Jess Banks & I are spearheading a fundraising drive for Elizabeth Sampat‘s daughter, Gwen, and their fight against unlawful, discriminating treatment that threatens Gwen’s education and future. We’re calling this the Fighting For Gwen fundraiser.

Gwen’s Story

In Jess’ words…

I want to tell you about a girl named Gwen. She’s eight years old, and she’s funny, sweet, thoughtful, and cracklingly smart. She’s also a high-functioning autistic. This means that some things that are easy for neurotypical people are very difficult for her–certain textures, sounds, and situations are physically uncomfortable, even unbearable, for her. But it also means that some things that are easy for her are unimaginable for the neurotypical. She has most of the Periodic Table of Elements memorized. She speaks fluent Spanish; no one taught her.

Gwen can articulate how her disorder affects her, and she’s learning to be a fierce advocate for equality and dignity for everyone. She’s made incredible progress since she began attending school–she was barely verbal when she started first grade, and with the care and support of her parents and the special education professionals at her school in Massachusetts, she was virtually indistinguishable from other kids in her class by the end of second grade. Those educators believed that, with proper support, Gwen wouldn’t even need special accommodations by the time she reached middle and high school; college and medical school, in pursuit of her dream career as a pediatrician, were entirely reasonable expectations.

Then Gwen’s family moved across the country for an amazing job in the San Francisco Bay Area.

The principal at Gwen’s first school told her parents that they didn’t have a special education program at that elementary school, and Gwen would have to change schools to get the help she needs. This was a flat-out lie, designed to avoid taking on the cost of a paraprofessional. It’s also illegal; schools can’t shift kids around just to avoid having to find room in the budget for the care they need. Now Gwen is regressing, becoming less verbal and more easily provoked by overstimulation.

If this were where the story ended, we’d all commiserate and urge Gwen’s parents to just break their lease and move to a better district. But it’s not.

The school would not abide by the provisions in Gwen’s IEP (Individual Education Plan), the legal document that outlines the steps a school must take to accommodate any child with special needs. They did not communicate with Gwen or her parents, neither good news nor bad. They refused to provide a paraprofessional so Gwen can accompany her peers on field trips. They used inappropriate force in restraining Gwen during a meltdown, grabbing and pulling her body in painful, even private, places.

Her parents have done what any parents would do–they’ve taken her out of the school that was causing irreparable harm to their child. They’ve found a school that knows how to help Gwen attain her full potential. And they’ve hired an advocate to fight the school district, because if they just drop this now, there will be no record and no recourse for the next family that comes along.

None of this is cheap. Elizabeth and Shreyas have good jobs, but just the retainer for the advocate took one-quarter of a paycheck. The total cost of doing the right thing–both settling Gwen at a good school and fighting the school district’s reprehensible practices–will cost at least ten thousand dollars. This is the kind of fight that could bankrupt a family. They need help.

I’m organizing a fundraiser for Gwen and her family, because this could have been my family. My nine-year-old son Connor is a high-functioning Aspergian too. His first school saw him as a discipline problem, and told us point blank that we needed to control him. Meanwhile, his kindergarten classmates bullied him to the point of stitches and death threats. We changed schools too, but instead of a place that looked to do the least they could get away with, he landed in a school that immediately recognized his diagnosis, and gave him not just educational support, but love and encouragement. It’s what every parent wants for their child–no, it’s what every parent expects for their child. We know how fortunate we are, and we’re so very angry for Gwen, because we know how easily our family and hers could switch places. Their fight is our fight.

You can read more about Gwen’s struggle on Elizabeth’s G+ post.

What We’re Asking For

We’re asking for help for Gwen and her family because things are up in the air right now, and the options Gwen has available are contingent on what her family is able to provide. Elizabeth and Shreyas have already done a significant amount–borrowing money and scraping up what they can–but it hasn’t been enough.

Here’s a breakdown of where your money will go. It’s kind of confusing, but things are always confusing when it comes to bureaucracy.

Your donations will help fund their legal battle with the school— including lawyer costs and their autism advocate. If there’s enough money up front, Gwen will be able to enter a private school (should one accept her) for a number of months to establish that the education she’s receiving is more appropriate than what she was receiving in the public school system, and then her family will be able to sue for the district to pay for her placement.

If there isn’t enough money to cover a few months of private school (or she is not accepted), Gwen’s family will have to break the lease on their apartment and move to a school district with a better reputation for helping kids with autism. These are few and far between, unfortunately, and moving in California isn’t cheap.

Gwen’s family plans to donate everything beyond these costs to the Autism Self-Advocacy Network, or ASAN— an advocacy group for and by autistic people and Aspergians. Gwen is very proud to be autistic, and has often said that her favorite thing about being autistic is that she is a part of a community, so giving back to that community is important to her and to her family.

Where You Come In

We feel strongly about not just asking for handouts. If you recall the efforts that Elizabeth & Ryan have done in the past, we’re about giving something when we’re ask. For Fighting For Gwen, we’re working with a number of authors to deliver to you stories in your inbox every other week (with some bonus weeks), including Matt Forbeck, Will Hindmarch, Kenneth Hite, Cam Banks, Josh Roby, and a few surprises. These stories will start coming to donors in March.

• For ten dollars, our Comma tier, you’ll get one month of stories in your email.
• For thirty dollars (Period), you’ll get three months of stories.
• For fifty dollars (Semi-colon), you’ll get all six months of stories.
• For seventy-five dollars (Colon), you’ll get all six months of stories, and at the end you’ll get them in a nicely laid-out PDF.
• For one hundred dollars (Exclamation Point!), you’ll get all the above and a special, custom story & illustraion from Gwen or Connor (Jess’s Asperger son).

Now, you might be asking yourself “Why are your tiers named after punctuation?” Gwen is seriously into punctuation. Seriously. And since this is about it, we wanted that to feel personal…even if it seems weird to everyone else. (Which is what we’d except from interesting, bright children, right?)

Note: these donations go directly to the family, so you’ll see your money going to Shreyas Sampat.

Once you complete the payment, you’ll get an email to the same address you use for PayPal. You can contact Elizabeth by replying to that address if you’d rather use a different one.

If you want to help but aren’t interested in the stories…

The family is happy to take any help kind souls are willing to give. You can just donate by clicking on the Paypal button below.

Thank you very much for your time and help.

- Jess & Ryan

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