Day . . . ? – Luscious, Ripe, Peaches are Good for the Soul

I’ve lost track of the days. Um, yes, tonight is Wednesday night. So this means that we’ve been here for 4 days, yes? Yes. I think this is right. And look, it appears that my writing style is mimicing my verbal output – a deevolution into broken, Bosian-Croation-mixed-up-word-order-howyousay?-uh-Engleski.

Kira and I have been working our everloving arses off. We all have. But since I’m writing this, I’m going to tell you about me. Allllllll me. And Kira, who at this point is part of me, and I of her. But first, a little bit of background. Those of you who have been following our journey over the last year have been privy to some of our challenges related to organizing this thing. We had ideas about scheduling, but, in the end, we didn’t know our schedules until Sunday afternoon. The different stakeholders made schedules for their students and each of them had different visions for how the week would look. Some teams had 3 visits a day for 3 days, while others, like Kira and I, have the same number of visits, but stretched over 5 days. Last night, Kira and I felt low. Not “omgtakemehomemama”-low, but “we’re going to work all week and everyone else is going shopping with Alma”-low. Today was to be our hardest, longest day and we were looking hours of prep work straight in it’s shifty, taunting eyes. We cried a little, and our team rallied around us, volunteering to help with anything we need. Our very own picture printing, laminating, velcroing army. Filled anew with the love for these women, Kira and I went to our room to write a social story for one of our kiddos. We were asleep by midnight(ish) and up by 6:30.

Franjo, our wonderful, loyal, doting, and constant companion, arrived at 7:30 with his typical, “Ha-lo! Are yuu ready for this day?” He gave quick road sign tutorial to Wendy, and then we were off to the races. We picked up Sejla, and met Irina in the parking lot of yet another concerte apartment building. We were to see S., who, on paper, has Cerebral Palsy (CP). The sweet mother greeted us and gave us our first introduction to Cockta (say it “coke-ta”), the communist-era’s answer to Coke. Super tasty stuff, for the record. With Turkish coffee, Cockta, tiramisu, and candy in front of us (buzzzzzzzzz), we set about getting a case history. It felt like we were putting together a puzzle without the benefit of the box to look at — a random tidbit here, a corner there — and slowly, even though we thought we were putting together a CP puzzle, it became clear that no, we were in fact putting together a very, very different puzzle. We hadn’t yet seen him, though, but for a brief few minutes at the Center on Monday. He cried from the next room and we told her it was ok if she brought him out. Suddenly, the last piece, the very center piece, dropped into the puzzle with a deafening thud. We left the house a hour later and said, “We don’t know much about much, but we do know that most certainly is NOT CP.” Oh, to be at home, with CDRC or Providence or Emmanuel at our disposal for a referral for a chromosomal analysis and developmental work-up and barium swallow. Not a bad start to the day, but an unexpected one, to be sure.

Because we are morphing, changing, evolving, melding ever-so-slightly with our surroundings, we took a coffee with our team before our next visit and quite enjoyed the the break and the lack of urgency about the visit we had coming up in an hour. Just before we left the Koffe Bar Stefana, we gave our team a crash course in PECS, assigned everyone a role, and gave the game plan. This was going to be a tough sell for this family, and the visit started off rather, how you say, chilly. Chilly in a 5th floor walk-up with no AC on a 90 degree day might be hard to imagine, but the family had tried pictures and didn’t like them. Because we are either stubborn or stupid (or, more likely, both), we didn’t deviate from our plan. We jumped off the bridge and grabbed their hands on our way over the edge. I swear, this kid had used the Google to find a YouTube video on what PECS training might look like. In all of our combined years of practice, neither Kira or I had ever seen a student march through the steps of learning requesting like D. The parents, however, remained unimpressed. We have done this, they said again, clearly starting to believe that we ourselves might be a bit slow. Kira and I exchanged a look, a nod, and went for it. We put out two pictures. Would he attend to the pictures? Would he discriminate between the uninteresting toothbrush and the beloved Binky? Yes, he would. He would do it first with prompts, then independently. He would try his old way of requesting the Binky (kissing an adult’s hand) and then become frustrated when it didn’t work. And then . . . he would return to the picture and thrust it into his beaming father’s hand. The family starting pulling out items he might request and having us take pictures so they would have them for him to use. The chill was gone, replaced by warmth and wonder. Stupid and stubborn had paid off.

Franjo’s gastronomic tour of Mostar continued with another lunch to die for. I really can’t get into this now, but if you ever have the pleasure of spending any time with Franjo, you must simply eat everything he tells you to eat. This is the path to true happiness and enlightenment.

The afternoon was a final push to prep materials for our third and final visit with N.’s family. N. is the very epitome of the phrase “bull in a china shop,” and so, upon Debbie’s recommendation, we presented a sock filled with pinto beans (literally) to help him with sensory input. I think he too watched YouTube for how to react to the intervention. Kira and I were giddy with the instant calm that came over him as we put it on his neck. It is for you to keep, we told the mom, and she thanked us profusely. But wait, there’s more! we said. We had spent the majority of our first 2 visits talking about safety concerns and how he struggles to follow the rules. It was him we were up writing a social story for, and after we presented it to mom and dad, N. snuggled up in Irina’s lap to read it with great interest. This too, we made for you to keep. Yes? the mom said, looking at us with the most amazing expression of disbelief and joy. We then introduced a keychain with their top 5 rules for him, to pair with the social story. How did you do this? she asked, flipping through it. She handed it back to us and we said, no, we made it for you to keep, and here is a bag of other options for you to try for other situations. No! she said, her expression now approaching the surprise make-over recipients on Oprah. I think you can guess how the whole family reacted when we gave them a spinning whirley-gig to keep. She told us that we were not what she expected . . . Kira and I hung on Shejla’s every interpreted word . . . she thought we would come in and tell her what she had done wrong with him . . . we instead were so warm and open and made her feel hopeful for him. This family has, every day, put out a beautiful spread of food and drinks (grappa yesterday ) and, as we say in the biz, this mom is “on it.” She asks good questions, independently does research, follows through, and believes in her child. N. is high-functioning, a boy who, in the States, could quite easily be mainstreamed and independent within months of entering public school. He is the boy who has made me weep on more than one occasion, because here, they kicked him out of kindergarten. What we gave seemed like so little, but I was so thrilled to have given her a little bit back, and to change her opinion of SLPs, pediatric professionals, and Americans.

Today was a good, good day. I don’t remember feeling like this about being a speech-language pathologist since the first days of grad school. There cannot be any high, chemical or otherwise, that will top teaching a child a skill that will help them communicate with the world around them. No can be in this way. No can. In the States, we so often see children who have had oodles of therapy, parents who have all the information they’ve ever wished for, and what we offer is solid and dobro, but the system can bog you down. Tonight, I am thinking of the peaches Lucinda bought at a roadside stand yesterday. These weren’t supermarket peaches, but were instead of the blemished, imperfect heirloom sort. Oh! But they tasted so very lovely in my sour cream and cereal this morning, so perfectly ripe and of the season. These children and families are like those peaches. They are perhaps blemished, imperfect in the eyes of many. But they are ripe. And ready. Even that which might to others look unacceptable, undesirable, and worthy of nothing more than the compost heap, can, with the right care, be sweet beyond your wildest dreams.

-kcb

(btw, I have great photos to go with this post, but our internet is, how you say, not with big lucky right now. hopefully tomorrow i will be able to share. thanks for your patience.)

Meeting Number 10 – The Fight or Flight Response

Well, this is it. This was it, I should say. This was our last meeting stateside. When we left each other last night, we didn’t say goodbye, but instead said things like “See you in Mostar!” and “Travel safe!” Uhhhh, wha? Really? The next time we come together as a group, we will be in Bosnia. Yes, my friends, this indeed really is it.

our working agenda, mid-way through the meeting

The meeting proceeded as you might imagine it would. Lots of logistics, some minor freaking out, some refining of the little details that we tend to focus on to soothe our unease about the bigger picture. We talked about food and eating and schedules, and, no matter how you slice it, we’re just this side of clueless about how this is all gonna go down.  Will there be a kitchen? Dunno. Will there be a cafeteria? Dunno. Will we be in taxis? Who, exactly, is going with us and where are we going? Dunno and, yup, you guessed it, dunno dunno. We expect that we’ll be working with families from around 9-1, having a break from 1-3, then heading back out and about from 3-5. While they’ve told us that we can work with the families until 8, we’d like to be back in our rooms by that point, churnin’ and burnin’ through sheets of laminator film and rolls of Velcro.

And speaking of laminators (ahhh, smooth segue). . . we’re bring what might best be classified as a ton of stuff. Laptops and laminators, communication books, switches, whirley-gig toys, personal hygene kits with gloves and sanitizer and such, chewey-tubes, binder rings, Oregon chocolates . . . the list goes on. All of this must be transported, so we had a lively horse-trading session to see who would take what, during which Gina confessed that she actually stepped on the scale holding the batteries that she’s providing to see how much weight they would add to her bag. Much of it we’re leaving there, but some of it must come home, and I think we’d all rather fill our bags with Bosnian goodies to bring home rather than left-over laminating film. Or maybe that’s just me.

Soliday, Wendy (in Soliday's hand), Megan, Brooke taking notes, and a table full of schwag.

There was a signature pep talk from Soliday — “Dial your anxiety down to nothing and just be excited,” she lovingly advised. We heard a little bit from Wendy and Traci about the phone call they were able to make to one of the families. In Wendy’s words, the child sounds as if he has “classic ASD,” with perseveration on a certain bus route and verbal output that is based almost solely on that topic. Mom is worried about the onset of puberty, and we were reminded that yes, even though we don’t know these kids, we know these kids. We know this mom too, because really, I’ve yet to meet a mom (myself included) who isn’t worried about the onset of puberty.  We talked briefly about the Tuzla University students who we are paying to bring along even though some folks in Bosnia don’t quite understand why. They don’t understand that we were students once, all of us with a fiery, unquenchable thirst for all things SLP or OT. We were lucky. There was water to quench that thirst in the form of professionals in the community who took us under their wings, whispering the trade secrets in our ears, preparing us to fly on our own some day. I wonder if they know that those wings are now carrying us halfway around the world, and that their trade secrets, so lovingly passed on to us, might now be used to shape the foundation of our professions in a country just beginning to find it’s way toward supporting people with disabilities. The work we do with families will be important, but no more so than that which we will do with the students.

I would be remiss if I didn’t briefly mention the discussion we had about the Roma (aka the Gypsies). I believe it is adequate to say that a) we’re all considering buying bling to replace our valuable jewlery, b) we all need Peter to set up the erase function on our phones like he did for Kira, and c) we shall not be catching any babies that are flung at us. I am actively projecting a Roma-free zone around myself at this very moment. One apparently cannot be too careful.

We ended with a 1-word check-in. Manic. Motivated. Thrilled. Excited. Anticipatory. Revved. Better. Bipolar. Cautious. Curious. Fine. These were our words. When Brooke and I got in the car to drive home, we added a few more: flush, heart beating fast, a little short of breath, fight or flight setting in.

special gift for Nice Ladies! number 1 Bosnian beer treat!

A beer sounded mighty fine at that moment, so we headed over to 4-4-2 on Hawthorne for some chevapi and Nektar. The bar is owned and operated by an older Bosnian gentleman who, upon hearing that we would be in his home country in a week, wasted no time regaling us with tales of the sheer genius of the Bosnian people, “the smartest people on Earth.” He brought out a Life book from the mid-1960s titled “The Balkans,” (want!), and glossy magazines about the Bosnian pyramid and these crazy round stones from Atlantis.  His thundering Bosnian bravado was tempered ever-so-slightly by a younger Bosnian man who sat at the bar. He shook his head and chucked as we were regailed with some highlighs of the long and storied history of the region, nodded somberly when the conversation turned to the topic of former school-mates turning against each other in war. Both men gave us useful tips for our trip (“Don’t eat in places with pressed napkins!” “You must drink coffee 3 times a day!”), not the least of which was, “Don’t smile so much and don’t be offended when they don’t smile at you. Why would they smile? They don’t know you.” Among my many hopes for this trip, I now count among them that our hosts will think well enough of us to smile back by our last day.

And so, I will say to you now, dear reader, what I said to my colleagues last night: see you in Mostar.

-kcb

Yeeeehaw! It’s a round-up, y’all!

An information round-up, that is. Tick-tock, tick-tock, our departure dates are inching ever closer, and there have been some developments since my last post. For your consideration:

• I wanted to quickly draw your attention to our Benefactors page and/or the “Our Peeps” links at left. I have added links to the corporations who have so generously donated supplies to our trip. Please visit their sites and, should you be in the market for any of their wares, buy from them. These are corporate citizens that share our vision and sense of responsibility to all children.
• There was a meeting on April 25th that I wasn’t able to attend. I was in Arizona basking myself like a collared lizard on a sunny rock, trying to stave off the moss starting to grow between my toes. Anyhoo, my esteemed colleague Brooke took notes, which I’ve summarized below:
• We continue to have some logistical questions, like scheduling, but other aspects of the trip are beginning to firm up. Mirna continues to work in Mostar on our behalf, interfacing with families and making sure we have clean sheets.
• While working with the families is our primary mission, we will be focusing on training the 5 University of Tuzla students who will be working with us as well. We’re also working as a “forward team” for the SPG:CSI team who will be coming to Mostar in 2013. There is also the possibility of multiple translators and representatives from the children’s schools joining us on our home visits, all to see what we’re doing. In summary, we need to be on our best behavior.
• The ongoing saga of a dress-code continues! It seems that we’ve settled on “finger-tip” length or longer skirts/skorts/shorts, no spaghetti straps, and other generally “appropriate” work-wear. Slippers for the homes are a must, and lucky me, I found FastFlats on sale at Freddies last week!
• There was the start of a conversation about packing. What are we taking, who is taking it, what can we buy there, and so on. Laminators, batteries, electrical converters, paper, printers, computers, water purifiers, oh my.
• Anna from SPG:CSI was kind enough to send us an email with lots of details about Mostar and Bosnia in general. One of our questions is about the best way for us to communicate with each other while we’re there, and she had some great advice. Not that I know what an “unlocked” cell phone is, but it’s good to know that we can do it if we need to! She also reiterated the not-to-be-broken rules of no bare feet and no wet hair, as this causes the locals to worry for your health. The thought of blow-drying my hair while there makes me sweat just thinking about it!
• The most recent conference call with Mirna was chock-full of good information. There’s internet access on-site! Whoot! The final number of kids we’ll be seeing is 16, and it has been confirmed that we will indeed be seeing the children in their homes.

Finally, Debbie shared this video with the group this week. I believe that it should put to rest, once and for all, the eternal question, “Why are you going there?”

I am RIDICULOUSLY excited.

-kcb

What I’m really thinking about . . .

I’m not surprised AT ALL that Kelly is a little twitchy about there only being 3 meetings left before we leave. Frankly, for me, that translates to MONTHS before we leave. Which means, really, my biggest priority is attempting to make a list of what I still need to purchased.

For example, I’m a hat lady.

Meeting Number 7 and Not Number 8

Alright, alright, alright. Look, I know this is getting to be a really bad habit, this not updating the blog more regularly and letting way too much time pass between when something happens and when I write about it. I know this. But dang, life is busy. This too is blog-worthy, I suppose, isn’t it? This idea that we are all so busy being mamas and partners and workers and grocery shoppers and distance commuters and community organizers and entrepreneuers and toilet scrubbers and a million other things, that we are doing this project in our “free” time, squeezing a few more drops from a pretty well squoze-out ol’ grapefruit. So, there you have it. I’m a dried up hunk of citrus and that’s my excuse for not being a more dedicated blogger.

Ah! But let us not dwell on my many shortcomings and instead focus on all of the big news that we learned of at our February meeting!

Meeting Number 6 – We are flexible willows in the breeze

I keep starting this post and getting a line or two down, then abandoning ship because I just can’t summon up any words. One would think that spending a substantial part of the last week in bed would have given me ample opportunity to get this written, but one would be wrong. Apparently painkillers aren’t conducive to my overall productivity. Good to know. The acute phase of my neck/back flare-up now having passed, I’m having another go at gettin’ this sucker done. Wish me luck.

So, it was to be a shorter meeting, as there had been a (ahem) communication hiatus with the mother ship in BiH and there just wasn’t much to report and/or act on. One look around the table and any of us could see, though, that there must be some news to report, because we had a new, sunshiney face sitting with us.

Meeting Number 5 – A Little Sharper Focus

Our November/December meeting is, as they say, in the can. As Megan noted below, we were missing Wendy, Lee, and Traci this go around, which was a bummer. Compared with some of our other, more intense meetings, this one was decidedly low-key. We chatted a bit, diligently worked on our Thank You notes and had a brief discussion of finances (which continue to improve thanks to the continued generosity of our supporters). We learned of Mirna – an actual real, live person who like, is there now thinking of us, and will be working on selecting our families. Wow. I mean, this must mean we’re actually going to do this? Another indicator that this has not all been a training exercise was that Megan has set some deadlines for big, important things. Like buying plane tickets. And travel insurance. And turning in copies of your passport. Ugh. My passport photo is SO awful . . .

Meeting Number 4 – Dij me pet!

As Sharon noted in her great post, below, we had our 4th meeting last Tuesday. With the exception of poor Wendy, who was suffering from a bad headache, all team members were present and accounted for. So much easier than having half of the team out on Distance Service trips and needing Steve Jobs on hand to help us have a conversation.

Regular old Saturday-NOT!

Let’s see . . .
two loads of laundry,
pick up the mail,
pick up milk,
Oh, and that’s right,
Talk with the Cabinet Minister to the Vice President of Bosnia!
I wish I could say I wasn’t nervous. But really, I was a mess. Our project manager, Megan, had all these smart ideas of what to address. I just felt like I should apologize for not being fluent in Bosnian. Or knowing how to say their names correctly, or how to address government officials.
And then I could apologize for not exactly knowing what our plan is-I mean I’m a planner. When I have nothing else, I have a plan.

Drumroll, please…

Well, its official: we’re going to Mostar! As a direct result of the truly overwhelming financial support of our families, friends, and colleagues, we have determined that this trip is once again financially viable. Boo-ya! We have currently raised $6000 toward our $8000 fundraising goal and feel confident that we can raise that last 2k before our December 15th deadline. Please continue to donate and to spread the word about our trip. The sooner we reach that goal, the sooner we can get back to the business of planning this thing and focusing on the needs of the families we’ll be working with.