental illness and physical disability in literature and its reception in society.
Though we had only been in London for one week, the fifteen-mile train ride from Victoria station to Riverside School in Kent, England, was a welcome relief. We arrived at the school, however, to find that we actually were not expected until the following week! Though it was the first day of the term after summer holiday, the faculty was extremely accommodating; an impromptu orientation commenced and we learned the basics of our placement. Every Thursday, sixteen ND students with majors ranging from Psychology to Pre-Med to Education, Schooling, and Society will spend the afternoons at Riverside.
This first entry will focus mainly on the Riverside mission and background of the school.
Above is the motto of the Riverside School, “a special school for approximately 160 pupils aged between 4-19 years in the London Borough of Bromley,” writes Dr. Vivian Hinchcliffe, the Headteacher, in the welcome packet given to us on orientation day. Dr. Hinchcliffe further writes, “The school has a diverse pupil population: all the pupils have severe or profound learning disabilities, and some may also have physical disabilities or Autistic Spectrum Disorders. The school offers a safe, positive, and challenging environment for its pupils. Its children and young people enjoy school and staff and parents have high expectations of them.”
Dr. Hinchcliffe is the main liaison between the University of Notre Dame and Riverside School and has been at Riverside for 33 years. In addition to coordinating the sixteen ND volunteers with classrooms at all age levels, he teaches Developmental Disabilities after the Riverside School day is over, completing the ideal combination of community and education. The three subsequent sections will be paraphrased from the information packet we received on our first day; I apologize for the formality of this first entry, but I want to fully outline the mission and vision of this extraordinary school.
Riverside School provides a number of training courses for teachers and professionals working with children with special needs. It acts as a Resource School to a number of local mainstream schools.
The school delivers courses to local education authorities and universities. The school has a strong track record of curriculum innovation, development and research. Its staff is highly qualified and has published numerous papers and chapters in leading journals and books.
Organization and Resources
The school has 3 departments: Primary, Secondary, and Further Education. Class sizes are small and children are grouped roughly according to age. The adult-pupil ration across the school is roughly 1 adult to 2 pupils and this allows the school curriculum to be differentiated to meet children’s individual needs
The school has excellent facilities, including:
The school has a successful integration program with local mainstream nurseries, schools, and colleges. All pupils in the primary and secondary department have opportunities to work alongside mainstream pupils each week. Some students attend college links and community college courses.
Together we will build a progressive, flagship school with a first class, holistic curriculum centered on the needs of each individual pupil. Pupils will be stretched and challenged within a fun, safe, and happy environment. The voices of pupils, parents, and staff will be respected and valued. The vision statement is underpinned by three key principles, collectively known as “The Three P’s”
In this blog, I aim to report the stories and struggles of individual students I work with, the teachers at Riverside, and the general environment of a school with such an important mission. I was considerably impressed with Dr. Hinchcliffe’s emphasis on expectation of these students – he is a man who truly puts ability over disability. He has a friendly air and welcoming attitude, in addition to knowing the names and detailed backgrounds of each of the 160 pupils, but he is also has the grace and diplomacy to maintain respect as the Headteacher of a distinguished school. Though I will be there for a fraction of the time that he has, I hope to model my behavior and expectations on his own.
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