6 ways to be (and stay) friends with parents of special-needs kids:
1) You don’t have to compare our suffering or difficulty to your own. It’s okay to not have a frame of reference for what it is like to potentially or actually lose a kid, and please don’t compare it to that time your dog had ear mites and you had to give him drops for a week.
2) Understand that some of us don’t write our own schedule. Things get chaotic around our house. Our kids may have complicated medication regimens that have to be timed exactly, special diets, and medical equipment that has to be prepared before an outing. A trip to the park may feel like a lark to some parents, and an Arctic expedition to others. We may have to cancel plans, and that doesn’t mean we don’t value you and want you in our lives.
3) We need to occasionally talk to adults that aren’t doctors. Or caseworkers, or school liaisons, or insurance people, or therapists, or whatever. We would like to talk without having half our conversation be Greek medical terms. We want to talk about current events, books, professional wrestling, robots, anything other than diagnoses, developmental milestones, or prosthetics.
4) We might need rescuing. It’s easy for parents with no medical background to get overwhelmed reading medical journals and researching drug trials and alternative treatments. We can get stuck in a feedback loop, and that can be a dark place for us. Also, many of us don’t get nearly enough sleep, and some of us have PTSD. Every time my baby moves in her sleep, or blinks more than 3 times, I worry it may be a seizure. This terrifies me.
5) We’re capable of being great friends. However, our situation may be such that people other than our children (ourselves included) are not our priority at the moment. Our kids may literally be in a life-or-death situation. It may get better, or more manageable. At such a time, we are totally down for game night or a Stephen Seagal movie marathon, and we might even organize it. At the moment, we may only have time for a quick facebook chat or a cup of coffee.
This may seem like a lot to deal with, but:
6) Please don’t give up on us. We’ve probably already lost friends, and can be regarded as downers. If you knew us before, we are the same people, but stuck in emergency/crisis management mode. We are struggling to survive. Please help. Bring a casserole.