Thanks, Sarah, for joining us at Ocean State Stories. Momentarily, we’ll get into Pieces of Perception, but let’s start with you. Please tell us about your background. Where did you grow up?
I grew up in Bridgton, Maine, a small rural town, in a 1770s farmhouse. The youngest of three girls, it was an upbringing rooted in taking care of yourself, your home, your family and community. I think it shaped more of who I became as a mother and woman than I understood at the time. It instilled in me a hunger to always search for answers and avenues to support and protect myself and my family.
I came to Rhode Island for college and to be close to my one sister and her family, before building my own.
What schools did you attend?
I attended Bryant University, where I majored in accounting with a minor in political science for my formal education. Although, over the years, I have added certifications both in the accounting and professional space, as well as the wellness and spiritual space. I like to consider myself a perpetual learner.
What are some of the jobs you held before Pieces of Perception?
I started my career in public accounting, moved into public school finance, and I currently serve as executive director of a healthcare purchasing collaborative. I am also a Reiki practitioner, and work with individuals through automatic writing and guided visualizations to support them in times of transition in their lives.
What I have realized is through all of the jobs I have held, is that they all focus on essentially the same skill. Taking something complicated and disorganized or overwhelming and making it legible to the people who have to act on it.
Pieces of Perception came out of my own need for that clarity. Taking a complex experience with my son, and creating a plan to support him. The hope is that it grows to serve other families too.
On your website, you write: “For years, I sat in IEP meetings, specialist offices, and family living rooms trying to explain my son.” Tell us about him.
My son Joey just turned thirteen. As a baby he hit every early milestone, and then, just after two and a half, it was as if he went into a fog. His speech regressed. Eye contact dropped. Clothing, shoes, loud rooms and crowds all became unbearable. The worst regression of all – he stopped being able to say “I love you.”
We were still trying to understand what was happening when he started kindergarten the year COVID hit, and he was diagnosed autistic soon after.
He is bright and kind and funny and challenges those around him to think about the world around us in a different way with his probing thoughts and questions. He can also be extremely rigid in his thinking, and his memory is remarkable in a way that at times creates challenges for him. He holds onto nearly everything that has ever happened to him.
There were three years in early elementary when he was under enormous stress in the school building, showing behaviors there that we never saw anywhere else, and nobody could tell us why. He declined year after year. We began homeschooling in fifth grade, as much to rebuild his trust in adults and peers in his own environment, and to improve his academics which had taken a back seat to his anxiety. His diagnosis has since been expanded to include several other conditions as a result of those three years.
Along the way we met a great many professionals including counselors, psychologists, doctors, PASS workers. Every time a new group came together, we started from the beginning. A diagnosis is not a map. It does not tell anyone how this particular child navigates his fears, or what helps him flourish. I filled out form after form that went into somebody else’s folder, and none of it ever came back to me as a whole picture.
Meanwhile, having him at home, I was gathering an enormous amount of information about how my son works. I learned that precision of language matters because he is so literal, that a calm and consistent adult matters almost more than anything else, when and why he shuts down, how essential it was to create consistency between myself, his Dad, his sister, and other family members and friends as we worked to rebuild is trust in others and his environment – but I had no idea how to put it to use.
You also write: “It felt like a constant game of whack-a-mole. He presented one way at school and another way at home. What worked on Tuesday stopped working by Thursday.” Can you break that down for us?
It meant that nothing carried over. At home he could be settled and funny; somewhere else, the same child was shutting down, and I was one of the only people who had seen both versions.
A strategy would work beautifully on Tuesday. Same words, same routine and by Thursday it did nothing, because something underneath it had changed or his mind fixated on an aspect of the routine that I wasn’t aware of. Or it could have been how much he had already absorbed that week while with others. How loud the room was. Whether the adult in front of him was consistent and calm, whether his thoughts were impacting his ability to be present enough to deal with the situation at hand.
So you deal with the thing that popped up, and another one pops up somewhere else. You are never working from a whole picture. You are reacting to the last thing that went wrong, and every adult involved is reacting to a different last thing. It was exhausting and the outcome was him struggling more and more as we tried to figure out what to try to “solve” for next.
And you state: “The turning point came when we finally had a comprehensive plan — not just a diagnosis, but a real, specific, shareable guide to who he is and how he works.” Please expand on that.
A diagnosis gives you a category. It does not tell anyone what to actually do on a Tuesday morning. It doesn’t tell you what your child needs, or what is triggering them.
The change for us came when I stopped carrying everything in my head and in folders of intake forms and put it into one document. How he communicates, what his sensory world is like, what comes before a shutdown, what helps him recover, what he is brilliant at, and the precise language that works with him, because he is so literal.
None of it was new information. I already knew all of it because I had been witnessing it for the past several years. I just didn’t know how to USE all of the information I had to help him feel empowered, heard, and understood in his own story.
It provided a document I could hand to every adult in his life. It existed in a form I could hand to someone else that went far deeper than just a diagnosis or a goal sheet. We stopped starting from scratch in every, single new room.
That document is the reason Pieces of Perception exists. It reminds families to trust their thoughts, their feelings, their observations of their child enough to be an active participant in helping them truly thrive.
OK, now Pieces of Perception. Please give us an overview.
Pieces of Perception is a family empowerment platform.
A parent answers a guided, online questionnaire about their child. How they communicate, their sensory patterns, what sets them off, what settles them, what they love, what they do on a regular day, and what they are struggling with and those answers become a professionally formatted report the family owns and can share with anyone: a therapist, a doctor, a grandparent, a coach, a partner/spouse, a new provider, a school team.
The premise is simple. Parents already know their children better than anyone else in the room. What they have never had is documentation or the words to explain what they know, what they see, and create a proactive plan to improve communication and consistency in a manner that will support their child.
What it really does is end the re-explaining. Every new adult in a child’s life starts at zero. The therapist, the doctor, the coach, the grandparent, the sitter, the new provider – and the parent is the one who has to close that gap out loud, again, usually in ten rushed minutes and often with the child standing right there listening to himself be described.
Meanwhile the child is being met by someone who does not yet know that the overhead hum is the problem, or that “in a minute” means something very literal to him. Every one of those first meetings is a chance for a child to be misread, and the parent knows it before they walk in the door.
We do not tell a parent about their child. We organize what they already know into something the next adult can act on. It gives parents an active, supported and powerful voice to help support their child.
What is the Comprehensive Plan?
The Comprehensive Plan is the whole picture. It is about 37 pages across fourteen sections. A Sensory Map covering all seven sensory systems. A strengths inventory. A communication guide. Regulation and meltdown support. A suggested daily rhythm. A one-page cheat sheet. And a week-one checklist, because a parent should not be left holding insight that they then have to figure out how to use.
It is the report for the family who is tired of re-explaining everything from the beginning, or needs a new approach to daily support for their child.
And the Action Report?
The Action Report goes deep on the one thing consuming everything right now. A specific challenge or obstacle that is impacting: mornings, transitions, increasing meltdowns, creating difficulties with eating, social experiences, bedtime. etc. Instead of the whole picture, it takes the single issue a family names and builds around it: an issue summary, a quick reference page, a communication reset, a four-week plan, a meltdown playbook, and day-28 markers so a parent can see for herself whether anything has shifted. About 21 pages.
For a lot of families that is the right place to start. You do not have the bandwidth to work on everything. You need this one thing to stop being the hardest part of the day.
And The Next Chapter Profile?
The Next Chapter is for the years nobody prepares you for 16 and beyond, when school supports end and there is no obvious next room to walk into. Part one is the family’s narrative. Part two is a handoff pack, written to be scanned in five minutes by the people who will actually be there: an employer, a job coach, an adult day or employment program, a transition team. Part three is written to the young adult, to remind them of their own strengthens and gifts.
It is in a small beta right now with a limited group of families before it opens publicly. That population has been badly underserved, and I was not willing to rush it out. I am hoping that it will be live in November.
What are the components of Inside Your Report?
There are seven pieces, and every one has a job and is written specifically for each child. They are not generic templates, they are designed to be uniquely prepared to support the individual.
The Sensory Map lays out all seven sensory systems and what each one looks like for that child. The Strengths Spotlight is a real accounting of what they are good at, not a consolation paragraph. The Communication Quick Guide holds the specific language and approaches that work with them. The Regulation Toolkit holds their calming strategies and de-escalation steps. The Quick Reference Cheat Sheet is one printable page — personality, triggers, likes, dislikes, goals — for the sitter or the substitute who has ten seconds. The Week-One Action Checklist turns all of it into prioritized steps. And Your Brain, Your Voice is written to the child, age-appropriately, so they can read about themselves in a way that is not a list of deficits.
Each section was carefully designed to provide support in the areas that I, as a parent, was searching for through my own lived experience with the hope that it would help support others on their journey.
What is the Behavior Translator?
The Behavior Translator is free, and it lives at piecesofperception.com/free.
Two pages. Ten behaviors most parents have already seen – the covered ears, the sudden no, the shutdown at the door – with what a child’s nervous system may be actually asking for underneath each one, and something to try right now.
There is no email required, nothing to buy. I just wanted to create something tangible families could walk away with immediately.
I made it because the distance between “my child is doing this” and “here is a way to think about it” should not cost anything. If it is the only thing a family ever takes from us, and it provides even a little support, that is a good outcome.
It states on your site that you are an author. What have you written?
Yes, I wrote a memoir called “When the White Picket Fence Is No Longer Enough.”
It is about what happens when a life that looks complete from the outside stops being enough on the inside and the emotional experience of aligning with your heart and soul’s calling. Through sharing my own journey, it challenges readers to see the version of yourself you agree to be in order to keep everything intact, and what it costs to stop agreeing. It is not a book about leaving a life. It is a book about telling the truth about the one you were meant to step into.
Through writing my own story, I learned how essential it is for a person to feel alive, seen and heard in their own story. That is as true for our children as it is for us.
Anything else you’d like to add?
Only the part that took me years to believe, and that I would want a parent reading this to hear: you are not failing.
You are the most qualified person in the room when it comes to your child, and nobody has ever asked you for documentation. Every form I filled out went into a folder that was sometimes read, sometimes ignored, but very rarely taken seriously and used to truly support my child in the way he needed.
I believe that external support and professional and medical experts are essential on this journey, but I do not for a moment discount the value that the family brings to the table. I know first hand how easy it is to feel like I don’t know what I am doing, that I wasn’t cut out for this, or that the knowledge and experience I have isn’t valued, but we were given our children for a reason. They need our voice, our belief in them, our love, and our determination to be an active role in their success.
I also want to be clear about what this is (and is not) the reports are not diagnostic and they are not medical advice. They are a parent’s own knowledge, written down properly, in a form that every adult can actually use.
