Responsibilities of Privilege

Voice for the voiceless.  We are all put here for a different purpose.  It may not seem obvious at first but if we keep searching we will find it.  We can't all be the same.  It just isn't in the design.  Perhaps the differences are what challenge us and make us stronger.  Perhaps the disabled people are here to teach those who are abled to slow down and enjoy the gifts of each day.

When we take away all our identities and look deep within we find we are all similar.  We are searching to be loved and accepted.  While our identities define us they do not limit us.

 I learned many lessons inside the classroom with these students.  I learned to enjoy each bite, just eating was a major undertaking for many of these students.  I learned to accept each one as they are today and hope for a better tomorrow.  I learned that we do need to stop and smell the flowers or enjoy the bubbles.  I also learned that just because someone doesn't have an abled body doesn't mean they aren't striving the best way they can.  It was hard to witness them stuck inside a body that would not do what they wanted it to but they kept going.  They don't give up.

Each one of the children that I was able to see be picked up by their families lit up when they came into the room.  I saw the biggest smile on Amelia's face when her mom came one day.  She laughed too.  They cuddled and it was the sweetest interaction.  It was raw and real.

We must reach out and help and do our part.

I am fortunate to have the privilege identities that I do have.  I feel very blessed.  I also feel it is a great responsibility.

I also realize now how important it is that people with disabilities have the accommodations they need to succeed.  While it might seem excessive to an abled person it is not for someone who cannot do simple tasks simply because their body won't allow them to.

Everyone's story is different.  What will the next pages of your story be?

What is "normal"?

Diving into what is "normal".  I looked up what the on-line Merriam-Webster dictionary defines normal as and it is normal is, “usual or ordinary: not strange, mentally and physically healthy”.

The first definition makes me think well who wants to be normal, sounds boring.  The second definition of being mentally and physically healthy I believe most people strive for something along those lines, but how does one determine what is healthy mentally and physically for all?  Isn’t it relative? 

My last day in the classroom was bittersweet.  The children recognize me like an old friend now.  

“Hey Ms. Arinn, wanna come play?”  

For others it is a smile or a nod, they recognize me too even though they can’t say it, I know. 

Souls connected.  My life has been changed.  The idea of what is normal has been floating in my head.  This comes partly from our readings and partly from my recent experiences in the classroom.  At the end of the day there is an incident between an abled mind/body child and one that isn’t as high functioning.  The abled bodied child, Lisa is playing with ALL the people in the block center, all the toy people.  She has them on top of a small table and they are engaging in an activity that she is the conductor for… and then Sarah comes over and she wants to play with just two of the people.  Lisa decides she is NOT sharing.  So she rips the toy people from Sarah.  Sarah falls apart.  Sarah’s mom has come to pick her up during this time and witnesses the entire thing.  Lisa won’t share and is ugly about it.  Sarah starts to cry uncontrollably. 

Her mom and the teacher start talking to the girls.  Lisa is told to apologize.  She walks towards Sarah who is still very upset.  Lisa reaches to hug Sarah and say sorry.  She hugs her but Sarah is so upset.  She is sobbing to the point that snot is running out of her nose and drool is coming out of her mouth.  

Lisa yells, “EEWWW, that is so GGGRROOSSS”.  Stop, drooling on me.” 

The mom says, “She was crying, it wasn’t drool.”  Well it was drool.  I saw it.  But Lisa was so rude and it was uncalled for. 

Later the teacher and I talk about what is normal for each of the girls.  We surmise that Lisa would get in trouble for drooling on her brothers at home. While Lisa would not.  She drools and does it especially when she is upset.  So drooling behavior and what is “normal” for each of the girls is different.  The teacher talks to Lisa about how Sarah couldn’t help it and it wasn’t polite to talk to her like that.  Lisa has been with disabled children her entire life at this school and knows that it is unacceptable to speak about the differences this way. 

Normal is relative for each member of this classroom.  It changes each day for some of the children.  They each do the best they can with what they have.  I especially like what Jason Kingsley says in his article What I’d Tell That Doctor, “People with disabilities can learn. (p. 107).  I also like what Thomas Hehir says in Toward Ending Ableism in Education.  He said, “Encourage disabled students to develop and use skills and modes of expression that are most effective and efficient for them.”(p.515)  I saw in this classroom, and this is good. 

Night and Day - Closer look at Taylor

My first experience with Taylor was overwhelming. 

I could not imagine how the teachers and children function in the classroom with him. He seemed aggressive, disagreeable and hard to manage. Taylor is almost 5. If you saw him in a picture you would not know that he is disabled. He is a white male, bright blue eyes, and blonde hair. He is the only child of two loving parents. Taylor can walk with some assistance. He has seizures regularly. He has a very limited vocabulary and it is difficult for me to understand the few words he can say. I know I have heard him say “eat”. He is similar to a bull in a china shop when he is taken out of the special chair he sits in. He has very little impulse control. He will grab objects and put them in his mouth. He will throw toys and hit the other children. He grunts most of the time. The first day I saw him his nurse aid was out sick. He has a nurse aid because of all his medical issues. The classroom teacher had to literally follow him around and make sure he wasn’t hurting himself or other people. He was frustrated and would throw himself down. He would buck with his body too. The teacher often had to resort to putting him in his chair to keep everyone including him safe. He was all out of sorts. The teacher kept assuring me this wasn’t a typical day. I kept thinking I don’t know how you do this. When we went outside he was put into the swing and I saw the first signs of joy. He loves to swing. He has to be in an adapted swing because he can’t hang on to the typical chain swings with fully functional able bodied children use. The seat he used looked a lot like the seat used for a baby swing inside only much bigger. When we came back inside it was time for lunch. Taylor cannot feed himself without assistance. He requires someone to sit with him and present food on his tray. He is able with a lot of effort to grab his foot that has been cut in small pieces. He likes to try to negotiate using body language and grunts to get the food he prefers. He enjoys his food. It takes the entire lunch period for him to eat plus a little more time. Most of the other children eat, use the bathroom and get on their mats while he is still being fed. It takes a lot of concentration and effort for him to simply eat. Transitions are difficult. He doesn’t want to lay down. The teacher must sit with him while he tries to rest just in case he has a seizure or tries to get up and hurt another child. On this day all I see is destruction and frustration from him except for when he was in the swing. My second experience with Taylor was two days later. On this day his nurse aid was there. She has been working with him for almost a year. She brags about all his progress to me. Taylor is a completely different child with his nurse aid with him. He smiles and laughs. He is happy. He knows what to expect. He is still defiant at times but she resolves the issues quickly. She engages him indifferent activities in the classroom. She moves with him like a shadow. They have a rhythm and an understanding. This is not to say that the classroom teacher doesn’t love him but it is evident that Taylor feels different about his nurse aid. He is so much calmer and receptive to her corrections and attention. He grunts but doesn’t throw himself on the ground. He becomes part of the group activities much more seamlessly. When we move to outside he gets excited. The nurse aid moves him into the swing. She knows exactly how he likes to be pushed. He likes to swing from side to side. He laughs. The harder she pushes the happier he is, it seems like he likes the feedback and the movement. He is observant, taking in all the sounds. She notices and moves him so he can watch the cars driving by. He keeps on turning his head because of the sound he heard so she turned him. I watch as he moves his head to follow the moving cars. Swoosh! Swoosh! The cars whiz by. Taylor stays content while we are outside, then it is time to go in. He does not really want to leave but decides to give up the fight. His nurse aid tells me that his parents are very proactive with his care. His mom has been takinghim to Boston to receive hemp oil in a trial medical treatment. There have been side effects that were not expected but they believe it is the combination with milk and the hemp oil. He experienced several weeks of diarrhea following his treatment. His mom kept him home during that time. There is often communication via text messages with the teachers, nurse aid, and parents. His care is a team effort. Lunch time is much smoother when we go in this day. Taylor is a totally different child than the one I witnessed my first time in the classroom. He still takes a while to eat, much longer than the other children. She later transitions him to the mat. He wants nothing to do with napping. She literally has to hold him and protect herself from him. He is fighting to rest.

The nurse aid and teacher work together to clean him up and contact mom. He is picked up early from school.

My third experience with Taylor was today. Today he did not  have his regular nurse aid but a different one that has been with him regularly on Thursdays. He is not as happy with her but listens and does well. During nap time another woman comes in to work with him on sign language. Taylor is lucky because his parents have the financial resources to provide extras most children would not be able to get.

This makes me think of the privilege money affords disabled children. There are children who are not afforded the resources Taylor receives. When I first met him I thought why is so defiant. But then I realized that he was not getting what he needed nor what he was used to. I think we are all that way, it is just that he can’t express it in words. He can’t say where is my regular nurse aid? Why is this lady here today? He grunts and throws himself on the floor. It reminds me we have to look at the whole student not just the pieces.

I am so thankful for my abilities. I am also thankful my eyes have been opened and my heart for knowing Taylor for this brief time.

A Closer Look at *Amelia

      Amelia was born at 26 weeks gestation.  She is 4 years and must be strapped into a special chair.  She can hold her head a little bit but it tends to fall to the side and away from the back of her chair.  She can smile and giggle.  She expresses emotion and makes sounds but I cannot tell yet what they mean.  She’s a beautiful girl.  When the children are in centers she must stay in her chair or be put down on the carpet where she lays down.  She can’t sit on her own.  She needs to be monitored closely because some of the more aggressive students move towards her and might hurt her.  When we move outside the teacher assistant pushed her towards the covered area that had the swings under it.  It is an enormous tent with ample space outside of the space allotted for the swings.  The teacher assistant moved Amelia to the mats on the ground and sat with her.  Amelia laid on the mat and listened to the birds chirp.  The assistant teacher read stories to other children that came to visit her on the mat and Amelia could hear them.  She smiled and cooed.  She stayed in the same position until the teacher assistant moved her.  She placed in back in the chair when it was time to go inside.  Amelia was the last to enter the classroom.  The teacher assistant cleaned her face and wiped her to remove the sweat on her from being outdoors.  She spoke so sweetly to Amelia.  As the students transitioned to lunch the teacher assistant volunteered to feed her.  Amelia has a feeding tube in her stomach but can eat some foods with a lot of assistance.  She had what looked to be baby cereal in a small bowl.  For the next twenty minutes the teacher assistant patiently fed her.  It was a lot of work for Amelia to swallow each bite.  But together they got through it and she ate every bite.  The teacher assistant encouraged her and smiled at her.  She was so patient.  It took almost thirty minutes for Amelia to eat this small bowl.  The teacher assistant cleaned Amelia’s face and tended to the changing Amelia’s diaper for nap time.  After she did this Amelia was placed on a mat on the floor for nap time.  I was asked to sit a chair beside her and make sure she did not kick the cubbies or spit up or choke while she rested.  Amelia has to be monitored during rest time because she does not  fall asleep and can quickly choke on the food she has just eaten.

    I take for granted my able body most of the time. I have had injuries but never anything like Amelia experiences daily.  I have always been able to feed myself and do not have concern about choking during my sleep.  I take this ability for granted.  I have never had a child in my class with these types of disabilities nor have I had more than one child that I had to sit beside during nap time.  I did not realize how easy this was until I witnessed all the different needs of the students in this class.  There are so many things that can “go wrong” and it completely out of everyone’s control.  Students are not doing these things on purpose it is just how their body is.  As someone who loves to dance, not being able to move and eat by myself causes great distress to even just think about it. 

Meet My New Friends

Thursday, June 5, 2014 – My first day in the classroom.  I made sure I wore something business casual but comfortable enough to move around and help as needed.  My file was waiting for me I signed in and headed off to the classroom feeling well prepared for what was before me.  I was the sixth adult in the classroom of twelve students.  After teaching 24 with only one other teacher I honestly thought, “how hard can it be”?  We have a 1:2 ratio.  Nothing could have prepared me for today.  Nothing.  I “know” the rules for hand-washing, taking turns, lining up, play-ground safety, I can write lesson plans with my eyes closed and teach a classroom of 4 year olds with one eye open.  A classroom of 4 year olds that might have one or two speech issues, and some students with attention problems, perhaps even one that may like to bite occasionally or knock his friend down because, “he thought he might hit him first.”  But today was a life-changer, I didn’t expect.  I walked into a room already in motion.  There are 12 students, only 12 and 6 (including myself) adults.  I washed my hands and started observing, learning names.

*All the names of the children have been changed to protect their privacy. 

Sally* a four year old girl who has CP, was on the ground throwing a fit when I got done washing my hands so I went over to her.  She quickly started to pull on me so she could stand up.  She is unable to stand without assistance.  The teacher told me I had to let her be on her own.  She cried and cried.  I tried to engage her in play.  Then the teacher let me know that she is unable to engage in meaningful play yet because she is developmentally 18 months old.  She is unable to feed herself.  She can scoot on the floor but throws herself around in frustration.  She isn’t able to communicate verbally.  She screams and makes noises.  She has issues with her vision and looks all around and nowhere at the same time. 

Amelia* who was born at 26 weeks gestation.  She is unable to sit up alone at 4 years old.  She smiles and giggles.  She is primarily fed by feeding tube but can eat very soft food that is spoon fed slowly to her.  Her vision isn’t very good, and she requires someone near her at all times.  She is unable to speak but communicates through body language. 

Taylor* is 4 years old.  He has seizures often.  He is able to walk on his own, however deals with behavior issues, speech issues, and his ability to communicate verbally.  His vocabulary is very limited and sounds like mostly moans to me right now however the teachers understand him.  He has a beautiful smile.  He is easily frustrated and is known to bite and smack the other children if left alone.  After I was in the room a little while the Lead Teacher informed me that he actually requires a full time nurse for just him and she is not there today.  There also was not a substitute sent to replace her so now the Lead Teacher must follow his every move rather than teaching the whole class.  He gets into everything and is destructive. 

Lilly* is 4 years old.  She is a bright child.  She quickly engages with me and invites me to play with her.  She asks my name which I haven’t been asked by any of the other children I have met yet.  She has excellent verbal skills, questioning skills and has a complete understanding of the room and the people in it.  She helps me learn about the rules.  We sit together and chat about Playdoh.  We make snakes together and roll balls of Playdoh.  She’s excited about her upcoming graduation and attending Kindergarten very soon.  Lilly does not require any modifications to her educational plan.  She is not a part of the marginalized population in the classroom. 

Jerry* is 4 years old.  When I first meet him he is seated at the table with other children playing with Playdoh.  He asks me to help him with the lid and I do get the lid started but don’t do it all the way because I am not sure he isn’t just trying to get me to do something he can do for himself.  I am the “new” person in the room so I know that the children will try to get me to do whatever they can.  I help him get the lid started and actually almost off because I watch Jerry and he struggles as he tries himself. He has a sweet spirit, this is quickly apparent.  We all sit together making snakes and cutting the Playdoh.  I help him some and he smiles. 

James* is 4 years old.  He doesn’t say much and seems to find things to get into constantly in the classroom.  He doesn’t talk at all.  Later I find out he is autistic.  He grabs different toys in the classroom and just seems to move them from place to place. 

Chris* is 4 years old.  He is not part of a marginalized population.  He is an average student, a mischievous little boy who likes to play and build with blocks.  We talk about books and castles. 

Ben* is 4 years old.  He is a little boy with Down Syndrome.  He enjoys playing with blocks and running outside.  He is delayed in his speech.  His smile will melt your help. 

Melissa* is a 2.5 year old girl.  Today is her second day in the classroom and at this school.  She is terribly overwhelmed with all that is going on.  I do not learn a whole lot about her during my time in the classroom today.  Her mom is called to pick her up early because she is unable to emotionally handle being in the classroom. 

As I sit here reflecting I am unable to remember the other children in the class.  I did not take paper with me so I could fully engage with the students my first day and get to know them. 

The classroom was like a busy beehive, full of activity.  The classroom is filled with age appropriate materials.  The materials are not new but rather well loved and worn.  The children’s artwork is on the walls.  There is child size furniture in the room and only one adult size chair.  There are also adaptive chairs in the room.  

     We spent the first hour and a half of my time inside the classroom.  The second almost hour was spent outside on the playground.  The playground has been adapted to meet the different physical abilities and disabilities of the students.  The third portion of my time was spent back inside the classroom preparing and eating lunch. 

One child is confined to a chair on wells and strapped in so she doesn’t fall out.  She lacks the control needed to move her body as she chooses except for her head and eyes with purpose.  There are also restraining chairs for students to keep them safe when their behavior gets out of control or unsafe for the others in the room.  There are chairs to hold students who cannot hold themselves up while they eat.  The Lead Teacher informed me that it was not at all a typical day in her classroom.  She was beyond frustrated for many reasons. 

I have NO idea how she functions in this classroom after my experiences today.  While I realize it was not a typical day, it was difficult.  It was like little time bombs waiting to go off at any second.  Even with all the adults present there were not enough hands to handle all the happenings in the room it felt like.  The teachers are caring and truly love what they do.  The children are doing the best they can and it is HARD.  HARD.  Plain and simple, nothing taken for granted and lots of love being given freely, and firm corrections and limits constantly applied.  I felt like I was in a tornado, so much for feeling well prepared.  I compare it to the experiences I have had as a mother over the years.  I was married to my best friend, educated, an educator, and loved children.  I had started caring for other children at the age of eleven, who could be more prepared than me?  Jeff and I lead a youth group at church together and went and picked up our nieces to just spend time with them regularly.  We were prepared, right?  NO.  Nothing prepares you for parenthood, it is a day to day learning experience, the responsibility is always there, and never goes away.  It is rewarding and overwhelming all at the same time.  This is how I feel about the classroom experience my first day.  Nothing could have prepared me and I felt like I was prepared.  I was so wrong but the longer I stayed with the children the more I got to know them. 

The power in this classroom shifts from moment to moment.  Obviously the ultimate “power” or locus of control in the room is the teacher or rather the responsibility lies in her hands but I see the power shifting.  The power shifts from student to student, an incident to incident as bodies react unpredictably and involuntary or not very much at all for some students.  Alinsky states that, “when we talk about an individual’s power we often refer to them “lifting himself by his own bootstraps”, we are referring to power.” (1989, p. 52)  Power looks very different inside this classroom to me.  I saw children pulling themselves up by their bootstraps over and over again.  

Jerry is a student with power.  I found out over my time in the classroom that Jerry has CP.  He is developmentally delayed and has issues with hand-eye coordination.  Jerry has one of the sweetest spirits I have ever witnessed.  When we got outside he fell at least once for every ten steps he took.  His legs are knee-knocked and it did not appear he had worn his leg braces this day.  Over and over again he pushed himself back up off the ground and smiled.  He said as he looked me in the eyes with a smile, “I fall down a lot but I always get back up.”  Jerry loves bubbles.  We blew bubbles together.  Then his teacher got out the big bubbles and blew them in the grass towards the children.  Jerry would reach to pop the “biggest bubble”.  The joy in his face and spirit inspired me.  After we got inside Jerry had difficulty eating because he was coming down with something.  His nose was stuffy.  He was taking longer than usual to eat.  He didn’t give up.  I mentioned to the teacher that I thought he wasn’t feeling well when they asked why he wasn’t done eating.  He was eating peanut butter, drinking milk and couldn’t breathe as he ate.  But guess what he kept trying.  He started to get sicker and his parents were called.  They were coming to take him to the doctor.  While he waited, little by little he ate his lunch.  Jerry may not have power over his disability but he demonstrates as much power as humanly possible by his desire to live and grow.  Later I found out that a year ago Jerry couldn’t even walk. 

I could write pages and pages on my experience.  But decided to lay a foundation and focus on Jerry for this journal because my experience with him really stood out and the Lead Teacher. 

Going into this experience I felt prepared after my first 30 minutes, I knew I was completely unprepared.  I thought I had it difficult with 24 students and an assistant.  The patience of the teachers was remarkable.  The love in the classroom always present.  I have taken for granted my able body.  I am guilty of complaining and wishing my life was different.  Even when I have had a broken ankle, or knee my pain and obstacles were nothing compared to their day to day lives.  I have so much respect for these children and teachers.  I used to think I could work in Special Education and I know now that I could not.  My skin is not thick enough.  I had tears welling in my eyes several times and my patience was running thin.  I am an extremely patient person especially with young children but my patience for watching them stuck in bodies that won’t do what they want was so difficult.  These children and the teachers need everyone they can get in the classroom that is willing to help.  I now feel selfish for believing they had too many people and the ratios were too low. 

           

Exploring Social Justice inside an Easter Seals Classroom

For my Social Justice Project I have decided to volunteer for 15 hours at Easter Seals.  The Easter Seals Center I will be volunteering at is directed by *Ms. Carr.  I went in yesterday for my volunteer orientation.  It was very informative.  I signed all the paperwork and gave her my test results for the TB test that is required to volunteer there.  I have to use other names than then children’s real names to keep their information confidential.  She shared with me some basic guidelines and rules to follow.  She also gave me a quick tour of the center.  I honestly felt well prepared to begin my volunteer work after my orientation and tour.  The director repeatedly went over the dress policy for business casual.  I have many years of experience in the early childhood educational setting.  I shared with her that I would like to work with students who are disabled and in the lower SES. So we agreed on the Preschool classroom, where there are children ages 4 – 5, the students are a mixed group of disabled and able bodies, some with developmental delays and others with none.  While we were talking in her office I fully expected the classrooms to be well stocked with manipulatives, markers, paint, a preschool teacher’s dream to be honest.  

But what I found was well loved room but not the resources I expected.  The bulletin boards were made with hand cut letters, dust lined the shelves.  As an experienced teacher I wondered how this could be with so many adults in the room.  I can’t remember the last time I had to hand cut letters out, but this told me they didn’t have funding for extras like this, unlike what I thought.  There were five adults in the room with 12 children when I did the tour.  I left thinking my first experience would be positive and refreshing. 

There are additional classrooms that most early childhood centers don’t have, like the speech class, and occupational therapy class.  The teachers all have their Birth – Kindergarten Certification Bachelor of Arts.  The assistance have their associate’s degree and some have their B-K Certification BA as well.  The teacher’s appear to function well as a team.  The students appear to be well taken care of and engaged.  The room is divided into learning areas.  There is a bathroom close to the classroom for students to use and a door to the outside for relatively easy access to the outside.  It seemed the teachers were not all busy when I came by for the tour.  It looked like there were more teachers than necessary in the classroom.  My first impression is that there are more adults in there than necessary.  However the volunteers do not count towards the ratio of the students in the room so I understand that is why there are extra adults.  I wish I had had volunteers in my room to assist with the twenty four students and only one assistant.  It appears there are more hands than needed in this room with only 6 students that are either delayed or has physical limitations.  This experience makes me wonder why we don’t have more volunteers in a regular classroom.  It just doesn’t seem fair that people would want to volunteer or are encouraged to volunteer with children with delays and not with children that do not experience delays.  All children need love and attention and teachers can all use extra help and support.  It doesn’t seem like these teacher know much more than I do from my first interactions with them.  I know that I am not allowed to take children to the bathroom, feed them or be alone with them.  I understand the reasoning because they do not know my abilities and cannot let everyone that volunteers have all the responsibilities since they won’t be there full time, however I do feel like I could handle teaching the children.  Right now it seems like they get way lower ratios than I experienced.  The ratio in the room is 1:6.  My ratio was 1:15.  Honestly the ratio seems a bit unnecessary.   I do realize all I did was tour the school quickly.  I will be interested to see how I feel about it after I am in the classroom with the children.  Without really talking to the teachers and just having a glance at the room it looks like 4 students have serious delays and fit into a marginalized population and that the rest do not. 

     After my first visit I thought in the classroom I decided to go back and write my first journal on my preconceived notions about the volunteering.  I think it is important to look at my own growth.  I sat down with the director to find a time that is most beneficially for my reflections and the classroom to spend my time in the room.  There is another student that will be in the room on Monday, Wednesday, and Friday mornings so I am choosing Tuesday and Thursday mornings to complete my hours over five different sessions to total 15 hours.  * It turned out my hours had to be completed much faster due to the class restrictions and deadlines for my school.