By Katie Maki (adapted from an Around the Dinner Table Facebook post April 2020)
I was thinking about how this pandemic has basically forced families of eating disorder kids to do what my family was pretty much forced to do because of our insanely rural location in 2010-2011. We were eight hours from any Family-Based Treatment providers. People ask me “how we did it on our own.”
we had no team-we were the team
Here are the basics:
- we turned our house into an inpatient setting
- bathroom door open
- I sat on a stool outside of the shower
- I made her talk to me while in shower
- I slept with her in the same bed at night. I had a jingle bell tied to my doorknob.
- 3 meals and 3 snacks all fully supervised
- we threw out the exchange sheets and went to my “ grandma’s farmhands” plan. We fed my kid like my grandma fed the grown men who worked on their huge farm in 1950. Full-fat dairy, pies, potatoes, stews, eggs, bread, cheese, etc.
- stopped all unnecessary exertion (no exercise)
- used shot glass of Ensure as a replacement after 3 warnings
- tackled some OCD type behaviors using our own exposure therapy
- she was never left alone (she was 10.5).
- ex1) Got physically between her and heat vents so she could not tap her big toe in a pattern ED demanded etc., breathed through it with her, got her through the panic. Used “ in your face technique” face to face eye contact and breathing while gently cupping her face in my hands) (I’m a doula- my skills came in handy).
- Ex2) got a kitten. She could only see the kitten if she went up the stairs normally without her rituals. Took several days of dad holding her torso while I moved her legs one at a time. Then day 3 or 4 she asked if she could run up the stairs to see the kitten as long as it was one foot at a time etc. We said yes. She did it after half an hour of having a conversation with her ED out loud. (never did that behavior again). We chose specific behaviors to tackle at a time.
- threw all parenting “ rules” out of the window. My other two kids were allowed to eat in front of TV in another room on another floor of our house. We didn’t do a lot of family meals until ED was a lot more tolerable. ( that was HARD on my 12-year old who ended up having to deal with her 6-year-old brother a lot when dad was at work). But you do the best you can. Lots of video games were played, movies were watched, etc. You just do your best.
- we did blind weights at home. A few times a week we gave no warning. Woke her up in am, asked her to pee ( open door), get on scale backward in T-shirt and undies). I did not respond to questions. Just a simple “ thank you”.
- kept adjusting calories for a minimum 2-pound a week gain. Had to keep increasing over a few months to 6000 when growth/puberty kicked into high gear.
- we did have a family doc who we basically asked to do and say what we needed her to. On occasion, we took D in for a check-in (so we had some documentation (and would ask for blind weights and for the doctor to say “ trust mom and dad”.
- we had an AWESOME therapist from 10 hours away who we did some Skype sessions with but after about three it was obvious it was a waste of time because our daughter needed food and weight gain and the therapy was useless. The therapist agreed. We could contact her when we wanted/needed to. The few times I did she would just help us by validating what we were doing. If you have virtual therapy right now and it helps you- that is AWESOME!
- my entire life 24/7 was shopping, cooking, sitting at the table, distraction. And tackling behaviors. And trying to keep my other two kids ok and attend to their needs. My husband was awesome when home but also worked 30 hours at a crack, 2 hours away, 8 times a month (and day 2 when he got home he had to sleep). So he was pretty much gone half of the month.
It was hard as hell. It was exhausting. I had Ensure stains on the ceiling for years, spaghetti in my hair, broken dishes, fingernail marks in my arms. But it worked. 30 pounds and about 4-6 months later almost all of the most intense behaviors were gone. Still, of course, worked hard for many more years to combat growth/puberty/ and get to full recovery, but those first six months were the most intensive..in some ways “easier” than the following three years because we “ knew” what we had to do.
I’m not “promoting” going rogue. I know many of you have really great teams and are devastated by what’s happened due to COVID ……but I just want you to know that having to do this largely at home is possible…is hardcore…. and is truly in keeping with what the core of FBT is.
Kind of like Dorothy at the end of the Wizard of Oz: she had the power in those ruby slippers the whole time.
I’m so in awe of how hard all of you in the trenches are working and your ingenuity in all of the ways you’re dealing with this quarantine. I’m sending you all of my love and supportive vibes.
Wow, I am in awe! What a fighter…That is how it’s done! We did re-feeding on our own without a team as well, with our adult daughter. But we never had the intense OCD behaviours to deal with that you did. Once your daughter is fully healed you need to write a book, seriously.👍
She has been for several years❤️I’m hoping to make that happen one day!
Such wonderful inspiration and support for carers, particularly those feeling lost and unaided.
You are a star Katie 🤗💜
Thank you for your openness and honesty.
what an extraordinary story. i think it should be a film.
so much inspiration and so many ideas we could really use in our house even though we are grateful to have a team we meet on zoom.