Special Needs Advocacy

ADVOCATING FOR YOUR CHILD WITH SPECIAL NEEDS

A mother of three explains how she simplifies daily life to conquer chaos.

By LEAH WITMAN MOORE

refer to my family as a house of loving chaos. It’s not because my three children are trying to purposefully wreak havoc, it’s because each of them has very specific needs that require attention, patience and pre-planning. And unless this is thoughtfully managed, they are prone to crash together. This is not unlike my experience teaching high school for the last 18 years. Teachers rely on tools like differentiation to help each child be celebrated while safely being a part of a larger community.

My oldest daughter Jordan has a rare disability, cri du chat, which causes significant global delays in her cognitive and physical development. We have spent the last 11 years advocating for her services, fostering her social relationships and fighting for more opportunities that surpass kindness and move toward inclusion. Austin, my middle child, has significant learning and attention struggles and requires a thoughtful schedule to work against his

Idysregulation. And Oliver, my youngest by 24 minutes, has a rare autoimmune disease and is an advanced reader and writer for his age. This is a recipe for a house with a lot of doctor’s appointments, visual calendars and many surfaces covered with to-do lists. What I want when I advocate for each of my children is what every parent wants, regardless of ability: a safe space to be seen and heard. Advocating for my children can become very overwhelming, especially in the whirlwind of an impending school year, so to simplify the process, I refer to the three S’s: structure, scripts and stories. STRUCTURE: This is the foundation of the school day. Without a plan in place, my children will be dysregulated for most of the day and it will interfere with their learning. We have learned that without a schema of what is going to happen, our children cannot visualize their next steps. A very simple process is to make visual calendars and social stories.

CLOCKWISE FROM TOP LEFT: JORDAN, 5, SHOWS OFF HER FASHIONISTA SIDE; OLIVER, AUSTIN AND JORDAN HAVE A BLAST ON A WATER SLIDE; THE MOORE KIDS; JORDAN AND LEAH; AND THE KIDS DURING AN ATHOME OT SESSION.

We start this from the moment they wake up with visual calendars of what is needed to prepare for the day. However, this work begins long before the school year starts, by creating social stories about what they will experience in their upcoming year. When possible, we have photos of the school bus, school building or even the teacher. For example, my son is terrified of getting on the school bus so we created a laminated sheet of paper with step-by-step instructions on what would happen as he moved through the process. It was then transferred to his teacher to continue the transition throughout the day. After each step, he would cross off what he accomplished. Within a week, he happily ran to the bus and no longer needed his storyboard.

SCRIPTS: Many children with cognitive disabilities will become more anxious in unfamiliar situations. For my daughter, this means she will move through a circular conversation asking her question of the month (currently: “Who is your celebrity crush?”) This impedes her ability to settle into the classroom or get to know new classmates. As a result, we help our children communicate with their new teachers with a script. This means we write a “Hello, I am…” letter to each of their teachers to let them know what topics soothe them or what behaviors are markers for their stress. We tell Austin’s teacher that we use the language “calm body” at home. We tell Oliver’s teacher the exact protocol for when he gets a nosebleed. We tell Jordan’s teachers that, unless they redirect her, she will spend the entire day talking about Harry Styles.

STORIES: As a parent of children with differing needs, I don’t just want them to be included in a classroom, I want true inclusion. This is aided by celebrating who they are and what their strengths are. When I work with teachers, I ask them to take an audit of the stories they are presenting in their classrooms. Whose voices are being celebrated? Whose voices are not included? In this instance, what are the messages about disabilities that are perpetuated in the space? What opportunities are there for interaction with neurotypical peers? Classrooms should be filled with stories where children see themselves reflected and stories that provide insight into other lives and experiences. They deserve a classroom where they are given choice and voice, even if nonverbal, to make decisions and have agency to determine next steps in their learning.

The past few years have put a lot of stress on teachers and parents. My experience as both a mother and teacher has prepared me for the unscripted moments that challenge my composure and sanity. But when I think about my survival tactics, regardless of who is in front of me, the same is true. What does this child need at this moment? What can I do to give them agency so they can feel seen and heard? How can I partner with the other caregivers in their life to remember I don’t have to do any of this alone?

I don’t want to quiet the loving chaos of my beautiful children. I just need to advocate for them to help the rest of the people in their lives learn how to look beyond the whirlwind and see each of them as individuals.

—Leah Witman Moore is from Roxbury. She’s the author of the memoir, Loving You Big: One Family Embracing the Unexpected.