Jennifer Shaw

A writer's musings in the mountains

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Category: special needs

  • Spooky AAC Awareness

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    October is a special month. We get to celebrate Halloween while helping one another become more aware of issues like breast and mental health.

    It is also Augmentative and Alternative Communication (AAC) Awareness Month.

    AAC is any manner or system which allows a non or limited-speaking person to communicate in ways other than their own vocalized words. It is a subject dear to me given that our daughter, Daphne, is a non-speaking autistic whose life has been so enriched by her alternative communication technology.

    This is the third autumn, for example, that she’s been able to tell us via her AAC software, TouchChat (on her speech-dedicated i-Pad or “talker,” as we call it), what she wants to be for Halloween. In 2023 it was an elephant.

    Last year, she said “squid” on her talker.

    This year, inspired by our trip to the Mystic Aquarium, she told us “sea lion.”

    Isn’t that simply wonderful?

    Proud of her costume

    I was also asked this month to volunteer with the Vermont Family Network. I can’t discuss specifics due to confidentiality, but basically this work entailed sharing how our family has supported Daphne’s communication development. Here are some photos and a short video I submitted; they’re good little glimpses into what her software is like.

    Main page with core (most frequently used) vocabulary

    People page, customizable
    Places page
    Actions page
    Descriptions page
    Categories page, where most fringe vocabulary (less frequent words) can be found

    Daph’s inability to speak was one of the most devastating challenges we faced early in her diagnosis, but I don’t feel that way anymore. Truly, TouchChat is a major component of her voice, and she loves her talker. She can now express her basic needs, like what she wants to eat, drink, and do, while also using it to say “yes,” “no,” “please,” “thank you,” “help,” and “I love you” among other phrases. TouchChat is allowing her to become quite the self-advocate.

    Social page
    Quick video demo

    Daphne also loves exploring her software and continues to learn new “fringe” vocabulary every day, especially in the context of songs, books, and games. The more playful for her, the better, as with any child. She can now answer academic questions and even sing and read with us using TouchChat.

    I am eternally grateful for this technology and for all the speech therapists, educators, other experts, and families/advocates who do so much to empower AAC users and teach the world about its possibilities, normalizing its use for everyone.

    Next week, when her grandparents, dad, and I take Daphne to the local Trunk or Treat at the Kingdom Campgrounds, she will be able to say “Trick or Treat” and “Thank you” while collecting her candy. She will, in the best ways, be just like everyone else.

    Trying on her sea lion costume

    In other seasonal news…

    I harvested nine beautiful orange pumpkins from our garden. Most of them I left outside on display, but you can see they’ve become oversized hen treats.

    Wow… hungry hens

    No matter–it’s a great use for the gourds. Apparently, pumpkin is nutritious for chickens, the flesh “chock full of vitamin E, thiamine, niacin, vitamin B6 and iron” while the seeds are “an excellent source of dietary fiber, zinc, protein and healthy fats.” So yay, I’ll let the girls peck them all day, as long as they’re still eating their regular feed.

    Speaking of pumpkins, we took Daph to a pumpkin decorating event at our favorite pizza place, Papa Tirozzi’s Bakery. She did a fabulous job tying a mermaid tail to her chosen gourd and pressing stickers and rhinestones on its surface, a great fine motor activity.

    Concentrating on her craft

    Daphne also happened to steal the organizer’s heart, and her picture made it onto Tirozzi’s Facebook page.

    Social media darling

    This weekend, we’re heading south for a family jaunt to the 2025 Carnage gaming convention in Killington. We’re visiting as guests this year, but we plan to scope it all out and, maybe, attend as Mythic Moose vendors next year. That could be a fabulous way to grow our online trading card game business.

    I’ve got my mini boxed wine and camping glass ready to go for the hotel room.

    Goodies to go

    I’d love to know your special seasonal plans! Or, if you have any questions about AAC, don’t hesitate to pop them in the comments.

    See you next week!

    XOXO,

    Jenn

  • Mystical Days

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    Hello from Mystic, Connecticut!

    We are on a short vacation just four hours from home, here in this historical maritime village of southern New England.

    Tomorrow my husband will help take the famous schooner The Brilliant out on a little harbor jaunt. He spent time crewing catamarans and other sailboats in his youth, and he has always wanted to go out on this boat, so this was one of his big gifts for his 50th birthday. Thank you, Uncle J.T.!

    Image from the Mystic Seaport Museum

    In preparation for this special event, we rented a seaside cottage via Air BnB that looks out on a little inlet marsh, and we arrived yesterday evening. After getting groceries and unpacking, Jer and I sipped local craft beer in Adirondack chairs looking out at the water while Daphne listened to her music and enjoyed the autumn sunset with us.

    Seaside Happy Hour
    Daphne enjoying the view

    Today has been a special day for me and her especially.

    Aquarium
    So many fish!

    We spent two hours at the famous Mystic Aquarium, where Daph’s favorite experience was the sea lion show. She sat fully engaged in the fifteen minute performance totally sans iPhone or iPad, a rarity, and cried a little when it was over. It was an impressive show, with three sea lions zooming through the water, leaping out, and dancing, waving, and doing handstands on the stage behind the tank. An actual story unfolded–the animals and their trainers made up the Sea Squad, and they were all fighting to clean up the beaches of the Pacific Northwest. The environmental message was kid-friendly and well-done, and the sea lions were sleek and graceful.

    Bravo!
    Before the show

    In fact, Daph was clear she needed as a souvenir a small sea lion plushie–$20!!– from the enormous gift shop (as large as any of the exhibits). Of course, her dad said yes.

    She also enjoyed the beluga tank and stingray petting zoo.

    That spotted ray was very curious.

    It’s always a joy to see her immersed in something new, though it also reinforced how much she loves all things aquatic.

    After that, we ventured over to the Olde Mistick Village to shop. There was a place I definitely needed to go–Alice’s Little Haunted Bookshop.

    Oh. My. Goodness!!

    It was a brilliantly atmospheric brick-and-mortar horror merchant’s, and I could have browsed there all day.

    Heaven

    I snapped a few quick pics and narrowed down my choices to Sir Walter Scott’s Supernatural Short Stories and Nettle and Bone by T. Kingfisher, both perfect for spooky season.

    Oh, Edgar!

    We absolutely need more genre-driven, specialty little brick-and-mortars in the world–am I right, fellow bibliophiles?

    Mystic itself is a gorgeous blue-blooded New England seaside village. It exudes quiet Old Money wealth, so I’m glad I brought my Tiffany pearls.

    I’m viewing this weekend not only as a wonderful family trip, but as a personal treat for having just had a story published in Spellbound.

    It’s important that we writers treat ourselves. The publication day of a book or literary magazine is often quiet, so much so it can feel anticlimactic, so it’s important to do something for ourselves to honor our work. After all, we created something new, with our own imaginations, that didn’t exist in the world before now, and here it all is. That is absolutely magical, especially in this era of ever-encroaching AI.

    Are you doing anything special to usher in the autumn season?

    Or, if you’re a book lover like me, what would be your ideal brick-and-mortar bookshop? What would it look like, contain, exude? What titles and authors would be found there?

    Thank you for reading. Happy autumn, and see you next week!

    XOXO,

    Jenn

  • Our Easter, Plus Disability Book Week

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    Hi, friends. If you celebrate Easter, I hope you had a good one.

    Daph feeling the spirit

    Ours was low-key but unexpectedly lovely. We had no family in town and decided not to try an actual church service on such a big day, so we got up leisurely, which was good for Jer since he’d been out late the night before at his monthly gaming group. I showered, put on some makeup–a rarity, nowadays– and donned my pearls because, why not? Then, over several cups of coffee, we enjoyed watching our autistic daughter, Daphne, play with her talking egg plushie and dragon fidget from the Easter Bunny. Around eleven, we all hopped in the car just to get out for a bit. The sky was blue, the sun was shining, and spring felt imminent–such a relief after the long winter here in northern Vermont. Being indoors all day felt like a crime.

    We eventually made our way up Darling Hill to a chapel that now belongs to an inn and caters mostly to weddings but also serves as a public sanctuary for anyone needing some quiet reflective time. A door was propped open with not a soul in sight, so we had the privacy to introduce Daph to the concept of church.

    In the chapel

    I sang one line from a favorite nursery rhyme of hers, Mulberry Bush: “This is the way we pray at church…,” and she liked that connection. I also took a few moments to gaze on the statue of the crucifixion above the altar (this being a Catholic chapel) and reflect on the immense powers of sacrifice, grace, renewal, and the meanings of true love.

    Easter family selfie

    Back home, I set a semi-formal table–again, why not?–and cooked our Easter brunch. We enjoyed scrambled eggs from our own coop, plus bacon, fruit, veggies, pasta salad, cheese, and cupcakes. Then we wrapped up the day with some swinging outside and a quiet evening at home. I’d thought about motoring Daphne through an egg hunt, but she seemed happier just playing with the plastic eggs on the couch.

    Tablescape

    That’s the thing with our special needs family–we roll with what’s feeling good, particularly for Daphne. Often that means our holidays don’t look the way they usually do in other homes. Christmas Day, for example, means we open presents slowly from morning into evening with several breaks in between so Daph doesn’t get overwhelmed. Trick-or-treating on Halloween means we go to one local Trunk-or-Treat and let her get some candy for as long as she’s feeling the spirit, which is usually about 15-20 mins. Thanksgiving means she’s still only eating her familiar foods, and often with a phone or her talker playing soft music at the table. None of it is “proper” or usual, but it works for us, and my daughter enjoys her holidays as much as any child does.

    I learned long ago that our lives will always look a little different, and that’s okay. It was a truth that became easy to accept because we’re all generally happy.

    Joy needs no particular template.

    On that note, let me wish you all a happy Autism Acceptance Month one final time.

    On another related note, this week (April 20-26) is Disability Book Week. One of my current favorite authors, Mary Mecham, founded this week as a time to understand and celebrate different abilities among us using the power of story, which is brilliant given how well fiction can teach us empathy.

    Among her many books, she has five published YA fairy tale retellings, all clean and sweet, that include disability representation. I’m currently loving one of them: Poisoned: Snow White’s Story.

    In it, Snow White befriends seven brothers, one of whom has an intellectual disability (like Mecham’s own two daughters) and one of whom is his caretaker.

    From marymecham.com/poisoned

    Through her interactions and relationships with Oliver and Malcolm, Snow learns how to bond with someone who is understandably a little off-putting at first but possesses a powerful ability to love and find joy in life. Oliver loves Snow for exactly who she is, and he brings her comfort as her own life turns uncertain and disorienting. Malcolm, Oliver’s devoted brother and caretaker and the novel’s surly love interest, comes to adore Snow too. I’m about 40% through, and right now the thoughtful development of their relationship is one of my favorite things about this story.

    From marymecham.com/poisoned

    My other is how honest Mecham is about the realities of disability, including the many challenges for both the disabled person and their caretaker(s). Oliver has few friends and sometimes struggles to understand socially-acceptable behavior, but his joy and unconditional love show Snow the beauty of his humanity and life in general. Malcolm suffers from burnout and an often cynical, distrustful attitude, but his realistic characterization helps me feel seen as a family member/caretaker of a disabled person myself.

    I also appreciate the novel’s point of view. Telling this story through Snow’s eyes is a fantastic way for readers to learn how to approach and befriend people who are radically different, and it does so without being preachy or judgmental or romanticizing disability in any unfair way. I so appreciate Mecham’s work given my daughter’s autism. Helping others understand and accept disabilities of all kinds is especially important right now, given the political climate.

    Participating in Disability Book Week is easy–all you need to do is enjoy a book that includes disability representation in some way. Here are Mecham’s five:

    Poisoned: Intellectual Disability

    Becoming Hook: Limb Difference *Btw, I loved this book when I read it last year! It got me “hooked” on Mecham’s style. She writes swoon so well!

    A Curse of Gold and Beauty: Rheumatoid Arthritis

    Scarlett and the Dark Woods: Blindness

    Hunting Sirens: Deaf rep

    Thank you, Mary! 🙂

    Here are some others, too:

    To Kill a Mockingbird by Harper Lee: An amazing classic, and I think a lot of people don’t realize the character Boo Radley likely has a disability, probably what we would now diagnose as autism. As Atticus Finch tells Scout, we don’t know what others’ lives are like until “we’ve walked a mile in someone else’s shoes.” A powerful lesson in empathy, and worth every rereading.

    Gregory Peck and Mary Badham in To Kill A Mockingbird. TCM pressite. CB The Plain Dealer from Al.com

    All the Light We Cannot See by Anthony Doerr: a powerful, poignant novel of historical fiction in which a main character, Marie-Laure, is blind and not only adapts, but thrives and later heroically survives the German occupation of her town. Her Uncle Etienne also suffers from Post-Traumatic Stress Disorder but overcomes his trauma from the first world war to act bravely and conscientiously alongside his great-niece for the local resistance movement.

    The Reason I Jump by Naoki Higashida: The memoir of a nonspeaking autistic person. I found it hopeful and moving, despite the book’s controversy as a potentially unreliable source.

    Here is a link to more titles that are especially great for young readers.

    Enjoy!

    I wish I’d been able to get this post up earlier this week, but you know how life happens.

    True spring will be here soon!

    I’ll be back next week with a brief writing update and a few more reflections on books I’ve loved.

    Happy reading! Thank you for being willing to put yourself in someone else’s shoes.

    XOXO,

    Jenn

  • Happy Autism Acceptance Month!

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    My daughter, Daphne, will turn ten in ten days. Every morning when we pull into the school parking lot, I tell her, “You are a sweet, smart, beautiful, wonderful little girl. Daddy and I love you so much.”

    She is absolutely all of those qualities.

    Sweet girl in her Toby the Dog pjs

    After she gets to know you, and especially if you take some time to enter her world by singing or dancing with her or by responding to her comments on her Augmentative and Alternative Communication (AAC) device, she will adore you. She will give you high fives and maybe even a hug or two.

    Cuddling with Dad

    Daphne also generalizes what she learns well, carrying over lessons in communication, academic/motor skills, and social etiquette from school to home and vice versa, often without any of us making those connections explicit.

    Snipping Playdoh

    She’s also using new words all the time on her speech-dedicated AAC device, or her “talker,” as we call it. A word she discovered this week was “invitation,” which we talked about after we came across it in one of her Sesame Street books, and she enjoyed repeating it on her device each time I read that page. She’s reading favorite words, too. She can look at a long playlist of song titles without images and select the one she wants.

    Using TouchChat for her AAC

    You only have to look at her pictures to see how naturally gorgeous Daphne is. It still blows my mind that she’s a true blond. We don’t really have any of those on either side of the family, but clearly there’s a gene for it somewhere.

    Finally, Daph’s ability to find such easy joy in “little” things still amazes me.

    The joy of an open window

    She loves being outdoors on a nice day–swinging, kicking her soccer ball, walking, picking up leaves or sticks, and petting the hens. She loves to feel the snow or wind on her body and listen to the way the breeze rustles the nearby leaves and, farther away, the towering treetops. She loves looking at all the sights around her, and running her hands over the branches of the firs cultivated on our property. Most kiddos enjoy these things too, but I suspect Daphne’s ability to be truly present in nature is exceptional.

    Trying to swim in the snow

    And, she adores the water. Beach and lake swimming are her very favorite things, and it’s a bonus of living here in Vermont, in such beautiful lake country.

    At Lake Willoughby two years ago

    I believe she feels most regulated and natural in the water. She is a Taurus, an earth sign, but she seems more connected to the aquatic. In this way she’s very much her father’s child and a product of her paternal family, who love sailing and swimming and have the sea in their veins.

    Wading turned into swimming

    Her love of music, especially classical music, she gets from my side, where there’s a light musical legacy. Daphne adores Claire de Lune by Debussy, among other classical and instrumental pieces. She also loves nursery rhymes and American folk songs. I never thought I’d know, and sing on repeat, the lyrics to selections like “Little Nut Tree,” “Billy Boy,” and “Polly Wolly Doodle,” but there you go, and I’m fond of them too (though we won’t mention the origins of “Polly”). I’m fond of anything that brings my daughter joy.

    Daphne is capable of such profound happiness, all the time. Even on the hard days, when she’s hormonal and frustrated because she can’t verbally articulate her complex feelings and thoughts, she always finds her way back to cheerfulness. She has real challenges, no doubt, and I don’t want to romanticize her autism. The truth, though, is that most of us face serious challenges at some point in our lives, and we have to learn to adapt. My daughter is no different.

    What we’ve learned is that her autism means we all have to work a little harder to help her understand and navigate a neurotypical world. Perhaps, her dad and I have to muster a little more patience, too, than most parents of neurotypical kiddos. We’re far from perfect, but we strive, every day, to cultivate calmness and composure in an unconditionally-loving home.

    Xmas morning

    I should be careful when speaking on my daughter’s behalf, but if she could tell us, I think she would say, autism hasn’t destroyed her life. I can assert that it hasn’t destroyed her family’s life either, despite what RFK Jr. so recently and ignorantly claimed. (It was one among several sweeping, inaccurate claims.)

    My daughter is a precious gift. I wouldn’t change a thing about her except maybe the ability to communicate a little more easily, in whatever way suits her best, and only for her own sake. She is developing in leaps and bounds communication-wise, however, and is becoming an assertive self-advocate.

    I am grateful for a modern world that is so much better now about accepting and supporting neurodivergence. Her teachers and classmates have always been wonderful, and our larger family has always been incredibly supportive and encouraging. Daphne absolutely has a village, and I’m so thankful for that.

    Miss Daphne

    Her dad and I do worry about the political climate, however. RFK Jr.’s recent statement about autistic kids “never pay[ing] taxes” is especially unnerving, given the Trump Administration’s anti-Diversity, Equity, & Inclusion agenda. There’s so much evidence indicating they don’t respect citizenship or even view all people as naturally equal, and it reeks of fascist eugenics.

    It’s not a realistic option for us, but we’ve definitely fantasized about relocating elsewhere in the world.

    Ok, I don’t want to bog us all down. I’d rather focus on the beauty of seeing and accepting all people, autistics among them, and that’s what April is all about.

    So, happy Autism Acceptance Month! Never be afraid to smile and say hi to an autistic person. Never be afraid to invite them somewhere or include them in some way. If you’re unsure about anything, ask questions. A gentle, curious tone is always welcome.

    To the parents and educators out there, thank you for teaching our children all about differences and the value of inclusion. It’s more important than ever.

    Photo by Kaja Reichardt from Unsplash

    Finally, if you celebrate, have a wonderful Easter weekend. We’re toying with the idea of attending Sunday service at one of the Episcopal churches up here. Not only does the spiritual communion sound good, it would be another wonderful way to engage more in our community, something I’ve been wanting to do lately.

    See you next week!

    XOXO,

    Jenn