There is a girl. She is smart, funny and playful. She is quite the fashionista. She wears the cutest puffs, and she is known to wear the prettiest outfits with even prettier sparkly light up shoes! She gives the biggest hugs and wettest kisses. Let’s call her Banana. Why? Well, when you first see her, she usually says, “Nu-nan-na,” one of the few words that she knows. Yes, Banana has a disability. She has Trisomy 13 also called Patua syndrome, a very rare genetic disorder. Common abnormalities presented in Patua syndrome include intellectual disability, microcephaly, structural eye defects, hearing impairment, motor disorder, spinal defect and abdominal defect, just to name a few. Banana has several challenges, but she does not let it slow her down. I mean, she has always been a fighter and, notably, has beaten many odds since conception. Fifty percent of trisomy 13 pregnancies result in miscarriages or stillbirths. If they can survive to gestation, only 5-8% live past the 1st year. According to her parents, Banana was not expected to live past her 1st birthday. Banana is 8 years old today. As you may imagine, Banana is a determined individual. She goes and gets what she wants, but because she is predominately non-verbal, she may not express her needs in the most conventional manner. This has created a lot of problems for Banana. Earlier in therapy, Banana would often spit, scratch, bite or fight to escape therapy or to gain access to an edible or preferred object. Her team spent a lot of time decreasing these behaviors, and, for the most part, they were successful. However, I noticed a change in Banana. She lost her spirit. There has to be more to Banana than just her negative behaviors.
As LEND trainee, I had to pick and read a book from a list of stories and autobiographies of characters and individuals with disabilities. I chose “Out of my Mind” written by Sharon Draper. Once I read the synopsis, I immediately thought about Banana. Written first-person, the story was told entirely through her thoughts. The main character of the story, Melody Brooks, had severe Cerebral Palsy and, consequently, was non-verbal. The physical challenges that Melody endured daily were quite similar to Banana’s. However, Melody was a genius, but no one could have known using traditional measurements of intelligence. Consequently, Melody’s cognitive abilities were mistakenly associated with her physical impairments. Often the adults in her life, aside from her parents, would not acknowledge her or talk to her. When she wanted to tell her parents or teachers something important, her behaviors were described as “erratic,” but this was her way of communicating. Does this ring any bells? Melody was going out of her mind until she was given a device that allowed her to communicate. Although she continued to experience prejudice from her classmates and teachers, she was able to prove that she was intelligent; moreover, that she was an individual.
So what does this have to do with Banana? We spent much of our time teaching Banana new skills and decreasing aberrant behaviors, but we did not take the time to get to know her, to communicate with her or have her communicate with us. Reading this story helped me realize that I did not consider Banana’s individuality. For example, Banana spends a great amount of time on the bus before therapy. I had to think, “How does she feel? She is probably cranky or, at least, hungry.” So now I ask Banana, “How was your day?” We play games and sing songs before starting a session. I implement frequent play breaks between targets because, well, she deserves it. I ask her, “What is wrong?” or “What do you need?” when she cries spontaneously. Often she would say, “Nu-nan-na” but just asking her makes her feel better. We have developed our therapeutic relationship. The sessions are now filled with more hugs and many attempts of wet kisses. We dance, sing and clap. She smiles when she sees me, and she grabs my hand to play with her. She wants to know my name. Her personality is surely beaming. She is funny, playful and smart. Things may go bananas, figuratively and literally, but I have learned to put myself in her sparkly light up shoes because I want to know what is going on in that brilliant mind of hers.