We are delighted to reprint with permission a blog post that gives a unique volunteer perspective on the recent family conference! The author, Chantal Mendes, volunteered taking care of the kids at the children’s program. She describes herself as follows: “I started out as a journalist, became a scientist and am now happily a mix of the two. I currently do clinical research at Partners HealthCare and just applied to medical school, wish me luck!” This blog post originally appeared on her Journalist Doing Science blog.
By Chantal Mendes
This weekend I volunteered at the NAPVI family conference for parents of visually impaired children that was organized by the National Association for Parents of Children with Visual Impairments (NAPVI) and the Jewish Guild for the Blind and it was literally a life-changing experience to the point where this blog post will not do my feelings justice. I love caring for children and have been doing so since before I reached double digits but this was the first time I had ever worked one-on-one with kids who had visual impairments and/or developmental delays and it taught me so much more than I would have imagined.
I have always felt a little uncomfortable being with children who aren’t typical*, but only because I just didn’t know how to act. I think that’s fairly normal but it’s something that people struggle with because it makes them feel bad for some reason, like they are wrong for feeling out of their depth. I don’t think that’s fair. Instead, I think that we should all just acknowledge that sometimes it is disconcerting when you don’t know what to do and that’s why it’s important to get experience doing things that bring you out of your comfort zone so that you can learn how to behave in the kind of situations that you may have difficulty with, like guiding a blind child or playing with one who is in a wheelchair and has limited mobility. Because this is something I’m not great at, I am so glad that I was given the opportunity to work with some amazing educators and volunteers who helped me become comfortable taking care of children with a host of visual and developmental issues.
What I never realized is how fulfilling it would be. I met so many awesome little kids over the one and half days I volunteered at the conference and was really touched by some of them. One of the little boys in particular I decided I wanted to steal away because he was just so adorable. A was three and had retinoschisis (loss of vision due to abnormal retinal behavior) but was otherwise typical. He couldn’t see very well but that didn’t stop him from running around like a little puppy in his tiny sneakers (which he WOULD NOT take off, even for yoga time). I got to talk with his parents later and they were both such sweet people, I was amazed at their positive attitude. It was hard to think that this giggling little boy with his dimples and thick glasses will most likely end up completely blind. It really drove home the point that this is why we do research. Not to publish papers or to get our names out there, we do it so that one day little boys like A can grow up to have all the experiences a sighted kid gets to have. There was also M, a toddler who couldn’t see but ran around giving everyone hugs, S who may have been autistic in addition to low vision and who just wanted to cuddle, and C, a beautiful little girl who couldn’t walk or talk but loved looking at bright colors.
I was able to work one-on-one with several children with different issues and it was such an education. I learned how to be a sighted guide, how to appropriately help a child so you aren’t doing everything for them (so they learn to be more self-reliant), and different ways to interact with children who are extremely unresponsive. I also learned that many children with visual impairments have a host of other problems as well, which I had never realized before. I think what struck me the most though was how sweet they all were. I was amazed at the ready smiles on their faces and loved the willingness with which they would seek you out for a hug or hold your hand. By the end of the first day I wanted to adopt half of them.
The highlight was definitely dinner Saturday night which brought together the organizers of the event, parents, and all the kids in one big space. They started playing music at one point and, after one brave boy stepped out onto the dance floor to show off his moves everybody rushed to join. Parents danced with their children who danced with their friends and everybody looked unbelievably happy. There were little ones running around underfoot and children happily dancing along in their wheelchairs. It was a beautiful thing to see and definitely brought tears to my eyes. My heart went out to them all, especially the parents who work with their kids all the time to help them to attain a better quality of life. I only got to play with them for a day and a half and while I loved the experience, it was definitely a challenge and I can’t imagine how hard it must be for the parents. I ended the weekend completely exhausted, bodily and mentally, but so happy that I had gotten to experience the wonderful support there is for families who struggle to be advocates for their children every day.
*This is the term that is generally used to describe a child who is at the appropriate stage of development for his/her age and does not have any motor or sensory disabilities.