A Fork, A Spoon and A Question

We’ve tried a fair number of eating utensils: regular utensils, Asian soup spoons, the maroon spoon and the swivel spoon. The utensils that work best are Dollar Store ones that have been heated and bent by our OT. When it comes to utensils, cheaper is actually better. Thinner metal and plastic heat and bend more easily and these slide into the U-cuff nicely because the handles are flat. (Our U-cuffs come from here.)

The first time our OT modified the utensils, they worked great at OT. But when we got home, they weren’t working at all; the angle was off. Finally I realized that the booster seat height was different at OT than our home booster. We ended up taking our booster seat with us to OT a few times to make sure we had the table to seat ratio correct.

The other thing we have found is that when eating cereal or soup, it’s hard for Ying* to reach the bottom of the bowl. A wooden chopping block raises the bowl to just the right height. We had a related issue when camping this past weekend. When sitting at a picnic table in a booster seat, she was too far from the edge of the table. We ended up putting the top of a Rubbermaid storage tote on top of the picnic table, essentially extending the table’s edge and bringing the food to her.

Now for the question: We have a short road trip coming up. Road trips are always a bit tricky with little kids. But there’s the added complication of the limb differences. Things Ying can do at home, she can’t do in the car. Books are out, as is the ever car-worthy Magnadoodle, and coloring (the arm is too short and her feet can turn pages only when a book is flat.) That leaves a few obvious choices like movies on the Tablet and audio books. Surely there are other options I’m missing? Otherwise it might be a REALLY long car ride.

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* It’s gotten really cumbersome to keep saying “my daughter” or “my son.” For privacy reasons, I’d prefer not to use their real names. So I’m giving my kids blog names. My daughter from hereon out is Ying and my son Luk Chaai. I’m sure that will make things immeasurably easier!

Facing FUD And Winning

I keep reiterating ad naseum that limb differences don’t have to affect day-to-day living but then continuously find a way to parlay limb differences into every day life. What’s up with that paradox? I think it all has to do with FUD. You don’t know what FUD is? Trust me, you know what the substance of it is. What you may not know is that it’s the acronym for fear, uncertainty and doubt.

We spent Memorial Day weekend camping in mountain lion territory.  We never saw a mountain lion, but we did see plenty of signs reminding us that we had pitched our tent (metaphorically and literally) in their neck of the woods. We were advised on what to do should we encounter a mountain lion. The appropriate protocol is make yourself as big as possible by raising your arms and spreading out your jacket. You should also put small children on your shoulders. If the mountain lion approaches, you should make loud menacing noises to convince the animal that you are not prey but are instead a potential danger.

Here’s a double dose of honesty – do you know what one of my biggest fears was about adopting a child with a “significant” disability? That it would shake up my crazy beautiful life. Has having a child with a significant disability shaken up my life? You bet. But not in the ways one would imagine.

Most people fear that something will happen to them or someone they love. Having a limb different child  certainly isn’t catastrophic, but it is life changing for everyone involved. It’s the biggest fear realized.

We walked to the edge of the deep abyss, held hands and jumped. The biggest hurdle wasn’t learning to navigate the limb difference waters, it was leaping out into the dark unknown.

Do you know what it feels like to mud wrestle FUD and win? It’s freeing and invigorating.

When you’re in the belly of the beast, whether you are there by your own accord or by life’s “happenstance,” it can be a frightening place. Stand tall, make yourself as large as possible and scream like your life bloody well depends on it.

It’s many steps to the edge of the cliff, but only one to leap off.

You’ll be glad you did.

 

Limb different. Limb lovely.

 

Limb Differences Worldwide

Limb differences have been receiving a lot of media attention lately. Most recently, the tragedy in Boston has brought the issue to the forefront with many of the victims losing limbs. Also, returning veterans are frequently limb different because of IEDs. All of this, and the continued emerging technology of prosthetics, has given limb differences a very positive spotlight. As the issue has gained national awareness, it seems that the limb different community now has an even stronger voice.

This raises that question: how are limb differences treated worldwide, especially congenital limb differences?

Disabilities can be stigmatized in any country. But what happens when a child is born with a limb difference in a developing nation? Who helps? Where do you turn?

We’ve spent the last two days looking at wheelchair vehicles and prosthetics. I’m exhausted and my head is spinning. We had anticipated the price tags to be one of the major stumbling blocks. It turns out that’s not even our biggest problem. Instead we are stymied by vehicle seating configurations and prosthetics that will make our already easily overheated daughter sweat.

I’m ready to lay my weary down. What if I had to do it without Google or Starbucks or without an air conditioned car speeding me along to my appointments in the  HOV lane? What then?

All statistics are from Compassion International’s Winter 2013 magazine. Compassion cites their sources as: UNICEF, World Bank, Forum on Public Policy, WHO, World Resources Institute, UNESCO

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Here’s an interesting article on Limb differences in Afghanistan

Harnessing the Power of “I Can’t”

So my ‘Yes, I Can’ girl today said “I can’t” for the first time. She’s obviously conveyed this attitude before (she’s three after all), but it’s the first time she’s ever verbalized it in English or her native language.

The ‘I Can’t’ was the result of an unwillingness to climb the stairs. Her proclamation was accompanied by some rather lengthy and unrestrained screaming. For twenty minutes, we made no headway. My husband coaxed, her brother encouraged, we all gave her some space. But she wouldn’t budge. Finally, I sat a few steps up and held up two of her favorite dresses. “Which one do you want today?” I asked. The wailing continued. I went back to the closet and returned with two more dresses, both frillier than my original offerings. “What about one of these?” I asked. The crying stopped for just a moment and she nodded in the direction of one. 

We reached a compromise. She climbed up four steps and I helped her into her lavender dress. Our moment of crisis had passed. 

But what she said got me thinking. Where did this ‘I can’t’ come from? This wasn’t the first time she’d balked at climbing. We’ve had tears before. But it’s the first time she said she couldn’t as opposed to she wouldn’t. When I mentioned it to my husband, he suggested she’d picked it the phrase from her brother. But the more I mulled it over, the more I knew the cause couldn’t be pinned on anyone under four feet.

I thought about how when I was asked to read them a book, I had said, “I can’t right now.”  Or there was this weekend when my son asked me to dance with him to live music at the open air mall. “I can’t,” I had laughed. “It’s hot and I’m too tired.” It was hot and I was tired. But those excuses were admittedly a pretext for me not making a fool of myself with my rhythm-less moves.

So I’ve made a decision. We are all going to remove “I can’t” from our vocabulary. It’s not that I’m going to start dropping everything to accommodate requests from my kids or anyone else. Or that if someone asks me if I’m capable of climbing Mt. Everest tomorrow that I’ll pipe up with a cheery ‘Yes! Yes, I can!”. Because I can’t. But the reason I can’t is because I’m untrained, unprepared and, frankly, unwilling. That’s different than incapable. So from here on out that’s what I’m going to say. I’m going to state why I can’t and not rely on a blanket statement of physical impossibility.

Semantics? Maybe.

But I prefer to think of it as harnessing the power I Can’t into a mindset of I can.

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Here are a few videos of congenital quads to inspire the ‘I Can’ in you. Video 1 is Gabe Adams. We started working on pouring milk after I saw this video. Video 2 is not in English but you don’t need it to be to understand it. Watch her thread the needle! The really good part is about 2 minutes, 20 seconds in.

There, I Said It. When A Little More is Much Too Much.

I’ve said it many times – from my perspective as a parent, living with a limb difference, even a difference of all four limbs, is more than manageable. Once you get your new routine down, it’s even a pretty de minimis change to every day life. What a child with a limb difference needs is really just a little more: a little more time, a little more encouragement, a little more patience. Most days that little more is easy to give. But occasionally, a little more is just much too much.

A few months ago I had the flu. Once I realized I was ill, I could have sent an SOS text message but quite frankly it felt like far too arduous a task to haul myself upright from my fetal position. I was saving that for moments of absolute necessity.

My son said he was hungry. I asked him if he could  get food for himself and his sister. My then three-year-old opened the fridge and pulled out cheese sticks. Then he hauled a chair to the counter and got two bananas from the fruit bowl. I opened one eye just enough to monitor the process, sighing with relief as he did it. Me and my chills could remain huddled under our blanket for that much longer.

But then my daughter needed me. She couldn’t get her banana open, her water was on the table out of reach, and she needed to use the restroom. My son could help with some of those things but certainly not all of them.

People frequently tell me they find my daughter inspiring. But in that moment, trust me, I wasn’t inspired.

Yes, yes, I know it could have been far, far worse. But as dangerous as it can be to compare ourselves to people whom we perceive “have it better,” it can be just as dangerous to compare our situation to those of people who “have it worse.”

Sometimes I think we are allowed to wallow. We can acknowledge the hard, unrelentingness of life. We do ourselves a disservice when we only look for the silver lining and we don’t steep with awareness in the difficulty of that moment.

I don’t want my daughter to think that she has to spend life a perpetual Pollyanna. I’m sure some days she finds it exceedingly exasperating that it takes her three times as long to get the cap off the milk as  it does most people.  Some days when she hears her brother being scolded for climbing on the bathroom counter, I wonder if she too wishes she could taste that forbidden fruit. 

When we force a sunny outlook on ourselves constantly, it’s just that – a forced outcome. But when we evaluate a difficult moment, a trying, tedious day for what it is, we give ourselves the freedom to choose. And, I think, most often, we choose to embrace life.

On Waiting Children

For us, limb differences and adoption are closely related. But for my daughter’s limb differences, she all but assuredly would not be mine. I don’t pretend to understand it, it makes my head, and heart, spin madly.

What I do understand is that because of her, my eyes have been opened much wider. There was our obvious introduction into the world of limb differences. But it’s been so much more than that.

Through her, we also became acquainted with waiting children, children who wait for families. Numerous times during my daughter’s adoption we were contacted by our adoption agency. Various families had seen my daughter on the agency’s waiting child photolisting and they had prayed for her and us. Often they wanted to pass on links about other people with limb differences. Links about people like Kyle Maynard, Tony Melendez and many more. That meant so much to us. It was both humbling and encouraging.

Since then, as a family we’ve gone on to do the same. We look at a waiting child photolisting (Holt, Lifeline, WACAP are just a few) and select a child. For us, each time it’s been an older child. Then we as a family pray for that child. My husband and I pray for strength and transition for the child and for the family they will come home too. My son and his sister’s prayers are more simplistic. They pray for that child to find, in their words, a friend.

So far we’ve had the joy of contacting one family and letting them know that we were praying for them. They graciously shared their story with us, which renewed our prayers.

To paraphrase the Montessori school prayer: I fold my hands and softly say, bless the children who wait today.

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When we were getting ready to travel,  I needed to take gifts to the nannies who cared for my child. Selecting gifts was, of course, no small task. How do you thank someone who loved your child when you weren’t present? I stumbled on www.3cordshaiti.com. All of their unique gifts are made by women with limb differences. Additionally, their organization is a social enterprise and not simply a charity.