Over the past year, I’ve crossed paths with families that are on similar journeys to mine. Our paths have literally just crossed for merely a few moments in audiology waiting rooms, ENT waiting rooms and school car parks. Although strangers, the little C-shaped gadget draped over their child’s ear, results in an instant connection, even if only for a few moments. That mom knows what I’ve been through, she’s felt the same feelings of anguish initially. She’s spent many hours coaxing her child to wear their hearing aids or implants, and shared those feelings of desperation when the technological side of things is not going so well. The sound proof booth is a familiar place, and her Thursday afternoons are also spent in speech therapy whilst her friends’ kids attend ballet and karate. That dad can identify with, the gazillion opinions from professionals, and sometimes even friends and family, as well as the time spent on the mental lists of pros and cons and costs of the many decisions that we need to make for our children with hearing loss. Sure family and friends will rejoice over victories like communication, new words or signs. But my heart will truly rejoice with yours, fellow parent, as I feel your relief, since those milestones reached, were my concerns also. You’re a parent of a child with hearing loss and so am I – that is enough to connect us. You need not feel alone on this journey.
After returning from the Austrian FCEI Congress in June this year, I was so much more appreciative of the value of parent-parent support. Confident parents are powerful initiators of change. Sharing the journey of having children with hearing loss is a very real source of support, comfort and encouragement. In Austria I witnessed that this can be true for families irrespective of the mode of communication or amplification devices…what’s more important is what such parents have in common…the grief, the decisions, the biased opinions, the appreciation of communication and the desire to see their child reach their full potential, in spite of a situation, that can often see them being marginalized in society. After asking lots of questions and listening to many stories from parent leaders from all over the globe, I was inspired to get something similar started in the area where I am living.
THRIVE is that start.
“thrive – a verb, describing the vigorous growth of something; to prosper; to flourish; to succeed; to bloom; to make steady progress.” A word that to me, encompassed an abundance and fullness of life that overflows into every aspect of the family unit.
Our first official “THRIVE” meeting took place last week. It was mostly a social time that involved us all briefly sharing our stories as well as aspects of our deaf or hoh children that we absolutely celebrate. It was a wonderful afternoon, and I so look forward to the next meeting.
This was also a time where we discussed some core characteristics of THRIVE. I feel that the primary characteristic is that of being unbiased. Whether you speak, cue, sign or a combination of that, THRIVE welcomes you. Whether your precious one adorns hearing aids, cochlear implants or you’ve chosen not to use amplification, THRIVE welcomes you. Whether you’re opting for a mainstream education, or they are placed at a school for the deaf, or even trying something in between, you are welcome to be part of THRIVE. Our desire is to provide support to the whole family unit through supporting the parents on their journey together with paying attention to the individual perspective of the hearing siblings.
We currently have a closed Facebook group for parents only. Should you be a South African family that would like to make use of this forum for a means of support, please contact me by leaving your email address here as a comment, and I will be in touch with you. A webpage and Facebook page will also be available soon. A quote by Helen Keller best summarizes the vision of such a support network, “Alone we can do so little, together we can do so much.”
When considering the outcomes that I desire for my girls, it’s simple…I don’t want them to just check all the boxes of what the average person considers to be “normal”. I feel that that misses out much of the big picture. How are they emotionally? Relationally with each other and with Graeme and I as their parents? Do they like themselves? Have they been given the wings to show, the rest of us who think that we know what we want for them, that they can soar in ways we never imagined? My dream is to see my family and other families like mine raise the bar on expectations. Just surviving is not good enough, I want to us thrive!