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August 16, 2018

Parenting A Child with Low Vision.

We are Jenni and Russell Derksen of Jen + Russ Photography. We have been married for over eleven years and have lived a small life with great love for all of that time. It is safe to say that though we live a small life in a small town we have been through and done a lot. We have not seen the world together, we have not made great achievements in any career, we have not built a dream house, nor have we made or conquered any type of bucket list. We have, however, had three children within three and a half years, lived a life of giving to each other and our community, made choices to put ourselves last and each other first, learned to accept and seek out help, grown and changed our views to accept perfectly imperfect and learned how to raise a child with albinism.

We live in Didsbury, a town approximately 80km north of Calgary.

Our kids are 7, 5 and 4 years old and have been the adventure that we cherish more than the dreams of world travel. Our youngest son, Benji, has albinism. In other words, he is albino. Albinism is characterized by a lack of pigment in skin, hair, and eyes in varying degrees. Because of the lack of pigment people with albinism are very sensitive to the sun and can easily have severe sunburns and must wear sunglasses outside in order to be able to see. Sunscreen and prescription sunglasses are staples in our house. Most people with albinism also have some degree of nystagmus, an involuntary swinging/moving of the eyes, which is how we recognized Benji’s albinism at about 3 months of age. Albinism mainly affects vision in terms of quality of life. Depth perception, light sensitivity, and following moving objects are a few things that are inhibited.

So what is it like raising a child that can’t see very well? Confusing, challenging and rewarding. When Benji was diagnosed at 3 months old we were sad for him. We asked questions like: will he ride a bike, have friends or drive? The great news is that he does have friends (lots of them) and rides a stride bike. We still don’t know whether he will be able to or want to drive. But the sadness that began this journey has been overshadowed by the support and answers of the CNIB (Canadian National Institute of the Blind). We have had therapy and parenting support with the Calgary office and connected with other local albinism families. Benji has also been supported by his pediatric ophthalmologist, occupational therapists, physical therapist, local pre-K program and many others in this journey. It can be a lot of information to adjust to as parents of a preschooler. How do you teach a child who can’t see well enough to know how to crawl? How do you teach a child with low vision how to safely cross the street? How do you teach a child with no balance or depth perception and low vision that a swimming pool can be a fun place? How do you help a child whose low vision affects his other senses so strongly that he can not even eat for three days during Christmas? How do you walk through a mall with a preschooler using a white cane, and not acknowledge the public staring? How do you react when your low vision child often goes up to a different blonde woman thinking she is you? Or worse yet, leaves the school building with someone else he thought was you? What about when he asks to play soccer, but can’t follow a ball? What do you do when kids ask why Benji is sitting so close to the tv? Or how do you read a book to three children, when one needs to be 7 inches away to see the pictures? These are all things that are a constant part of our world, and that is ok! We have found that he can conquer a lot. And that we can too. We used to be afraid of these questions but, we have come to accept them and welcome them as part of our regular life.

So what does any of this have to do with Local Laundry and their mission to reach and encourage community? Community starts where you are. Community often starts with a struggle or a common thread. People encouraging each other to be their best. We have been supported strongly by our local school and the CNIB. We have found community among those who desire to see Benji not just get by, but to live a life full of joy.

Jen + Russ Photography - Jen + Russ Derksen.

Written by Jen Derksen.

 




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