"fearless and creative"; and her youngest, "observant, sweet and athletic." The school was founded as a legacy for Eliza, who passed away while it was in development. Says Tanya, "We decided she had taught us too much and there were too many other children out there who needed opportunities like this school to stop and that we needed to open it."
Every parent has some trepidation about sending their child off to kindergarten. It’s a new place, new teachers, for some, the first time they’ve been away from home that long. For me, sending my daughter to kindergarten was terrifying.
Eliza was born with cerebral palsy after suffering a stroke in utero. By the time she was five, we had worked with experts in California, Philadelphia, Los Angeles, Canada, Hungary and Austria to work to find the best therapies to help her recover. We knew the brain has plasticity and we knew that every day she got older, tasks got harder to learn. We felt a sense of urgency to find the right mix for her brain to reach its potential.
When it came time to send her to school, she hadn’t been away from us for more than a couple of hours at a time, with someone who was carefully chosen to work with her. She wasn’t walking, or sitting, on her own, she couldn’t talk and didn’t have a communication device to express herself. I was sending my baby to go spend the day with strangers, called school, and I was scared and unsure, but I also knew that she needed to grow and learn.
When you send a “typical” child to school, you register, you provide some paperwork and documentation and you show up on the first day and meet their teachers, give your child a kiss and hope they have fun. When you send a child with disabilities to school, there are meetings, lots of meetings, and assessments, lots of assessments, everyone wants to meet, ask her questions and create opinions about what she can do and is capable of.
In my daughter's case, her motor skills were about those of a four month old. She could reach and grab, but not point and touch. This meant that therapists would expect she would like baby toys, those
cause-and-effect toys meant for four month olds. She did not. She would yell at them, she would give wrong answers and laugh, she would throw the toys on the floor, because she was five, not four months old. But the expectation was, because that’s what she could easily interact with, it must be what she likes.
My daughter, like many kids with disabilities, was cognitively age appropriate. This means that she was of average, or above average intelligence, just like most of the general population. People with physical disabilities are no different than the rest of us, except they have a small injury, usually affecting the basal ganglia of the brain, that affects movement, not intelligence. But that is not our expectation as a society or a school system.
As she was going through all of the assessments for school, I believed it was the work of the experts to make school accessible to her so that she could get the same education as everyone else. I asked for my daughter's aide, who would be hired by the school district, to do some training with our family, to continue the work that Eliza had worked so hard on, so that she could do these things at school. I wanted continuity and continuation, I didn’t want her sitting in a chair all day and not getting a chance to move. They said no, and they gave me this as part of their response:
A student’s IEP must be designed to meet the students unique needs and be reasonably 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 dust V Rowley (1982). A school district must provide “a basic floor of opportunity. . .(consisting) of access to specialized instruction and related services which are individually designed to proved educational benefit to the (child with disability)” (Rowley). 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). The IDEA requires neither that a school district provide the best education to a child with a disability, more that it provides and education that maximizes the child’s potential. (Rowley; Gregory K V Longview School dist).
Yes, this clearly states that they will not give my child the best education possible or one that will maximize her potential, but they will allow her to access the education. This meant she could be present, but they didn't have to guarantee an education. I was furious.
Let’s imagine that this was the public school mission for every child. Would this be an acceptable educational standard for our youth? If your answer was “no” and you wouldn’t send your child there, then I ask: “Why is it alright for our children with disabilities?” We should set our expectations higher.
This is what I refer to as the expectations gap. It's similar to the achievement gap, which kids with disabilities also suffer from, but that is generally used to describe lower socio-economic demographics and the struggles with school. The expectations gap happens when you have a child who is intelligent, but has challenges, and so we are conditioned as a society to expect less.
My first experience with this came during the assessment process for her IEP (Individual Education Plan), when she was given baby toys to play with. Our second experience with the expectations gap came in her very first IEP meeting. Before we looked at all of her assessments, they were asking if she should be given until 22 to graduate.
We looked for other options, other inclusion schools where Eliza could be with her peers and get the therapeutics she would need to be successful and independent. We looked for a school that would offer her more than a “basic floor of opportunity” but would actively work to help her reach her potential. But we didn't’ find one. So, in August of that year, we sent her to school. And we started the paperwork to launch our own school.
What happened was nothing short of amazing, depending on your expectations. Eliza was sweet, observant and social. She loved to play and laugh. She was creative with a great sense of humor, and for all these reasons, she made friends quickly. We were fortunate that they offered her an inclusive experience. She started kindergarten in a typical classroom with typical kids and an aide to support her. I was terrified the kids would make fun of her, be mean to her, not like her; but the opposite happened.
When you have a group of kids who don’t have the same conditioning and pre-conceived notions of disability that adults have, kids just see kids. They learned to play together, they learned to communicate, they had fun. She still had bad days, and she still found ways to tell me about them, but she was being a kid.
That didn’t mean she was getting what she needed. At the end of the year, she still didn’t have a way to communicate. Because the school district hadn’t granted my request to train the aide, she didn’t work out and the ended up hiring another one, of my choosing. She was getting limited therapy and being taken out of her regular classes to do it. So now we had a child who already took longer to complete classwork because of her motor challenges and she was getting less time. It was frustrating for her and for me.
Many of the things I was terrified about didn’t take place. Kids can be kind and inclusive if you give them the chance. But I was still facing the battle of the expectations gap.
In our IEP meetings before second grade, I was asked about Eliza's academic goals. We had done the therapeutic goals, but there were no academic goals written. These were never written because her goals were the same as every other kids in her class: get a good education and go on to college or career or whatever she decided. The team asked about putting her on modified grades. In special education language, modified is different than accessible.
Modified grades meant that she wouldn’t get a diploma, she wouldn’t graduate high school—she would get a certificate of completion, which means nothing. At six years old, they wanted to take away her chances for success. Now, this may be appropriate for some children. Graduation isn’t possible for everyone, special needs or not. But, she was in the upper level group for math, she was in the upper level group for reading, she was in the top half of her class in all her academics, and they were suggesting taking away the opportunity for a high school diploma. Because of her disabilities. Because, they as a team of specialists and experts, hadn’t figured out how to accurately help her express herself in her two years of school there.
Let’s go back one more time. Your typical child is in the top half of their class, performing above average academically. What would you say if the school district thought modified grades were a good option? This is not OK for any child.
Often the only person with high expectations for their child is the parent, who advocates relentlessly for support.
The expectations gap runs deep in our school systems and our society. Almost thirty years after the passage of the Americans with Disabilities Act, many public places are still not accessible. The highly publicized Endrew F. V. Douglas County School District (2017) case in the Supreme Court ruled that IDEA requires meaningful benefits, however the meaning of "meaningful" is still left to question. There are changes happening. But until there is a shift in how we train therapists and how we look at disability as a society there won’t be change. Everything we design and build should be created with universal design elements, to be accessible to all.
We need to shift the expectations gap from a gap to an expectation. We know that children often live up to their expectations. If we dare to expect more, we will be incredibly impressed with what children of all abilities can do.
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