It happened again today. Actually, it pretty much happens every day. I'm kind of used to it & rarely notice or think twice about it unless it is rude and hurtful. Recently, after swimming with a friend who noticed me dealing with questions about Will's body, she asked if this is what it is always like. I thought about it for a second and replied, "yes. I guess it is."
It's just my normal. And it would be boring to post every single time it happens. Usually I don't even remember. But sometimes, it really stinks. It's wearing on Will lately. He's having a lot of anxiety about what people are going to say about him and quite frankly, his anxiety is completely based in reality... people do say those things and do those things he worries about and he remembers and then he gets nervous it will happen again.
Yet he keeps putting himself out there and trying to make friends everywhere we go. He is the most courageous person I have ever met.
But it does wear on him. And seeing my four year old struggle with anxiety and push through it - no four year old should have to deal with that. So it wears on me too. I certainly can't tell him it won't happen - I can't pretend his fears are unreasonable. They are well thought out and completely logical and usually it happens just as he fears. So we are trying to come up with tools to help us better cope at this stage of the game.
We spoke to one of his doctors in Dallas just yesterday about this issue, in fact. Will was very candid and expressive. He prefers me to intervene still so it is important to me to do that for him for now. It just makes it hard sometimes in places where I have to leave him to fend off curious kids on his own (sunday school, for instance or school.) The doctor gave us some suggestions and little did I know we would be putting them to practice twenty four hours later. Yay for us. Nothing like some practical application.
While swimming today, we encountered several very curious little girls. They went back and forth between Will & Ellie with their questions. (This was the first time I've really had kids notice Ellie's feet... this was new for me.) We gave our usual answers which most kids will accept and move on with - "It's just how God made him... he can do everything you can do... it's just how he was born... he does have hands and feet they are just different."
I repeatedly argued, "It's not weird - it's different." We hate the term "weird."
They were not going to accept my usual answers.
I should note that for the 50 minutes we were swimming, their mother was on her phone the entire time. And these girls were between the ages of 3-5. They were also frequently grabbing on to me, begging me to watch them swim, asking me to move further back so they could swim to me, etc. I kept putting them off (because I was annoyed with their incessant questions about my kids and their refusal to just play) and also because I wasn't there to be their playmate. Ellie is a fearless, great swimmer. But she does not have the strength to pull herself up to safety or even to a sit on the stairs when she falls. She loves swimming to me and we are working on giving me a warning when she "jumps" but I have to keep an eye on her. Plus, Will & I had a game going on. I kept asking the girls where their mother is and telling them I was there to play with my children and couldn't leave my baby to go way out in the pool, etc... mom remained on the phone. I was so annoyed with her. (The girls had on floaties too so I guess she had a false sense of security? When I left the pool, we walked by her and she was discussing tv shows on her phone. Apparently that was more important than playing with her kids or at least yelling at them to get off the strange woman they were grabbing (me). )
So - we moved areas of the pool - they followed.
Will created a game and assigned them roles to play - they ignored him.
Will tried different pool tricks and decided to use them as an audience but they wouldn't quit the questions.
So I finally heeded the doctor's advice and with a smile at Will, I said, "his hands look like that because he is a superhero."
Will smiled at me and said, "Yeah! I am. I'm Batmoose." (Don't ask - it's a hybrid superhero he has recently been playing that he created... think Batman somehow combined with a moose?)
One girl told me she too is a superhero.
They continued to ask questions and bug us. So I said "his hands have superpowers but I can't tell you what they are because they are secret powers." (That's what Will told a doctor yesterday, by the way.) She looked at me confused. Will looked at me like he was thrilled I was paying attention yesterday at the hospital.
Then they ran off - presumably to tell their mother on the phone about Will. I heard the word "superhero" floating back to me over the water. Mom stayed on the phone and waved them off.
So they returned. And then the jerk little one in blue said, "I don't want to touch you because you will give me hand germs and make my hands like yours."
I resisted all mama lion protective urges and did not hurt the child. I should have splashed her but I didn't. I saw hurt across Will's face and I immediately retorted that he didn't have hand germs and it was fine for her to hold his hand and play with him. (All though at this point I didn't want her around him at all.)
(I left our water guns in the car.)
It reminded me of the little girl last summer who acted as though he was contagious... (& when I posted about that, some people were appalled that in our world people would behave like that. Except the other parents of limb differences who commented - not surprised at all.)
I also went back to the superhero thing. At this point, I was done trying to educate her and really just wanted to boost my kid's self esteem and confidence. The whole explanation of being a superhero and therefore born different seemed to work (kind of.) Maybe because it was more concrete than just "being born this way?"
In case you are wondering why we didn't just leave, I did ask Will if he wanted to. He did not. And neither did I. I didn't want to give those girls so much power nor did I want Will to infer that because he is different and people bug us, we end up leaving the pool.
Just a few days ago, we were playing at a playground and while I was helping Ellie scoot to a slide on the little kid's area, I suddenly saw several big kids surround Will way up on the big kid's playground. I knew exactly what was happening because I've seen this scene before. I scooped up Ellie (who was mad!) and raced to Will. I first heard some kid "reassuring" Will that "you just need to grow bigger and then you will have normal hands and feet." (Idiot. Thanks - now I have to teach the group accurate information.) I immediately interrupted and corrected and reassured them he is a kid just like them and can play too and now let him through to the slide, thank you very much.
I later realized that maybe this is why I have a hard time making new friends- I was with a group of mamas I didn't know very well. The other moms were on the side of the playground visiting while their kids play. But, honestly, Ellie really needs me as she is not mobile really yet she is not an infant content to sit in her carseat. So I serve my daughter by helping her play like the other children. And Will needs me to keep an eye on him at all times because of situations like what happened... I never did visit with those moms or even learn some of their names. I did have a good cry on the way home. And again during nap time. And later while I made dinner.)
So here's my question to you other parents of kids with differences... when answering incessant questions, have you resorted to making up stories? (We've done the shark story once too.) Am I setting myself up for future problems as I teach my children about always telling the truth if I pursue these sorts of stories? If you have told one, what's your best one?! And finally, if I do resort to these, am I setting myself up for problems when I try to explain lies vs truth to my own children and why honesty is so important. (Though frankly, the honest answers I give to annoying overly curious people never seem to satisfy them. Also, I should point out that I did try telling the girls, "I've answered all of your questions and now you need to just play or go to your mom." They ignored me.)
So that's my dilemma. Is it ok to go with a more concrete explanation like alligator/shark/superhero when a kid doesn't accept my initial honest answers and won't leave us alone?
Maybe I should just start getting bids to build my own private pool? (Just kidding, R, if you happen to be reading this... unless, of course, you're cool with that?!?)
By the way, I've spoken at several groups around TX about how to teach your children how to deal with people with differences (what to say/what not to say!) and I've got several speaking engagements lined up for next year I'm excited about. I've been thinking I may do a blog series this fall with some of my key teaching points that maybe you can use with your own children as you teach them how to interact with kids like Will and Ellie.)