To better understand our story, I ask you to envision a 10-year-old not able to communicate if anything bad happened to them or easily share their side if they were accused of something. Sadly, children with special needs are three times more likely to be abused compared to their neurotypical peers. I ask you to also think back to the newborn and early toddler years (if you are a parent) when you had to guess what your child needed or was communicating. Every parent can remember how scary and exhausting this time was for them. Now imagine this same child having the verbal story, called narrative language, of a preschooler, but being judged as a 10-year-old. This is our reality every single day. But, despite these difficulties, we feel such gratitude for being introduced to a narrative language intervention called Story Grammar Marker and to a provider who can deliver this fundamental service and so much more.
Narrative language is the ability to use language to tell a story. Through the use of narrative language, we connect with others and understand what we’ve read, been told, and what we experience in our lives socially. Most importantly, it is how we build relationships and protect ourselves. Children with narrative language deficits are often misunderstood and misjudged. They typically express anxiety or being distraught through their behavior. Unfortunately, if you simply focus on the behavior, you miss the important opportunity to help them build the foundation needed to navigate life through language (their narrative language abilities). You also miss the ability for connection, bolstering attachment, and supporting the child the way they need to be supported.
Our journey with autism has taken us on many different paths leading to the creation of many different stories. We have never believed there was a one size fits all approach on how to work with autistic kids or adults. After receiving our diagnosis when AZ was 3.5 years old, we were encouraged by Kennedy Krieger Institute to seek speech therapy that focused on social pragmatics (the social use of language). We found a local speech provider and began weekly sessions with her. When AZ was five years old, I was introduced to the Social Thinking® Methodology, and we began services with another fantastic provider who had received the full certification and practiced in our area. She began working with AZ weekly on the concepts in Social Thinking® and his ability to use language to engage with others.
In early 2020, both providers, independently, began to express concerns for their qualifications taking AZ as far as they could. In addition, they both recognized AZ continued to have significant weakness in his narrative language abilities. AZ had mastered making simple requests and answering the WH questions (who, what, where, when, how), but he still could not come home and tell us about his day or have conversations back and forth. This posed a significant impairment in his ability to remain safe (he could not tell us if something dangerous happened to him), it impacted his ability to engage in grade level reading comprehension, and negatively affected his ability to be social (remember, stories are how we connect to each other!).
In February 2020, we were referred to a provider who specialized in narrative language intervention and had received certification in an evidence-based program called Story Grammar Marker. We had an assessment and learned, despite AZ being 8.5 years old and having twice weekly speech services since he was 5 years old, his narrative language was that of a preschooler. When we started services, AZ’s language was disjointed; he was unable to tell the story of what was happening even when presented with pictures. When shown a picture he could utter “playing cards” or “that’s AZ’s brother.” It became very clear that we needed a more targeted language intervention than what we had previously been receiving, despite seeing highly skilled providers (traditional speech therapy programs do not specialize in narrative language intervention. This is something a provider must seek out after receiving their degree and licensure).
Because we could not have predicted what would soon happen due to COVID-19, we will forever be thankful we began this crucial service for our son. Despite everything shutting down (including schools), we were able to meet virtually twice weekly with his new provider. She began the Story Grammar Marker program with AZ. Since then, she has taken our son from having utterances to being able to put a story together using the character (who), the setting (where), the actions (did what), and the kickoff (problem/main event). It is important to note, that despite Az's gains, when things are hard, emotions do not yet allow this to be smooth and forthcoming independently. It is hard to put into words what the evolution of his journey has looked like, but anyone who has witnessed it firsthand is astonished. Quickly, those closest to us noticed a major difference and shift in his narrative language and connection with others.
There is nothing that we would not do for our child, and it is extremely hard when your capacity to help your child only goes so far. No matter how much we talked at home, worked to improve conversations, took him to two different speech providers, or read to him, we could not make the gains he has made working with his provider. When I reflect on the early sessions and where he started, I cannot believe the progress he has made. To see the evolution of Az's narrative language journey click: Az's Retell.
Unfortunately, we did not have a provider in our area who could deliver this crucial service for AZ and was in network with our insurance, so we began a 2.5 year long journey seeking in-network coverage for this intervention. Otherwise, it was expensive and completely out of pocket for us! This journey started with a request for services to be covered as INN, followed by a two-level appeal process, and a request for an Independent Review Organization (IRO). During this time, our insurance sent us a list of providers who worked in nursing homes, early intervention (which only covers up to age 3), and a provider in another state who was not even in network with our insurance, nor did she provide Story Grammar Marker. Our insurance asserted these were qualified providers, and because Mark and I adamantly disagreed, we eventually filed a lawsuit against our insurance company in federal court to have our story heard. To learn more about this journey, please click on the following link: Zucca Lawsuit
We still have a long way to go with AZ’s narrative language development, but we finally know how to help him. We understand why he has certain behaviors at times and why he becomes dysregulated in the home or at school. AZ had a recent situation at school where he was being bullied for several weeks and began to exhibit behaviors at home and at school. Although it took some prodding, he was able to tell the adults the story of what was happening with the tools from Story Grammar Marker, and thankfully, be protected moving forward.
No other intervention would be able to advance him the way Story Grammar Marker and his provider has. No matter how many more barriers AZ, or our family encounter, we know we have built the crucial foundation for him to improve his narrative language capabilities and to have his voice and story heard.
We felt compelled to share our story so others may feel affirmed that when you know your child is entitled to a vital service, it is important not to let anyone silence you. Your voice and story deserve to be told.
To learn more about Story Grammar Marker please visit the following website:
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