Musings of a Marfan Mom

If you’re friends with me on Facebook, this is the status you may have seen yesterday morning:

“That moment you realized you were supposed to be filming your son’s dinners in their entirety, every night, for the feeding clinic. And feeding clinic is today. And you haven’t done it once. Time to pretend you left the flash drive at home? ‪#‎burnout‬”

Then, a few hours later, you would have seen this:

“Got to feeding clinic 90 min early. Thought the appt was at 2. Oy.”

This week, between M, J, and myself, we have 8 appointments. 4 of those were yesterday. I’m used to having a lot of appointments…that’s pretty much been the norm since M got his autism diagnosis and we were juggling my OBGYN appointments with his therapies.

It’s not that driving all over is so terrible (though I’m fantasizing about quitting feeding therapy because that drive is soooo loooooong). I just feel like I’ve hit a limit in what I can physically manage to do in a day. Every therapist knows that they aren’t the only one in the picture, but I swear they all act like they are the only one giving out homework. Things we’ve been asked/told to do in the past month or two:

– puree all the foods
– don’t puree all the foods, just some foods
– alternate feeding your child bites of the purees
– feed your child all of his meals, all the time
– videotape dinner in its entirety, every night
– have 3 course meals, but serve all the courses together
– practice letter-writing
– practice cutting with scissors
– practice yoga
– start teaching your child to read
– create a daily visual schedule
– create a special bathroom routine
– create a special clean-up routine, with you doing pre-cleanup
– devise a way to distract your child during waking up, preferably with lights or sound that is set on a timer
– keep your child up until 10 pm and give melatonin in 2 intervals, then after a couple weeks shift bedtime forward in 15 min. increments
– supervise all of your children’s play closely
– make sure they’re getting enough time outside to play

Of course, this is on top of the stuff I’m already trying to do. I’m realizing it’s not physically possible to do everything, and I’m trying to prioritize. It’s hard to prioritize among important things. I’m also having a difficult time explaining to therapists that I’m not able to do what they’re asking. I mean, I’m coming to them because one of my kids needs help with x or y and they’re the expert, so why would I be taking my kids there if I’m not going to do what they’re saying, you know?

How do YOU deal with therapy burn out?

Feeding Clinic