I recently had the pleasure of talking with wonderful parents of a boy who was considered to be nonverbal until he got his hands on a letterboard — a way to communicate that didn’t require fine motor skills. It turns out that he processes auditory information quite well, is very bright, and is now on a path to prepare for a college education likely in physics. That letterboard was a game changer.
His story reminded me of Carly Fleischmann whose inner voice could finally be “heard” by typing. The part about Carly’s story that stuck with me was her dad reflecting on how they used to talk about Carly with Carly in the room, as if Carly was not able to understand. He later found out that she was comprehending everything, and the regret weighed heavy in his voice.
These stories are awe-inspiring, but what about the more mundane stories out there? There are so many other students who are being assessed by methods that are limited. The limited methods… limit our ability to truly “see” students for all that they are. This is more common than not. One of the problems with most school assessments is that they are limited to “paper and pencil”, or perhaps computerized, tests that required verbal-linguistic skills.
Why do we do this? It’s a cycle. Those who did well with verbal-linguistic skills, along with meeting other neurotypical expectations, are the ones who go on to become the test-makers and evaluators of the test results.
Now it is time to see beyond. The first step is gaining awareness through stories like Carly’s and studies such as the following:
~ Words Say Little About Cognitive Abilities in Autism by Nicholette Zeliadt, Spectrum News
~ Interaction Takes Two: Typical Adults Exhibit Mind-Blindness Towards Those With Autism Spectrum Disorder. Edey R, et al. J Abnorm Psychol. 2016
Note that second one isn’t about verbal so much as nonverbal, and the title caught several people by surprise when it was first posted. This reaction shows how pervasive our preconceived filters can be, including in how we frame our research.
To quote Douglas Adams, “See first, think later, then test. But always see first. Otherwise, you will only see what you were expecting.”
“Invisibilia (Latin for invisible things) is about the invisible forces that control human behavior – ideas, beliefs, assumptions and emotions. Co-hosted by Lulu Miller, Hanna Rosin and Alix Spiegel, Invisibilia interweaves narrative storytelling with scientific research that will ultimately make you see your own life differently.”
Thanks to Craig for sending this “rabbit hole” — so many interesting episodes here!
“Tamra’s Pond” – is one of the most thoughtful gifts I’ve ever been presented. It’s the gift of a special type of experience and state of being… being able to sit in the serenity of nature… nature that includes water – so all the better.
Stacy would have to explain any details, but my understanding is he has been using different tech, comparing satellite images to maps, to look for previously unmapped bodies of water. The real challenge was to find an unmapped body of water that I could also hike into!
Since it isn’t being accessed by people, the nature there is “more” — just more pristine, undisturbed, allowed to be. See the pics to see what I mean.
I have many pics showing gorgeous horizons, but hesitate to post publicly because I’d like to keep this place mostly human free — while still making pilgrimages in to visit.
The pond is at the bottom of a water meadow going down a rolling hill, which reminds me of one of those cascading fountains where one level pours into the next, until the water lands in the largest pool at the bottom. It will be neat to compare the spring with the late summer/fall.
Thank you to Stacy and Alma for a beautiful Sunday, and to Craig and Kevin for sharing in the adventure. *loves*
33 million people were prescribed this class of antibiotics in 2013 alone. Thousands died, and many more suffer debilitating effects.
I’ve hobbled together a team to help me heal, or at least manage, the symptoms of Fluoroquinolone Toxicity. I’m grateful to doctors, physical & massage therapists, and loved ones for helping me through. A special shoutout to Deena for sending me probiotics that actually worked (anyone can contact me if they want information on that).
Meanwhile, here’s a list of resources that people might find informative on what happened, and how can healing happen.
PubMed Research Article: Oxalate consumption by lactobacilli: evaluation of oxalyl-CoA decarboxylase and formyl-CoA transferase activity in Lactobacillus acidophilus – “Identification of probiotic strains with oxalate-degrading activity can offer the opportunity to provide this capacity to individuals suffering from an increased body burden of oxalate and oxalate-associated disorders.”
Floxie Hope Post: Fluoroquinolone Antibiotics and Oxalate Overload – discusses in more accessible language the impact that these antibiotics can have on the digestive system. Also includes more resource links for healing from the impacts.
Mytavin Calculator – Enter the medication and see what nutrients might have been impacted by it. When I enter Ciprofloxacin, I see a list that I wish I had been given right away!
FDA Drug Safety Communication: “FDA advises restricting fluoroquinolone antibiotic use for certain uncomplicated infections; warns about disabling side effects that can occur together.” Finally, after years of people suffering, and many deaths, the FDA issued this warning in May 2016. UPDATED announcement was issued on July 26, 2016. It also lists the known side effects, and the antibiotics in this class (including Cipro and Levaquin).
Floxie Hope Post: Fluoroquinolone Toxicity Featured in the Movie “The East” – I found the comments out there about this movie to be interesting. People are saying that the parts of the plot about the medication to be over-the-top and how that would never be able to happen for so long! And yet this is the reality of so many people who were beginning to wonder if the FDA was somehow protecting the pharmaceutical company. Oh wait…
Former FDA Commissioner Charged in RICO Lawsuit – A Federal Lawsuit charges Dr. Margaret Hamburg, former Commissioner of the Food and Drug Administration (FDA) with conspiracy, racketeering & colluding to conceal deadly drug dangers – under the federal Racketeer Influenced and Corrupt Organizations law (RICO) law. The amended RICO lawsuit was filed on April 11, 2016 in the U.S. District Court in Washington DC on behalf of eight plaintiffs who claim they have suffered severe harm by ingesting the drug, Levaquin whose deadly risks were concealed to protect financial interests.