Patyrish has posted a list of things not to say to a special needs parent over at her blog, My New Normal. I think our dietitian and nurses could do with reading it.
I have to say, I like it when children ask questions about my girls. I'd far rather children had their questions answered (although it still makes me giggle when their parents tell them a nasogastric feeding tube is "full of oxygen" - yes folks, that's right, the little Y port at the top is actually the world's smallest concentrator, and that syringe full of what appears to be bottled water, the one I'm pushing though the tube, that is in fact liquid O2. Let them ask, I'll answer. As Patryrish points out, I might not answer in huge detail, if I'm tired or in a hurry, but ask me on a good day and your child (and you) will learn more than you could ever wish to know about enteral feeds.
I'd far rather your child looked and asked than just looked and stared. It's natural for children to ask questions - adults, you could perhaps have a little more discipline and think slightly about the impact your questions might have. But if my daughter is the first child your son has seen with a long plastic tube up her nose, then it's natural for him to ask about it. Children who come up and say hello aren't bothering us - although I must admit to having been bothered a little by the child who ran away screaming that my daughter was dead because she didn't answer. And I must also admit to having been caught cackling with laughter on more than one occasion when a child who has started walking backwards in order to continue to stare at my girls has walked straight into a lamppost/parked car/large muddy puddle. This makes my girls laugh too, so I suppose I should thank you for providing our entertainment - only fair really since we were providing yours up until that point!
If you want some specific conversation tips for my girls, Mog will almost always be pleased to receive a compliment on her shoes or her hair (and almost certainly kick you if you fail to notice her new shoes). Little Fish would probably prefer it if you didn't notice her at all - ignore her and she'll come to you, pounce on her and she'll panic. Unless you're a little boy, in which case she'll chase you and love you and giggle at you forever.
One thing I'd say as a general please don't - please don't insist on telling me, over and over again, in front of the girls, what a saint I am, how wonderful I am, how hard my life must be - think about what you're saying. I know you mean well, but in fact you are pointing out your assumption that my girls are a huge burden to me. They're hard work, I don't deny it - but so are any children. And I don't want them hearing the whole time how wonderful I must be for taking them in/taking them on/giving up my life to be with them. That isn't how I see it, and it isn't how I want them to see it either. I chose to have my girls, I love them, they enrich my life immeasurably. There is nothing sweeter than Mog's giggle, than Little Fish's arms around my neck, than the fact that Little Fish's first concern every morning is "I need a cug-cug Mog", and that Mog's first big grin of the day is saved for Little Fish's kiss.
Do by all means tell me how wonderful the girls are! I'll take any amount of that! Not as in "what a testament to your hard work" but as in "I see their gorgeousness". Perhaps you don't. Perhaps you do only see the hard work, the things they can't do. I'm genuinely sorry for you if that is the case. Because my girls are fantastic; they've changed my life, and they are changing the lives of other people who meet them. Mog brings Love. Little Fish brings chaos and determination and Passion.
When I moved from having one disabled child to having two, things changed a lot in my life. My house is no longer my castle; I have people coming into the house regularly to help with care, to help me keep the house clean, to inspect the house and the girls and myself (fostercare regulations). I was fiercely, proudly, independent. No help needed here, I can do it all myself. Once I had two children and one of them was no longer a baby, truth is, I couldn't. I can push two wheelchairs on level ground, but getting both girls across a road is a bit like the old puzzle about the man with the boat, the chicken, the fox, and the hay. I have had to rely on the kindness of strangers. And strangers have been very kind. People open doors, people push one of the girls across the road for me, move displays in crowded shops, carry trays in cafes, stop to pick up dropped toys. We live very close to our church , and always someone will walk home with us to help push one of the girls. One of our neighbours, who is not a church goer, nearly always times his Sunday morning paper run with our walk up to the church, and will push one of the girls there for me. Today I had a visit from the children's worker at church, planning how to include the girls more effectively in their Sunday School classes for the following year. People care.
These are all helpful things. Don't be afraid to offer help, if you have help to offer. But please don't be offended if we thank you for the offer and refuse the help. For example, right now, our babysitters need to be nurses or know about the girls' medical needs. I can't accept casual babysitting help from a 14 year old; the responsibility would be too great. I would love it if that same teenager would be interested in spending an afternoon playing with the girls whilst I get on with something else, or would like to come on a day out with us though. It isn't that I don't trust your daughter, it is that I know how quickly things can go seriously wrong with my girls.
Similarly, holding doors open is very helpful. But do please check we actually need to go through the door - sometimes we're just walking past! And also, when you hold the door open, it is most helpful if you can stand behind the door. If you stand in the middle of the doorway, pushing the door with your arms, we have to somehow walk through you to get through the door. I understand that walking through the door first seems like bad manners, but I'm also very uncomfortable about ducking under your armpit. Especially with a child who is still learning the finer points of driving her power chair!
Thanks for listening.