Photo by Christopher Chan on Flickr.
This summer my family is moving to San Francisco so that my disabled son can attend kindergarten. While we are excited about the next chapter of our lives in the Bay Area, we expected until recently to live in DC, and in Georgetown, the rest of our lives. Unfortunately, that plan changed when we ran into obstruction and hostility from DC Public Schools and local private schools regarding our son’s special needs.
My 5-year-old son, Martin, is the joy of our lives. He is the sweetest little boy you will ever meet, with a passion for life that inspires me every day. Martin also has epilepsy.
In the past year, Martin has had over 2,500 seizures. Most of them are drop seizures, in which he drops to the ground like a puppet whose strings are cut. After every drop seizure, he gets right back up and resiliently soldiers on — coloring, playing with toys, eating his food, undeterred.
When the seizures began breaking through his medication last year, my wife and I spent every evening on our laptops, immersing ourselves in pediatric neurology. Helping our boy fight seizures was our primary activity, at least it was until we discovered how much we would have to fight DC Public Schools to secure his rights to an equal education.
Coping with epilepsy
Martin has miraculously not regressed cognitively despite his seizures, but must be kept safe. He has had drop seizures in which his face collides into his cereal bowl during breakfast, into the toilet bowl while going to the bathroom, into the sand table while playing at his preschool.
After several bloody and bruised faces, we made the difficult decision to put a helmet with face guard on our boy. Even with his helmet, he is still not safe on stairs, which pose a real risk to his life and limb.
Martin attends an amazing preschool, St, Columba’s Nursery School in Tenleytown, whose teachers unflinchingly provide him any accommodation needed to keep him safe and help him learn with the other children. They go far beyond what the law requires.
This past year, we asked DC Public Schools (DCPS) for an Individual Education Plan (IEP) ahead of his entrance into kindergarten this fall.
An IEP is a list of the accommodations that a public school provides to ensure a child’s civil right to equal access to the curriculum. A federal law, the 1975 Individual with Disabilities Education Act (IDEA), protects the civil right of children with disabilities to a free and appropriate public education (FAPE).
DCPS, through its Early Stages division, initially committed to including a dedicated aide in Martin’s IEP to keep him safe. They were unable to put him in a building without stairs. Instead, an aide would hold his hand on the stairs or take him to elevators, as well as logging his seizure count and caring for him when he injures himself.
"Martin will obviously get an aide; he’s dropping 10 times per day,” was the assessment of our IEP team lead. “Just give us a letter from his neurologist, and we’ll include an aide in his IEP.” We provided letters from two neurologists, and expected to send Martin to DCPS kindergarten this fall.
DCPS throws up a wall
Two weeks after our IEP meeting at DCPS Early Stages, I received a startling call from our IEP team lead that would signal the beginning of the end of our time as DC residents. “I’m so sorry to have to tell you, apparently we were not authorized to put an aide in Martin’s IEP. So we’ve taken it out.”
She was unable to explain why Martin’s IEP team couldn’t give him an aide. She said to me, “I wish I had answers to your questions. I’m so sorry.” When I pointed out that, by law, only members of an IEP team can determine what accommodations go into an IEP, she agreed, and repeated, “I’m so, so sorry.”
A week later I received a call from Amanda Parks-Bianco, a DCPS special education administrator who manages all dedicated aides, asking me what my questions were. Parks-Bianco said, “Dedicated aides and nurses are never needed to provide FAPE. If you accept our offer of FAPE, then aides and nurses are additional services that your child may qualify for.”
When I cited several court decisions stating that IDEA does sometimes require dedicated aides, she insisted that “IDEA is vague.” Several times Parks-Bianco told me, “I know I must sound like a horrible person.”
Private schools give the cold shoulder too
My wife and I retained an attorney, who advised us to find a private school that would keep Martin safe. We would then sue DCPS to pay the tuition. However, we were unable to find a general education private school in DC that would accept a child with uncontrolled seizures.
For example, we visited Lowell, known as one of the most inclusive private schools in town. When we mentioned to the Head of School that our son has 10 drop seizures per day, her response was, “You would need to purchase tuition insurance.” She then explained that “a school with a smaller student-teacher ratio might be better, with more eyes on your son to keep him safe.”
The Lowell Head of School never technically violated the federal law against discrimination towards those with disabilities, but made it clear that my child was not welcome at her school.
We visited Sheridan, also known as an inclusive private school. While they said they embraced children with disabilities, their building is still not ADA-compliant, requiring children of all ages to walk up and down a long staircase with no elevator. When we noticed the facilities they had invested in, such as a campus in the Shenandoah Valley, their true priorities seemed clear.
We considered suing DCPS to accommodate my child with an aide to keep him safe at school, a suit that our attorney said we had a 95% chance of winning. But he also said we would likely have to retain counsel multiple times over the years, as DCPS would try to remove the aide from Martin’s IEP.
My wife and I were considering moving to California last fall in order to try a strain of medical marijuana that had helped other children control their seizures. A friend from San Francisco had been urging me to consider schools there that were inclusive of children with disabilities.
In March, I flew to San Francisco, and within a month enrolled Martin in a private school that embraces children with disabilities and was committed to keeping our son safe. Even our special education attorney recommended that we accept the offer of the school in San Francisco.
My family is privileged to have the means to move when our son’s civil rights are denied and physical safety threatened by DC Public Schools. DC is full of thousands of special education students who face the obstacles our son faced and have far fewer options.
How can DC be a truly inclusive city?
While we are sad to leave our adopted hometown of 16 years, we are excited to embark on a new journey. We feel deep gratitude to the Bay Area for its inclusive culture, and hope to give back in spades.
One of the hardest parts of leaving DC, besides the friends we leave behind, is walking away from the fight to make DC a just city whose success is shared broadly. As DC’s amenities have grown over the past decade, so have the growing gaps in wealth and educational outcomes in our city. This creates a moral imperative to advocate that we can either hide from or accept.
It’s easy for elected officials in DC and other east cost cities to promote the influx of new residents, then take credit for the improved joblessness numbers and school test scores that inevitably follow.
My deepest fear for DC has been that in 30 years, all 8 wards will have stellar economic and education numbers, but those numbers will be the result of turning over half the population in the city.
There are few battles more critical to creating an inclusive DC than the fight for the 13,000 students, predominantly poor, who receive public special education.
DC can move forward in one of two ways — by displacing DC’s recipients of special education, or including them.