Kudzu, #AutismSpeaks10, & The Autism Wars

When my son was 2 years old, something pervasive, noxious, and invasive entered his life and ours. No, I don't mean autism. I mean Autism Speaks. Autism Speaks was quite literally the kudzu of the autism and autistic communities.

 

Clemson University researchers are nearly lost in the overwhelming cover of kudzu vines, which have spread over every surface, object and tree in the area. (Credit: Clemson University News)

First I should explain what I mean by kudzu, for those who may not know. Here's a quick primer. Quoting The Weather Network's article,  kudzu is the

"Plant scourge of the South adding more carbon dioxide to the atmosphere, aiding in its own spread"

Specifically:
"It quickly covers the ground, buildings, and anything else around, blanketing fields and even climbing up trees. Any plants unfortunate enough to be overgrown (including trees) are deprived of sunlight by the dense cover of kudzu leaves and they quickly die out. These vines now cover over 3 million hectares of land throughout the U.S., mostly in the southeastern states - Georgia, Alabama and Mississippi - but it has spread south into Florida, west to Texas and north as far as Ontario. "

"While these growths have taken on epic proportions, that's not the only problem from kudzu. It's already been shown that kudzu causes more nitric oxide (which is also a byproduct of burning fossil fuels) to be released from soils, which has caused an increase in ground-level ozone levels during summertime heat. In addition, as the plants continue to spread northward, especially with climate change, they are actually increasing the amount of carbon dioxide released from the soil into the atmosphere, introducing a feedback loop. "

"According to Malcolm Campbell, a professor and the vice-principal of research at the University of

Kudzu seed pods credit Wikimedia Commons

Toronto, in his piece in The Conversation, the research of Nishanth Tharayil and Mioko Tamura, from Clemson University, shows that the plants choked out by the kudzu tend to lock more carbon into the soil."

"The study, published in New Phytologist, showed that despite a 22 per cent increase in soil litter (due to the abundant leaves the kudzu drops during winter), there was a 28 per cent decrease in soil carbon after a kudzu infestation invades an area."

"According to a Clemson University press release, Tharayil said: "Our findings highlight the capacity of invasive plants to effect climate change by destabilizing the carbon pool in soil and shows that invasive plants can have profound influence on our understanding to manage land in a way that mitigates carbon emissions.""

Flowering kudzu credit Wikimedia
Commons

We watched in stunned helplessness as Autism Speaks, like kudzu, invasively entered our lives and propagated gigantic, noxious campaigns that spread vapors of ablest humiliation, hopelessness, and resentment sprinkled with the occasional seasoning of inspiration pornography around the world. Their misguided doomsday scenario of fundraising by fear of an autism epidemic oppresses supporters to relieve that sense of helplessness by raising money to aid it in spreading its depressive rhetoric. Local autism nonprofits directly helping autistic adults, children, and families saw funds being choked off as Autism Speaks launched massive media campaigns to generate new fundraising revenue streams of tens of thousands of dollars towards odd research efforts (read about why Alison Singer resigned from Autism Speaks here) each year.

As kudzu spread north, killing every native plant in its path, Autism Speaks expanded into legislative efforts and advocacy, with all the finesse of a bull in a china shop, upending or appropriating efforts by informed legislative activists and organizations not in lockstep with them while trying to mandate its own singular, damaging agenda.  Autism Speaks spoke about autistics while choking out their voices. It claimed it spoke in the name of all autism parents while demanding all parents accept their idea of what autism does to families and what autism policy should be. It has spent recent years trying to obliterate any other advocating voice for autism by such misadventures as:

• attempting to come to Washington D.C. and mandate their singular biased opinion of a national autism policy all the while ignoring disabled disability rights activists and all other autism and disability nonprofits. (This effort continues.); 
•  targeted releasing of another apocalyptic "autism the epidemic" PSA (Sounding the Alarm) and massively pitching and screening it privately, along with sprinkles of funding, to various schools of public health and health care facilities in order to add professional legitimacy to their private autism agenda; 
• that disturbing genome database campaign in collaboration with Google  named and hashtagged "MSSNG" meaning "missing", implying their view that a puzzle piece is missing from our children's brains and bringing to mind disturbing and dangerous eugenic practices of the past that began with attempts to prove that any divergent population was less than another genetically
•  going as far as traveling to self-promote and attempt to control the autism conversation in Catholic countries by marketing their organization to the Vatican complete with founding member Suzanne Wright's unfortunate statement that families look upon their autistic loved ones as St. Francis looked upon someone with Hansen's disease. 

When autistic activists, who remember their lives as neurodivergent children in a world of refrigerator mom treatments, Lovaas punishments as therapy, shock treatments, institutionalization, and unspeakable harm, raise their voices in protest, Autism Speaks unleashes their supporters to bully and insult these justifiably angry advocates. It is a sad spectacle to witness.

Parents attacking autistic adults is in a very real sense akin to those parents attacking adult versions of their own autistic children.  Their inability to see that in their frenzied passion to attack (in the name of a mega nonprofit that uses legal power and corporate might to defend itself with impunity) they are damning the only people who know firsthand what the futures of their own children will hold and are fighting like hell to ensure better futures for autistic children is sadder still. Would they want some stranger to attack their children as viciously as they are attacking autistic adults under the cover of social media? It is heartbreaking to see this degree of hostility and compartmentalization in Autism Speaks supporters. Aren't we all also parents? Aren't we supposed to have the maturity and control our online behavior? Melting down on social media over a hashtag trouncing is not the solution to what is happening. Asking why #AutismSpeaks10 is viewed with such enmity by adults who are truly like our children because they share their neurology might be a better place to start.

Mu, autistic, out and about representing Charm City
On Purple day. Purple has become the only shade of
blue we endorse. Please note the absence of the puzzle
piece. ©Kerima Çevik

Our family never recovered from the shock of seeing Autism Speaks' "Autism Every Day" PSA, which is still branded with its logo and available for viewing on YouTube. We never viewed our son in this manner and it upset us greatly to have autism-parents presented in this way. Having learned our lesson about the depressive effect that Autism Speaks can have on us, we now set a blistering schedule well ahead of time for the month of April to avoid the media bombardment of Jerry Lewis telethon style content that leaves us dispirited every Autism month. Shopping for school supplies, groceries, and a host of other things is a challenge during the month of April. Kudzu, I mean Autism Speaks, and their pervasive puzzle piece logo, meant to represent a piece missing from our children's brains? Or the unsolvable "mystery" of autism, or something? is in our faces. Tenth-anniversary celebrations will only make their annual month-long assault worse.

Autism Speaks came into our lives like kudzu, destroying and divisive to those it presents itself as being in the service of. The good news is kudzu is edible. And if the right species are planted to counter it, things like soy, peanuts, and peas, those plants will give back to the soil and allow native plant life to grow back.

kudzu starch cake,katori-city, Japan ©Katorisi Wikimedia

So how can we fight the kudzu spreading in autism land?

By continuing to insist that Autism Speaks stop inciting panic and hopelessness to control the autism conversation and raise money. It is WRONG. Speaking out even if they use their massive media control to counter. Continue to inform people about what Autism Speaks does and why it is wrong.

Continue to insist Autism Speaks include autistic representation. Autism Speaks needs meaningful autistic decision-making representation. This means either a collaborative working partnership on equal terms with autistic-run organizations that have equal representation in deciding autism policy and issues that have a lifetime impact on autistic children and adults, equal representation on the board of directors, or both. The composition of its board makes Autism Speaks appear to speak for wealthy, cisgender, white, parents, grandparents, and professionals who have autistic loved ones.

Don't allow Autism Speaks to continue efforts to mandate national Autism Policy as they see fit while excluding all other stakeholders: Autism Speaks must stop insisting on forcibly attempting to promote their own agenda by mandating autism policy alone. Autism policy, whether they like it or not, must be inclusive of all stakeholders including autistic voices and the voices of other organizations who represent autistic people and their families and care providers. This is not a corporate takeover. This is a cause and human lives are in the balance.

Reclaim Autism Month: Autism month should not be the personal fundraising self-gratifying palooza of Autism Speaks. It should be a time when the full scope of what autism is, as well as how autistic people have always been part and parcel of our society should be on display. It should be a month for understanding, educating, and beyond awareness, it should be a time for demonstrations of acceptance, positivity, and hope.

So please Autism Speaks, do not obliterate other voices with the ritual explosion of 10th-anniversary chest pounding. We get it. You've leveraged a fundraising model that worked for Susan Komen for years. You're flush with funding and more is never enough. That doesn't give you the right to smash the voices of those you claim to speak for and torture them with loud, sensory overloading, displays of power that are dangerous to autistics. Tenth anniversary or not, for the safety of the autistics you claim to serve, tone down the over-the-top antics a bit this year.

My wish for #AutismSpeaks10 is that Autism Speaks makes a conscious decision to cease being the kudzu of the autism community and act to reinvent themselves into what they should be, a nonprofit that has true autistic representation and allows autistic voices, including those criticizing them, to speak their minds without being the victims of personal verbal attacks and abusive rhetoric by overzealous supporters. We could suspend reality for just a moment more and pretend that Autism Speaks lived with us in the United States and understood that autistic people and families who aren't Autism Speaks members, volunteers, or supporters, like all other stakeholders, had the constitutional right to speak their minds about policies and practices that directly impact their futures.

Further, we could push this make-believe scenario and consider that if all autism organizations looked for points of policy everyone agreed on, worked on a summit that united these points into an autism policy plan acceptable to everyone, then everyone would successfully advocate for said joint autism policy and the acrimonious nature of the autism wars might pause for a cease-fire.

Wars tend to end with ceasefires.

Peace

Neurodivergence and Representation: Magic Maps, Musings, Farewells 1

The magical Leah Kelley blogger, speaker
educator, awesome parent of H

Leah Kelley, who blogs at 30 days of Autism, created an amazing people map for her son, H, who shows every indication of becoming a great voice for the next generation of autistic adults. She writes about it in her post Gathering At TASH and the Magic People Map. Leah has been kind enough to let me use her people map to feature some of those voices who found creative and out of the box resources to help afford the trip to Washington D.C., speak out, and participate for those they represent. Read about them while I try to gather my thoughts on various points regarding divergence in neurology and representation. I'm going on a hiatus, a sabbatical if you will, and narrowing my focus. I'm not quite sure how it will all work out. Hopefully placing this beautiful map of people cards throughout the post will help outline a path for my thoughts on where I am now and how to move on from here.

Leah's deep love and respect for her son H, her strong background and experience as a special education teacher, along with a keen understanding of what supports divergent people need to navigate public spaces, shine in the concept of these cards and made her latest great idea very much worth sharing. It is the definition of what autism parenting with love and acceptance entails.

30 Days of Autism  also hosted an excellent quick assessment of  the TASH 2014 conference from Cara, who blogs at That Crazy Crippled Chick, and you can read about that here. I actually recognized Cara from the I Am Norm Campaign's first Youth Summit! She has gone on to graduate school and outstanding activism.

My son Mu. My living example that nonspeaking
autistics deserve the same respect that the rest of
 the spectrum is fighting for

The Bad: I do want to be clear about my frustration at my  failure to bring about what was to be the most important contribution I could have made at TASH. I wrote about that on the I∩tersected blog, which you can read here and I may expand on it when I hurt about it less. My main job as a parent activist who works to be an ally is to use my parental privilege to create opportunities for disabled disability rights activists representing marginalized groups to be able to take the podium and speak on what matters to those they represent. My being there, or me being able to speak for or in place of two great activists who were Black and disabled was never the goal or the point. Had I wished to address people alone I would never have asked them to join me.
I was unable to garner the support to succeed in helping two important disabled activists afford the cost for the accommodations and supports they needed to have their voices heard at TASH 2014 in the moment when harm to disabled people of color needed to be spoken about the most. It was the latest in a series of events that marked my decision to withdraw from everything except blogging. I am now simply a blogging autism parent.

I realize now that the organizational aspects of disability rights activism as they are currently structured, are constrained by the same institutionalization of privilege, hierarchal discrimination based upon degree of disability, layers of intersecting factors which are othered by organizations lacking equal neurodivergent representation, and the racial discrimination that is polarizing our country in general. The voices of marginalized groups within disabled populations are already muted  (as defined in muted group theory by E. Ardener,  S. Ardener, C. Kramarae, and M. Orbe). Institutionalized disparities in representation and support for marginalized subgroups in disability advocacy made my task as an independent activist seeking grant funding for direct support of disabled activists who advocate for said groups impossible.

Me, retired activist, glasses perched on
on the end of the nose I inherited from
my ancestors, proud mom to
neurodivergent Mu.

These recent events, combined with what I have experienced over the past few years when trying to seek help for our son or other intersected neurodivergent individuals in need, have brought me to the point where I feel the need to step back from activism and try to work out fresh approaches to how intersected people of color can be fairly represented beyond tokenism and appropriation of content and ideas. I  also see sharp differences between how individuals in the dominant religion and those who speak for populations with high incidence disability are responded to when they reach out to our community to request assistance for themselves or others and when activists for marginalized groups request the same help and support. I therefore don't see any point in pushing against this wall of discrimination alone when such effort is unnecessary for those who fit a more acceptable intersected constellation. That privilege of limited intersectionality achieves whatever outcome they wish. I'll expand on this later as well.

I truly believe that with the exception of neurodivergent families of diverse races who conform to the dominant culture in every other way, the autism conversation will continue to be dominated by white privileged parents with the financial means to provide ample supports for the 'therapy' and education of their children. We will continue discussing what those children need and policy will be dictated by that group rather than by neurodivergent adults whose needs are underserved or heavily intersected populations who are both underserved and overshadowed by the dominant group. This is true across organizations. If someone of color is in a decision making position, that person must be from a class position that disassociates itself from those in poverty and silently allows the dominant voices to dictate autism policy, because when they have reached a place of power, they tend to forget that their true purpose is to serve their people. Instead they stay silent and do as they are told and think of their own gain. They justify this by the old myth that somehow they must accept the role of token in order to make history so that others can follow.

The Good: A chance to meet and have lunch with the next generation autistic disability rights voices was a great gift

H, son of Leah Kelley, autistic activist,
speaker, student and incredibly cool dude.

during the brief moments I was at TASH.  Henry Frost was unable to attend, but his example and presence were felt. Renee (see magic people card after Emma's  and Henry's below) invited me to lunch with her wonderful kids and H.  As we were having lunch with these amazing young people,  a great deal of self doubt and self loathing, the self directed ableism that haunted previous generations of autistics, was not there. Both speakers and typers were at peace in their own diagnoses, and this more than anything made me feel the online community may be having a direct positive influence on the new generation of tween and teen neurodivergent youth. This confidence and comfort with who they were, the relaxed way in which conversation flowed from neurology to gaming, from there to interests of the moment was uplifting and almost made my bitter disappointment with the underrepresentation of diverse voicesat the conference itself dissipate.  While we were having lunch I realized that a group of African American disabled activists were having a working lunch and discussing strategy for what was clearly their panel which would be occurring after lunch. Roughly 10 to 12 activists sat, ignoring everyone else in the retaurant. An opportunity was there to gain community involvement in their panel and simply network. It was heartbreakingly sad that their self imposed isolation was happening when we were all there, smiling and more than willing to listen had they reached out to us. But that is the state of activism now. We, activists of color, are burnt out and tired of a great deal.

Emma Zurcher-Long,  Autistic Activist,
Performer, student, advocate for non-
speaking autists who type to communicate

I recently ran across a trailer to an upcoming documentary on autism that begins at a short conversation with Temple Grandin. Because we have not reached a moment where our community has true representation in it, documentaries about autism will always have Temple Grandin in them, and will in many cases mention the movie "Rain Man" when discussing level of visible divergence. So Dr. Grandin states she is concerned about what she terms "too many smart kids, on the real fully verbal end of the spectrum, all they want to do is talk about their autism." Apparently, they spend more time discussing their autism than they do discussing their intense interests. I would say that it is a good thing that autistic youth discuss autism since their autism is part of who they are. It is quite impressive to me that young people know themselves well enough to discuss their support and accommodation needs, how their diagnoses give them advantages and challenges, and feel comfortable doing so. In fact Dr. Grandin has made a serious amount of money and gained great fame talking about her autism and writing her opinions about autism, when autism is not her area of academic specialization but is in fact part of who she is. So I was a bit surprised at her statement of great concern. If autistics start directly discussing their neurologies at such young ages, they will be able to advocate for themselves and others without self doubt or shame. That self advocacy is the goal, and a giant step towards having them direct the autism conversation and by doing so, direct their own futures. Reaching such a goal would give voice to hundreds of individuals across neurology,  rather than the present narrow field of voices limited to well intentioned autistic 67  year old Ph.D. s of animal science speaking in such a way as to obliterate the voices of those who type to communicate.

Henry Frost - Autistic Activist,
student, advocate for full inclusion, public
speaker and activist for non speaking autistics

Meeting some very confident young people at TASH left me hopeful despite my sadness for my own people. I would think Dr. Grandin would be proud of young people who self advocate about their own neurologies. Her statement also excludes very young activists who type like Henry Frost and Emma Zurcher-Long, able to communicate eloquently at such young ages with AAC support. Her insistence in seeing the future of our community only in kids on the spectrum with verbal speech when such powerhouse young typing activists are making names for themselves is not just sad. It is a very good example of hierarchy of disability by presumption of competence based upon what is visible rather than what is possible. Independent young typing activists leading their own generation are the role models for nonverbal autistic presumption of competence. Dr. Grandin speaks as if there was never a groundbreaking documentary called Wretches and Jabbers that changed the global conversation about communication and nonspeaking autism, and as if Naoki Higashida never wrote "The Reason I Jump". The reason Emma Zurcher-Long is a public speaker (note the word speaker meaning communicator - she types through most of her presentations that is her primary communication method) is because of the impact of these nonspeaking people.  Probably one of the strongest voices in our community is Amy Sequenzia who also communicates by typing. Dr. Grandin is a privileged

Amy Sequenzia, Autistic Activist and
Poet, advocate for nonspeaking autistics
users of AAC to communicate

voice in our community and she sets up an ableist hierarchy of disability, immediately feeling the need to insure that the listeners understand that she's excluding nonspeaking children when she discusses "the really smart kids". If she has this ableism, and she is speaking to audiences filled with parents hoping to learn something to help their children, what is she teaching them about my son and his peers? I have no soapbox that will equalize the reach of my voice and allow me to counter such ingrained prejudice. Her fame has given her a large platform but she is using it to segregate autistics who type or need supports to communicate from those who appear to have verbal speech and may not require supports in the classroom or have less visible expression of divergence in neurology.  I've tried to counter this attitude, with little success. I now need to step back and think of new ways to approach these kinds of tremendous obstacles within our community in addition to continuing my son's homeschooling and fighting the wars we must fight for representation of our loved ones outside it.

Renee orchestrated lunch with young autistics
as a conductor would a concert. 

I am also sprinkling this small gift to you of magic cards of people as I write, because the people in them are so dear to the autism wars for driving representation beyond acceptance and the incorrectly used "awareness" term. They give hope to our community because they lift others up rather than simply promoting their own careers in disability rights advocacy or activism. They act with the community in mind. They are refreshing voices in a sea of self serving organizations crushing those they are pledged to serve underfoot while wondering why the very members they harmed are not building community or volunteering for them any longer. I'm doing this so that should someone happen upon this post while I'm gathering thoughts and on my hiatus, they can google and find their way to the words and works of said folk, and learn from them. I want them to share my joy and marvel at strong voices in the very young and the not so young. I would like to see tweens and teens of diverse constellations on similar cards next year. The internet has strong neurodivergent poets, artists, graphic artists, singers, and authors, who are incredibly young. Others were around when Ari Ne'eman was too young to know what his future would hold. Please learn about these people, learn from them and tell them your stories so we can hear your voices and learn from one another. I hope the cards give everyone heart, make their burden's light and guide them towards the understanding that whether my voice is here or gone,  the potential for a powerful community in the neurotribes is strong,  can be united, and if united could overcome any obstacle.

----------------------------------
In case you missed the link in the first paragraph 30 Days of Autism can be read at (http://30daysofautism.wordpress.com/)

This is  the end of part one of a ridiculously long post divided into three parts.  Part II is next

On Boundaries, Privacy, Activism and Family (My Son is Not An Activist)

"When an man lies, he murders a part of the world" 

                                                                       - Merlin

                                                                                                  from the Movie Excalibur

Something negative has been floating around awhile now. A festering, pustulant bit of gossip that finally spewed out into the open during an advocacy related phone conversation I was having last month. I'd heard hints about it, but it had never been said to my face. The person on the phone decided to blurt it out."...since you are shut in, you know a recluse...I mean you only want to meet on the phone." Out it oozed all over the Verizon fiber optic cables. The person continued speaking but I was stuck in that moment.

Don't presume to call me a shut in because I think my son is a higher priority than your personal convenience or organizational agenda. That nasty little attempt at needling me into reacting to prove I was not whatever negative adjective was being ascribed to me shut down any further volunteer efforts from me for that individual. But it also highlighted something I've needed to say for a very long time.

Let me be clear. In the hierarchy of priorities my neurodivergent son comes before any legislative advocacy. He comes before any nonprofit organization. He comes before meeting the President of the United States. If I need to be somewhere and Mu isn't feeling it I reschedule. I will not drag him to any protest, rally, workshop, meeting he doesn't wish to go to. Nor do I expect him to sit through some activity he doesn't want to sit through. I only have so much life left and the lion's share of the time I have belongs to my autistic son, his father, and his sister. My husband and I made a joint decision at very high cost to ourselves that I would cease working when we realized Mu's sleep cycle and school troubles were not going to simply end. What is more important is something I suspected but now know for certain: Mustafa is not interested in activism.  Knowing that, I have spent the past three months in particular changing what he does  and scheduling things related to activism based on his indications of what he wants to do. Because he wants to have an autonomous life, and his life should not involve being forced to be a sidekick in my activism.

Mu in his 'fro phase with his favorite t-shirt at his computer
in our old house. the shirt is white with the words "Stand Against
Restraints and Seclusion by Teachers" t-shirt by autistic
activist Lydia Brown. Photo ©Kerima Cevik

See my life in advocacy is and was always meant to be an ally's life. I was meant to be my son's sidekick. That concept expanded when I realized the only true way of making my son's life better was to make life better for all of his peers as well. So when a member of Mu's neurotribe speaks, I shut up. If I want to say something and a neurodivergent person has already said it I amplify and signal boost, step out of the spotlight and work to place the light on them. My activism is not for self promotion. It is for Mu. So if he doesn't want to go to D.C./Annapolis/ Baltimore/UMD, or wherever, people and the organizations they represent either Skype a meeting, call me or do without me. That is the way it is. Anyone wanting any contribution from me should respect that boundary. Once crossed I will shut them down and drop them like a bad habit. That applies regardless of their station in life or how famous they are.

On gossip. We are all too old for this. When someone gossips consider two things that we were all taught as children. First consider that if that person is saying something nasty about me, they will also say something nasty about you the minute your back is turned. Second, a bit of gossip is a thing that functions very much as it does in the children's game "gossip". It gets more inaccurate each time it is repeated. So not repeating negative things helps eradicate an insidious ever expanding lie that is a threat to unity in activist communities. I am not sure why how I live my life is of any concern to anyone. I am a bit shocked that others would see this as an important enough topic to use it to disparage me. I guess I need to remind them that I am simply a parent, activist and blogger. And if they miss the point that this is about the human rights of our children, and not about me, let me hammer that home.

I am part of  the true Autism Wars, a larger series of wars for the human rights of our children.  These battles are being waged for equality expressed in acceptance, representation, and full inclusion in society through accommodation and supports for neurodivergent people throughout their lives. I want to see the day when the standard for educating all children is true inclusion regardless of degree of disability, support and accommodation needs. I want to see the day when my son's divergence doesn't matter.That is what this is about and what I am about as an activist. My son is important. My sitting on a board of directors is not. My son's peers are important. My speaking to adoring crowds is not. Those activists who fight for their neurotribe members matter. My job is not to photo op with them it is to have their backs. I don't keep track of what I do. I don't have someone who chronicles the speeches, good deeds, printed words and further charities of Kerima. So I'm not certain I'll be invited to speak at your next conference. If you get that about me, we'll get along fine.

I also need to remind people that activism can easily consume a person's life. I cannot allow it to do so to mine, because that would steal my son's birthright to his mother's time to love and support him. I must always fulfill my obligations as a wife and mother and friend first. If you didn't get all that let me sum up. 1. My son comes first. Respect that or don't engage me. 2. He is the reason I blog and I am an activist. 3. Trash me to hell and back it only diminishes you. 4. If I have an obligation, event, or commitment and my son has an issue I don't go. We have learned to be flexible because our son has multiple disabilities and if he is reticent to go it means he's trying to tell us he's not feeling well or something is amiss. 5. It doesn't become us to propagate gossip or make presumptions about others. We need every member of this community to work together and this behavior is deceitful and destructive.

Based on years of attempting to work with organizations who don't respect what I'm about, and who my son and I are, I am seriously considering stepping back further.

Peace.