Wonder

"I wish every day could be Halloween. We could all wear masks all the time. Then we could walk around and get to know each other before we got to see what we looked like under the masks." -p.73

I don't know about you, but I consider my middle school experience to be the definite low point of my life.  Even after all these years I still cringe thinking about all the growing pains I went through.  How I grew out of friendships, but didn't what new friends to make; how I didn't look or feel like I fit in.  Even though those memories don't sting as much as they used to, I remember middle school as being often a cruel time.  While everyone is trying so desperately to fit in and be accepted by everyone, anyone who seems different is torn apart.  This judgment and manipulation needs to be combated, which is why I am so glad that the book Wonder by R.J Palacio is being introduced more and more to the middle school literature curriculum.

Wonder is the story of August, or Auggie, Pullman who has been home-schooled by his mother up until now.  Auggie starts out by saying "I won't describe what I look like.  Whatever you're thinking, it's probably worse" (3).  Auggie was born with a facial deformity which required him to go through twenty seven surgeries and receive home-schooling, but since he is stronger he enters the fifth grade at Beecher Prep.  Anyone who's started at a new school knows how nerve-racking things can be, and this anxiety is multiplied for Auggie who knows people will be stare at him and wonder what is wrong with him.  As the story takes us through Auggie's school year, we see that even though Auggie has some flaws, he is an incredibly strong ten-year-old who has a big heart.  Auggie comes to terms with the fact that people will stare at him, but there is nothing he can do about it and he should go on living his life.  Even though there are characters who are mean to Auggie, he is surrounded by loving family, friends, and teachers who are portrayed in such an genuine light.  Since the book is told from five different points of view, such as Auggie's sister, we take away important lessons from many characters.  I learned from the character Summer, Auggie's classmate, that ten-year-olds still have the ability to be loving and thoughtful.  I loved Auggie's teacher Mr. Browne, whose precepts that he teaches to the class are helpful for any middle schooler reading this book.  One such example is "What is beautiful is good, and what is good will soon be beautiful."  We see that despite Auggie's facial deformity, he is a beautiful, funny, and complex person who deserves kindness and respect, just as any person does.

The Boy in the Moon

"In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful - not money or results, but friendship, and fellow feeling, and companionship. In my fantasy, it is the rest of us, the normals, who have to be "integrated" into their society, who have to adapt to their pace and their place. I can leave, I can go back to my more pressing and even more interesting life, but I can also return to live with Walker, as Walker lives - slowly, and without much of an agenda beyond merely being himself." -p.270

My mother, who inhales books, reccommended this story to me, and even though it was deeply painful to read at times, I believe it's a story that every special education teacher, and furthermore, every person in general, needs to read.  This is the true story about a father and his struggles to properly care for his son Walker, who was born with a rare genetic disorder that causes profound developmental delays: Walker cannot eat on his own, talk, walk, and often hits himself.  This book encompasses the notion of parents as ordinary people being put in extraordinary circumstances.

The book opens with the narrator and writer of this book, Ian Brown, being woken up in the middle of the night to sounds of his son Walker grunting and hitting himself.  The only way to console Walker during these times is bringing him to the father's bed and feeding him.  This is more complicated than it sounds though, because Walker has difficulty swallowing and cannot eat solid food; Brown has to administer food to Walker through an IV pump to a valve in his stromach.  Brown goes into the intricate details he must remember when caring for Walker, but also the questions that run through his head.  What will happen when Walker is twenty and he is sixty, and Walker still needs his diaper changed?  How will he be able to stop Walker from hitting himself when Walker grows stronger than him?  What is the value of human life is Walker is so dependent on everyone's care for his survival?  With all these details to remember with fatal consequences if one mistake is made, as well as all these unanswered pressing questions, Brown paints a picture that I was not even aware of before.

For the Brown family, refuge is sought in an assisted living place for other individuals with severe disabilities.  The parents experience much pain in realizing that they cannot care for their child as well as this institution can; I'm sure that it is especially painful experience for a parent not being able to provide the best environment for their child.  However, Brown finds great joy in knowing that Walker is able to blossom and thrive in a community of others just like him.  I think I've done enough of spoiling the ending-the rest you will have to read!

The Diving Bell and the Butterfly

"My diving bell becomes less oppressive, and my mind takes flight like a butterfly" -p.5

My favorite book of all time would have to be The Diving Bell and the Butterfly (Le Scaphandre et le Papillon) by Jean-Dominique Bauby.  This is a memoir based on the true life events of Bauby, a french director of Elle magazine in the 1980s.  While this memoir is a tragic window into the life of an individual confined by physical paralysis, it shows how incredible and perservering the human mind can be.

Jean-Do, recently divorced father of 3 despite having good health, suffers a massive stroke, that leaves his mental capacity untouched, but his whole body paralyzed.  The only movement that he is capable of is blinking his left eyelid.  His only system of communication is through the form of someone going through the letters of the alphabet, with Jean-Do blinking on the letter he wants; letter by letter, a word is formed, and word by word, he forms a sentence.  Before his stroke, Jean-Do had signed a contract with a publisher to write a book, and although the publishing company doesn't believe he is capable of writing a book, Bauby says he is still on for his contract.  Each night, Jean-Do spends hours trying to craft a perfectly formed paragraph in his mind, and then for 4 hours in the day, he dictates this paragraph to an aide in the slow letter-by-letter form of communication.

It is tragic to hear Jean-Do describe his oppression: once an outgoing and humorous personality, he can't possibly keep up and make jokes with his slow communication; he feels that he can't be a father to his children, who he wants to hug and play with; he can't communicate the aches and pains and itches he feels.  But in this state, Jean-Do says he is able to cultivate his imagination, and his mind and mental capacity is a way to escape from this physical prison.  Reading this book is a reminder to be grateful for the abilities you have, and just because you have a disability, that does not mean it has to define or limit you.

There is a movie of the same name, which will probably be my favorite movie of all time.  At times, it is claustrophobic, as you see the world from his point of view.  But this is a wonderful, poetic movie that originally drew me to the book.  Here is the trailer:

http://www.youtube.com/watch?v=G69Zh7YIg8c

The Spirit Catches You and You Fall Down

“’The doctors can fix some sicknesses that involve the body and blood, but for us Hmong, some people get sick because of their soul, so they need spiritual things’” -p.100

I was debating whether or not I would include The Spirit Catches You and You Fall Down in my parent's blog.  While I considered this to be a very interesting read, this text by Anne Fadiman is very different than the other books I have read and included here.  This story is based on a true story, a true tragedy, of a cultural collision between a Hmong refugee family and American doctors both concerned with caring for a severe epileptic child.  This is such a medically and culturally dense book that outlines the radically different approaches that Hmong and Americans have to medical treatment, and the perception of medical conditions themselves.  What I gained from this book is that treating a medical condition or disability takes teamwork above all, and even though a parent has different approach to caring for their child, they are trying to do what is best for their child.  Seeing the failure between parents and doctors to build a trusting relationship in this book made me realize just how important it is to value the parent's role in educating students with special needs.

In the book, Anne Fadiman describes the real-life failed struggle between the Lees, a Hmong family that immigrated to California in the 1980s, and American doctors to care for their epileptic daughter Lia resulted in irreparable brain damage.  Epilepsy in American society is perceived as neurological misfirings in the brain, to be treated with anticonvulsant medication.  In Hmong society, epilepsy is known as qaug dab peg, or “the spirit catches you and you fall down,” where a human’s body is taken over by malevolent spirits after their own soul wanders away from the body (Fadiman 48).  Although this condition is considered harmful by both societies, the Hmong view it as somewhat of a status symbol, because patients often “experience powerful senses of grandeur and spiritual passion during their seizures and powerful creative urges in their wake” typical of Hmong religious shamans (Fadiman 29).  While American doctors perceived the best treatment to be a strict regimen of medication, Lia’s parents preferred to consult with a religious shaman and sacrifice animals to help Lia’s physical and spiritual well-being.  They even changed Lia’s name in hopes that the alleged malevolent spirits attacking her would mistake her for someone else and leave her body alone.

  Even though both Lia’s family and her doctors sought to help Lia, Lia’s parents failed to see the connection between a seizure and the detrimental effects it had on the brain.  At times, Lia’s mother would stop giving Lia medication because she believed too much medication would be detrimental over a long period.  While interpreters could explain a doctor’s instructions to the Lees, they would be confused when the medication created Lia to be lethargic, ultimately believing the medication to be bad for Lia.  For a point in time, Lia is put into foster care services because the confusion the Lees have over administering medication, which only heightens the tension between the family and the American doctors.  Ultimately, Lia suffers one final, crushing seizure that leaves her braindead.

As I began reading this book, I believed the customs and practices of the Hmong to be bizarre, and was frustrated over the fact that they stopped giving Lia medication.  However, after finishing the book, I concluded that this was a failure of both parents and doctors.  The Lees loved Lia dearly, and wanted to do everything in their power to ensure her health and safety.  While they believed treating medical conditions should treat the whole soul, the American doctors saw her disorder in purely medical terms.  It is commonplace in industrialized societies to believe that when something is wrong with your body, it is not an illness of the whole soul, but rather a misfunction of the body part (weak chest, nervous stomach).  If the doctors were more willing to meet the Lees halfway on medicinal treatment, instead of casting off their beliefs as wrong, maybe Lia's fate would have played out differently.

The Curious Incident of the Dog in the Night-time

“Mr. Jeavons said that I liked maths because it was safe. He said I liked maths because it meant solving problems, and these problems were difficult and interesting but there was always a straightforward answer at the end. And what he meant was that maths wasn’t like life because in life there are no straightforward answers at the end.” -p.61

I think it’s pretty safe to say that my parents and siblings are strong type A personalities; they are impeccably organized, very work-oriented, and value being on time.  When it comes to these aspects, I couldn’t be farther apart than them.  Growing up with ADHD, I have always struggled with my organization skills, my persistence when carrying out a task, and my time management.  We have jokes about how I’ve been always in my own world and every time we go out as a family I am without fail the last one out the door.  Even though my parents always reassured me it was okay being different, that I had talents of my own, I sometimes wished there was some way we could just be able to see how each other’s brains functioned.  I felt that if that were the case, it would be easier for my family to understand that my tardiness was not completely a sign of carelessness or disregard for others.  I really loved reading The Curious Incident of the Dog in the Night-time, because I felt that I was able to understand and gain a deep understanding of how a child with mild autism thinks and functions. 

 This novel centers on the protagonist and narrator Christopher, who is a fifteen-year-old living with his father in England.  At the beginning of the novel, Christopher discovers his neighbor’s dog Wellington dead in her lawn, and wonders who would kill Wellington and why.  As the book progresses, the protagonist explains that we are reading his murder-mystery novel, and he was prompted to write this by his teacher.  The book does a wonderful job of explaining how Christopher's strengths and weaknesses are unique from most other people, and this both helps and hinders his ability to solve the mystery of who killed Wellington the dog.
Christopher has a very matter-of-fact tone when narrating the book, stating his book will not be humorous because he does not understand jokes.  He has difficulty understanding other people's emotions. While he struggles to develop this perception that comes easily to many, he has incrediblly advanced math and memory skills, being able to name every country and capital in the world, and every prime number up to 7,057.  While he works on the more elementary skill reading emotions and feelings at his school, he is also studying for his A-level exam in the hopes of going to college, a feat no one at his school has completed before.  As Christopher tries to solve the mystery of who killed Wellington, we see instances where his social deficits create conflict for him, but we also see how he is able to overcome them and solve the mystery.
I love that Christopher understands and appreciates his strengths and weaknesses.  The illustration that he provides for how his mind works is so complex that it doesn't even seem that he should be labeled as a disorder; he is just extremely unique.  I learned that I think in ways that are very different from Christopher; I love open-ended questions, thinking in abstract concepts, rather than structured right and wrong answers.  Christopher loves math because he loves structure and knowing that there is a concrete answer for a problem.  It is important for me to understand how people like Christopher thinks, because I will plan to be teaching children who have mild autism, and prefer the structure that Christopher enjoys.

Welcome to Holland

"It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts."

Emily Perl Kingsley's poem "Welcome to Holland" helped me understand the parent perspective of children with disabilities more than any other text.  Having a son who was born with Down syndrome, Kingsley says in the poem she is often asked to describe the experience of raising a child with special needs.  She compares the experience to packing and preparing for a trip to Italy, but then ending up in Holland.  Just as you prepare for a trip to Italy by learning Italian, buying guide books, and making plans, you make many expectations and plans for your future child.  You expect them to be healthy, to walk, talk, and play sports just like everyone else.  Ending up in Holland means that the plans you made for Italy cannot happen the way you thought they could.  Even though parents are not grieving a death of their infant, they are grieving the loss of the life they imagined for their child.  Kingsley shows that it is normal to have these feelings of loss, and this pain will never go away completely.  Despite this pain, however, parents can learn that there is a beautiful and happy life their child can live, even if it did not align with the expectations they had originally planned.

*If you click on the right side of the blog on my full profile, I have attached an audio clip of a song based on this poem by Will Livingston.

http://www.our-kids.org/Archives/Holland.html

Well Here Goes Nothing....

A white blank page is one of my least favorite things in the world, right up there with washing dishes and accidentally getting a paper cut under my fingernail.  I have emotions with no words to articulate them and fragmented sentence ideas, all swimming around in my head and getting tangled deeper and deeper into a knot.  When this happened in the past, I was told by my teachers that the perfect opening sentence will not just appear to me if I think hard enough; in fact, I shouldn't even spend too much time thinking, I need to just write.  So that's the course of action I'm taking here, folks.  Forgive me if this blog entry is a bit meandering as I try to entangle the knot that is my jumbled thoughts.

I'm trying to pinpoint where exactly on the "life and times of Claire" I should start filling you in on explain why I created this blog.  We don't have to dig too deep, probably just to my freshman year of high school, when I decided I wanted to pursue a career in special education.  My first semester I had a child development class, which I thought would come naturally to me because I had grown up taking care of my baby cousins.  The class itself I don't remember all that much, but I definitely remember the week when we observed a self-contained classroom for students with special needs at my school.  Before entering that classroom, I knew that I was never going to become a teacher, (ever), in my life.  The combination of my procrastination and anxiety made every homework assignment, test, or paper an absolute battle to complete.  Why anyone would want to stay in school as their permanent career was beyond me.  My eyes would constantly be glued on the clock, counting down the minutes until the bell rang and I could go home.  But the time I spent observing in the classroom was a complete change of pace from what I was used to.  I remember the students in the classroom, I remember how they greeted me enthusiastically everyday that I came.  They were eager to learn and they were honest learners; unlike a lot of my freshmen peers I encountered during the day, they didn't do or say things to make themselves look cooler to others.  They felt genuine.  I remember the teachers of that classroom, and how patient and positive they were with the students, even if the students got frustrated or off task.  They treated each of the students with respect, and according to their age.  I still remember the deep ache I had, wishing that one day I could provide that same respect and warmth to students who showed such an enthusiasm and honesty I wasn't used to seeing.

From then on, my path was more or less set.  I started volunteering during my study hours, participating in Best Buddies, and helping out during summer school.  I felt a real comfort and pride knowing what I wanted to do.  Even though I started out with good intentions, my education, particularly at Loyola University, is constantly reshaping and refining certain notions I have about the field of special education.  While in high school I was focused on the students and teachers that I met, my studies this year really helped me to examine an intricate piece of the puzzle that I had not given much thought to: the parents of these students.  When I was volunteering in a self-contained classroom for students with severe disabilities, and saw the teachers write notes for the students to bring home to their parents, I briefly imagined what the parents of the students must be like.  I remember automatically assuming, oh they must be saints, having go above and beyond to ensure the health and safety of their children.  But my thoughts didn't go much beyond that.  I didn't think of the path a family must take in coming to terms with a child's disabilities.  I didn't comprehend or appreciate how hard it must be for a family to realign all the expectations and dreams they had for their child.  

I realized that parents of children with disabilities are ordinary people put in extraordinary circumstances.  I believe the deeply complex emotions a family goes through, and the strength that comes from overcoming these challenges, is best illustrated through narratives.  Sharing these emotions and challenges will show that a disability does not have to isolating.  Books can validate the pain that we all feel, and find a new positive lens to look at life through.  I hope to share with you my favorite books that have provided me these new positive perspectives.  Though this blog is focused for parents of children with disabilities, I hope everyone can find comfort and joy in these books just as I have :)