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.

Purpose: The Line of Demarcation

 

Last year, we had the opportunity to reunite my son with his foster mother. It was a beautiful moment. A moment that encompassed both joy and the shared recognition of loss. His foster mother’s face shone with pride; the fifth and final baby she had fostered had returned to pay his respects. As I watched the two of them together, I was so grateful that I bore witness to that moment. She loved him and he loved her. My admiration for her only deepened.

Our visit took place in her new house, a home different than the one in which she’d raised my son. As we sat around drinking cold water out of sweating cups and laughing over stories about the boy who is our common destiny, I began asking about this new place. In looking about, I noticed that the concrete columns that supported the house were two-toned, and I inquired as to why.

I was told that that when the massive flooding had occurred many months before, the downstairs had been underwater for approximately three months. The white line line showed the depth of the water.

We were told that the family, young and old alike, lived upstairs for three months. When we asked what they ate given this difficult living condition, the foster mother’s son-in-law grinned and replied “fish.” It turns out they caught the fish out of the windows.

The documentary Happy opens with a rickshaw driver from India. He talks about how his feet and head burn in summer from the heat of the sun. But he says the monsoons do not bother him because he knows his wet clothes will dry when he runs with the next passenger. He talks about the joy of coming home and hearing his son call out to him “Baba. The narrator says that according to a survey, this rickshaw driver is as happy as the average American.

It is not wealth, education or heritage that divides the haves from the have-nots – it’s purpose.

Without purpose, we exist. With purpose, we live.

The Dreaded Three Letters

Most people groan when they hear IRS, but for families dealing with special needs, the dreaded three letters are often IEP. Frequently IEP meetings and horror stories go hand-in-hand. We had our IEP meeting recently and more than lived to tell about it. As it’s supposed to be, everyone in the room (and there were a lot of people there) had my daughter’s best interest as their goal.

Here are a few things that we’ve learned:

There is a difference between medical and educational OT and PT. The primary difference, if I understand it correctly, is that educational OT and PT have a direct correlation to learning or educational tasks. For example: educational OT covers things like cutting, writing and coloring. Medical OT, on the other hand, deals with daily life aspects like dressing, eating, grooming. The line between medical and educational PT is a grayer area when the goal is mobility. It’s pretty hard to differentiate between walking at school and walking to just get around in general. However, an example of educational PT might be getting in and out of a classroom chair.

There is APE (or adaptive PE) too. I mistakenly assumed that the IEP wouldn’t encompass physical education. As it turns out, it does. There is APE even for the preschool age.

One size doesn’t fit all. The problem with standardized tests is that most of us can’t be reduced to a fill-in-the-bubble. This is particularly true of differently abled children. This isn’t meant to be a political statement, but rather a recitation of a fact. For example one of the questions on the test was: Can your child walk up and down the stairs? The answer for us is no. The next question was: Can your child crawl up the stairs? Again, the answer is no. However, there wasn’t a question that simply asked: Can your child go up the stairs. The answer to that question would have been yes.

An IEP includes a numerically scored portion, which reflects the raw data or numbers. This compares your child against a standard score of similarly aged children. There is also a narrative portion where the educators discuss their findings, which basically means they explain the numbers.

All of the educators we dealt with took great pains with the narrative portion of the IEP. Even though our daughter had a lower score in the category dealing with physical ability, the educators explained that those numbers don’t accurately reflect her true capabilities. They pointed out using language like “it’s significant to note” that she does things like goes up and down the stairs in a modified fashion. And they mentioned qualities that can’t be measured by any test. Things like determination, a good attitude and willing spirit. The narrative portion painted a better overall picture of my daughter than the numbers did. I was also thrilled to see that the people who will be teaching my daughter, saw and admired some of the same qualities in her that I do.

The numbers are just numbers. Even though I know how capable my daughter is and even though I know how much she’s achieved, it was still demoralizing to hear that in some areas she scored the equivalent of a child much her junior. But the numbers are just that, numbers. They are a means to an end. In this case the end being a learning environment that best meets her needs.

I was quite relieved that the people we met with did their jobs and did them well. But I also know that no test or curriculum will ever tell me some of the things I already know about my daughter. Things like how she crosses her eyes when she doesn’t want to do something to make me laugh or about how she leans way into me when I read her a book. But I’m also well aware that an IEP wasn’t designed to tell me these things.

I want my kids to be lifelong learners, thinkers, creators. I want to cultivate in them a spirit of curiosity that can only be quenched by living fully and purposefully. I want them to be educated and I want them to learn from the school of hard knocks. I want them to be well-read and well-traveled. I want them to be empathetic and compassionate. I want to fan in them the sparks of passion early so that those fires may long burn bright. The only individualized education program that can foster this, is the one that I put into place every single day.

The Sunny Side of Life

So while we’ve certainly had moments that have been difficult, by far most of our encounters with other people regarding our daughter’s limb differences have been more than pleasant. I mean, what parent doesn’t like to hear how beautiful her child is. Or there’s the man outside my son’s school who sees my daughter sideways walking along the chain length fence while we wait. He approached  me a few weeks ago and said that on the mornings when he doesn’t feel like lacing up his running shoes, he thinks about my daughter and how hard she works and it forces him to hit the pavement.

My favorite moments, however, have come from discussions with other kids. Those discussions frequently are centered on her finger. I don’t know why, but younger kids tend to be fascinated by the one finger but rather blasé about only one arm. Shortly after returning home from our adoption trip, every day for a week, one of my son’s classmates looked at my daughter and would remark almost wryly, “still only one finger, huh?”.

Recently another little boy from my son’s class asked my husband about my daughter’s finger wondering where her other fingers were. “She only has the one,” my husband told the little boy. The boy thought about it for a moment and then he replied, “just give it some time.” I half expected the sage comment to come with a pat on the back. 

Almost any parent of a differently abled child will tell you that because their child’s differences become their new normal, they almost never think about the differences. For us packing up the U-cuff and adaptive spoons became second nature just like packing diapers in a diaper bag once did. I see my daughter’s differences, but rarely anymore do I notice them. Those differences are just a part of what makes her perfectly beautifully her.

I think perhaps it’s like when people say that they don’t see race. On the one hand, why in heaven’s name wouldn’t you see color? It’s part of what makes us who we are. On the other hand, maybe what people actually mean is they see it but don’t notice it. But none of that was the point. The point was that sometimes when strangers approach us, for better or worse, it kind of leaves me bemused. It’s almost like, ohh, you can see that too?

I love this life of mine – on days when it’s sunny side up and even on days when it’s scrambled too.

A Peek At Our Schedule

I’m always curious about what other people’s therapy schedules look like, which means you likely are too. Here’s what we currently do:

OT/PT  - We go twice a week for 1/2 hour of each (2 hours total a week).

Shriners – We had an initial visit with an orthopedic surgeon shortly after arriving home. After that we were referred to the CAPP (Child Amputee Prosthetic Program) clinic where we saw a PT, OT, prothetesist and pediatrician. Because we aren’t currently pursuing prosthetics we will be returning every 6 months. 

HTP – We don’t home therapy on a set schedule, it mainly just kind of happens. The best therapy seems to come through play. But she does have a balloon attached to a string that hangs on her door. She lays on her stomach, side and back and kicks it. She practices sideways walking either along her low platform bed or alongside the couch after we’ve removed the couch cushions. She also does pivots using  a combo of the bed or couch and ottoman. Her PT also suggested putting those balls with suction cups on the glass sliding doors and having her walk and transfer those or transferring magnets using the frig or washer/dryer.

Time Spent Learning – I’ve come to realize that the one thing my daughter needs most is time. She needs time to figure things out, time to get frustrated and time to find a new way. Life for her is a lot about trial and error. She is so fiercely independent and in order to foster that independence, we need to respect her need for time. It isn’t always easy or practical, but when we can, we give her however much time she needs.

Sometimes that means sitting in the post office parking lot for 15 minutes extra so she can buckle her car seat herself. Sometimes it means an added twenty minutes letting her scoot along the filthy grocery store floor grinning because she’s doing it herself. Sometimes it’s just pausing for a few extra seconds before offering to help to see if she can do it (besides, she’s going to refuse the offer of help anyways). Time is always a most precious commodity and gift.

Miscellaneous Time Suck Category -  If there is one thing I’ve spent an obscene amount of time on, it’s been dealing with insurance. The first six months or so home were a pretty intense gamut of doctor’s visits. This was as much due to just general adoption-related stuff (immunizations, etc…) as it was the limb difference.

But there has been a fair amount of dealing with the insurance regarding DME, etc… I’ve also thought I was pretty conscientious about looking over our medical bills pretty carefully. But given that they’ve now gone up in volume, I’ve taken to scrutinizing them even more closely and I’ve found a few errors. Now, I’m even more careful about looking them over. I’m also so glad we have money in Flexible Savings Accounts (FSA) through our employers for medical expenses.

The therapy appointments, and chauffeuring that comes with them, are not exactly glamorous. Yet I am reminded of Ghandi’s statement, “In a gentle way, you can shake the world.” Whose world are you shaking today?

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You can read my post on siblings and special needs here at the always wonderful blog, Ordinary Miracles and The Crazy Nine.

An Added Dimension

There was a time when I heard people say that after a life-changing circumstance that they learned to see beauty differently and I was a bit lost. I mean I’ve always seen beauty and realized as Caroline Ingalls cautions, that beauty is, as beauty does.

But now I know what it means to see beauty a little differently.

It’s not that I don’t see and admire toothy grins, curly pigtails or even a well-heeled put together woman. Of course I still see and admire all those things. I admire physical beauty  in those I love as well as strangers on the street. But now there is an added dimension.

When I see an Olympian who runs with a prosthetic leg, I don’t think, wow, that man runs and he only has one leg. I think about how strong his leg must be. I think of the endurance he must have built up, and about how many times he must have fallen and then gotten up again.

When I see an therapist working with a child with learning disabilities, I have a new appreciation for her patience, the calmness of her voice, the steadiness of her manner even all the while admiring her cute shoes.

In the beginning we’d see our daughter and we would all marvel at what she could do. We were constantly elbowing each other, saying, would you look at that. These days I still see what my daughter can do. But I don’t see it as an accomplishment, I see it as her.

I realize that who she is and what she does have an intrinsic link, as is in all of us. She is always breath-taking,, but her fighting spirit gives her look an added dimension. When she works and works and works and then shouts, “I did it” having conquered the task, her face is soft and glowing, her eyes, framed by her dark lashes, shining from within.

Beauty isn’t only skin deep. Sometimes it’s an outward expression of our inward selves. It’s capable hands that garden, nimble fingers that make piano keys sing. It’s strong, chiseled arms that make children fly through the air, it’s full, pouty lips that kiss wizened hands.

It’s a beautiful, wonderful world.

Minor Modification, Major Impact

As I’ve said before, our daughter is fiercely independent. She personifies if there’s a will, there’s a way. But we have done a few things in the last week or so that have made a big difference in her life and by extension ours.

We have an awesome OT and PT. It’s pretty common to hear other families saying that their OT highly recommends a certain device or prosthetic. Our OT takes a trial and error approach. If something we try works, then awesome. If our daughter does better without, that’s awesome too. This approach has really worked for us and I think is a real confidence builder for anyone in an adaptive situation. It’s probably pretty validating to hear that what you have or what you’ve adapted at age three works better than anything any expert has invented.

Here are the modifications we’ve made recently:

Car Seat - Last week I told the OT that we’ve been having trouble with the car seat. When you only have one arm, and that arm is less than three inches, well, buckling your car seat can be pretty difficult.

The OT put a piece of velcro and a soft pad on the car seat buckle, like so. It’s now much easier to push against the buckle and snap it into place. Problem solved.

Pet steps – Another source of frustration has been the fact that our daughter couldn’t get on and off the couch by herself. She’s tried just sort of hanging off and then dropping but the couch is too high and the floors too heard. Someone suggested we buy pet steps, and this weekend we did. They work perfectly.

Eating in the car -  So this is such a small thing, but it was by far the greatest source of frustration. (Aren’t they always?) Up until now, our little girl  has been unable to snack in the car. Add to that an older brother who can and now you’ve got a real problem. We’ve tried all sorts of things (including a moratorium on eating in the car) and none worked. Finally, finally, I realized that if I just turned down a plastic baggie so that it was pretty much freestanding and balanced it on her arm, it made a perfect cup because it’s malleable and moveable.

Thankfully she’s at an age that she knows not to eat the plastic, which makes this work. We have had a few car snack casualties, but nothing substantial. I only wish I had thought of it sooner.

All of these are such small changes, yet they’ve given one little girl even greater independence. I’m not sure if these were Duh! or Aha! moments. Either way, they work which makes them happy moments.