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.
(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.)