Friday, June 24, 2011

Certain Proof

Every single second, from the moment of diagnosis with hydranencephaly, is a struggle. The list of can'ts and won'ts is exceedingly longer in comparison to the cans and wills... fortunately, our little bees don't follow the rules assigned to them. One huge feat that many achieve is attending school, a feat that is a far cry from the "incompatible with life" prognosis at birth. This becomes a huge obstacle to the parents, to fight for the care their child deserves in the school system... to ensure their safety and that they are receiving the services they require in order to excel, not only on paper but in the every day school environment as well.

Certain Proof: A Question of Worth shares the lives of Colin, Kay, and Josh as they maneuver the education system... a system that claims to follow the belief of "No Child Left Behind" and "every child has a right to education." Both mentalities have a limit to who they apply to, children with severely limited abilities are very easily overlooked... Remember that children living with hydranencephaly are also living with cerebral palsy, this story could easily have been made about any of our children:

Film Summary
Certain Proof: A Question of Worth reveals the stories of three young American children who face segregation daily, and particularly as their families seek to formally educate them. Diagnosed as infants with cerebral palsy – an umbrella term for disorders to the motor control centers of the brain – communication for Josh, Kayla and Colin is often challenging and physically exhausting. No matter your cognitive ability or potential to learn, when you cannot speak or control your body in typical ways, it is nearly impossible to prove your intelligence or potential. For these students and their families, the seemingly insurmountable obstacle of proving their worth within the public schools is fraught with heartache, but also hope.

Josh, age 6, is confined to a wheelchair without speech and limited use of his hands. He uses non-verbal cues to hint at what he is thinking. Even though she has no proof, Dawn holds to the belief that her little boy is trying to communicate with a world that does not want to listen. She tirelessly advocates for Joshʼs education, but his public school is unclear what Josh understands or if he is capable of learning at all. The continual doubt renders his education little more than babysitting. Torn between fighting those that doubt her son and her own lingering questions of whether or not, 'he's really in there', Dawn seeks the proof she needs to help her son get the education he deserves.

An opportunity arises when a team of multi-disciplinary specialists invites Josh for a comprehensive assessment in order to determine his communicative potential. For Dawn, the thought of finally knowing if her son has real cognitive abilities is a mixed blessing. Either sheʼll be overjoyed or her biggest fears will be realized. Josh doesnʼt disappoint. Impressing each therapist with his skills, his mother finally gets the validation sheʼs longed for and the okay to keep her dream alive of someday hearing Josh communicate, “I love you, Mom.”

Imagine depending on a computer to say every idea youʼd like to communicate. Now imagine you canʼt use your hands to type and each word has to be entered using a stick strapped to the center of your forehead. Meet Colin, a 10-year old boy with enough charm to make any girl smile with just a twinkle of his eye.

His communication device enabled him to progress through the first two years of school, but the faster pace of third grade challenges Colinʼs ability to keep up. Solving problems and answering questions takes an enormous amount of energy as he tries to control muscles that are fighting against him. His mother, Debra, desires to have her son taught alongside typical children, but that dream gradually slips away as he begins to spend more and more time out of the regular classroom and into one-on-one special instruction.

Since his physical disabilities arenʼt allowing Colin to prove his knowledge and
comprehension in traditional ways, Deby feels the schoolʼs doubts are only setting Colin up to fail. Though the idea of inclusion is one that teachers and schools aspire to, the reality of teaching a child with severe disabilities in a typical classroom is beyond what most schools are prepared to handle. Both want whatʼs best for Colin, but have different views on how to achieve it.

Though she is able to speak, only those who know her well can understand. Cerebral palsy limits her mobility and communication skills, but not her spirit. A born leader, Kayla, along with her mother, Sandy, take on stereotypes at every corner they turn.The next corner happens to be middle school. When Kaylaʼs wheelchair rolls up to the doors of her new school, the teachers donʼt exactly meet her with open arms. Two of her teachers discuss their hesitation of having her in class and what affect it would have on the other students. How will Kayla be able to use a calculator or create a science project? Her classmates discuss their first assumptions upon meeting her and the unfortunate teasing that happens in middle school. Sandy readies herself for a long year of advocating for her child. Kayla readies herself for the same battle sheʼs always had to fight… to prove herself.

We hear from Kayla directly as she discusses the challenges and judgments she faces at school. Luckily, she maintains a sense of humor. “Whenever I start a new school, they look like a bomb hit them!”, she explains.

What the school soon finds is Kaylaʼs smart. The students start to realize that she grades higher on tests than they do. We meet Jessica, Kaylaʼs best friend, who sees behind her disability. From horseback riding to leading her science team, Kayla tackles each new challenge undaunted. 

 2 ½ years later
Although the assessment from the team of specialists years earlier showed Joshʼs ability to learn, Dawn shares that the school continues to have their doubts. They still have him doing shapes, colors and numbers. Things she knows he knows. For them the proof isnʼt there. Joshʼs work with a speech therapist outside the school system has yielded great results, though. He clearly has a “yes” and “no”. In an interview with both Dawn and Josh, we see and hear Josh answer poignant and revealing questions about his feelings towards his mother and himself.

Colinʼs struggles have worsened. Overwhelmed by the workload, his move to middle school has left him depressed and frustrated. The school says legally they cannot adapt his work from grade level standards, so they place him on a separate education track without any chance of earning a high school diploma, a path Deby desperately fights against. For her this isnʼt how inclusion is supposed to work. At the young age of ten, Colinʼs future hangs in the balance.

Kayla has now moved into her first year of high school. There is an unending deluge of homework every night. Sandy tells the story of a horrible night of schoolwork that left Kayla in tears. Even though her mom tells her not to do another problem, Kayla wouldnʼt stop. For her, there is no rest in proving her worth to the world.

How much proof is enough? Karen Erickson, Director of The Center for Literacy and Disability Studies at the University of North Carolina says unfortunately children with disabilities are being held to a different standard than typical kids. “When we can figure out how to teach these children, weʼve figured very important things to teach all children who struggle. Every child has the ability to learn in some way and our job is to figure out what that way is.”

The stories of these three children challenge us to rethink how we relate to and teach those living with disabilities.

Simply a prime example of one of the obstacles our foundation hopes to make efforts in overcoming... helping families receive the educational services their child, despite their diagnosis of hydranencephaly, deserves. Visit: for more information on the aforementioned film.

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