I saw this post another long time Autism BioMed Mama’s facebook feed yesterday morning and promptly thanked her for inspiring a blog post.
I have a friend who is struggling today with having to turn down a family party due to food/gut issues with her children, and struggling to reconcile family/friends and food. I posted this on her page, but I wanted to share again here, just as another autism awareness FYI. For those of you who deal with food allergies or any kind of diet outside of the SAD (Standard American Diet) diet most people consume, you'll relate all too well. For those of you who are on the outside of it, I don't know if this helps to explain one of the bigger difficulties we face or not. Maybe it will. I'm betting this, moreso than the difficulties of the diets themselves, is one of the biggest reasons many people aren't able to stick with it until they are well again.
I think this one thing, in a nutshell, is the hardest part about the diets we do...whichever diet, not choosing the foods themselves, not anything else. The figuring out what to eat is the easy part in this, which says a lot. So much of food is wrapped up in social functioning, love, families, connectedness, whatever, that it feels like you're having to make a choice to cut off from all of those good things, the emotional component that typically come with sharing a meal, just for the sake of trying to physically stabilize/not get sicker, etc. It shouldn't have to be a choice between one or the other, as both are equally important. It isolates us, and it shouldn't, but it does. It's the one thing most people who go through this are aware of, but rarely talk about.
Dominic has been eating Gluten, Dairy and Soy free as well as artificial colors / flavors / preservatives free for over 5 years now. Right away, we noticed a huge shift in our social life, but it took time to figure out why. For a long time I thought that it was because Dominic’s blatent regression from neurotypical to disabled made people – particularly parents of kids his age who he’d played with for years – very uncomfortable. That they didn’t know what to say or how to interact any more both with Dominic and with us. Potentially some guilt that our kid was injured and theirs was fine, and no idea how to handle that. We, as parents, have become extremely intense – we say things about vaccines, trusting doc’s, trusting the FDA, etc – that aren’t comfortable for a lot of people and I’m sure that makes us less fun to be around too.
I think it was a little over a year ago when Rod, in conversation with some of his long time guy friends, heard then phrase “we don’t invite you guys to parties anymore because we don’t know what to feed Dominic”. He was floored. I was floored when he told me the conversation – Really? It had been about not knowing what to feed Dominic??? Not about discomfort around us? How do you respond to that? We always consider if there will be Dominic safe alternatives and ensure that he’s got something safe to eat. Its kind of our job. It was actually very hurtful to realize that people we’d been emotionally connected to for many years basically severed that connection without talking to us at all because they were uncertain about what food to serve. (yes, I am fully aware that there’s a good chance that statement was an excuse for any of the above possiblities I originally thought it was about)
To say we are tremendously grateful for the 1 set of friends who not only continues to invite us to social stuff, but also every time manages to have completely safe food for Dominic is an understatement (you know who you are). We definitely feel isolated, especially in the age of facebook when we see comments by mutual friends about things we aren’t invited to. Even tho Dominic is leaps and bounds better and we could probably actually relax at someones home with him now, the opportunities just don’t present themselves very often.
So I would say to you reading this… if you are not sure what to feed a child (or person in general) who has recently gone on a special diet… just ask. Really. Because it will mean the world to the parents to remain socially connected to you. They are going through enough other garbage right now about their kids regression, they really need the support system and the opportunity to just think about something else for awhile.