I am not built for giving up.

This is the single fact of my being, the thing I know about myself more surely than my own breath.  From the day of my birth, my persistence has been both my greatest asset and my greatest weakness.  If I want something, I find a way.

This is why my son chose me as his mother.

Certainly it’s not fashionable among intelligent liberals to believe that beings possess consciousness outside their bodies, before their birth or after their death, that souls have a purpose and make choices as to what their journey will be when incarnated on our little ball of water and dirt.  But believe it I do.  My son, who has Asperger’s Syndrome, a form of autism, chose me as his mother, because I do not accept defeat.  And when it comes to my son, there is no quarter and no surrender.

Cross me at your peril.

This is the lesson that my son’s school would learn after throwing him under the school bus last spring.  For those of you who didn’t read about it here, allow me to summarize.  My son was attending a private Montessori preschool.  They found out he had Aspergers. We were told not to come back next year, despite the fact that he was fully capable of thriving in the classroom with the assistance of a shadow, an accommodation we were more than willing to find and pay for.  Their excuse?  A shadow would be “inconsistent with the Montessori method.”

For those of you who don’t know the basics of the Americans with Disabilities Act, allow me to fill you in. Under the ADA, private schools are considered places of “public accommodation” under Section III of the act. 42 U.S.C. § 12181 (7)(J).  By law, “No individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation[.]” 42 U.S.C. § 12182 (a).  This includes denial of participation in the services of the school. 42 U.S.C. § 12182(b)(1)(A)(i).  “Discrimination” includes “a failure to take such steps as may be necessary to ensure that no individual with a disability is excluded, denied services, segregated or otherwise treated differently than other individuals because of the absence of auxiliary aids and services.” 42 U.S.C. § 121812 (b)(2)(A)(iii).  Children with spectrum disorders are considered “disabled” under the ADA, regardless of whether the institution in question is covered under section 504 which governs private entities receiving federal funding.

In other words, the school’s failure to allow my son to participate with the assistance of a shadow constitutes denying my son accomodation because of the “absence of auxillary aids and services.”  It is every bit as much discrimination as refusing to install a ramp for a child in a wheelchair.  Indeed, it’s the equivalent of refusing to install a ramp even after the child’s parents have offered to pay for it.

I had a number of choices upon learning the school’s final decision with respect to my son.  I could fight to have him reinstated.  I could hire a lawyer, file a lawsuit, and pursue my claim as far as need be to obtain ….to obtain….exactly what, really?

The fact of the matter was that I had no desire to work with a school that was so ignorant and narrow-minded about spectrum disorders. The teachers and administrators had made it abundantly clear that they had no interest in working with my son and with his disability.  It would be years of tearing my hair out, making threats and battling every step of the way against people who had already proven themselves to be bigoted assholes.  A court order to readmit my son to the school would be a pyrrhic victory at best.

There was, of course, the potential for money.  Damage awards can be mighty enticing after all, especially when one is staring in the face of a permanent neurological disorder that will require years of therapy that isn’t covered by insurance.  But I was savvy enough to know two things that made pursuit of money damages a fool’s errand.  First, the legal costs to try the claim would likely equal the damage award, and second, the school was not well-endowed and would have little money to pay such an award even if a court were inclined to give it.

About the only reason left for pursuing a lawsuit would be for the attention it would get, the potential for a legal precedent that would require all other schools to think twice before doing something similar to another child.  This was a good reason, perhaps even better than the other two.  My son had a solid claim, with a good set of facts that made it an excellent opportunity to set precedent.   

But it’s not that simple, really.  A lawsuit takes time, energy, resources.  I’m an attorney.  A litigator.  I know exactly how grueling it can be to prosecute something all the way to a verdict.  There are easier ways to shine a light on injustice and make change.

One way is the media. And due to a serendipitous coincidence, I happen to know some folks who work at the local news station.  One friend, an emmy-award winning cameraman, even spoke to his producer about doing a story about my plight.  One phone call and I really could have a battery of cameras descend like locusts on the school, ready to shine a bright light on its misdeeds. 

I thought long and hard about that.  I thought about what would happen once I did that.  Cameras and bright lights in our living room, with my son getting all kinds of attention, some of it the unwanted kind. The problem with inviting the media maelstrom into your living room is that very often it’ll break things that are important to you.  And my son was too precious to put at that kind of risk.  And in the end, would it really make a lasting change?  Or would it merely cause a tempest in a teapot for a season, quickly forgotten when the seasons change?  It was a problem, to be sure.

I always tell people I work with that they should never make the mistake of giving me problems.  I have a nasty habit of finding creative solutions that they won’t like.

The most important thing to a private school is its reputation. Certainly things like public condemnation effectively tank a reputation.  But reputation is a funny thing – it isn’t really necessary to lose face with absolutely everyone to fall from grace.  Really, all it takes is to sabotage standing with a few key individuals:  the ones who help others form their opinions.  In marketing parlance, they are called “opinion leaders,” because they are the people that others go to decide what they think about a subject.  I didn’t need to tell the world about what happened to Little Man at this private school.  I needed to tell the people who were the opinion leaders with respect to private schools.

In the world of private schooling in America, those people would be the National Association of Independent Schools.  The list of NAIS members is in essence a list of the most respected private schools in the nation, the ones that sport large endowments, storied histories, and alumni with names like Bush, DuPont, and Kellogg.  A school that aspires to be among this elite group of institutions seeks NAIS membership.  And only those that pass NAIS’s certification process may become one.  My son’s school was an NAIS member.

I worked hard on the letter.  I edited it mercilessly.  I showed it to a trusted friend for his professional view. When I was sure it was effective I sent it.  I sent it to each and every member of the the entire board of trustees of the school.  I sent it to the head of school.  I sent it to the head of the parent-teacher organization.  I sent it to the executive director of NAIS, the executive director of the American Montessori Society, and Autism Speaks.  In short, I sent it to everyone I could think of who might care. 

And then I waited.

The wait wasn’t long.  I mailed the letter on a Thursday.  The following Monday I received a call from the office of the Executive Director of NAIS, an assistant, specifically.  We talked for an hour.  I knew that from her perspective, this call was an opportunity for NAIS to bail out one of its members, avoid a possible lawsuit, but most importantly, take my temperature to determine exactly how crazy I was and how little I really felt I had to lose.  As anyone in the primary school community will tell you, parents are dangerous when they are angry, even more dangerous when they feel there is nothing more to lose, and easily pushed to the place where they do irrational, hurtful things that wind up being a disaster for everyone. 

I assured her that I was a rational human being, that I was reluctant to pursue my legal rights because I understood that it wouldn’t provide what I needed.  “I am more interested in building bridges than burning them,” I said.  I didn’t want Little Man’s school to re-enroll him.  I assured her that what I really wanted was to work with NAIS to make sure that none of its member schools ever did something like this to kid like mine ever again. 

I was as sweet as pie.  I pointed out that an NAIS member school should be a paragon of proper behavior in these matters, that my expectations from an NAIS school was and should be high.  And that it was a disappointment to discover that my son had received a better, more compassionate reception from private schools in my area that were NOT NAIS members than from the one that was.

Finally, we got to the point.  “What do you really want us to do about this?” she asked me. 

“I want to make sure that there is some kind of program in place to educate member schools as to what the appropriate response to a kid with Asperger’s really is.  I want to make sure no other child goes through what my son did.”

We agreed I should speak to the head of NAIS’s “Diversity Initiative.”  He called the following morning.

There was the obligatory 30 minutes of his “taking my temperature.” He needed to figure out how angry I really was, was I capable of reason, did I have an agenda, was I really what I advertised myself to be.  I said all the same things to him that I had said to his boss.  Building bridges, reputation of NAIS member schools, blah, blah, blah.  He figured out I was someone he could work with.

Every August, NAIS hosts a “diversity conference” at which diversity officers from NAIS member schools discuss various issues regarding fostering diversity issues at private schools.  The website for NAIS’s diversity initiative is largely focused on issues of race and religion and most recently, sexual orientation.  There is nothing there about kids with neurological disorders or kids on the spectrum.  I reminded him of this.

I was invited to recount what happened to my son in a case study that would be presented at the conference.  Not this year, but next year, as this year’s schedule was full.  The case study is complete and is headed to the conference.  I’m hoping that I can do more, though. 

When you are parenting a child with a disability, it’s pretty easy to get wrapped up in the day to day grind of making sure your child is taken care of.  Taking it upon yourself to advocate, not just for your kid, but for all the others like him is often more time and energy than one person has.  Before anyone (including myself) begins congratulating me about how wonderful it is for me to do this, keep in mind that I am one of the lucky ones.  My kid’s disability is comparatively minor.  Although he is still in intensive therapy, and will be attending both a regular AND a special needs preschool program in the fall, the fact of the matter is that he is likely to have all the coping skills he needs to function in society at relative parity with his neurotypical peers within 5 to 6 years. 

Other moms are not so lucky.  My husband’s first wife has her hands full with his first son.  He is no longer a child.  He is in his 20’s now.  He still wears a diaper.  He is a grown man in every way, yet he will need to be cared for his entire life because developmentally he will never have the capacity to fully dress himself, feed himself, much less live on his own.  My husband’s first wife is older than him by nearly ten years.  She is close to entering her sunset years, a time when she should start thinking about and saving up for the time when someone will care for her when she can no longer care for herself.  Yet her job caring for her son isn’t over.  It never will be.  I shudder to think what I would do with such a burden.

My astounding good fortune carries with it a responsibility to stand in the gap not only for myself, but for moms like my husband’s ex.  For all the moms who are too burdened by caregiving, by lack of resources or education to do it themselves.  Comparatively speaking, I have the resources and the time, and the understanding of the advocacy process to do something like this, even in the limited, targeted way that I have done it.  Not everyone does.  I am not special or particularly virtuous.  I’m lucky, and I have the good sense to recognize it.

And the fact is, what I’ve done hasn’t rocked the planet or anything.  I did something very targeted, something that was easy to succeed at because NAIS lost no face by engaging me and could potentially save a huge lawsuit against one of its members.  The benefit to them was huge and the cost to them miniscule.  I’m hoping that in the coming months I can continue to engage them, continue to work with them, and create a relationship whereby I can do more to push the rights of kids on the spectrum, more to educate private schools as to what their responsibilities are to autistic children.

But it is rarely the grand gesture that makes the greatest headway in what is a long campaign.  Most wars are won in the trenches -- with ground given up reluctantly and only after much struggle.  I have a foothold on the beach.  It isn’t much.  And I might not be able to advance further.  But I’m here.  And I’m not going away.  Not without a fight, anyway.