“Environmentist”

Today was the first day of synchronous online class for a course I am attending related to neurodiversity and, of course, there were introductions.  Generally, I loathe class introductions.  However, during the introductions today, a most serendipitous thing occurred. 

In my introduction I explained that I work two jobs.  By day I am an Environmental Scientist, by night, I am an Executive Function Coach and Neurodiversity Educator.  I explained that my EF Coaching practice is different than many others in that I am not a behaviorist and the methods I use are not based on behaviorism.  Somehow, what I said was unclear to one of the other students and she messaged me to say, “I would love to hear more about your work as an Environmentist.” 

Not an Environmentalist.  An Environmentist.  I love this new word!  I frequently tell my clients that while therapists work inside the mind, I work outside the mind.  I do not work to change the person, but rather the environment.  We explore surroundings, types of work or schooling, what we want to do with our lives, where we want to do it, and who we interact with.  The more the environment is tailored to the person, the more the person’s executive function improves. 

The neurodivergent community is a rich and accepting environment.  It is where many of my clients find “home”.  I am not a behaviorist.  Perhaps I am an Environmentist.

Personal Reflections on ND 2E Parenting: A Letter to a Younger Me

Dear me of many years ago,

1.  Depth and Complexity vs Acceleration

Assuming a kid must be in a school setting, for neurodivergent (ND) 2Es, if I must pick between the 2, I choose acceleration with the caveat that kids should stay with other children their age, or be placed in classrooms that have many different ages combined.  They should not be moved to classrooms where every other student in the room is older than they are. 

Here’s why: over and over and over I am seeing these kids grossly under challenged in elementary school while they are young, eager, and excited to learn.  They are held back from what they are capable of.  Then, they get to middle school and hit a wall for a multiplicity of reasons.  They begin struggling in classes with material they were cognitively able to easily tackle in elementary school.

The acceleration argument wins in my mind for the simple reason it is front-loading.  By the time they are in high school a great deal of these kids are OVER IT and have shut down just when the grades start to actually matter. 

Additionally, in a public school setting “depth and complexity” in GT and AP classes is really just busy work, or work with an increased extrinsic load which does not enhance learning but rather creates a valueless stumbling block for an ND 2E.

In the end, there is no good fit, so forget about the school curriculum.  Pick the one with the best overall environment and best access to electives/activities the kid likes. 

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2. Neurotype is more important than Giftedness

My kids are getting older, and I have realized I focused WAY too much on giftedness when my kids were younger.  If your 2E is neurodivergent (ADHD, Autism, etc.) learning about neurodiversity and making the necessary adjustments are FAR MORE important than learning about giftedness.  Where their neurodiversity leads them, their giftedness will follow. 

I used to think that pulling 2Es from standard curriculum was really only necessary in highly and profoundly gifted children.  Hear me: public school is not made for any ND child, let alone a 2E regardless of if their (probably technically invalid due to “spikiness”) IQ score is estimated at 120 or 165. 

For a ND 2E, Elementary GT pullout classes are not enough, and AP classes and full-on gifted programs are made for high achievers, not the gifted per se, and can be crushing.  Regular classes are not a better fit.

I’m sure that someone out there has a gifted autistic child who got through school swimmingly (maybe), but I think this is a rare exception.  Most will experience a constant battle from at least middle school until graduation. 

I thought my kids were just the right amount of “gifted”… definitely gifted but not SO gifted we needed to do something radical.  Gifted enough that any disabilities would be overshadowed and they would sail through school: buckle up.  You are in for a ride.  If you stay this course you will hit the wall when they do.  It sucks.  You will be in a place where the world tells you there is something wrong with your child, your parenting, or both.  You will think you, and the kid are broken UNTIL you learn that the problem is society and the systems we construct.  Your child is not broken.  Feelings you had as a teenager come back and you realize, you were not a “rebellious child”, but rather what you felt was real and your assessment of and disillusion with the system were/are valid.

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3.  Studying Debrowski more deeply is not going to bring you any closer to answers.  Read The Explosive Child even if you don’t think your child is “Explosive”.

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4.  Outside of elementary school, counselors are not what you think.  They are not counselors in a mental health way.  They are much more like registrars concerned with course selection. 

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5.  IEPs are only as good as the teachers and school staff let them be.  What kind of people you are working with matters way more than what the IEP actually says.

Pediatric Seronegative Encephalitis and Neurodivergence

Pediatric Seronegative Autoimmune Encephalitis surely exists.  It only makes sense that not all anti-central nervous system antibodies have yet been discovered, and so there is no way to test for their presence in patients.  However, I fear that seronegative AE (particularly in cases that did not involve abrupt onset of symptoms) can be used as a “catch-all” diagnosis which can inappropriately pathologize divergent neruotypes. Cellucci, et. al published a paper in Neurology Neuroimmunology & Nueroinflammation in 2020 titled Clinical approach to the diagnosis of autoimmune encephalitis in the pediatric patient. Take a look at their flowchart:

Based on what I have read in social media accounts of parents pursuing support for their children, “Clinical Presentation of Pediatric AE” is interpreted by some practitioners as any behavior the parent or clinician finds undesirable.  Spitting, meltdowns, babbling, confusion, headaches, OCD, phobias, picking scabs, being non-compliant, tics, paranoia can all be considered reasonable cause to further investigate AE.  Any number of harmless autistic traits, such as stimming, are often included in the list of undesirable behaviors.  To determine if these behaviors are caused AE, the practitioner orders bloodwork, a urinalysis, a spinal tap, and an MRI. If all these tests show no evidence of infection or auto-immune antibodies but the MRI shows “inflammation”, this alone is considered evidence enough that the child is experiencing Seronegative AE.

This is important:  MRI (with or without contrast) alone is *not* capable of accurately, definitively diagnosing inflammation/encephalitis.  Some of my “birthy” friends are already well aware of the limitations of calculating fetal weight based on ultrasound measurements.  Medical imaging of any type simply has limitations.

A PubMed search easily yields several studies that support this statement.  Here’s an excerpt I quickly selected at random from a paper entitled Neuroimaging in encephalitis: analysis of imaging findings and interobserver agreement by J. Granerod, et al, published in Clinical Radiology:

There is a subjective component to scan interpretation that can have important implications for the clinical management of encephalitis cases. Neuroradiologists were good at diagnosing HSV encephalitis; however, agreement was worse for [acute disseminated encephalomyelitis] and other alternative aetiologies. Findings highlight the importance of a comprehensive and multidisciplinary approach to diagnosing the cause of encephalitis that takes into account individual clinical, microbiological, and radiological features of each patient.

I do not deny that seronegative AE exists.  Seronegative AE patients need and deserve identification, diagnosis, and treatment.  But we must be cautious that autistic and ADHD patients are not erroneously swept into this category and subject to unnecessary medical treatments. If a child does not want to go to social events, wear shoes, or for you to ever sit in her favorite chair, but instead would rather play with Legos for 12 hours straight, that does not mean she is sick.  If odd behaviors have a sudden onset, then searching for pathology is of course warranted. However, many families will find healing and happiness by learning about autism as a neurotype, embracing the child’s inherent characteristics, removing offending external sensory stimuli, and kissing social norms good-bye.

TEA’s “Remote Conferencing”

Things just keep getting weirder.  TEA has now introduced Remote Conferencing.  https://tea.texas.gov/sites/default/files/covid/remote-conferencing-faq.pdf

Disclaimer:  For those of you who don’t already know this about me, I support our teachers.  This is *NOT* anti-teacher.  Rather, I feel that our teachers are stuck in a system that frequently does not properly support them or the children they teach.

What the heck is “Remote Conferencing”?  Well, it’s not homeschooling, and it’s not remote learning either.  Here’s how it was presented in CCISD online video today:  https://fb.watch/7LUpOd4AcN/.  Teachers in our district already post their lessons to an online platform.  This has been going on for quite some time.  Even this year, prior to this roll out, if a kid is out sick, they can log onto to their teacher’s website, access learning material, and continue to work from home if desired.  This will not change.

With the addition of “Remote Conferencing”, if the kid clicks on a link made available to them while at home sick, they will be sent to a “mini lesson” presented not by their teacher but instead by a “learning coach”.  These lessons will be in sync with the district’s planned timing for presenting TEKs (the Texas equivalent of common core standards) in classrooms.  However, it is extremely common that teachers must deviate from this schedule in order to accommodate all sorts of scenarios (recently the power went out at one of our schools, sometimes kids struggle with one unit but speed through another, etc.)  There also does not seem to be any links for advanced courses so if you are in Pre-AP Algebra I, you will just click on the link for Algebra I.  Also, all Special Ed courses are combined into one link.  For these reasons, the mini-lessons may not match up at all with what is going on in the student’s actual classroom.  Of note, if a student logs on to “Remote Conferencing” while out sick, they will not be counted as absent.

CCISD expressed in their video that the goal of “Remote Conferencing” is for students to remain in contact with the school and receive support while at home.  This seems unlikely as the lessons provided by the “Learning Coach” are likely to be disjointed from the teacher’s lessons which can cause unnecessary confusion and stress.

It appears much more likely that the true intent behind “Remote Conferencing” is funding.  On March 4, 2021 The Texas Tribune Reported that per Texas Governor Gregg Abbott School districts must keep or increase the rate of students learning in person in order to avoid losing funds.  https://www.texastribune.org/2021/03/04/texas-coronavirus-schools-funding/

I sympathize for the mess Abbott has made for CCISD and other Texas districts.  Districts are prohibited from requiring masks at schools.  CCISD covid rates are skyrocketing.  As of tonight, the CCISD dashboard is reporting 754 active cases, 1,228 students quarantined, and 89.17% of students in attendance (CCISD COVID-19 Dashboard – Clear Creek).  But the intent is clear, the district does not want students marked absent and the TEA is providing a mechanism to reduce absenteeism (at least on paper) while Abbott continues to try to force students into classrooms, regardless of pandemic status.  To claim that “Remote Conferencing” is being done for the wellbeing of students is disingenuous to the point of being insulting.  This is a continuation of the toxic positivity that I first noticed when the previous CCISD superintendent sent out an email on the first day of school in 2020 stating that many students and teachers “exclaimed” that it was the “best first day of school ever.”  So much for the CCISD Core Values:  Trustworthiness, Respect, Responsibility, Fairness, and Citizenship.  Like so many other things in public education, they are but a façade. 

“Breakthrough” COVID Cases

While the world appears to be reeling from the recent evidence that vaccinated individuals can contract and spread COVID, these guys (and I’m sure many others) called it last winter.  On December 15, 2020, Otolaryngologists Benjamin S. Bleier, Murugappan Ramanathan Jr, and Andre P. Lane published a paper titled “COVID-19 Vaccines May Not Prevent Nasal SARS-CoV-2 Infection and Asymptomatic Transmission”.

This paper was published long before the Delta (B.1.617.2) variant became a dominant strain.  Here’s 2 eye-catching excerpts:

 “Current COVID-19 vaccine candidates are administered by injection and designed to produce an IgG response, preventing viremia and the COVID-19 syndrome. However, systemic respiratory vaccines generally provide limited protection against viral replication and shedding within the airway, as this requires a local mucosal secretory IgA response.”

As the first generation of vaccines for COVID-19 is distributed and studied, we will be able to better understand the degree and duration of systemic efficacy in preventing COVID-19 infection. However, until viral titer endpoints are incorporated into vaccine trials and/or mucosal vaccines are developed, the possibility of asymptomatic nasal viral shedding from systemically vaccinated individuals should be considered.”

Using this logic, it would appear that a large number of so-called “breakthrough” cases are not that per se, as the vaccines could not realistically be expected to prevent localized infection of the respiratory mucosa. If vaccines can only prevent viremia (which is, of course, important) it stands to reason that only instances of viremia in vaccinated individuals should be counted as true “breakthrough” cases. 

Subclinical, localized infections may in fact be quite common in vaccinated individuals, and this may have been true even before the emergence of the Delta variant.  Unfortunately, the CDC is not fully tracking infections in vaccinated populations.  At this time, the CDC website states “The number of COVID-19 vaccine breakthrough infections reported to CDC likely are an undercount of all SARS-CoV-2 infections among fully vaccinated persons. National surveillance relies on passive and voluntary reporting…”1

Link to Full Text:

  1. https://www.cdc.gov/vaccines/covid-19/health-departments/breakthrough-cases.html