Elodie was only three months old when we first noticed that her eyes were involuntarily moving back and forth all the time. Looking at our beautiful baby daughter in our arms, we wondered if she was able to see and focus on us or other objects.
As new parents, we immediately went to eye specialists to figure out what was going on. The ophthalmologists told us it was a condition called nystagmus, and reassured us that it would disappear spontaneously within a couple of years.
As Elodie learned to walk and explore her world, we noticed that she would often trip easily and bump into objects, leaving bruises on her legs and shins. She was shy around strangers, even the teachers and other kids at daycare.
With no signs of improvement, an optometrist referred us to the MAB-Mackay centre when Elodie was two years old. We were nervous about our first visit, but felt sure that if she had a deficiency one of the many doctors we had seen before would have discovered it.
The first thing they did was a thorough assessment of her visual abilities. Our therapist Kelly then called us in a room, and gently explained to my wife and me that Elodie was legally blind. The news was devastating, and hundreds of questions immediately ran through our heads about our daughter’s future. But Kelly focused more on the ways they could actually help Elodie, rather than concentrating on the medical reasons behind her impairment.
We were very hopeful, as a wonderful team of therapists quickly got to work with Elodie on a comprehensive course of training so she could live life to the fullest.
Ingrid, one of her therapists, worked on encouraging Elodie to walk independently. When she first started this training, Elodie was afraid of walking outside or in unknown environments. Over time, we progressed to having her walk holding hands, to her holding a finger (being guided). Elodie has been taught to note her surroundings, landmarks, to prevent her getting lost and to build up for future independence. Ingrid has also visited Elodie’s daycare, and made practical suggestions like putting yellow tape on the stairs and clearly identifying different areas in the classrooms.
Without you, none of this would have been possible for Elodie.
The MAB-Mackay also helped Elodie learn valuable compensatory strategies to make daily activities easier and safer. They showed her how to use tools (such as a CCTV and magnifiers) when reading or looking at small objects. They made recommendations on placing Elodie’s toys, books, markers, and colouring books in easy to find places to further encourage her independence. We also learned that bright lights can severely reduce her vision, and the many strategies we can use to make it easier for Elodie. And they provided her with custom-made eyeglasses and a specialized pair of sunglasses for her.
The support they offered us as parents was often just as important. There were group meetings with other parents of low vision children, which helped in making us feel we are not alone. We discovered how wide the spectrum of blindness is, and talked about the types of challenges she would face as she grows up.
Without your support, Elodie simply wouldn’t be where she is today.
We learned that we need to encourage Elodie’s independence, and not just do things for her when she’s having trouble. We need to encourage her to do sports and activities just like other children, for her confidence and happiness. At the same time, we have to accept her limitations and make the necessary adaptations. It’s a real balancing act every day.
We are so proud of Elodie, and the incredible progress she’s made. We’ve seen a GIANT change in her confidence since she started at the MAB-Mackay. She used to be afraid of walking and always wanted to be carried – now, she’s comfortable walking on her own or using her white cane. She’s learned to ride a bike, draw, cut paper and do crafts! She’s no longer shy, and has made lot of friends and is being more social.
Our story doesn’t end here.
Elodie will be turning five at the end of this month. She’s starting kindergarten next year, which means there will be big challenges looming. Learning to read and write will be taxing for her, but we know she has a very bright mind. Finding her way around a new environment, a new school, and the school bus, will also be a challenge. But knowing that thanks to you, the MAB-Mackay will be there to support our Elodie and us, is a huge relief.