As parents of children with medical complexities and special needs, we parent as clinicians. We are responsible for care and carryover that often resembles a therapeutic and medical model.

When Gia was a toddler, I ran our home like one big therapy session. About six months into it, she was miserable and so was I. This approach wasn’t working for either of us. So, I ditched it and committed to simply being Gia’s mom. I leaned into what feels natural to me, a method I refer to as, “instinctual parenting”.

When it came to language and regulation, as a former dancer, I used movement and dance to encourage verbalization, soothe, and bond with my daughter.

And when Gia didn’t respond to intensive therapies for ARFID and she began her journey of being tube fed, I leaned into what felt natural to me once more.

I put on a show. Literally.

A supportive baking show

Welcome to Baking with the Besties, where fashion meets inclusive baking. A baking show that I have been putting on for my daughter for several years now.

The planning process is nothing short of involved.

Each month’s theme is carefully considered. In addition, there’s the recipe which needs to be gluten and dairy free and relevant to the theme. I consider the sensory profile of each ingredient that we’re using and handling. Sensory supports that are always accessible to Gia are a bowl of warm water and dry towel when she needs relief from a tactile sensation and headphones for the times we use the mixer.

And there’s the fashion, which is not superficial.

Again, this approach is instinctual to me. To me, fashion is a form of self-expression and I am incredibly passionate about accessible and adaptive fashion, subsequently. Imagine my surprise when Gia, 4 years old at the time, refused to change out of a Frozen t-shirt for three months. I even had to bathe her in it. Through this experience, I learned that Gia’s insistence on sameness was her go-to, functional way to manage her anxiety.

Therefore, I use fashion as a tool to encourage cognitive flexibility in Gia, I call this “Flexibility through fashion”. She is able to transition in and out of outfits and costumes that we wear with joy, excitement, and interest. In addition, I design and create custom chef hats. Nowadays, we have more of these glamorous and over the top chef hats than I can count. I’m always surprised as to how beautiful they come out and just cannot wait to show Gia the finished product that I make specifically for her. It doesn’t end there. Sometimes the monthly theme calls for us to wear wigs. Which challenges her sensory assimilation in a super fun, non-threatening way.

Bringing awareness and acceptance

When it comes to exploring the food that we’re handling, Gia is never expected or pressured to eat what we make. Nearly two years in, during our first few episodes Gia was repulsed by the smell of flour. Her olfactory is super sensitive and at that time, was working overtime as her body was healing from nutritional deficiencies.

When disinterest sets in, it isn’t uncommon for me to use Gia’s special interests to encourage her to interact and engage. Small figurines, lined up in batter, make regular appearances in our episodes.

We research and learn the person or the topic that we’re celebrating with food that month. Most importantly, we celebrate one another. And enjoy the messes we make along the way. There’s laughing, crying, and stimming. We bring awareness to feeding differences and acceptance to neurological differences.

Our therapy room is our kitchen and the work is done at our baking benches. Gia has her own drawers filled with her own cook books, measuring cups and plastic safe cutlery. Another strategy and invitation for a person that has never used cutlery to eat … she’s 8 years old. We have cake stands that spin, she’s a big fan of that. As a visual learner and hyperlexic, Gia loves and thrives with visuals, so we love a good recipe in print. And the cook book stand often doubles as a holder for her transitional book.

Supporting Gia

Gia has one safe food. And one safe beverage. Brand specific and presented in only a few variations, with a ritual. Gia moved from an NG to a more long term solution to meet her nutritional needs of a Mic-key button.

There’s no shame in our game. I’m just a mom baking with her daughter. Who happens to be neurodivergent and tube fed.

Gia is learning that food is more than what we put in our mouths. It brings people together, oftentimes the people we love most. We are building happy memories and learning food is a gift to give. Food represents mealtimes where everyone has a place at the table, regardless of what’s on or not on our plates. Essentially, she is building positive neuro associations with food and eating.

BWTB’s truly is more than a baking show we record from the comfort of our ASD friendly kitchen. Oftentimes laughing before we even hit the record button, It has helped to reduce the stress and pressure around eating and mealtime for us both. A natural modality, I have used my creativity to support Gia in her recovery and help to alleviate caregiver stress, simultaneously.

A journey beyond the kitchen

A part of my journey as a caregiver and food partner to my daughter has been letting go of expectations and standards. Eating and pediatric feeding disorders, different abilities, and medical complexities can be disempowering. I am not minimizing the worry or overwhelm that we justifiably experience as parents and caregivers. Gia has never put a morsel of meat in her mouth. She would be unable to safely masticate a chip or fibrous, non-pureed fruit or vegetable, at this time. But Gia is on her own time-line. And I am finally at peace with that. I felt so much urgency at the start of our journey. A familiar pang I felt in regard to her developing language and learning to toilet. Now, I understand and have embraced that we are not in race. My child is building new pathways, developing and strengthening her sensory muscles, working through debilitating anxiety and cognitive flexibility. And the whole while, I never take off my mom hat. Or my mom chef hat, that is.

Recovery is a journey. And I’m here for it. I am more than my daughter’s food partner, I am her partner in life.

This is Gia’s journey with food, only it’s more of a screenplay than a story and the last Act has yet to be written.

Stay tuned.

Christina Van Ditto is a PFD and ARFID caregiver, advocate, writer and public speaker.