It’s Not Me, It’s You. Thoughts on Reclaiming the Playground

Like most families we spend a lot of time at the playground, but the playground can be a cold, hard taskmaster.

At the playground, compared to any other place, we tend to have to deal with a disproportionate numbers of gawkers. I’m not talking about other kids looking or even staring; kids learn about the world around them by being “nosy neighbors” at times. I’m talking about something very different. I’m talking about straight-up won’t go away, in your face rudeness. 

Up until now, I’ve kind of let it go for several reasons. One reason is because I’ve been uncertain as to how much my own children have noticed or been affected by the gawkers. I certainly haven’t wanted to draw attention to something that’s escaping them. Additionally, there’s the issue that I’m not there to parent anyone else’s children.

Typically when a child is looking much too long and much too much, that child’s parent is on the sidelines and does nothing to intervene. I’m not sure if this is the result of apathy, embarrassment or uncertainly. Regardless, it’s apparent that they are making a conscious effort to disregard the situation. Willful blindness may be a good tactic when kids are sneaking a piece of candy before dinner. But when a child is being cruel or hurtful that same willful blindness only acts as a stamp of approval on that unacceptable behavior.

In the past my approach has been to say hello to the hurtful child a little loudly and assertively. I don’t say it in an unkind manner but in a tone of voice that’s forceful enough to let that child know that an adult is watching her and to put the other parent on notice. This approach has mixed results.

On the days when it hasn’t worked, it’s left me with a dejected feeling that the world is full of unkind, uncaring people. This is decidedly not the case. I know this from firsthand experience and I want my children to know it too.

I know a day is coming when my daughter will be bullied, teased and made fun of. I pray she will escape these torments although realistically I know that to be impossible. When it does happen, I want her to feel empowered to speak up.

But it’s not just her that I want to empower to speak, I want to empower my preschool age son too. I recently asked him if he notices the mean stares his sister gets. He quietly answered yes. Then I asked him if it bothered him. Again, quietly, he responded “yes.” “I don’t like it,” he said, “I think maybe they don’t like [her].” This wounds my heart almost deeper than the unkind stares.

I don’t want my kids to think that they have to put up with unkindness, be it directed at them or at someone else. I want them to speak up and to stand up. We will not “sit in silence” as Frank Peretti discusses in his book The Wounded Spirit. We will not send the message that as Peretti’s puts it, you must “endure whatever comes with the package.”

So from this day forward, we are taking a new approach. If a child continues to gawk, we are going to confront it head-on by politely saying, “Excuse me, I noticed you staring. Is there something I can help you with?”

Will this work? I don’t know. I hope so. But even if it doesn’t, hopefully this will take some of the sting out of the present situation and lay the foundation for future situations.

It’s not you, it’s me is the world’s oldest break-up line. But when it comes to gawkers, it isn’t us, it’s you. 

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(Go here to read an excerpt from Nick Vujicic’s book, Unstoppable, about a grade school bully. Of particular note is his quote: “I always tell people that I’m armless but not harmless.”

Talking To Kids About Differences

In one of our favorite books, Ten Little Finger and Ten Little Toes, author Mem Fox says, “And this little baby as everyone knows has ten little finger and ten little toes.” Kids are naturally curious and uncannily forthright. So when they meet someone who is different, in whatever respect, they want to talk about it and they want answers. I mean, come on, everybody knows that everyone has ten little fingers and ten little toes.

Each family has their own way of addressing differences and while there is certainly no right way, there are a few approaches, even well-intentioned approaches, you may want to reconsider. 

Shushing the questions – Attempting to stifle the question, like looking away, implies that there is something to be ashamed of or embarrassed about. There is nothing shameful about physical or mental differences.

There is also nothing shameful about one child's respectful curiosity of another’s differences. A legitimate question deserves a legitimate answer. Sometimes a child is asking the question simply because she just wants a little validation that she’s seeing and understanding things correctly. Again, remember, everybody knows that everyone has ten little fingers and ten little toes.

There’s another reason not to attempt to silence the question. As everyone knows, shushing a question, any question, from children usually proves to be pretty ineffective.

Responding that God made him special – Don’t get me wrong, I believe my child to be fearfully and wonderfully made. But when you say that God made a differently abled child “special” or “extra special” by implication then, only differently abled children were created special and God made everyone else “un”special or just regular special. Is that really the message you want to send? (As a side note, this is why I think the phrase “differently abled” is more appropriate than the often misused “special needs.”)

Downplaying the difference -  When you agree with a child’s observations about physical differences but then dilute those differences with “it’s like how you were born with green eyes, and some people were born with brown eyes….” you’re doing everyone a disservice. Being born with only one finger is not like being born a red head. You don’t need to “normalize” the difference. Different isn’t abnormal, it’s just different.

So is there a respectful way to handle the situation for all involved? The approach we take when other children ask questions right now is pretty straight forward. Over time, especially as my daughter begins to answer for herself, I’m sure our response will change. But right now this is what we do.

Acknowledge an observation, then move on – When a child asks a question or makes an observation, which frequently is an implied question, we acknowledge the accuracy of the observation. For example:

Where are her other fingers?
There are no other fingers. She only has one finger.
Just one finger?
Yes, just one finger.
Why?
That’s just how she was born.

It seems that once kids notice the difference and have it addressed, they move on. It becomes a non-issue, for everyone. If they don’t move on, we prompt them in that direction by asking them a question about themselves. Having someone talk about themselves, be it a child or an adult, almost always immediately steers the conversation elsewhere or ends it.

While you can’t prepare your kids for every person or situation they might possibly encounter, you can ready your own response. Not only does it give you a graceful way to handle the present situation but it also buys you some time until you can sit down with your kids and have a thoughtful, meaningful conversation.

Happy talking.

Not In Spite Of, But Because Of

Yesterday as we were leaving PT, a guy in a wheelchair came rolling up. “Are you headed this way?” I asked him, indicating the door I held open. He flashed me a grin and responded, “I’ve got it.” He meant it to. Before I’d even reached my car, I heard the door click closed behind him.

Sweeping generalities aside, you’d be hard pressed to say that this can do, no holds barred, won’t take no for an answer isn’t typical of the amputee community. Daily we witness this indomitable spirit.

We were days home from our adoption trip and and one night after dinner we were all clearing our plates from the table. My daughter wanted to carry her plate to the sink  too. I can’t remember what was on her plate but I do remember that if spilt it would have made a horrible mess, so I headed to the sink with her plate. She gave me a look of such hurt and betrayal. I all but expected her next utterance to be “Et tu, Brute?” I walked back to the table with the messy plate and slid it under her chin. She gripped the plate tight, steadying it on her little arm and we walked over to the sink spill-free. The look of triumph on her face was hard to miss.

When I read an article about someone with a disability overcoming that disability and going on to achieve great things, frequently the write-up says, “in spite of his/her disability, he/she succeeded in….” I don’t know if resilience is innate or learned, probably a little bit of both. What I do know is that people achieve not in spite of any perceived disability, but because of. We are who we are for a reason.

What’s your mountain top? How many steps do you need to take to get you over that mountain?

The Fight is Worthy of You

Almost every parent of a child with a limb difference will tell you, at least as the parent, that living with a limb difference is very manageable. Yes, there are OT and PT sessions and visits to Shriners and sometimes for adopted children, for whom English is a second language, there are also speech classes, but it’s still very doable.

But then there are those days. There are those days when it all seems to fall apart. There are those days when it’s hard to watch your child struggle even when she ultimately succeeds. There’s that day when you’re too tired to cook (probably from all the shuttling to OT and PT and doing home therapy), so you all go out for Mexican. That will be the day that another mother loudly shushes her kids for asking her about the little girl with one arm. That mom will ironically tell her kids they need to be quiet so as to not make anyone uncomfortable all the while making you wince as you and your chip dig deeper into the salsa bowl.

There’s the day when the little boy at Lego club asks you why your daughter only has one arm. You respond to him simply and directly in a manner that 9 times out of 10 works that she was just born that way. He’ll tell you it’s weird and you’ll look him in the eye and respond with absolute authority, “No, it’s awesome.” He’ll turn up his nose at you and sneer, “no, it’s not” and you’ll want to deck an eight year old and the parents who raised him to be so contemptuous of others.

Those days are hard.

Here’s what I want my kids, differently abled and otherwise, to know about days when it’s hard to keep the faith, when it’s a fight to persevere and remain steadfast, when it’s a struggle to remain hopeful and grace-filled: that fight is worthy of you.

It’s not that you are worthy of the fight. No, sir. That fight is worthy of you. You are a warrior of valor, a soldier of strength. That fight is ugly and onerous because it must contend with the likes of you. When the field of battle feels steep and the fighting too long, remember this. You are a force to be reckoned with. Mighty is your mountain, deep are your rivers of truth. The fight, beautiful one, is worthy of you.

Able

Image Source

Have Bendy Straw, Will Travel

Before we met our daughter, we weren't exactly sure how it was all going to come together. I mean exactly how were we going to do life with a little girl with short legs and only one small arm?

On the one hand, the words of Nick Vuijcic, whom we admire greatly, were ringing in our ears - "no arms, no legs, no worries." But on the other hand, we were very worried about the practicalities of day-to-day life.

One of the doctors who reviewed our daughter's file spoke words that would give us some much needed calm. He told us, "much can be done with little." How true that's been.

We are currently in the process of getting a power wheel chair, which will be a huge asset. But much of what our daughter uses for daily living isn't revolutionary or earth shattering. We've simply made a few tweaks here and there.

Our simple modifications include: a DIY platform bed with mattress only so that she can easily get in and out herself. We replaced the knob on her door with a pull-down handle. We've tied long ribbons to the handle so that she can open and close the door herself. Instead of a dresser, the clothes in her closet are hung low so that she can chose them herself.

Thanks to another mom, we know to keep a Camelbak in the car so that she can get herself a drink while riding in the car seat. We also have a stash of bendy straws so that any cup becomes accessible for her at a restaurant.

Before our daughter came home when asked for toy suggestions, we just kind of shrugged helplessly. Now we know what toys she likes to play with -- her brother's. With the exception of a portable easel we haven't purchased any "limb different" toys. However, we do have a few hand-me-downs that work especially well.  Puzzles, like this one, with magnets are good because they can be manipulated using feet or a little arm. Glitter glue is also good for kids with short arms because you can use your chin and shoulder to squeeze.

While I certainly want my daughter to have whatever she needs, the reality is that what works is likely what you already have. The best tools are common sense, creativity and stick-to-it-ness. During a conversation recently with someone on a wholly unrelated topic, this individual commented that all it really takes to brush your teeth is salt and a twig.

Limb differences aside, you have salt and a twig, you're set. You have a bendy straw, well, now your dreams can grow wings.

So Here We Are

We adopted a three year old congenital quad amputee. An unstoppable little girl with light in her eyes and fire in her belly.

Our path to her, like so many adoption stories, was both complicated and yet simple. She has opened our eyes to a whole new world. We are now well acquainted with things formerly unknown to us. Things like: medical acronyms, therapy appointments and adaptive devices.

When we started down the limb different path, we were a little bit clueless. In fact my first research foray yielded few results. I later learned this was because I was searching using the medical diagnosis instead of the broader term "limb difference."

We're better educated now. While medical professionals have played a part in that education, it's largely been gleaned from daily life and from other families who have so willingly shared their stories.

Now it's our turn to share, and so here we are. This is how we live life, limb different.