r/ARFIDparents

I have an elementary child. She has been sent to the best place around to help with ARFID. A team of speech therapists watch her eat and encourage her that she can do this. We also have a nutritionist and psychologist. It works for them but not at home.

This program is telling us that it’s not working for my child cuz we are enabling her. She has access to sugar and chips at her own discretion so now we have to lock it away and get stricter. I’m okay with that but it’s the tone of we’re doing it wrong therefore the program won’t work.

They say she is not losing weight so she’s getting her calories somewhere. They say we need to follow protocol better otherwise it wont work. Protocol is consequences when she doesn’t eat (i.e. no screens, etc. until she has her bites). She needs more consequences they say in order for her to eat the right foods. Lock up the sugar and don’t let her snack much. Let her go hungry and she will eat; ummmm she’s already going hungry!

It’s true she does gravitate towards chips and sugar (I have other reddit posts about this). But the issue is she is stuck in a pattern of no to food. It’s her brain refusing every time. It’s more than what’s available to her imo.

To me ARFID feels more than her parents not following the rules. I do understand you have to be firm yet gentle but this is not a one and done issue. We have been in the program for about a year. But a year doesn’t seem much to me. This takes time and it’s not easy for her.

This is all SO very sad to me that this is how they are approaching her hardships with food. It’s our fault vs working together and not blaming anyone. I’m upset about it cuz I don’t feel like she is being understood for her genuine struggles. I guess it’s because they get others who leave being successful but I wonder if that’s true??? What is the success rate ? Is my child the outlier? How about those who are neurodiverse? We need to test this success rate long term. I’m glad they have a good success rate and I”m sticking with it of course. But I wish it was more of an understanding approach. Sorry to rant! TIA for your support and encouragemen!

Looking for advice. My 4 year old has ARFID and in the past year and a half has gone dropped from 10 foods to 3-5 foods. He is autistic with strong PDA profile and only speaks in delayed echolalia so I can’t definitively say what causes him to drop a food but from observation I’d say it’s likely a combo of sensory and expectation (like if it’s suddenly different than expected in any way he drops it).

We have never forced or pressured him to eat anything, sometimes I ask but immediately let it go if he refuses and make sure my body language is relaxed about it. I also try to be lowkey in the rare instances that he wants to try something new. However, now that we are down to the bare minimum my anxiety has sky rocketed at the thought of eventually having to have him on feeding tube or g tube if he keeps dropping and not expanding.

I’m having trouble finding a decent ARFID therapist that takes insurance and isn’t behaviorist oriented. He does see an OT and has been exposed to lots of sensory play.

Is there anything I can do that I haven’t already done?