By Sabena D'souza (Himani Hitendra's mother)
Thank you to the PRC-Saltillo team for giving me this opportunity to write a blog about our library program for AAC users called “Storytime with AAC”.
“Storytime with AAC” is a library-based Storytime program designed for AAC users, especially emergent communicators (open to all communicators) and is based on the principles of Shared Reading. It is also designed to help support caregivers in modelling core words on their child’s AAC device. This program is co-founded by Ms. Polina Rubanova, Children’s Services Librarian, Union City library, Dr. Elena Dukhovny, Associate Professor and Department Chair of Speech, Language and Hearing Sciences Department of California State University, East Bay, Himani Hitendra, teen AAC user and PRC Ambassador and myself, Sabena D’souza, Himani’s mom.
Himani has already shared about her volunteer role in this program in her blog post, and as her mom and Program Coordinator of ‘Storytime with AAC’, I’d like to share my experiences co-running this program for the last 2 years. I’d first like to give you a background on how we decided to start this program. Himani was the inspiration in starting this program. Her love for books gave us the idea to start a Storytime for children who use AAC. When Himani was a child, I did not take her to our local library (till she turned 9) even though we read many books at home, because I knew Himani could not attend to a Storytime like a neurotypical child, and I was afraid that she would not be welcomed. I want to clarify here that we never faced any discrimination at any library. I just was afraid because to me library meant a quiet place and I did not feel comfortable taking Himani. She loves to stim and move around and library just did not seem like an accessible place to meet her needs. It was not until years later, when Himani was around 9-10 years old that I started taking her to the Union City library where my dear friend Sameena (also a parent of a child with a disability) was running disability friendly programs in collaboration with Polina in art, fine motor, music for our kids. That’s how I first met Polina, Children’s Services Librarian. Himani really enjoyed these programs and I was so happy that Himani was able to go to the library and enjoy activities like other kids her age.
However, unfortunately during the pandemic all the programs stopped. When the pandemic was over and things were returning back to normal, the disability friendly programs did not resume due to lack of volunteers and other reasons. Himani and I really missed going to the library and that’s when the thought of doing something for our kids came to my mind. Initially I thought of organizing an AAC Awareness Day in the library in October for AAC Awareness Month. I approached Polina with this idea. In the past, I was an active parent volunteer in Himani’s elementary school. I organized Autism
Awareness Month and AAC Awareness Month in her school, gave presentations and organized sports and other events. So, I thought maybe we should organize an AAC Awareness event at the library in the month of October. I also thought adding a ‘Storytime’ for AAC users would be a good idea. During the pandemic, Himani and I enjoyed watching the Facebook live book reading by Amanda Hartmann (of Assistiveware) called AAC, Literacy and Fun. Amanda would model core words while reading a storybook and make the Storytime fun and interactive with her comments and questions. Around the same time, PRC released their Literacy Planner that had a wonderful collection of storybook and fun activities for each month. We loved borrowing and reading books listed in the PRC planner from our local library. These resources really inspired us to think about how we could do a Storytime for AAC users in person.
Now this idea came to us sometime in November 2022. By this time, Himani was in middle school and had transitioned from an in-person public school to an online school. Himani and I would visit the library weekly to borrow books. We started interacting with Polina regularly, sharing ideas on how we could run a Storytime in October. Himani showed Polina how she uses her AAC. She showed her how she interacts during book reading, comments, and responds, while I modeled core words on an AAC to help Polina learn about modeling while reading a book. All this helped Polina understand how to interact with an AAC user and how AAC works. Then we decided to reach out to Elena sometime in Jan 2023. I knew Elena, as her SLP graduate students ran a ConversAACion group for AAC users online during the pandemic that was supervised by Elena. Himani was a part of it for more than 2 years and enjoyed it very much as she got a chance to socialize with other AAC users and play fun games! Our talks with Elena initially revolved around how we would organize an AAC Awareness Day at the library in October. Elena loved the idea of doing a Storytime for AAC users! She immediately suggested that she would like her SLP and SPED graduate students of the Project Listen with AAC grant (https://www.csueastbay.edu/slhs/listen.html) to be involved as readers. Now that the conversation was rolling and we also had a plan in place (I had a lot of Shared Reading materials readily available), I thought why wait till October. Hence, I suggested why don’t we start the Storytime earlier as a regular library program instead of just doing this as a one-time event in October. Polina and Elena agreed that this could be a good trial for understanding how the Storytime would work and we decided to give it a try. Elena initially trained 2 of her students (she now continues to train more students to be readers) to be readers for our program, while I prepared a list of books we could read, and shared resources with Polina for Storytime like the PRC Literacy Planner, Amanda Hartmann’s videos, Shared Reading module from Project Core and sample of Core Words Sheets from AAC Language Lab to name a few. Polina worked on the logistics of how to create registration, room arrangement, props for Storybook, accommodations (sensory corner/snack corner) etc. I think it was wonderful how everything fell in place.
That’s how ‘Storytime with AAC’ (a wonderful name suggested by Elena) was born! We launched our pilot program in April 2023 (6 months before our initial planned date!). The first book we read was ‘Be Brave, Little Penguin’. A book I picked from the 2022 PRC literacy planner because it has a beautiful moral to the story and Himani loves penguins! We decided to run ‘Storytime with AAC’ as a bi-monthly (twice a month) program. We had 5 AAC users / families participate. I contacted some families I knew personally who kids use AAC and I posted in a couple of parent support groups on Facebook. We wanted to initially keep the group small in order to see how it goes and if we need to make any changes. Since we were not aware of any other library in the country doing this kind of program, we did not have anything to refer to or replicate. We were hoping that what we designed and planned worked and it did! Out of the 5 families, 4 families came consistently for a period of 2 months and seeing the response we officially opened it to all families in June 2023. I started promoting it widely mostly through Facebook support groups for parents of children with disabilities. I also reached out to AAC Specialists, SLPs, SPED teachers of our local school districts and local disability advocacy organizations to share about our program. We received a great response with families attending from all over bay area. On an average we now have 10-12 families attending our program bi-monthly. In Sep 2023, we hosted our first Guest Author Event with Tiffany Hammond (https://www.fidgetsandfries.co/) a passionate disability rights advocate, an autistic mom of 2 autistic teenage boys, one of whom is non-speaking and uses AAC and based on whom she wrote her NY times #1 bestselling book ‘A Day With No Words’. We had over 90 people in attendance for this event!
We also celebrated AAC Awareness Month in October 2023 by putting up posters all over the library, displaying books in which characters use AAC in the main display window of the library, and organizing an AAC vendor booth. Also, in honor of AAC Awareness Month we had ‘Storytime with AAC’ every Saturday (4 Storytimes in a month!). Also, 3 out of the 4 books we selected to read for October had characters who use AAC (A Day with No Words, Sabita finds her Voice and Dancing with Daddy). Every Saturday in October after Storytime we did something special. One Saturday we showed the documentary ‘This Is Not About Me’, the story of AAC user and advocate Jordyn Zimmerman. The second Saturday, Himani gave a presentation sharing her experiences as a full time AAC user. The third Saturday we held a vendor booth of AAC companies that included PRC, Tobii Dynavox, CRIL, which is our local AT lending organization and Family Resource Navigators, a disability advocacy organization. I know of 3 families who received their AAC devices in the following months thanks to connecting with organizations in our vendor booth! The fourth Saturday we celebrated Halloween; the kids wore costumes and we had carnival games and sensory activities for them to enjoy! Each week, we did free book giveaways for our participants/families (all of the books we gave away had characters who use AAC). Thanks to Kate Ahern, Himani’s amazing teacher for her compilation of books in which characters use AAC that was a great resource/reference for us! (https://docs.google.com/document/d/11Tf23wfHVwgUYeeTlkMINMqDSmBRuO5OvURgGoW6-OM/edit?tab=t.0). So, while our initial plan was organizing a day of AAC Awareness, we actually ended up celebrating the whole month!!
Similarly, we celebrated Autism Acceptance Month in April 2024 by having a Storytime each Saturday. We read books that have autistic/neurodivergent characters (The Girl Who Thought in Pictures, My Brother Otto and the Birthday Party, Remarkable Remy, Listen Learn and Grow). We did a window display and played fun games after each Storytime. We also did free books giveaways (of books with neurodivergent characters) for all our participants/families.
In September 2024, we did something special, (in addition to our regular program) we organized a Virtual Drama Club for our regular participants led by renowned special education teacher, consultant and author Ms. Kate Ahern (https://www.aacvoices.org/). This Virtual Drama Club ran for 5 consecutive Saturdays and helped AAC users build their creativity, self-expression, language and communication skills. The icing on the cake was the kids performing in a play virtually in the final week! This program was very much appreciated by the participants, many of whom got to perform for the first time!
In October 2024, we again celebrated AAC Awareness Month with great fanfare! This time we had more organizations participate in our vendor booth. We hope to make this our annual tradition!
This April 2025, we complete 2 years of our program. We will be celebrating Autism Acceptance Month by reading the book ‘Ava, the Autism Advocate on April 12th. We have also planned an Online Author Storytime with Jennifer McGee on April 19th. Jennifer is an artist, author, speaker and a special needs parent of a non-speaking autistic boy Isahiah, who inspired her to write the book ‘Izzy Can’t Talk’. Her son Isahiah uses TouchChat to communicate. Polina and I have been interacting with her for this Author event and we have learned of the amazing advocacy work she has been doing in her community through her art and literature publishing company Inclusive Art House, (https://inclusivearthouse.com/). We are very excited for our first online event!
Personally, for me and I’m sure I can say that for Himani too, every ‘Storytime with AAC’ program is a celebration, and a get together of AAC users. A community where
friendships are formed and children get to enjoy Storytime at a pace that is comfortable for them, giving them opportunities to engage and communicate in a relaxed and fun environment without any expectations. Prior to this, Himani and other AAC users only occasionally or coincidentally got to meet or interact with each other, out in the community. Now they meet regularly! Out of the 12 families on average who attend our program, 8-9 families attend consistently. This really brings me so much joy! We have seen kids as well as parents truly embrace AAC and progress in their AAC journey. I know many families who first came to our program not knowing how to model to their child or how to get their child to use their AAC and now these same families feel empowered and model so well. The children are also learning to use their AAC independently to communicate! We celebrate holidays like Halloween, Diwali, Christmas, Chinese New Year, Purim, etc. reading books, playing games, doing crafts and enjoying treats!
As you can see, running a program like ‘Storytime with AAC’ is a team effort! Having a librarian like Polina who believes in creating accessible programs for children with disabilities and a professional like Elena who believes in my abilities as a parent, and gives me the liberty to be creative with the program implementation has contributed to its success. I am truly blessed! I don’t think I can do justice to Polina’s and Elena’s role in this article. I have shared a link to our presentation at the end of this article, and I hope you will take the time to watch it as they share about their role in detail! A special thanks to the amazing SLP and SPED graduate students of California State University, East Bay who serve as readers for our program. So far 9 graduate students from the ‘Listen With AAC’ grant have been readers in our program. I am grateful for their role and effort in making this program a success! It is also rewarding to see that our program gives them the opportunity to teach and interact with AAC users, which I’m sure will help them greatly in their career!
This program also inspired us to start another ‘Storytime with AAC’ (for ages 7 & under) at Fremont library (neighboring city) in Dec 2024. This program is run once a month and keeping the kids age in mind we run it a bit differently. We read simpler books with repetitive core words. We also use multi-modal communication while modeling core words (AAC device, Core Board Poster, sign language, and gestures). Fremont library also has a bigger room for Storytime so we have ample space for little kids to run around while they enjoy listening to a story. We have a carpet area with wobble cushion seats, sensory balls, access to fidgets etc. for the kids. We have Core Board Posters (TouchChat, LAMP WFL, TD Snap and Proloquo2Go) all over the walls. We also offer core boards to families. Though more than 90% of the participants who attend this program have their own AAC devices, core boards have been very helpful for families who don’t yet have AAC and are exploring AAC options. Everyone feels included since we make sure to select only Core Words that are on a Core board. This program also has been well received by the community, with over 15 families attending our last Storytime in March.
Also, inspired by our program, Ms. Karen Patterson, AAC Specialist (https://www.something-to-say.com/), has collaborated with San Jose library to start ‘Storytime with AAC’ at Almaden Branch Library. They will be launching on June 14th. It will be a monthly program. Himani and I are excited to attend their launch!
I’m also truly honored to share that I was recently awarded the California Speech Language Hearing Association Distinguished Consumer Award in March 2025. The Award honors consumers of speech language pathology and/or audiology services who have confronted and surmounted the many obstacles associated with speech/language and/or hearing challenges. It was a special and memorable evening for me, with both Elena and Polina attending the award ceremony along with me and my family at the CSHA Convergence 2025 in Pasadena. I’m so grateful for their continuous support!
Our team has presented about how we run our “Storytime with AAC’ program thrice. We presented in-person at the CSHA Convergence 2024 in San Franciso in March. We presented online at AAC in the Cloud 2024 in June. Recently, we presented online at the ISAAC Israel Conference 2025 in February.
If what I’ve shared inspires you to start ‘Storytime with AAC’ at your local library, I would highly encourage you to watch our presentation we gave at AAC in the Cloud 2024 titled ‘Establishing a library-based story book reading program for AAC users and families: a tutorial’. https://www.youtube.com/live/ijiSXPuxDhI?si=QqbD7lkAwiYbf7jk. In this presentation we have explained in detail how we run our program and what steps you can take to start a similar program at your local library. We have also offered a lot of resources for free. Like Core Words Sheets (Proloquo2Go and TouchChat) of all the books we have read till date, flyers/handouts of our program and other supplementary handouts on AAC, including links to resources that I’ve mentioned in this article and websites that inspired us to start our program. Here is the link to the resources https://drive.google.com/drive/folders/1meYbDVmNL0hp2xoGxSyTqBdow4i9WO3n. Feel free to reach out if required. My email address is sabena.dsouza@gmail.com. If you would like to stay updated on our programs, feel free to follow ‘Union City library’ on Facebook where we provide regular updates of all our ‘Storytime with AAC’ programs https://www.facebook.com/UnionCityLibrary/posts/pfbid0XLoh8X1X8knkoLPCrhMNVrPyn1KoaU7XaVZ3AWo8PKmjkuSh49cGU6r8u5gJrMEQl. We really hope more libraries in the country can host similar programs.
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