Thoughts on education, disability, and raising kids that make their own boxes
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A broken system
17,694. That’s what number we are on the waitlist for services from the state for our son. We got on the list in 2009. Let that sink in. We’ve already been waiting 12 years.
I realize the idea of prioritizing your resources isn’t exclusive to families who have children with disabilities, and perhaps it’s my own ableism that makes it feel so difficult compared to something less “serious” like braces or summer camps.
I remember when I taught, we often told parents to be on the lookout for changes in their children. Did their child lose interest in something they used to care about? The implication was their child might be depressed. But what about when you grow up?
This article is written for the mom I used to be; the mom without a child with a learning disability.
What they had to say made so much sense to me, and I took those same concepts and applied them to all sorts of hard topics in life, perhaps none as hard as suicide and suicide prevention.
All kids are different, but kids with ADHD are particularly tricky to discipline. They don’t respond to traditional methods, and “old-fashioned” authoritarian styles can also be widely unsuccessful.
I’ve never thought of myself as a writer, more of a constant struggler of ‘thought articulation’, and this new gig is a challenge. It’s forcing me to slow my mind down enough to explain what’s in there.
I hoped we have traveled through Autism Awareness and moved to Autism Acceptance together. I've thought a lot about what to post today. I could go on and on, there is still so much to learn for all of us, but I will end with a letter instead.
From the very beginning when Leo Kanner first identified autism as a neurological disorder in 1943, society has been convinced it’s the mother’s problem.
Ethan Lisi, an undergraduate student from Canada talks about some of the most bothersome myths surrounding Autism, and explains that Autism is simply part of the human spectrum.
Autism as a disability has NO defining physical traits. But it does come with some comorbid, or “coexisting” conditions, the most common likely being motor skill delays and deficits.
Hyperlexia is a phenomenon where a child has a fascination with letters and an advanced ability to read, despite having delays in their ability to speak. It's considered a learning disorder and common enough in Autistics that Hyperlexia Type 2 is specifically for Hyperlexics on the Autism Spectrum.
A sibling relationship is beautiful, but it also requires those siblings too, at times, understand more than they should, or be more mature than they are, and it's important to care for those needs as well.
The term "invisible disability" or "hidden disability" is an umbrella term used to define a whole spectrum of disabilities or disorders that are primarily neurological. They are referred to as "invisible" because they cannot be seen on the outside.
Food refusal isn't just "picky" eating. A "problem eater", as it's called, is a person whose food restrictions are so severe that it will likely lead to malnutrition.
Executive functions are a set of mental skills that include; flexible thinking, planning & prioritizing, emotional control, impulse control, working memory, time management, and organization.
Masking is the concept of intentionally learning neurotypical traits and mimicking them in social situations. It can also involve actively suppressing self-regulatory behaviors like arm flapping because they aren’t socially acceptable.
One of the most powerful ways to support Autistic individuals is to listen, and accept their experience as they have described it.
Do you find yourself avoiding conversations with an autistic coworker or young person in your life? You don’t need any special skills, just keep a few key points in mind.
When you hear the word “treatment” your mind wants to jump to “cure.” There is no cure for autism. But guess what, being neurodivergent is ok! Every parent wants their child to grow up happy, and with ease... because life is hard enough without extra challenges right? But we can work on those challenges and barriers, and still accept that autism is part of our child and may well make him or her the amazing person they are!
17,694. That’s what number we are on the waitlist for services from the state for our son. We got on the list in 2009. Let that sink in. We’ve already been waiting 12 years.
In 2013, the American Psychiatric Association, the professional body that publishes the DSM, released the DSM-5, which completely revamped the way Autism is diagnosed. Rather than have 5 separate categories of Autism, the DSM-5 presented autism as a spectrum, now called Autism Spectrum Disorder.
Roughly 25% of persons with autism are considered non-verbal. This means they use little to no words to communicate. This does NOT mean they do not communicate, or that they do not want to communicate. They may use sounds, gestures, pictures, electronic aids, or pulling a person or object towards a desired space or thing.
A true meltdown, for an autistic person, has nothing to do with achieving a goal, or manipulation. A “meltdown,” is what happens when all signs of distress are ignored or not accommodated for, and the person quite literally, has a sensory short circuit.
We will likely never ALL agree on the terminology, but sometimes in our effort to educate ourselves, we can inadvertently hurt those around us by engaging in outdated thinking, that... even with the purest of hearts, we didn’t even realize was a problem!
Savant Syndrome is a condition where a person exhibits an "island of genius" in comparison to their overall abilities, usually in areas relating to memory, stats, math, music, art, etc. Savant Skills, or "Splinter Skills," as they are often referred to within the Autism community, are skills that reflect this "island of genius" and they occur in roughly 1 out of 10 Autistics.
Elopement is a very common phenomenon in autism where a child will wander away from his/her caregiver. Elopement goes beyond typical childhood wandering.
Echolalia is the phenomenon of repeating words, sentences, or phrases that others have said. It can be a symptom of many disorders, including aphasia, dementia, traumatic brain injury, and schizophrenia, but it's most commonly associated with Autism.
And for the rest of your life, you will say "Yes, but I’m not a Martian. I just ended up here. An anthropologist on Mars." And the difficulty of navigating life with Martians, however lovely they are, might never, ever, ever get easier. Because you are simply not a Martian.