By Leslie Lindsay
Not every child communicates in spoken words; however, that hardly means they have nothing to say.
~APRAXIA MONDAY|ALWAYS WITH A BOOK~
Now more than ever, we are leaning toward a changing landscape. Our world must focus more on kindness, inclusion, and acceptance. Because our daily life has shifted in so many ways—in how we socialize, educate our children, and work, it’s so important to be kind, and to show our kindness in ways that don’t always require words.
Here, author, ‘apraxia mom’ and therapist, Dana Hall takes us on a journey that showcases the power of friendship, connection, and imagination.
I am so delighted to share this darling book, which just nearly brought tears to my eyes.
BEYOND WORDS is a must-have resource will compliment any home library, school, speech language program, or classroom. Through beautiful illustrations and thoughtful text, we come to understand the inner world of children that have differences others can’t always see.
The writing is warm and holistic, supportive, and nurturing. My only complaint is, I wish I had this in my toolbox when my daughter, Kate, was younger.
A bit about childhood apraxia of speech (CAS):
Childhood apraxia of speech (CAS) is a motor-neurological speech disorder that makes it a challenge to ‘get the words out.’ A child with apraxia of speech knows exactly what he or she wants to say, but has difficulty planning the sequences to do so; the words just won’t come. It’s a bit like having something on the tip-of-your-tongue.
Children with speech/language challenges such as CAS can often feel isolated and alone. BEYOND WORDS stresses the importance of ‘listening with your heart,’ using one’s senses to slow down and use patience, it’s about the ability to enter one’s world…without words. Because there’s more to friendship than speaking.
Please join me in welcoming the lovely and talented Dana Hall to the author interview series:
Dana, welcome! Oh, I love this book. It’s so sweet and so real and I promise you, I got a little teary-eyed. I always want to know what inspired a writer; why this book, why now?
Thanks, Leslie, I appreciate you having me. When my son was diagnosed the first edition of your book was the first book I purchased. It was a source of comfort in that early uncertainty. I am honored to be an advocate and share a piece of my son’s story through our book Beyond Words. The catalyst for writing it came about 2 years after his diagnosis. He was almost five and it was the summer before kindergarten. I took him to the same park almost every day that summer. He started this game where he was a lava monster and the kids would run and he would laugh. He was connecting, without words-or so I thought.
One day during our usual park visit, I did not hear the lava monster make his entry. I casually snuck away from the parent bench and began checking high and low. Somewhere past the swings, I heard it. My heart sank deeper as I tracked the sound of muffled crying. I found the lava monster under the slide. As soon as my eyes fell upon him, I knew something was different. It felt like someone gut punched me. The light in his eyes had dimmed. I understood his approximation right away and it broke me. He looked up and said, “I no monster.”
This moment was harder than the day we received his diagnosis of apraxia. Maybe because on this day, I realized what apraxia had taken from us. I will never forget the echo of our tears under the slide. I came home that day and wrote in my journal the poem that became “Beyond Words.”
I know I’m not alone, so many parents fear the vulnerability of having their child step into the unknown world of school; will they be safe? Will they make friends? If I could help to prevent that light from dimming for one other child then this book has done its job. I never want anyone to feel like they have to be something they are not to be accepted.
BEYOND WORDS has helped us cope, contribute, and connect. Shawn-Michael drew the illustration of the lava monster in the story, it’s really special to see him own his story. I was fortunate to be able to be a guest reader in Shawn-Michael’s class and read the book. I created worksheets to enforce the message and to make it a living narrative. One such activity was the Kindness Challenge where students earn stars for being inclusive.
One of the biggest messages in BEYOND WORDS is that we must slow down, use all of our senses when interacting with our friends who have CAS. But that’s also true for anyone, anytime, whether we have CAS, or not. It’s about mindfulness. Can you expand on that a little more, please?
Yes, exactly! Mindfulness is about observation in a non-judgemental way, through that observation comes awareness and engagement. The book points out ways children can use their senses to learn more about their friends and the world around them. This is important because statistically, we know that 1 in 20 children have a disability that means there are 20 opportunities to advocate and educate children on what the concepts of kindness, inclusion, and acceptance look like in practice. Too often the responsibility seems to fall squarely on the backs of the child with the disability to assimilate, we need to make sure all children are presented with the tools to create friendships and positive social engagement. Facilitating conversations about our diversity is so important, the variance we have as a society is truly one of our greatest strengths- not a weakness. Yes, as a mom I did grieve the loss of the perceived future, then I had to get over myself and see that his future was never mine to define. He is absolutely who he is meant to be and learning to connect to him beyond words has changed how I see the world.
Mindfulness is a process of self-awareness and brings attention to the impact that your interaction can have on someone. In a fast-paced world, BEYOND WORDS reminds us to slow down and act with intentional mindfulness and kindness. I want people to think first before they make comments that could be hurtful and see that spoken language is just one way we communicate.
When my daughter, Kate, was younger, she loved playing in whole-body ways. We made a lot of forts, played hide-and-go-seek, staged scavenger hunts, and made art. Those whole-body activities can be huge fun, but they also are bonding moments—with friends and parents. What other suggestions might you give for fun that doesn’t always require words. [Note: there’s still plenty of laughter, squeals, giggles, and sounds].
I am glad you mentioned hide-and-go-seek, this was a favorite for my son too. It took some parent coaching to get a game off the ground at the park since Shawn-Michael could not verbalize his numbers. With a little patience and creativity, a child at the park suggested he use a bike bell to signal when he was ready to search. It was a beautiful bonding moment and so much fun to see!
We love to play Charades as a family and just laugh and laugh. He also loves painting and drawing. He also enjoys building with cardboard and tubing to create structures. Shawn-Michael is learning to code and loves mathematics; there are great learning applications and programs that foster his love of numbers. He also wants to start his own YouTube channel to showcase how he learned these games; I love it because it motivates him to practice his speaking. (Check out PocketfulOfPixels on YouTube). We also love nature and the outdoors, identifying trees and footprints are a lot of fun too. Apraxia kids can do anything other children do with some modification, creativity, and patience everyone can be included in the fun.
In BEYOND WORDS, there’s a mention of signing, saying, and perhaps using a device to get the message across. Some might worry that signing or using a device is a ‘crutch.’ I tend to disagree, but what might you advise?
I wanted to expose children to various forms of communication and normalize their use in self-expression. I have heard within the community the fear that the introduction of alternative communication strategies could delay the onset of verbal communication. As always I would defer to a qualified speech pathologist with a specialty in apraxia to develop a proper treatment plan for our apraxia warriors. However, my understanding is such, we use a crutch to help us walk. If someone cannot walk without assistance we wouldn’t take away their crutch and demand they run. That crutch can be a tool to foster greater mobility and balance, some may need it longer than others.
Similarly, many children with apraxia of speech, even at young ages, have some awareness of their difficulty and can exhibit frustration and anxiety by not being able to get their needs met. Augmentative and Alternative Communication (AAC) and/or sign language may be appropriate for children with a diagnosis of CAS. It allows the child to connect, participate, and engage in conversation and can be a catalyst for building verbal communication in conjunction with speech/language therapies.
When my son was 3 he was non-verbal, the day he learned the sign for fries he went straight to the counter of a popular fast-food chain and ordered himself some fries. The look of pride on his face, I will never forget. Through AAC and sign language, I learned my son’s favorite food, color, and TV shows- he is now over 78% intelligible but for many years pieces of him were locked away from us. To this day if someone misunderstands him he will sign or draw or use his device to help himself be understood. Parents should not fear using other forms of communication. Providing successful communication experiences only encourages the child to engage and participate in language acquisition.
In this complex time of COVID and limiting social interactions, what might you suggest for families who want their children to spend time in play with friends, but still remain safe?
Remote learning has challenges for all children. For children with apraxia they rely a lot on the non-verbal aspects of communication to express and understand their peers and teacher. This is definitely challenged in a remote classroom setting. Also, because it takes him a moment to get the words together by the time he tries to insert himself into the conversation, the conversation has shifted away from that topic. I saw a lot of frustration early on. One way we worked with this is to use what I call a ‘space holder.’ For instance, if he wants to contribute to the conversation but needs more time he says, “I have an idea…” then it gives time for someone to ask his idea and lets classmates know to pause for him.
In general, I have noticed he is also remarkably less intelligible with a mask on. Additionally, I noticed that when I wear a mask my son understands less of what I am saying, and when I am helping him with pronunciation he struggles more to pick it up. I realized he is really looking at my mouth to understand what to do with his mouth, lips, tongue, and positions. To combat these two issues, we use masks with clear plastic inserts where the lips are gifted some to his friends as well.
Some ideas we have used to keep contact in a safe way have been having book nights where a friend would record or read a story to another. Since he enjoys building with LEGOs we have set up virtual playdates where the children build together and share their creations. He attends speech virtually and is currently in school so the social aspect is being met there. It has been a difficult time for apraxia kids in that we have seen a lot of regression without exposure to in-person speech therapy; however, we are hopeful for the gains to return once we are safe to return to more normative social practices.
~UPDATED, 2nd Edition of SPEAKING OF APRAXIA available from WOODBINE HOUSE!~
Dana, this has been so wonderful. Thank you so much for taking the time to chat with us. Is there anything I should have asked but may have forgotten?
Thank you for having me! Just a few items of interest. In addition to the book, I’m creating a workbook that provides a social-emotional curriculum for children ages 2-8 years old. Currently, you can access almost a dozen free full-page worksheets on the topic of inclusion, acceptance, and kindness which can be used with or without the book by following this link: BeyondWordsWorkbook. A fun fact is that the e-book version of Beyond Words looks amazing in the virtual classroom. Teachers can pick up an e-book, paperback, or hardcover copy of Beyond Words on Amazon and Barnes & Noble.
Also, I encourage parents, advocates, SLPs, and apraxia warriors to join me in the #BeyondWords movement on social media. Together we can create greater awareness for neuro-diverse children and adults. These children may be fighting for their voice, but you know as well as I do, Leslie, no one in this community fights alone! To stay up to date on materials, book tours, and exciting collaborations we have coming up visit my website: DanaLHall.com.
FOR MORE INFORMATION, TO CONNECT WITH DANA HALL VIA SOCIAL MEDIA, OR TO PURCHASE A COPY OF BEYOND WORDS, PLEASE VISIT:
~UPDATED, 2nd Edition of SPEAKING OF APRAXIA available from WOODBINE HOUSE!~
You might consider putting together a gift bundle of both books–BEYOND WORDS for the little your life and SPEAKING OF APRAXIA for the adult caregiver.
ABOUT THE AUTHOR:
Dana Hall received her BA in psychology, summa cum laude, and graduated degree in community agency counseling from Saint Xavier University, Chicago Il. She is a licensed clinical professional counselor for over 15 years in the state of Illinois.
She successfully leverages her clinical work with social justice advocacy as an author, public speaker, and activist for inclusion and trauma-informed practices in education and counseling. She is an accomplished author with two new books which debuted this year: BEYOND WORDS: A Child’s Journey Through Apraxia and WE ALL BELONG: Musings on Inclusion, Acceptance and Kindness. She has been featured in Chicago Parent Magazine, and written articles for Deep Soulful Love and A Chronic Voice. She recently delivered the Keynote address for the national Spondyloarthritis National convention 2020 and has been published in print magazine Spondylitis Plus. She founded the #BeyondWords Movement on social media to create awareness for neurodiverse children and adults. She is married and has three young children who keep her grounded, thankful, and hopeful for a brighter future.
ABOUT YOUR HOST:
Leslie Lindsay is the award-winning author of SPEAKING OF APRAXIA (Woodbine House, 2012) and former Mayo Clinic child/adolescent psychiatric R.N. She is at work on a memoir. Her writing has been published in Pithead Chapel, Common Ground Review, Cleaver Magazine (craft and CNF), The Awakenings Review, The Nervous Breakdown, Ruminate’s The Waking, Brave Voices Literary Magazine, Manifest-Station, and others. Her cover art was featured on Up the Staircase Quarterly in May 2020, other photography in Another Chicago Magazine (ACM) and Brushfire Literature & Arts Journal; poetry in the Coffin Bell Journal, and CNF in Semicolon Literary Magazine and The Family Narrative Project; the 2nd edition of SPEAKING OF APRAXIA will be available this fall. Leslie has been awarded one of the top 1% reviewers on GoodReads and recognized by Jane Friedman as one of the most influential book reviewers. Since 2013, Leslie has interviewed over 700 bestselling and debut authors on her author interview series. Follow her bookstagram posts @leslielindsay1.
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~UPDATED, 2nd Edition of SPEAKING OF APRAXIA available from WOODBINE HOUSE!~
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[Cover and author image, marketing logo courtesy of author and used with permission.]