Gracie's ARFID Journey

15/11/2025

13/11/2025

Most try to argue G is not lvl 3 ASD because she's verbal....

When someone can’t say what they need, that’s a disability.
But when someone CAN articulate their needs, everyone acts like it’s a character flaw.

Two stories. Same struggle. One gets patience, the other gets punished:

❤️A child with “severe” autism covers their ears and screams as the classroom noise rises. Immediately, staff turn the volume down and offer headphones to help.

💙But across the hall, another autistic student—verbal, politely asks if others can please talk more quietly. The response? A reprimand.
“You’re always complaining about something, aren’t you? Too hot, too cold, too loud. Are you ever just content?”

❤️A student with higher support needs walks toward their usual seat to find someone sitting there. The person notices, quickly moves, and playfully teases, “I know where you’re headed!”

💙But when the “mildly” autistic adult approaches and sheepishly points out, “that’s normally where I sit”
the other person responds, “there’s plenty more seats”, before turning back to their conversation.

We have GOT to stop using people’s vocabulary as a measuring stick for how much support they should need.

The more words someone has, the easier it is to miss their pain.
Don’t make that mistake.

Language is JUST an indication of what someone can say, not what they can handle.

15/10/2025

It’s not about learning how to eat — it’s about how the brain and body react to food, textures, smells, or past experiences. It’s about learning how to manage and cope with the anxiety and fear associated with eating.

For some, eating can trigger intense fear of choking, vomiting, or getting sick.
For others, certain textures or smells can cause overwhelming sensory reactions.
And for some, the act of eating just doesn’t interest them the way it does for most people.

When someone with ARFID struggles to eat, it isn’t a choice — and it isn’t a behavior that can be fixed with exposure alone.
It’s a complex interaction between the brain, body, and nervous system that requires understanding, patience, and the right kind of support.

Please remember to always be kind. 💜

10/10/2025

We did some filming today at Atlanta Ronald McDonald House Charities for Seasons of Giving. The new RMH is beautiful and I can't wait for everyone to see it!!!!

We will be posting Amazon wishlist for the house in the upcoming weeks to help stock the houses and get ready for Christmas for the families staying during the holidays.

09/09/2025

05/09/2025

Share it far and wide! 💜

02/09/2025

Happy Birthday Gracie. We are so proud of how far you’ve come this year. Love you kiddo!!!

30/08/2025

Good point from Neurodivergent Rebel

07/08/2025

So when you live with your kid, you don’t see them look healthier like others.

This picture is the school year before treatment, before IOP multidisciplinary feeding program at CHOA and after a year of eating.

We haven’t used our gtube for formula in 1 year.

Prayers she keeps going! We are so proud of you G.

06/08/2025

“They’ll eat when they’re hungry.”

That phrase doesn’t reflect the reality for children with pediatric feeding disorder (PFD) or avoidant/restrictive food intake disorder (ARFID).

For these kids, hunger cues don’t always work the way you’d expect. When eating is hard, scary, or hurts, it’s not picky eating. And no amount of waiting will change that.

Meet Ollie in In My Own Way, a heartfelt children’s book by Feeding Matters, as he navigates life with a feeding disorder. With courage, Ollie helps kids and families feel seen, understood, and celebrated, no matter how they eat.

Get your copy at the Feeding Matters Merch Store at the link in bio.

24/07/2025

Does your child struggle with school avoidance or refusal? You’re not alone. These could be some of the reasons.

School lunches or the lack of availability of preferred foods can create significant challenges for children with ARFID who rely on a narrow range of acceptable foods.

The social pressure of eating with peers, particularly in a school cafeteria setting, can heighten anxiety for those with ARFID, leading to avoidance of social events or school mealtimes altogether.

The busy and potentially overwhelming atmosphere of a school environment, including the cafeteria, can be distressing for children with sensory sensitivities associated with ARFID.

Nutritional deficiencies resulting from limited food intake can lead to low energy levels, affecting concentration and academic performance, further contributing to school difficulties.

Open communication between parents and the school is crucial. Schools can help by making accommodations. Allowing the child to eat in a quieter location if necessary, allowing more time if needed, allowing the child to take more frequent breaks to eat a snack, allowing the child to bring their own food during class parties etc.

Making kids feel safe at school is so important. 🫶

16/07/2025

YALL! We got an IEP!!!!!!!! Took failure after failure but we finally got it. ♥️♥️♥️♥️