Sometimes the universe puts guiding stars in your path, especially in challenging times. Tara Tompai, my daughter’s Early Childhood Vision Consultant is mine. She instilled in me the confidence that my daughter’s vision would improve and the understanding that there is lots to be done about it. There are strategies and interventions to help children with Cortical Visual Impairment develop their functional vision and they deserve to be given these opportunities every single day. What I have learned by working so closely with Tara is not necessarily what to think but how to think, and this is important because every child is unique and will need a personalized approach.
This Fireside Chat is my most recent initiative at CVI Journey. Its purpose is to create opportunities to engage professionals with deep CVI knowledge on a one on one basis, so our community can benefit from their insights and experience. Please, help us share this blog with other parents, and if you want to participate in a fireside chat, please contact me. We are looking for volunteers to step forward.
Tara Tompai graduated from the Intervenor for Deaf-Blind Persons Program and then went on to complete the Orientation and Mobility Program. She began her career at The Canadian National Institute for the Blind (CNIB) in 2002. In her role as an orientation and mobility instructor, she worked with a wide range of both young children and seniors, teaching them how to travel safely and independently. It was there that she developed a strong passion for early intervention and this prompted me to complete an Early Childhood Education program. When her own children were young, she worked part-time as a professor at George Brown College in the Intervenor for Deaf-Blind Persons Program and at the Helen Keller Centre. It was in 2013 that she began working full-time as an Early Childhood Vision Consultant at Surrey Place.
As the mom of a child with CVI, I was excited to receive Tara’s insights to some questions that have been on my mind. My questions and her answers are below.
– Cindy
Tara, what inspired you to work with children who have CVI?
When I was seventeen years old, I did a school working placement. It provided me with the opportunity to receive four school credits if I worked for four months. I did not know where I wanted to work so my teacher suggested I work at a place called Variety Village. This school placement then turned into part-time employment for several years. For those of you who do not know Variety Village, it is an integrated sports facility in Toronto where they run a variety of programs for children, teens and adults with diverse abilities. I fell in love! It was there that I met children and adults with varying special needs including CVI and other visual impairments. This prompted me to take the Intervenor for Deafblind Persons Program. After completing that program, I continued my education in orientation and mobility and early childhood. I knew very early on that I wanted to be in early intervention. I wanted to be one of the first professional connections parents made.
What has been your most memorable moment?
My most memorable moment happened many years ago when a little boy I worked with taught me to never judge an individual’s cognitive ability by their physical, language or visual limitations. What he taught me, and I will never forget, is at no time should we assume that a child does not understand or have an interest to know what is going on around him just because he is unable to talk, walk or eat food by mouth. Over the years I have worked with so many amazing and dedicated parents who take the time to explain concepts, bring the world to their child and take advantage of teachable moments, and I see how beneficial that is for their child’s overall development and learning. It is parents and children who bring so many memorable moments! It is so hard to choose one!
You have worked with many parents who have children with CVI. Emotionally speaking, I’m sure you’ve seen a wide range of emotions and coping techniques. Parents can feel a roller coaster of emotions—I know I have. Can you suggest 3 ways families can cope when they feel overwhelmed?
This is a difficult question. Because I am not a parent of a child with CVI, it is hard for me to provide suggestions on how parents could possibly cope when they are feeling overwhelmed about their baby’s diagnosis or about so many unknowns. However, through working closely with parents, there are some common things that stand out to me. The first is that they surround themselves with people who are positive, supportive and have an open ear. This might be their own parent or a friend. They might connect over the phone, FaceTime and when possible in person. This person is the one who gets excited when they share what might be to some a very small step in their child’s development, but to a parent with a child with a special need this is a very big step and it is something to be celebrated! Some of my parents have also connected to other parents who have children with CVI or a visual impairment. They meet up, share stories and they laugh. They find it refreshing to be around other parents who share some of the same experiences. I also think it is okay to be overwhelmed and to cry. Some parents have told me that once in a while they get a good cry out and then they move forward with what they have to do, and they feel just a little better. Other parents have told me that they take a break from appointments with other professionals and they take the time to just hang out with their child.
Can you tell us a little bit about emergent literacy and why it’s important to read to kids who have CVI? What are some of your favorite books?
I work with children prior to them attending school and in early intervention. One of the areas that we can focus on is emergent literacy. For all children, there are stages in achieving literacy and we know that working on the development of emergent literacy skills helps to pave the way to potentially mastering more complex literacy skills. Children with CVI require a special approach because of their challenges with accessing the visual world. “Emergent literacy could include listening and speaking, signing, using objects, pictures, gestures or any combination of ways in which a child understands and interprets experiences.” (quote taken from: www.pathstoliteracy.org/overview.emergent-literacy). Reading to your child has been identified as one of the most important activities to do with your child to give them the best start to literacy and this does include our children with CVI too. Simply reading or telling a story provides an opportunity for language interactions, teaching concepts and time spent with your child.
Some favourite books are: Bear Snores On, The Paper Dolls, Where the Wild Things Are, Welcome Home Bear, Duck and Goose, No Two Alike.
It’s difficult to predict which children with CVI will learn to read and which will take a different path. What factors need to be considered when determining if a child with CVI should start to learn braille?
You are certainly correct, Cindy. It is difficult to foresee which children with CVI will learn to read and which will take a different path. There are many factors that need to be considered as well as many specific skills that are required for learning braille. Some of the skills that are particularly important are auditory, motor, cognitive, language development, reading awareness and tactile perception. Personally, I cannot think of any children that I have experience with who have CVI that have gone on to learn braille when they go to school. I think some of the reasons for this could be that they develop enough vision that they can access literacy visually, or because of the physical and/or cognitive requirements needed to use braille that might be difficult for the child with CVI to achieve.
If you could say just three things to a parent out there who has a child with CVI, what would they be?
I would like parents to know how valuable their day-to-day interactions are with their child. What we know is that young children learn best when learning is embedded into their day-to-day routines. All of the things that parents do on a daily basis such as diaper changing, feeding, bath time, etc. are all rich opportunities for learning. These are times to describe what you are doing, to incorporate “looking” as well as your child’s other senses and to simply have fun. I think parents need to take the pressure off themselves in thinking that they need to create specific organized activities for learning because this is untrue. You are your child’s best teacher but know that your teaching happens with your day-to-day interactions.
You have helped my family enormously in sharing CVI education and creative ideas for CVI interventions. Where can parents learn more about the work that you do, and see some ideas?
I must promote your blog Cindy, it is rich with ideas specific to early intervention. Your blog provides literature that is educational to parents and it gives ideas and strategies that can be integrated into the routines of the day that promote overall learning. You have done a beautiful job!
Tara is too humble to mention that she has an amazing Instagram account where she posts super helpful lessons about CVI strategies, teaching important concepts, and fostering independence. Follow her @vision_earlyintervention on Instagram.
You have your Perkins-Roman CVI Range Endorsement. What does that mean for parents? How can they contact you for help?
Yes, Cindy you are correct. I am CVI Range Endorsed and what this means is that essentially, I have completed the steps in proving that I am able to assess children with CVI using the CVI Range in a way that would be accurate. Assessment is an important part of providing support to children with CVI but what is just as important is the intervention plan that is created between a parent and an Early Childhood Vision Consultant. I have colleagues of mine that are proficient in doing the CVI Range and amazing at providing intervention strategies that are not Range Endorsed. I do think having the Range Endorsement Program is valuable in that it is recognizing professionals who have expertise specific to the CVI Range, but I don’t want parents to think that just because they have a vision consultant who is not Range Endorsed that this means they are not receiving good quality service!
Cindy has a deep interest in Cortical Visual Impairment (CVI) and is currently studying Early Childhood Education. She focuses most of her time on her energetic daughter: playing, cuddling and helping to make her world visually accessible. Cindy holds a degree in Marketing and has worked in the not-for-profit sector for many years.