Dear School Administrator, You are an ASSHAT for dismissing my son's very real life-threatening medical condition.

Charlie in 2012 right before he was hospitalized for not being able to breathe (during the Wenatchee Fire.)

This week I got a call from my the school psychologist for my son’s school (Let’s call her Becky, because that’s her name.)

Becky has always been fairly cordial and reasonable – although I cannot say that her work with my children has produced any specific positive results, but I have historically blamed the school system (and the system’s approach to working with children with disabilities) for that, not her personally.

Last week she called me and aggressively challenged me for my choice to keep Charlie home the week before Thanksgiving — when the smoke in the air here in Portland was very bad because of particulates that blew north on the winds from the Camp fire.

Any time the AQI goes into the “yellow” zone, Charlie is generally already coughing (like today). Often, I initially assume he has a cold – and then 12 to 24 hours later I think…hmmm… let’s check the AQI! Then I check the AQI, and damn if it isn’t generally in the 50s or higher — and I slap myself on the forehead, and am like “Doh! Of course Charlie is coughing.” [Charlie is like some kind of canary-in-a-coal-mine; he pretty much just starts coughing when the AQI hits 30+!]

Continue reading below image.

This image is a screenshot of the air quality map from AirNow.gov for this morning, December 9, 2018 at 10:00 a.m.

This past week (I think it was Thursday or Friday), Becky called me — and spent a huge part of our call trying to assert (in a sideways / non-direct way) that I was somehow being unreasonable for keeping my son home from school (specifically mentioning the week before Thanksgiving when he was coughing uncontrollably because of the air quality.)

She said truly inane things, like “well… we keep the doors at school closed”… to which I responded… “You have like FOUR SETS of MASSIVE tall doors that are opened and closed CONSTANTLY throughout the day. The air quality in the school is the same as the air quality outside.”

I explained that when I keep him home (because he is having trouble breathing) we seal ALL the doors and windows, and only come and go through ONE person-sized door AND we limit the amount of times during the day that the door is opened. When he is home in those circumstances I also keep a VERY close eye on his coughing and breathing (and make sure he doesn’t go outside to play for any reason, and keeps his physical exertion to a minimum) so it is a controlled environment.

Charlie, age 10 – earlier this year (Fall 2018)

Given that I have been his mother for the past 10 years and and 5 months, I also know what to look for when he enters medical distress (extremely labored/croup-sounding breathing/coughing/gasping which can actually come on quite suddenly) so know when to either call an ambulance or if we have enough time to catch an Uber to the hospital.

I have no confidence that the school administrators (and teachers and aides) could provide that kind of required attentive monitoring at school (especially with the AQI levels generated by the Camp fire.) I also would never want to put him in a situation where it could get anywhere near that bad that he would have a medical crisis at school. My goal with him is to PREVENT crisis-level breathing episodes entirely by taking responsible action in advance when environmental factors might lead to a breathing crisis (like high AQI from wildfires).

I explained to Becky (as I have to many other school administrators in the past) that for the first SIX years of Charlie’s life he was RUSHED to the hospital (I think seven separate times) unable to breathe due to the fact that he has compromised/reactive lungs.

Each time we went to the ER for this over the years, we were told that his lungs are so weak [he was born early; he was tiny – just about 5-1/2 lbs; I had Pitocin for two days straight; plus he was positive for Lead when he was born and according to the attending physician, I was “dying of kidney failure” when I gave birth(!) – so we attributed his poor lung development to some combination of all of those factors], that the doctors would not even prescribe a device (a nebulizer) for home use — they told me several times (repeating it again each year) that they preferred we bring him straight to the ER each time, so they could use better equipment/more aggressive protocols, and do a better job of monitoring him!

Last week, in the phone call, I told Becky that the doctors had speculated that his lung capacity and strength would likely improve with age, and he could be expected to be stronger and less vulnerable to breathing complications when he turned 6 or 7 years old. Of course at that time the doctors could not anticipate nor take into account the new spate of wildfires that would become a regular issue in the Pacific Northwest (first only in the summers — but now even in the Fall and Winter!) So now, even though he is 10 years old, we still have to exercise extreme caution.

I had to DEFEND my actions supporting my son’s health to a SCHOOL ADMINISTRATOR – with NO MEDICAL TRAINING in this area. Her affect and tone were condescending and her line of questions clearly demonstrated disbelief, apparently all intended to made me feel like a “bad parent” — for keeping my disabled child home from school when the AQI was high.

This is all about the school trying to:

keep their attendance numbers up AND
use Charlie’s attendance record to try to deny him services he needs, deserves and has a right to.

Given my long sad history of dealings with school staff who (in an effort to maintain their attendance stats at all costs) are products of the “the customer is always wrong” PPS culture, I had [in the immortal words of funny man John Cleese, in one of my kids’ favorite Monty Python sketches, “The Architect” ] – “… come to expect this sort of blinkered, philistine pig-ignorance…“, so accordingly, pretty much every day I kept him home, I dutifully forwarded to the school a screenshot of the current AQI from the Federal government’s site (AirNow.gov), in defense of our choice to keep him in and not send him to school.

Yes you read that right, I had to DEFEND my right to protect my son’s health and yet they still challenged me in spite of the solid evidence.

Note to teacher (11/13):

Each of the screenshots below was sent to the school (each day) with a note, explaining the kids would not be in school and Charlie was sick.

Day TWO: Tuesday, November 13, 2018 AQI, 59

Day THREE: Wednesday, November 14, 2018 AQI, 151

Day FOUR: Thursday, November 15, 2018 AQI, 137

Day Five: Friday, November 16, 2018 AQI, 84

In this conversation with Becky last week, I said that I sincerely hoped that these absences had been noted as “medical illness-related”. She half-heartedly reassured me that she expected they were, since I “gave the reason” for keeping him home [however, given our history, I must confess that I am not entirely confident about that.]

I am so SICK and TIRED of school administrators trying to make parents feel bad/invalidated because parents are doing their jobs and (in any kind of reasonably child-centric school model) administrators are NOT doing their job.

The “Kicker” / Punchline / Whatever

In retrospect it seems crystal clear that Becky’s intention in solidly laying out this argument (that I was unreasonable and wholly responsible for Charlie’s poor attendance records due to what she perceived to be “elective” absences) was in order that she could better support the REAL reason she called.

It turns out that Becky’s main reason for calling me was (she said) because we had given approval for the school to do a Functional Behavioral Assessment for Charlie as part of his IEP (which we were informed he “ABSOLUTELY NEEDS, in order to get appropriate services”); and she was calling to get my permission to “drop that from his plan” (to remove the need for Charlie to have a Functional Behavioral Assessment)!

To this I told her “No, I will not agree to have that removed from his plan — I WANT him to have the Functional Behavioral Assessment – and he needs that!”

Her response: “Well, he hasn’t been in school enough to give him that service…” (blaming us for his attendance records – using the BS conversation about us keeping him out of school for the week before Thanksgiving when the air quality was too dangerous to send him to school as an example!)

So… my response (To him not being in school enough for her to do the Functional Behavioral Assessment.)

Becky, the only reason he has “not been in school enough” is because you steadfastly refused to grant my request/heed my recommendation [based on a LOT of experience!] that I “come with him for the first three or four weeks of school to facilitate the transition”. If we had done that in September, he would likely be there independently for full days by now! Instead, you only let me attend with him for lunch and recess – and you (and the IEP team) recommended that he start his day with lunch (because that is the only transition time you would allow me to be there for), which we have been doing.

HAD you agreed to my reasonable/humane (and experientially tactically-effective) plan, he would have been there full-time by now on a regular basis (he would have also developed more healthy relationships with peers, because he would have been with them more often) and you would have plenty of time to do the FBA.

And then I asked <yet again> if we could try that (as I had originally suggested), and Becky said <yet again> with a bit of what seemed to be nervous laughter, “I don’t think that will work.”

So to be clear… it is 100% the school district behind the fact that he is not in school full time (and usually attends school only 11:40 to 2:00 p.m. each day — when he does not have full-blown school refusal because their woefully inadequate efforts to accommodate his special needs).

Portland Public Schools was FULLY responsible for traumatizing my son in the 2016/2017 school year, when he was a tiny 8 year-old boy, and a full-size adult teacher’s aide cruelly SAT ON HIM when no one else was looking, and the district sided with the TEACHER’S AIDE and said he was lying (which he absolutely wasn’t).

Portland Public Schools was also responsible for traumatizing him previously – the incident that really started it all – when in the 2015/2016 school year the teacher announced to the entire class that Charlie was “lying”, when he told them there was no Santa Claus [which, FYI, being accused of being a liar for something he knew was the truth just absolutely ruined his faith in humanity and justice and made all of the kids in the class turn against him!]

Charlie with his big brothers in Summer 2016

Becky… my son has REACTIVE AIRWAY DISEASE.

STOP TRYING TO BLAME PARENTS FOR THEIR CHILDREN MISSING SCHOOL FOR A KNOWN DIAGNOSED MEDICAL CONDITION… and START DOING YOUR JOB… which ostensibly means setting up circumstances and an environment for Charlie to successfully attend school full time each day (which will start with me attending with him full time to facilitate his transition.)

While I LOVE Charlie’s new teachers… he really NEEDS to be mainstreamed FULL-TIME, with a PARA! His MAIN issue is socialization — and that is NOT going to happen if the district does not give him the opportunity to succesfully attend school full-time. [And <sigh> at this point, the only way he will successfully attend school full-time is with me coming him with him for a few weeks of transition until he is comfortable with the full routine.]

I TOLD THE TEAM THIS BEFORE SCHOOL STARTED.

This was ignored.

Therefore the district has intentionally chosen to NOT give him the services and support he needs. And to reiterate, Becky I will not give you permission to remove the Functional Behavioral Assessment from his IEP.

Since keeping these conversations private seems to get NO response, I have decided to write this up as a blog post. [Perhaps another parent somewhere will also benefit from knowing the details of my struggles with Portland Public Schools.]

Tamara Rubin
Charlie’s Mom
#LeadSafeMama