Every Minute Counts
When my husband and I were first given sweet pea’s rare and
complex congenital heart defect diagnosis we asked a lot of questions regarding
her “quality of life.” At the time, quality of life was another way of asking
how “normal” sweet pea would be in order to take advantage of all that life had
to offer. Would she have a lot of hospitalizations? Would she be able to
participate in physical activities such as hiking, running, swimming and most
importantly golfing? Would living with half a heart affect her ability to make
friends and keep friends? With time, my definition of “quality of life” changed
from sweet pea behaving “normal” to sweet pea’s state of mind. A good quality
of life means that sweet pea experiences joy, love, and contentment no matter
what her physical, social, emotional and mental capabilities are.
As sweet pea’s parent, her chronic and life threatening
illness often compels me to be especially active when it comes to ensuring she
have a good quality of life. There is no time to be wasted when considering the
high mortality rates of her specific diagnosis. Every day, every hour, and
every minute counts and it troubles me when she’s unnecessarily unhappy and
bored. When a lot of parents are thinking about their children’s future, we
live in the moment. Our day-to-day life is simple and harmonious for the most
part even while dealing with a complex health condition and a variety of
trained specialists to support some of sweet pea’s developmental delays.
Process vs. Outcomes
Our local school district as well as our nation’s education
policy focuses a great deal on outcomes and goals with little attention to the
process of learning. Administrators and policy makers are more concerned about
what students learn instead of how children learn best. The result at the
classroom level stifles sweet pea’s independence and in fact is a disempowering
experience forcing her to be silent and compliant all for the sake of improving
test scores. This approach to education is at odds with the way sweet pea
learns and interacts with the world. Learning at home is a joyful and addictive
process for sweet pea. She has an intrinsic motivation to solve problems, ask
questions, tinker and make new games, stories, artwork and music. Even with the
most inspiring teacher in our school district, sweet pea would still be at the
mercy of discriminatory policy and administrative decisions that work against
her special needs status and the natural way all children learn.
Bigotry In Our Public School
Sweet pea was placed in a K/1 special day class for children
with speech delays and normal cognitive development last year. The class size
was small and the shared aid was especially skilled by working alongside a
nurturing special education teacher. I loved her teacher as much as sweet pea
did. For the most part, kindergarten was a pleasant experience for sweet pea.
However, as a parent with a child with special needs, kindergarten within our
school district was an eye opening experience to the bigotry embedded in a
system that was intended to “help” my child.
Not once but twice, I was approached by two general
education teachers that communicated their desire to have one of my daughter’s
classmates with autism removed from their school. I instantly loved my
daughter’s classmate and felt she made a great addition to the class. True, every
child comes with certain challenges but teachers and caregivers must rise to
the occasion out of love and human justice. Naïve I know because I expected adults to live up to my
expectation and the spirit of IDEA and FAPE.
At a time when my daughter’s school could have come together to embrace
children with special needs, they decided to turn their back and exclude my
daughter’s classmate that didn’t fit their idea of “normal.”
Combine the unsettling experience at my daughter’s school
with the decision to disproportionately cut funds and staff from special education (vs. the
general education population), it was time for my husband and me to look into
other options for sweet pea. It’s worth noting that historically the district
has made decisions that disproportionately affect children with special needs
and this wasn’t an isolated incident. You can see the results of their actions
in the abysmal graduation and drop out rates of children with special needs.
Dream School
If I were to design a school for sweet pea it would include
the following criteria.
- Public school free for all children regardless of race, income level, religion, disability, gender, language spoken and whatever other criteria yucky people use to discriminate against children.
- Inclusion setting with at least 10% of the student classroom population on an IEP. This is especially important to sweet pea. We don’t segregate her from our lives at home or in public so why should she be segregated in a classroom setting? The reason provided by the district was that in order to mainstream, sweet pea needed to become “normal” and because she needed some accommodation, it was best to put her in a SDC class where she could get the specialized instruction in order to develop. The types of accommodations she needed in order to access a FAPE were too burdensome to a general ed teacher especially in the areas of reading, writing, and math. This argument is disheartening because even in the face of it being illegal (she should be placed in the least restrictive setting) the truth of the matter is in a classroom of 30 kindergarteners to one teacher, no child is being served well. The general ed setting at her school is simply a recipe for failure and students and teachers who succeed are doing so in spite of the hostile classroom environment.
- Adults focused on process and outcomes equally. The local and national conversation isn’t balanced between process and outcomes. I would like there to be as much focus on the process of learning as outcomes. If the conversation were balanced, I believe very different decisions would be made to benefit our children.
- Decisions made based on responsibility rather than accountability. No high-stakes testing.
- A culture that promotes inclusion and independence for adults and children.
- Education means empowerment rather than today’s overwhelming standard of career and college readiness. I want sweet pea to go to school each day feeling empowered. To use her voice, have it be heard, cultivate her curiosity, be an independent and self-directed learner all within an inclusive school and classroom environment. Sweet pea is equal to all of her peers and I want her treated as such. While each child has their own unique needs, I have high expectations of all children (typical and special) and they should be given the respect and love that they deserve. Today’s policy makers and education administrators who focus their efforts on college and career readiness, design schools and systems that silence children and seek to extinguish any spark of imagination or curiosity for the sake of building “academic competency.”
- Celebrate the joy of learning and recognize when intervening in the process can either aid in the joy of learning or impede the joy of learning.
Education is a social justice issue for me. I never intended
it to be so. I mistakenly thought that going to school would be similar for
sweet pea as it was for me in the 70’s. I loved school. I loved learning and
still do. The unfortunate reality is that staying within our school district’s
system of special education would undoubtedly squash my daughter’s natural
process for learning and with no time to lose - our decision was to seek out
and join a charter school that shared our core beliefs about education.
Fortunately, I think we found a great fit. It’s a new charter
school with a focus on Montessori, design thinking and arts integration.
Sweet pea starts school in less than 2 weeks and we’re excited to be active
participants in crafting an educational environment that respects and promotes
an exceptional quality of life for sweet pea.
No comments:
Post a Comment