It occurred to me after the post on how to interact with Collin that it can also be intimidating for some people to interact with parents of a child with special needs. Many of the go-to topics of conversation just don't seem to apply to us and it feels so easy to accidentally say something offensive. It's unfamiliar territory for many people and consequently difficult to know how to move forward. That's why some people avoid anything beyond a 'Hey, how are you?' while others ask for what amounts to a complete medical and developmental history along with our projections for his future. So, what do you say? What can you ask?
I don't claim to speak for all parents of kids with special needs, but here is a general list of practical tips that apply to lots of situations. Don't take it as a list of rules, but rather as guidelines to simplify things and help them seem less scary.
1. Go ahead and ask.
Collin is probably different than any other kid you've ever met, so we don't expect you to know all of his cues or understand why he does what he does. Of course, it is difficult to have to answer questions about things that would be self evident with most other kids, but that's no one's fault and we would rather you know than not. In a way, the more you understand Collin, the more you understand us.
Which questions should you ask? We talked about it a long time ago, and it still holds mostly true: be specific and focus more on 'what' questions. 'How is Collin?' is a question that requires us to either go the vague and superficial route ('He's good!') or the detailed and harrowing route ('How much time do you have?'). 'What did Collin do today?' 'What is that thing sticking out of Collin's belly?' and 'What is Collin saying?' are all totally acceptable and manageable. Also steer clear of questions about the future. 'Will Collin ever learn to eat by mouth?' is a question no one can answer. And does it matter, anyway?
2. Talk about your own kids...but not too much.
If you have some, we want to know your kids too! There is no reason to be uncomfortable talking to us about your typically developing child. We want to hear about their personality and what they're in to. That being said, we might not want to hear about how they are hitting all their milestones way before all of their peers and are in the 99th percentile for everything measurable. Honestly, though, most people other than the grandparents might not want to hear that.
3. Talk about things other than kids.
We read books and watch movies. We're interested in farming and good food. We are knowledgeable about things other than therapies and medications and durable medical equipment and it feels great to have grown up conversations that have nothing to do with parenting or sleep schedules or even Collin.
4. Be okay with differences and difficulty.
There are a lot of things about our lives that are the same as yours, but there are a lot of things that are very different, and that's okay. The more okay you are with it, the less uncomfortable it is. Likewise, there will be times when things are hard for us in a way you can't really understand. That's okay, too. Don't feel sorry for us and don't feel like you have to say something to make it better. Just recognize the difficulty and be there with us and for us.
5. Remember that what matters most to us is your heart.
We're not looking for perfection here. We don't want anyone walking on eggshells around us and we've both said our fair share of stupid things to other people. What really stands out to us is your interest, your concern, your willingness to step out into something unfamiliar because you sense it might be worth it.
Collin's best bud at the aquatherapy pool started off their relationship with a somewhat rude inquiry and even though she still asks awkward questions about what Collin will and won't be able to do in the future, she also cuts coupons for him and bought him a plush orange fish that reminded her of him last summer. He smiles when she crouches down on the edge of the pool and talks to him. She sits with me while he swims, sometimes making light conversation, sometimes just sitting and enjoying the show.
In a way, conversing with a parent of a kid with special needs is like getting to know someone from a different culture. It involves asking, sharing, and working through awkwardness. It requires reaching out and across and identifying both likenesses and differences. But once you get started, you realize that the gulf is not as wide as it had looked at first; and what results is richness -- something better than before.