I have a daughter with special needs. At first glance she doesn't look different. She looks like any other quiet three-year-old sitting on floor or in the shopping cart; only she isn't three, she's five. She isn't quiet, she's actually quite noisy, she just doesn't say words. Oh yeah, and she is sitting because she can't stand unassisted.
My five-year-old daughter has complications of open-heart surgery. For six months following her birth she was in ICU fighting for her life. When she did come home she was on a ventilator with a feeding tube and pulse-oximeter. Her pretty little nursery became more like a hospital room and I became a lot like a nurse.
When people see her they may want to ask, "What is wrong with your daughter?" But I would prefer they see what is right with her. My girl has the most love of any kid around, but only when she knows you love her. She smiles huge and laughs with her whole body. She loves music and books, and anything on the Disney Channel. Since most of the normal things aren't readily noticed, and since I can't always control the way she responds in a situation, maybe we can approach the way you may respond. I don't know if all parents of special needs children feel the same way, but this is how I feel.
Most parents of special needs children I think would agree that above all else their child is a child. They like to play and laugh, they have favorite colors, characters, books, toys, and people. And if you are lucky enough to be one of those people you stop seeing the differences. Please don't treat our kids differently. They won't break, if they have difficulty doing something or are apprehensive about certain things, we can warn you. Even if something does happen we are prepared for it and it will be okay. My daughter understands more than she can communicate and she knows when things are uncomfortable or tense, so relax. Talk to her, play with her, smile at her and let your kids be around her, it will benefit everyone involved.
I am okay with questions, just try to be kind. Remember what your mother told you about if you can't say something nice... Please avoid words like wrong, the "r"-word, or weird. In my situation it is easier if you say something like, "Does your daughter have speech delays?" "Is she unable to walk?" "Is that a feeding tube?" Then I can say, "Yes." And maybe we will have a discussion about the miracle that is my child or maybe we won't, but we won't be uncomfortable anymore, because I probably did notice that look of shock that crossed your face. But please don't ask a parent of special needs children something you would never ask another stranger, like if I'm on valium. (And if you do ask that and I say no, don't insist that I should be.)
If your child notices first, take the opportunity to teach. Whether you choose to take them aside and explain or you want to ask about something, either is probably fine. Just like everyone else, some people are fine chatting with a stranger in line at the grocery store and some people are not. However, please don't pull your child's arm and yell, "Stop staring, its rude." Because now people are looking at me and you and both kids are uncomfortable. (And yes it has happened.) If you choose to explain things to your child let me tell you a few things I have discovered. Words like sick, hurt, different, often suggest contagious, fragile, not someone you want to be around. Emphasize what is special or they can relate to and keep it light. For instance, I have reminded kids of the stroller they get to ride in when they are tired and explain that her legs aren't strong enough yet and her wheelchair lets her rest when she gets tired. For me, this works. Consider their age and understanding, they probably need less of an explanation than you might think.
Now, if you see a child do something or act someway that is gross, please don't make gagging sounds or say, "Oh, that's disgusting." (And yes, that too has happened.) If it makes you sick just look away. We are definitely aware of this behavior, this is after all our life, and while we may not have chosen it, we are happy in it. For a while my sweet baby had a trach and yes, that can make people uncomfortable, but it saved my daughter's life and for that I am grateful. So while things may seem different or even uncomfortable to you, please don't stare at anyone, ever, with a disgusted look on your face. Just quietly, discreetly walk away. We will be okay with that.
Above all, please don't judge. I learned a long time ago that life can change in an instant. We all have things that keep us up at night or try our patience and it is relative to what we are used to dealing with. I love my daughter and I will take the moments I have because they come one at a time and usually the good moments outweigh the bad. If I am in a bad moment, I'm sorry you had to see it, but please try not to make it worse. I am most likely not a bad mom, just caught in a bad situation. Please remember that we are all doing the best we can with the circumstances we've been given and just think before you act. And if you do get the opportunity to make my little girl laugh, I promise you will end up laughing too. Happiness is contagious and there is plenty to go around.