Why A School?

Originally posted October 21, 2016

When I tell people of my plans to open a progressive, inclusive school, they often ask, Why a School?  The answer to that is not simple and did not come easily.  

When we found out our daughter, Eliza, had a brain injury and would need extensive therapy for hope of a recovery, I started doing research.  I looked all over the country, all over the world, for options to help support her in any way that I could.  We did the traditional therapies - Physical, Occupational and Speech and Language.  We looked at The Institutes for the Achievement of Human Potential and followed Glenn Doman’s ideas.  We took a course at the Family Hope Center and did a home program for years under their guidance. We then switched to the National Association for Child Development’s home program.  We found a clinic in Graz, Austria which helped us get her off her G-tube, found an amazing OT and lactation consultant who had NICU experience and helped us breastfeed.  We did neurosuit therapy and CME (Cuevas Medek Exercises) in Los Angeles at the NAPA center and did conductive education camp through United Cerebral Palsy’s Boost Camp.  We spent four months out of one year traveling to San Rafael to work with Anat Baniel and her team and worked with other Feldenkrais practitioners as well.  I talked to neurologists about medications, surgeries, deep brain stimulation, nanoparticle development and brain plasticity.  I read books about child development, brain development, and growth.  The list goes on.

I always believed in the power of yet.  She couldn’t do many things - YET - but she would, she just needed the right support to learn and develop.  

After spending all of my time researching, working, learning and doing everything I could to help my child, I went to her first IEP meeting (her individualized education plan for starting elementary school).  It was a shock and a disappointment.  They didn’t care about any of it.  They would only do what was academically necessary for her to simply access school.  After Boost Camp Eliza was sitting independently and walking with a little help and a walking ladder, but these were not deemed academically necessary and they would not train  her aide to continue the work.  They weren’t interested in helping her progress or succeed, they didn’t care about all of the hours of hard work she had put in to gain the skills she had.  They were only required to help her access school.  Not necessarily learn, not progress, not get stronger or more independent.  Just access.

I was sent a letter explaining the other factors for the school districts refusal.  Here is that excerpt:  

A student’s IEP  must be designed to meet the students unique needs and be reasonable calculated to provide the student with some educational benefit, but that the IDEA does not require school districts to provide special education students with the best education available or to provide instruction or services that maximize a student’s abilities (Board of Education of the Hendrick Hudson Central School dist. V. Rowley (1982) 458 U.S., 176,200).  A School district mush provide “a basic floor of opportunity. . .(consisting) of access to specialized instruction and related services which are individually designed to provide educational benefit to the (child with disability)” (Rowley, 458 U.S. 176 at 201).  The intent of the IDEA is to “open the door of public education” to children with disabilities; it does not “guarantee any particular level of education once inside.” (Id, At P. 192).  The IDEA requires neither that a school district provide the best education to a child with a disability, nor that it provides an education that maximizes the child’s potential. (Rowley, supra, 458 U.S. at pp. 197; Gregory K v Longview School dist. (9th cir. 1987) 811 F. 2d 1307, 1314).

There are so many things wrong with this.  A child with disabilities is already facing an uphill battle, against his/her own body, societal norms and accessibility.  Shouldn’t school be someplace supportive where the child can learn to overcome hurdles and be given the best chance possible at success?  Isn’t that what we want for ALL of our children?

I was so angry. Reading it still makes me angry.  I wanted to see if other parents were angry too so I started asking questions.  The answers I got made me realize that we were in a pretty good district.  Even with everything they had said to me, other parents and children were facing much bigger and harder struggles with their schooling.  These kids needed more support and more understanding, not just access to school.  They deserve to thrive and be given the chance to show competence and independence.  

Every parent wants the best for their child.  Every parent will do everything they can to ensure their child’s success.  Every parent will give their child everything they can.  This is something I could do for my child, to give her the best chance to succeed.  To take what she has taught me and make the world better for thousands of other children.  Every child deserves the best we can give them.

It shouldn’t be this way.  
There should be a better way.   
I started to design a new kind of school.

Tanya Sheckley