Daily Decisions Taken for Granted

Nonspeaking advocate Niko Boskovic thoughtfully reflects on his own experiences, in this blog based on a frequently asked question… Q: What are the most helpful things people do that make your life more comfortable?

Niko: I live a very strange life in which people around me make a lot of decisions about things they take for granted on a daily basis. Things like what I eat at meals, where I spend my time, and with whom. My bedtime is earlier than I might like, and I could do with a coffee more often. But I know it could be a lot worse: I could be living in a group home where I didn’t pick my roommates or even have a choice in staying there. I might not have a way to communicate or people wouldn’t have a way to be trained on the letterboard. I could be getting all sorts of alternative medicine treatments like I used to when I was little and didn’t have a way to communicate. I could be housed somewhere in an institution if I had been born in my father’s homeland. In other words, my life could look very different had it not been for a random series of things happening that made my parents, especially my mom, look at autism in a new way.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, S2C, One major event that was impactful was when my mom went to a presentation by a local autistic self-advocate named Karla Fisher. I wasn’t there, but the person who came home was not the same person who left a few hours earlier. That person wasn’t having a very positive parenting experience and seemed saddled with the enormous weight of life’s worries – not just the normal worries that I assume parents take on when they have young children, but the kind that keeps them up at night; a fear of the future and very real dread of what lies ahead.

There was a visible difference in the person who came home. She was walking with excitement and energy, fairly bursting to talk about what she’d heard and felt during the presentation, and I remember how she hugged me with a lot of love and deep emotion. She was one emotion: hopeful. That emotion evolved into determination and then steel resolve to get me in a place which was going to teach me more than life skills or good behavior. She was fed up with all the special services, treatments, and diets that were so popular in autism circles but had little support from mainstream doctors. She was finding out that maybe I didn’t need all that therapy – that I wasn’t going to “recover” from autism, and that it was still going to be okay. I would venture to say that there was a sense of comfortable peace being struck with that old nemesis, fear of the future.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, S2C, Over time, my therapies subsided, and there were life-changing hours where I got to be a camp counselor at the community center, and one of my PSW’s [personal support workers] shared his love of fishing with me. It was heaven to sit on a lake with no one else around, just us and the birds and each other for company. I loved how happy my PSW was sharing his favorite pastime with me. Somehow being there gave me a perspective, an insight, into his life that I hadn’t had and made our relationship feel more even. It was usually so driven by what I should be doing or learning.

That new period of my life was bookended with another presentation, but this time the main attraction was me. Somehow my mom heard about training that taught non-speakers like me how to use a letterboard to communicate. It was sort of a surprise because she had really moved away from all that therapy, but I guess she figured it was worth a shot to try for communication, anyway it looked. Plus, we could stay with family in Seattle where the three-day workshop was taking place. So we headed north in the fall when it was time, and arrived an hour before my scheduled session. It was in an office building in the middle of downtown by Pike Place Market. I was taken into a large room and introduced to a wonderful woman named Elizabeth Vosseler who was a speech and language pathologist from Virginia. The first thing she said to me was that she knew that I was very smart, and she wanted to teach me a way that could show this to others. It was the first time anyone had ever said that to me and meant it. I threw myself into learning how to letterboard because I so wanted to impress Elizabeth and keep that hopefulness burning in my mom’s heart.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, S2C, So when I am asked about what has been most helpful in making my life more comfortable, I would counter that with the notion that discomfort is also a teacher and a great motivator for life-changing decisions for both the person who relies on others for support as it is for the decision-makers. If my mom hadn’t gone to that first presentation, I wonder if I would have made it to Seattle – or would I have been placed in a self-contained classroom as had been the plan? Would there be any hopefulness associated with my future? Would I have spent summers as a counselor? Would I have fished on that blue lake under that blue sky? It seems random, but hope makes good things possible and within reach, which isn’t random at all. Rather, it attracts kindness and people who revel in good outcomes. Comfort should fit both the person receiving support and the one giving it so that there is mutual enjoyment in each other’s company. The worst type of support is one given impersonally or begrudgingly. Therefore, if complacency becomes the same as comfort, you’re not providing any real service besides babysitting.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, S2C, Niko Boskovic is a nonspeaking advocate from Portland, Oregon.  You can follow him on his Facebook page where you can find his writing, poetry, and other stuff.

 

The mission of I-ASC is to advance communication access for nonspeaking individuals globally through trainingeducationadvocacy, and research.  I-ASC supports all forms of augmentative and alternative communication (AAC) with a focus on methods of spelling and typing. I-ASC currently offers Practitioner training in Spelling to Communicate (S2C)with the hope that other methods of AAC using spelling or typing will join our association

Posted By on Wednesday, March 16th, 2022 in Autism,Community,Families,Nonspeakers,S2C,Spelling to Communicate

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