One difficult aspect of being the parent of a special needs or medically complex child is that often you can’t join in the casual camaraderie of the “you know how it is…” conversation with other parents. A typical scene might proceed like:
Parent one: I just don’t know what to do about all that drool. She’s teething, so, you know…
Parent two: Yes! Ugh. Well right now we’re starting on potty training, and you know how that goes.
Special Needs Parent: True! I’ll be right there with you on potty training once my daughter is out of the hospital, but you know how it is waiting for your kid to be off narcotics and paralytics, amiright?
Please don’t misunderstand my meaning here- I am not trivializing the more everyday concerns of parenting. Rather I’m illustrating that engaging authentically in casual conversation as a special needs parent is like being the oddball in a comedy sketch who throws out non sequiturs and unexpected extremes that just don’t fit the tone of the exchange. You are perpetually Steve Carell.
Understandably, most people don’t have that shared experience to draw on, so the nod or the empathetic “mmmmmhm,” can’t follow, and the momentum of the conversation is gone. Usually people are very kind in this situation and offer an encouraging comment or ask to learn more about my circumstances. These are appropriate, sweet responses, and my family and I feel blessed and valued by these exchanges. Nevertheless, that air of relaxed comraderie dissipates, and a shift is made into a more formal and/or weighty discussion.
For me, missing the opportunity to have a casual conversation about what actually happened in my day is one of the biggest unexpected challenges of being a special needs mom. In these conversations, I know that I can either avoid mentioning the medical parts of my day and maintain that casual atmosphere, or I can share my experience but expect to shift from being a “relaxed peer” into being an educator and grateful-recipient-of-concern. Again, I *am* truly grateful for the interest and concern others have shown us. And I actually love sharing our experience and educating when I can; it’s a big reason why I write here. But sometimes, I just want to be able to chat casually over coffee.
To make an analogy, medical situations (doc visits, medicines, hospital stays, machines, daily trach care) are part of my everyday life much like how a daily traffic commute is part of many peoples’ lives where I live. Both are necessary inconveniences. Both are worse some days than others. And just as commuters accept traffic as a given, medical situations are a normal part of my day. And like traffic woes, it’s comforting to share a passing comment about the daily grind with others.
Imagine that, as a commuter, you sit down to have coffee with a friend. You share a casual comment on your daily commute, except the person receiving it has no experience with traffic at all.
Commuter: Ooh, took me an extra 25 minutes to get in this morning. I need some coffee!
Friend: WHAT!! Are you serious??
Commuter: Yeah I think there was, a stall or something? Anyway which one is decaf here…
Friend: You have to sit in your car that long EVERY DAY?
Commuter: Yeah…it’s not so bad. That’s traffic. Do they have a vanilla hazelnut now….?
Friend: Omigod you shouldn’t have to do that!! [Staccato questions about whether you could avoid this unbelievably odd burden of ‘traffic’ by doing xyz….]
Commuter: …I just wanted some coffee.
It’s unavoidable, really, because the reality is most people are completely unfamiliar with special needs parents’ “daily commute.” What we experience as normal is extreme and unusual to most other people. And that empathetic but casual tone of conversation that is so enjoyable is usually dependent on the participants having a shared experience in common. That’s why special needs websites, forums, Facebook groups and support meetings flourish- these are places that special needs parents can talk about the details of their day as casually as others discuss traffic; sometimes even humorously. A typical scene might go like this:
Special Needs Parent 1: The other day I had to do an emergency trach change on the concrete outside of Target.
Special Needs Parent 2: Wow, that sucks.
Special Needs Parent 1: Yeah, and I got an Icee stain souvenir on my pants.
[they laugh and continue drinking coffee]
Maybe the commute analogy could be a useful awkward-conversation-converter, and I could let friends and family in on “the code…” The next time I want to make an offhand comment about my unusual-but-normal-to-me day, I could try remarking, “How ’bout that traffic, eh?”