The Great 2012 Dilemma of the Batmoose & "Hand Germs"

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.

Yeah, right.

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.)  

7 thoughts:

ywilbur said...

The tiger/shark stuff doesn't work either. I tried that once. I thought it would work too for the 3-5 year olds especially who can't wrap head around abstract 'he was born that way' or "God made him that way".

JK can now do OK on his own but he has an 'actors' face and tone. He can glare and make a scary face and the kids run away. When he was young and unsure and got cornered on those darn playlands kids were just mean and rude because they could be...either too little to get it or at that bossy self centered age 7-9 were they just well it's not quite bullying as I think it comes with the age for many kids but close: it's all about me.

There is a point where I will get stern and just say 'Hey, that's enough. I'm not here / he is not here to answer your questions and you are being rude so go away or don't ask again'. That doesn't work unless a parent hears and is willing to end it. Still kids will be less overt and stay away from me and JK.

Once JK's English started taking off he could and does berate kids in his drill sargent voice...seriously if you are on end of that drill sargent rant you won't ever ask again...imagine if you were at basic training and mocked your drill instructor...not good.

Now at 6.5 he handles it himself most times. Usually the 'God made me this way' works so that is his go to defense. He shrugs off the 'babies'---We (JK, my older son, and I) have decided that 'babies' are anyone under age 5 (sorry Will!) as most of those ask the same type of questions and just won't stop...for them he grins, smiles, condescends, says 'that's enough, baby', walks away, HE goes up and tell their parent --'your baby is scared of me' and then parent puts end to it usually out of embarrassment.

One thing that worked great in playlands for 'babies' when JK started to learn English is ZOMBIES. He started telling kids in the playlands who asked that he was a Zombie and would make his Zombie face and roar at them and seriously for a while there little 2-4 year olds were coming out of those playlands in horrified tears.

With JK I saw exactly what you are seeing. There was a pre-English time where he was oblivious due to fact that in orphanage everyone had differences and he didn't understand the questions anyway, was too self-absorbed in playing with new exciting world outside orphanage etc... then he learned to be shy and fearful and was angry about kids (he started hitting and crying). I was a mess and never knew what to do either as I would get angry. JK so doesn't need a disability pass at amusement parks as he has patience and stamina to stand in lines but I realized at least with the pass he avoids all the comments and that is so worth it!

The older kids love the Zombie chance game then...more to come I tried to submit and said too long!

ywilbur said...

I know you are forced to read my long, long posts sorry sometimes get so verbose and have to say anything but here is the gem:

This month at his Karate the word of month is Brave (to tie into the movie) and what that means: JK said and this is first time he EVER spoke in circle time! When he started talking I grabbed some paper to jot down for the journal I keep for him but should get it close here as only read it 1000 times.

He said: "I am brave for my friend William Butts. He is a baby (sorry again Will!) but he has no foot like me, no 2 foots, and 2 fingers like me and 1 finger. Him a little different from me but we are same..and him in Texas but I didn't see him in Texas"

(we went to San Antonio end of June and he looked for Will everywhere and was convinced we'd see him). At the end of every day at bedtime he would recap day for journal and end with 'and I didn't see William Butts'.

so then JK kind of stopped like he lost his thought and teacher (the greatest kindest young men around teach here---except for maybe those at Camp No Limits!) asked 'so you are brave for your friend to show him not be be scared, right?' and JK said 'no. I'm brave for William Butts so people see me. they say what happened, where is your hand and blah blah blah...I say God made me this way then when they see William Butts I'm brave so they don't be mean to William Butts'

So that is pretty darn the best story I have!!!

Still it is hard: a lot of times I cry over things or get mad, fume. But, not so bad now that JK is handling things more on his own and not being scared.

Tania Tirraoro said...

I found your blog as I am the PR/Community Manager for DysNet, the limb difference network and so trawl the web for great websites about dysmelia/limb differences.
My children don't have a limb difference but your post really resonates with me because they do have autism. My younger son will not talk or engage with anyone he doesn't know and this can cause unpleasant stares or comments.
For a long time, I wasn't sure what to say, but now I'm older and more.. shall we say, belligerent.. I just say it straight. He won't talk to you because has has autism. I then turn away because their follow ups are of no interest to me as they are usually uninformed and rather annoying and I, frankly, don't have time to engage in any discussion about the whys or 'how do we cope' type of comments. You cope because...hmm, what's the option?
We took the decision years ago, to rent a villa with a private pool each year for our vacation and take my husband's parents with us. That way, we have support, privacy from unwelcome intrusions and we can relax knowing that whatever their behaviour, there's no one to judge us.
Until this year, we've even driven from the UK to Italy for it. This year, we're flying... it'll be a whole new experience.
Thank you for your really interesting post. If you're interested in finding out about DysNet, we're at www.facebook.com/dysnet
Best wishes

ywilbur said...

When I adopted a child with limb differences it didn't even occur to me that he would get rude comments because it was a 'physical' seeable difference vs my older child.

I notice that my older child who has Asperger's and FASD diagnosis does not get random strangers coming up to him or cornered. Also unless he tries to join into an activity which he pretty much never does the other kids were always just too busy playing to come 'bother' him with questions.

Now he often gets scolded by adults for being 'rude' and 'loud'. For all my mini-rants about how hard it was when he was first adopted (around age 8) when he had more tantrums, people mostly backed off. He is 15 and over 6 feet tall now so people tend to leave him alone now for sure.

The hardest part with my younger son is that because he will answer a question of 'what happened to you' or because he is engaging in activities the kids corner and comment, and both kids and adults come up and ask questions.

A lot of adult foreigners of one particular country will come up, not say anything at all to me and point and kneel down to take pictures with him (this happens about 2-4 times a month) and has happened every time we've gone to see a musical theater production at local theater. They never answer me in English so I don't think they know English (not the same people every time). I take their pictures with him and it is a running joke with us.

Many senior citizens also come up and give him money (usually 5 dollar bills) which I let him buy a small treat for him and his brother (who is rightfully miffed that he didn't get money from random stranger and will make a 'rude' comment). This is very irritating as it teaches my 6 year old to take money (and pictures) from 'well-meaning' strangers.

One Christmas, in one outing to Walmart, JK collected 32 dollars!

Once Will gets a little bit older I hope it will be easier because most other kids unless they are flat out bullying will back off when he answers their questions.

Another thing JK and I do is make a big joke of it. We have a hand signal and a huge grin to share when people take pictures or give money to convey 'whoa that is just so silly'

Oh, and the phrase, 'it takes some people time to get used to you'. That phrase worked in the transition phrase (between 5 - 6 when he was getting really upset and crying or angry about all the comments). Whenever we went somewhere new, I would remind him that it took some kids a long time to get used to him as they never saw a kid with missing limbs before. that can be sad though as at times as after 5 weeks (out of 8) in a swim class he asked in defeated, breaking voice 'when are they going to get used to me, mama?'

He is getting good at putting more humor his replies or such (like clowning around in the pictures people want to take)...grrr...you do what you have to do.. I don't have the energy or courage to tell people off so I just do what I can.

Tania: Hope you have my luck with flying. I was so nervous taking my older son on a plane. I had those little business cards made and passed out them to flight attendants. Then my son was amazing!!! He loved flying and the sound of the plane was soothing to him. He's even now flown twice as an unaccompanied minor without problems!

amd04042003 said...

My son doesn't have limb differences, but while in Walmart one day, we saw a child that DID have a limb difference. He had on a shirt that said "OMG, A shark ate my arm". My son thought it was the funniest shirt ever and that the kid was awesome.

BMarie said...

Wow! I am not sure how you refrained from punching those girls because I would have wanted to! I despise parents that just talk on their phone while their kids are clearly interfering and pestering. When I go to the park to play with my child other children are starving for attention and see that I am happily giving attention to my daughter so they follow us around the park, insist I watch them (I even had a young girl yell at me once), interfer with my time with my daughter - I am a working mother so I take our time together very, very serious! So that in itself is annoying but to be questioned like that and haven them disrespect your request of leaving you alone - I can't imagine. You and your children have so much strength. I admire you all for that so much! I am a frequent reader of your blog. I think about your children especially Will's courage and your faith all the time and it has gotten me through difficult situations of my own. I thank you for that. Will and Ellie are doing and will continue to do great things. I know Will be famous one day I just know it. Your blog has opened my eyes to a lot. Thanks again for your wonderful writing and sharing your amazing kids. You are all very inspirational!

Sarah said...

Ok, disclaimer, I don't have children but have worked around them most of my life. I can't believe the crap you very, very, very patient parents and incredible children have to put up with. This post has been on my mind for several days now and I still can't shake it. I can offer no advice because I am not a parent and would not presume to really understand what you are going through but I understand so much more how to act like a civilized person. Taking pictures that would put me over the edge. Sheesh. Then they would have something to take a picture of, a mama bear screaming at them. Kids I almost understand but adults. Really.
I will try to learn patience and understanding from you all. You have evolved to a state of higher being than I am at now. I hope that I will teach my future children, however they look, to be accepting and welcoming to all. I should teach myself also.
Thank you all for opening my eyes.

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