Next Level has opened opportunities for me to share privately about resources which have been helpful for our family. I’m going to list some of those resources here for individuals and families who may be currently looking for support. If you know of other resources and want to share with the larger community, please reach out to my social media accounts or shoot me an email at authorsamaracoledoyon@gmail.com.
Communication
His electronic AAC device (Augmentative and Alternative Communication device) has given Coen a chance to express more explicit needs and preferences to us than gesturing and eye-contact alone, although I believe learning to read and respond to his body language and other forms of communication have been just as important.
We’re still learning how and when to model communication, prompt or remind Coen that his device is available, and give him space when his device is not how he wants to talk to us. But if you care for or about a nonspeaking human being, and you’re hesitant or unsure about whether or not to try an electronic AAC device, I encourage you to explore this possibility.
We started the process by expressing interest to the Speech and Language Pathologist who worked at our son’s school. And I’ve heard horror stories of terrible forms of speech therapy. But we’ve been very privileged to have access to educational settings where all forms of communication are accepted and where “speech” sessions have been focused on establishing meaningful, two-way communication, rather than trying to force oral speech. The SLP working with Coen did some trial runs to find the AAC device which seemed most compatible and intuitive for him and then helped us navigate resources for funding and ordering it. She even came to our house to show us how to use it.
We also have old fashioned, non-electronic pictures / symbols on key chains, in binders, and on laminated pages.
And, while we haven’t begun exploring it yet ourselves, I’ve heard many personal testimonies of how spelling and letter board tools have given non-speakers the access to communication they needed. These are methods we intend to research more as Coen continues to grow and learn.
I believe the most effective way to support communication is by staying flexible and open, having faith in our children and loved ones, and being willing to explore how they feel safest, most comfortable, and most empowered to share their thoughts and feelings with us.
Advocates and Educators
Here are some of the Autistic advocates and educators who have challenged me and helped me grow as a parent and as a human being. I’m very grateful for the work they’re putting into the world. They’ve helped to shift my perspective in some fundamental ways, and I don’t think our family would be where we are, trying new things and adapting to ever changing challenges without access to these kinds of public voices:
Tiffany Hammond / Fidgets and Fries
Tiffany Modeste / Nigh Functioning Autism
Jules Edwards / Autistic Typing
Danny Whitty / Danny with Words—
Practical Purchases
These tools are a privilege to have access to, and we know not everyone can afford them–especially now. Locally, The Robbie Foundation helps families cover costs for some of the larger purchases we sometimes need.
A wheelchair has helped to quell anxiety and facilitate a safer, more regulated experience in parking lots, stores, new buildings, medical settings, and airports. Although nobody in our family requires a wheelchair for movement, this form of support, along with Caroline’s Cart have made navigating our larger community much safer, less scary, and more accessible for Coen.
Oral Sensory tools like these and fidgets have also been really helpful in new settings and places which bring on anxiety, and trampolines and swings like this one have created opportunities for safe sensory input and made our home a better environment for my son and our entire family.
Local Organizations
Woodford’s Family Services has helped us with community case management and direct educational support. We’ve met some incredible people who have gone above and beyond in their efforts to support us through a variety of challenges in community settings, including doctor’s appointments and the dentist.
Children’s Odyssey was the first organization to lend guidance to our family as we pursued a diagnosis and tried to figure out what came next. It’s a beautiful pre-k program full of people who care about the children and families in their community.
The Courageous Steps Project isn’t very close to us, geographically, but Connor Archer has met with us virtually to help prepare us for IEP meetings and to share his perspective on and support for Next Level. Courageous Steps runs several community programs in northern Maine, including the Green House Village Preschool.
Other Books to Consider
I’ll be adding titles to this list as time and my awareness of new books allow. Here are a couple to start with:
A Day With No Words (Wheat Penny Press, 2023) by Tiffany Hamond, illustrated by Kate Cosgrove was a #1 Ney York Times Bestseller. This is a beautiful book written from the perspective of a nonspeaking communicator.
Fighting For Yes, by Maryann Cocca-Leffler and illustrated by Vivien Mildenberger has been a powerful conversation starter in our home about the history and necessity of disability rights. This book features a note by the late Judith Heumann, whoss legacy in the fight for disability rights continues to transform our communities into more inclusive and welcoming spaces.
Too Much!: An Overwhelming Day by Jolene Gutiérrez, illustrated by Angel Chang, is a helpful read for kiddos, parents, and caregivers alike. This book is such a visceral reminder of how harsh everyday experiences can be for kiddos with sensory processing disorders and challenges and how a little bit of understanding, communication, and accommodation can make a huge difference for us all.