Just so you know, I may earn money or products from the companies mentioned in this post. Links may be affiliate links, which won't cost you anything extra when you purchase. For full affiliate disclosures, click here.
Book Review: I Have Been Buried Under Years of Dust
If you have a loved one in your life with limited verbal capabilities, then you are probably searching for ways to understand what is going on inside their mind. For more than a decade, we have parented a child who lost his emerging vocabulary, swallowed up almost overnight by what one of the authors of this book, Emily Grodin, refers to as “the autistic brain.”
Emily, who co-writes this book with her mother, Valerie Gilpeer, shares concrete, explicit snapshots of her world – a world that was once nearly entirely obscured by her autistic brain.
Like many autism families, Valerie and her husband Tom throw a seemingly endless amount of time, energy and resources at chasing the “right” therapies and programs to find the window to their child’s world. They find their answer when Emily is twenty-five years old, and when a last-ditch attempt at facilitated communication proves to be the answer to unlocking Emily’s autistic brain.
Facilitated communication has gained notoriety in situations when “therapists” have done more than “facilitate” and have put words in their non-verbal clients’ mouths (or hands or AAC devices as the case may be). But in Emily’s case, there are countless ways that her autonomy has been verified, mostly in her recollection of long past memories or individuals that the facilitator has no possible knowledge of. Additionally, the type of support that Emily requires is not an intrusive hand-over-hand style of prompting, but rather a very non-invasive pinch of her sleeve, and the occasional pressure against the side of her leg.
A Story of Literacy: I Have Been Buried Under Years of Dust
If you are not already an avid listener of the Lomah podcast, you should be. https://www.lomah.org/ Case in point: a recent series on literacy for learners with complex needs. As a career educator and a decade into autism mom life, this series created a mindset shift for me. And I Have Been Buried Under Years of Dust is an example of the power of literacy writ large. Grodin and Valpeer both provide insight into how literacy developed for Emily, even while communication was a challenge. And the podcast series will help you see how you can reexamine and re-envision the literacy practices in your own home and school programs.
A Story of Resiliency: I Have Been Buried Under Years of Dust
When you are navigating a complex health challenge, you often find yourself trying just about anything to find a path forward. I often tell people we throw a lot of spaghetti at the wall, and see what sticks. With autism, if your finances allow, that pasta is not a 99-cent box from the corner market, but rather handmade, artisanal, organic spaghettoni. In other words, some really precious noodles. But no matter the cost of an intervention, you really don’t know what will stick.
And there is a false assumption that individuals and families should start with “low-tech” interventions (like laminated picture cards called PECS – Picture Exchange Communication System) before “moving up” to higher tech solutions like tablets. The Talking with Tech podcast highlights this falsehood frequently – and Emily’s story reinforces it. Typing is her voice – and no amount of laminated cards will help her type.
A Story of Hope: I Have Been Buried Under Years of Dust
As you plow through the long days of autism parenthood, you look up and realize that the years are, in fact, shorter than you could have imagined. From the time of diagnosis onward, it can feel like a race against an invisible, yet fearsome, clock, particularly in the world of non speaking autism. And around every corner seems to be a claim of “don’t worry, my aunt/cousin/neighbor/nephew didn’t speak until they were X years old” with X always increasing.
This race against time is not unique to autism – certainly timely responses matter in a host of medical situations. The effects of therapies and interventions in autism, however, exist in a landscape of grey. While the effects of a medication or treatment can be often seen immediately with other health challenges, in autism it may take weeks, months, or even years to see results.
So while it may strike some readers that twenty-five is “late” for Ms. Grodin to have found her voice, as a parent it serves as an unwavering source of hope. Hope that each step, each action, each strand of exquisitely crafted semolina pasta dangling from the wall, will help us find his voice.