Six months after Mary and her husband George moved overseas, Leilah was born. Overjoyed with happiness, they knew little about what the future held for their family.
As an infant, Leilah didn’t track objects with her eyes or roll over onto her belly. She wasn’t sleeping through the night, gaining weight, supporting her own head, or grasping for her toys.
She took in the world but didn’t engage with it in the ways that new parents anticipate.
Today, at nine years old, Leilah is part of the furthering of science. After years of dedicated work on the part of neurogenic researchers, Leilah’s Neurodevelopmental disorder, ARF-1, is being identified, recognized, and understood.
Mary, George, and their youngest daughter, have learned Leilah’s language. They’ve filled their lives with ice cream, applesauce pouches, shadow puppets, trips to the carwash, light up toys, horseback riding, music, and laughter: a few of Leilah’s favorite things.
Their lives differ from most. There’s more planning, preparation, and patience involved, but they’ve gotten used to it now. They stand by Leilah’s side everyday, and find gratitude in the miracle that is their daughter.
What is Developmental Disabilities Awareness Month (DDAM)?
March is Developmental Disabilities Awareness Month (DDAM): a month dedicated to celebrating the many ways in which people with and without developmental disabilities come together to form strong, connected, and diverse communities.
What does Developmental Disabilities Awareness Month mean for HBH?
At HBH, we aim to raise awareness in our community about developmental disabilities year round. We believe that celebrating the abilities and contributions of people with developmental disabilities can only serve to enrich our community.
We also believe that families of people with developmental disabilities deserve recognition for their caring commitment, and ongoing support for their loved one with a developmental disability.
To understand the unique experiences of individuals with developmental disabilities and their family member’s, we sat down with a parent of a child with a developmental disability and listened to their story.
The following is not a case example, but a story from a real individual resulting from a candid conversation. The names in the story have been changed to protect everyone’s privacy.
The Journey to Leilah’s Diagnosis
At 18 months old, Mary and George started their first rounds of CT’s scans, MRI’s, bloodwork, and tests on Leilah.
At 3 years old, they received genetic testing results from their geneticist noting an “unknown variant” on one of Leilah’s genes.
The geneticists didn’t know what it meant, and they couldn’t identify if it was the cause of Leilah’s developmental delays.
Through chance, Mary and George were connected with a neurogenetic researcher interested in the same gene. They shared Leilah’s information and allowed scientists to make sense of their daughter.
After six years of dedicated research on the part of the neurogeneticist and his team, they published a paper on Leilah.
Tears filled Mary’s eyes; she knew as though their daughter was part of the furthering of science.
The Characteristics of ARF-1 Unique to Leilah
Leilah, now nine years old, is nonverbal. She’s never said mama, dada, or blown raspberries. She makes sing-songy songs. She laughs, she squeals, she giggles, and she grunts.
Her augmentative and alternative communication (AAC) device allows her to communicate “yes” and “no” answers, and she taps on what she wants to eat from her food page.
Though unsteady on her feet, Leilah’s physical therapist helps her work on her steps. Ankle braces support her low muscle tone.
Therapeutic horseback riding, one of Leilah’s favorite activities, helps with her muscle tone, balance, and coordination.
Leilah can move one finger across her ipad quickly, and she loves to watch YouTube Kids.
The thinning of her corpus callosum, which is the bundle of fibers that connects the right and left side of the brain, lends her a very low attention span. She likes to keep life interesting: going to the car wash, grocery store, post office, and beach.
She doesn’t like drinking liquids, and prefers purees and several packages of applesauce throughout the day.
She sleeps very little, and when she’s awake in the early morning, she’s ready for the day.
Leilah has social delays, but no fear of touching people. She makes friends with everyone she encounters, and draws them close with love and affection. She’s a very happy nine year old.
Forming an ARF-1 Community
Mary and her husband started a Facebook group, called parents of children with ARF-1.
Over the years, the number of members has grown and Mary has connected with an incredibly diverse group of individuals, and parents of children with ARF-1.
In their close knit corner of the internet, Mary has found support, guidance, and understanding that she can’t find elsewhere. She’s learned a great deal about parenting Leilah, and offers new parents her strategies and perspectives.
The Challenges Along the Way
Mary and George still experience emotional ups and downs.
Every trip out of the house, whether it’s to the grocery store or Disney World, requires careful planning and preparation around Leilah’s routines. They can’t take the stairs, or leave the house without forgetting Leilah’s wheelchair stroller, purees, and diaper bag.
Despite the challenges, they have grown to accept, celebrate, and love their new normal.
Leilah has taught her parents how to better understand and support people with disabilities. They’ve become more aware of, and tuned into the injustices that others struggle with on a daily basis.
Mary’s feelings of anxiety about Leilah’s future forces her to take care of herself. She knows that she has to live forever for her daughter.
The Joy of Being Leilah’s Mom
The unplanned journey of mothering a child with a developmental disability has brought Mary and her family an unconditional amount of love.
They have grown together in ways that they could not foresee. They have practiced patience, and witnessed magic in ways that they might have otherwise been too busy noticing.
Like all parents, they are still figuring it out; but they are celebrating the uniqueness of their lives.
Working with a Mental Health Therapist
Looking back at her earlier experiences, Mary sees the value in working with a mental health therapist.
For many parents, this will be their first experience with a disability, and it takes time to process the journey. Parents do not need to approach this experience alone.
Our trained mental health professionals at HBH are here to support you through this process. Parents can find a safe space to express their feelings and ask questions. Our therapists can offer parents effective coping skills to manage their stress and regulate their emotions. They can provide parents with necessary resources to assist their child’s development.
Parents can learn how to identify, express, and meet their own needs. In turn, their energy can be properly channeled toward understanding their child’s disability, and participating in the intervention process.
If you’re an individual with a developmental disability, or a family member of an individual with a developmental disability, we’re here for you.
If you’re interested in scheduling an appointment with one of our mental health professionals, please contact us today at (413) 343-4357.