In the past week, I've had three occasions with Will in which we have come across someone with some sort of difference (a man with dwarfism - which Will was mesmerized with, little does Will know that this was something we have had him tested for at one point, a man with some distinguishing facial characteristics, and a child at church yesterday with no hair thanks to chemotherapy.) In each instance, I've had the privilege of talking to Will about how to ask questions politely, how to respond, and what not to do (point/stare.) (And, admittedly, I also had the sinking stomach feeling that comes with the near panic of what he might say.) And, interestingly, each time, I've had to remind him that God makes everyone different. I've had to remind him that not everyone has hand and feet differences like he does and that is okay but that he doesn't like to be pointed at or stared at and he should not do the same to others.
I imagine this is (mostly) a normal conversation for a mom with any child around Will's age. When they see someone different, they ask questions or point or stare. And we have the responsibility to teach them polite ways to respond and how to appropriately and respectfully satisfy their curiosity.
And then I realized something.
I have spent lots of blog time writing posts describing situations in which someone has confronted us about Will's differences. You can read many of them in the category "Tales from the Aisles," so named because it seems like most of our encounters occur in an aisle of a grocery store. (Perhaps I spend an inordinate amount of time grocery shopping.) Some have been hilarious (the man who expressed great dismay at Will and fear Will would never bowl) and some have been bizarre (the woman who insisted I share Will's medical history with her while checking out at the grocery store because she claimed I could trust her - she was an audiologist.) Others have resulted in me in tears on the bread aisle or the dairy aisle. Once, I found a woman from church a few aisles from where an event occurred and I literally fell apart sobbing in her arms after someone had made some cruel remarks. Another time, a child ("the Claw") was so mean to Will at a park and my dear friend came over that day with my favorite chocolate to comfort me. Another time, he was bullied at a playground in a local restaurant. Of course, there was the little girl that pushed me too far once & got the shark story. I've experienced a few doctors that have crossed the line even - one who accused me of drug use and sent me into tears (& a quiet, teary rage later that day.) And there was one of my favorites - the child who never noticed Will's differences but loved his "bottom cheeks." I've shared many of these stories and even wrote a post not too long ago addressing how moms of kids with differences can respond to the public's queries (or at least how I choose to respond to inevitable questions.) It's one of the first things a new mom of a child with differences asks me, "How do I respond to people's questions/comments/stares?"
But, I feel I have neglected sharing how (in my opinion) one who is typically functioning can encounter someone with differences. I certainly can't speak for others but I do know, as a mom, that perhaps you too are in a similar situation with a child who notices others and wants to say something or stare. As moms (and perhaps a dad out there), we need to teach our children how to politely and respectfully handle situations because your child will encounter others with differences. Perhaps they will be physical differences. Perhaps they will be mental issues. Perhaps they will see a child with cancer or carrying a colostomy bag for waste or hearing aides. We rode a plane recently with a man who is blind and he had his service dog with him. Will has seen lots of service dogs but it was a good teaching opportunity for him to remember that he couldn't pet the dog but he could talk to the man about his dog.
Children will ask questions. They are curious and that is natural and good. Here's a few pointers, from someone who gets asked a lot of questions, as to what bothers me and what doesn't.
1. Meet the person. If you see someone with a difference and your child is staring or pointing or you see their brain flip on (& you begin to panic about what they might say), encourage them to politely ask a question. First, they should introduce themselves and ask the person their name. I think this reinforces that the person is, in fact, a person and not a diagnosis. Teach your child how to politely introduce themselves and initiate a conversation - even with an adult. This is a lifeskill and important for lots of situations - not just seeing someone different than themselves. I think it is important that the child see the person, that they put a name to the person.
In our situation, Will usually takes care of step one. We call him "Little Senator" because he has never met a stranger. Everywhere we go he goes up to totals strangers and introduces himself. Recently, on our way to the neighborhood pool, he said, "Mommy, I hope it's crowded so I can make new friends."
Me? I could crawl in a cave and be antisocial and happy... but not my kid. He forces me to be social.
2. If your child is staring or pointing, tell them it is rude to do so. But know that a curious child is going to stare when they see something different. Telling them to stop staring is only going to make them want to stare more or wonder why they can't look.
Worse, it teaches your child that someone with a difference is "bad" or "wrong."
That is absolutely not what we want our kids to learn. So, encourage them to channel their curiosity elsewhere. Perhaps, encourage them to wave at the person. I do this in reverse all the time. When Will sees someone staring at him, he will often tell me. It bothers him (rarely does a starer smile.) So, I tell him to wave and smile and say hi. This always catches the person off guard (do they think that we don't notice the staring?) Sometimes, they look away, embarrassed (especially if they are over the age of 18.) Usually, though, they can't resist his smile and they smile back. If they don't say hi, it hurts the Senator's feelings and he begins plotting his campaign to win them over. Teach your child to say hi to the person. Teach them to wave. Remind them it is rude to point or stare but they can wave and make a new friend if they would like.
We are people too and it's nice to be noticed - to not feel invisible because no one will look at us since we are different or they are afraid we will think they are staring.
Smile and wave or say hi, it means a lot.
Teach your child to notice something besides the difference. You can certainly affirm their observations - "yes, she does have a walker decorated with pink... and look at her cute monogrammed shirt! And doesn't she have the most beautiful smile and blue eyes." (No, I'm not projecting a future conversation about my daughter, why do you ask?;)) Just affirm and then point out something else to your child to notice so that they aren't only focusing on the difference.
3. Questions. Perhaps your child has questions and it is a situation in which it is okay to approach the person and talk (ie: not the movie theater - let people enjoy the movie! (Also, from personal experience, if someone appears to be running through an airport with two children to catch a flight and is obviously in a hurry, don't stop them to ask questions about their children's differences - not the appropriate time! Just saying.)
Despite what nerves you may have about what your child may say, remember a few things -
the person they are approaching has likely heard it all and the person they are approaching is not unaware of their differences.
I would far rather a naturally curious child ask me questions about my kids than make assumptions for themselves. I view it as an opportunity to educate and make them more aware about others. It is a privilege to spend a few minutes visiting with them. Plus, I feel like they are the lucky ones - they get to meet my kiddos! (And I will use the time to make sure I brag on my kids for a moment or two. It's a great moment to praise something about my child or point out a positive feature or character quality... and who benefits from that? My child, of course!)
Allow and even encourage your child to ask a few questions. But put limits on them - tell your child they can ask one or two questions. Point out any similarities you can think of to help reinforce that the other person is a person too ("look, son, yes, he's in a wheelchair but how many eyes does he have? Two? So do you! And he is super fast, isn't he?" Or "Aren't her pink hearing aides pretty? Your favorite color is pink too!") Don't allow your child (or yourself for that matter) to quiz the person. Their medical history is not your business. They are just living their life and trying to buy groceries/board the airplane/make a bank deposit/swim with their family/eat their dinner. So, allow a few questions (if the person is willing to answer them) and then move your child on. I have been known to tell a child who refuses to stop the questions that I have answered all their questions and am now going to resume playing with my child. Allow a few questions, point out some similarities or something positive, and move on. Respect the person's time and privacy and don't demand that they drop everything to answer every question you can formulate.
4. If you have the time and/or privacy and you notice someone with some sort of difference and you just know your child will notice too... remind them that God makes everyone different. This is what I do with Will and it seems to help. It's one thing to be curious about someone with differences - it's another to treat them as a curiosity.
5. This probably goes without saying and I hope that if you are bothering to read this than it probably doesn't apply to you, but,
Never allow name calling or mocking of someone with differences. I read recently in a book by Ann Voskamp (One Thousand Gifts) that to mock another person is to blasphemy the Creator God, because each of us is made in His image. That profound thought convicted me and stuck with me. Just today, Will used a word he heard somewhere ("idiot.") He had no idea what it meant and so I told him. And I told him that God doesn't make stupid people. He doesn't make someone an idiot. He makes every single person with intent and purpose. He adores and loves each of His creations. And we are not to mock or name call those whom He has created. Allowing your child (or yourself or your peers) to mock is blasphemy. It is bullying as well - a person with differences or a syndrome may not be able to stand up for themselves or defend themselves against your words. Please don't allow mocking.
What not to say:
Don't ask what is "wrong." Don't ask me what went wrong or what is wrong with my child. My child is not "wrong." I know your intent is good and that you don't mean anything negative but I am very cautious about what my child hears about themselves and they are not "wrong." They were created with intent and purpose. They are adored and I love their little bodies. They are not wrong. Another way to ask might be, "if you don't mind my asking, what is their diagnosis?" or "Are your child's differences congenital or developed?"
Dont' tell me you are sorry. Don't give me looks of pity. I am not sorry. I love our life and our children. Yes, it's difficult sometimes and we are often exhausted or overwhelmed but we wouldn't change our children at all. Do not pity us.
Don't tell me some form of "You must be a saint/special/etc." I'm just regular old me. I have no real talents or skills. I don't know why God chose our family for these precious kiddos but I'm so thankful He looked past all my inadequacies and did. Moms of kids with differences are no different from moms of typically functioning kids. We're moms who adore our children. We're moms who may find ourselves in challenging situations that we have to rise to meet. You would too - it's what being a mom means. We're not special - we just love our kids.
Don't argue. I once told a child that this was how God made Will. The kid argued with me. He didn't believe Will was born this way. Seriously? Where did he get his medical degree or theology degree? I realize everyone may not agree with me but please be polite and respectful - especially in front of a child with differences. Don't rudely argue with the mom.
Don't compare. If your brother's girlfriend's personal trainer had an extra toe (true story - this was said to me once) - it's not really the same. If you think you know what it is like to raise a child with a limb difference or muscle weakness and limited range of motion because you saw someone on tv once, you don't. However, if you have a child with a difference (or grandchild or best friend or neice) - it's the same - even if it's not. If you are anywhere close to being in our world because you have a child with, for instance, a singular missing limb or perhaps a completely different condition but a condition or syndrome or disease none the less, tell me. If you spend time in pediatric hospitals and deal with therapies and specialists and questions from strangers then you're in this world too - by all means, say hi & introduce yourself. It's so fun for me to meet others who get my world and somehow it breaks the loneliness. Tell me your story (if I've got too antsy kids and am loading my car with groceries in the 118 degree heat, give me the condensed version and email me the long version!)
Just because the difference is something you've never seen before does not give you the right to exclaim in shock. Remember, they are human. And beautiful and creatively made. And if your child does this? Teach them to apologize. Have enough respect for the person they offended and enough love for your child to teach them to apologize.
Don't judge or make assumptions. Yes, my child is three. And he walks. And he runs. Don't judge me because I may park in a handicapped parking spot on a day that is 112 degrees with 8000% humidity. What you don't know is that he wears prosthetics. And that he has a difficult time regulating body temperature (less limbs = less surface area to sweat from and control temp and then we cover up his legs with prosthetics.) Don't judge me - you don't know all the facts. Or perhaps you see me in public carrying my child. Yes, he can walk. But sometimes the amount of energy he exerts just to balance or walk with what amounts to weights on his legs - it's exhausting and I need him to save his energy for the next event. Don't judge me. Sometimes, I help him with silverware. I will demand feed my baby on difficult doctor days just to get through it. Don't make assumptions about my children or their conditions. My baby did not break her legs and I did not drop her. Don't make assumptions. Please. Ask questions. Don't assume you know all the facts. I hear your whispers and may or may not correct your misinformation/gossip, depending on my mood and my time. I'd far prefer you just ask me and have accurate information on board.
I enjoy talking to people and sharing about my children. God has given us a great story & I love to share it (ie: why I write this blog.) I am always happy to talk to someone who approaches me in kindness about my children. While I am always most concerned about how my words and reactions sound to my children, I am happy to educate and make others aware of differences (& have truly similar my children are to theirs, despite their differences.)
So, your turn. Do you have questions as to how to handle a particular situation with someone with differences? Or, perhaps, you are a mom of a child with differences or you yourself have them - what advice can you add for those who are "typically functioning" as to how to approach you? Have I forgotten anything?