advocating against institutions for children with disabilities
Cody’s story in pictures
Birth. He came out hard and fast and my heart exploded with joy and love at our first meeting. 15 hours after his birth we found out he had no eye tissue in his sockets. It was a shock and it was a painful blow. I remember holding him that much closer and tighter and speaking and singing to him whenever I nursed him. My mothering sense of protection and care grew exponentially once I found out about his blindness.
Cody was born without eyes. The first months of his life were a blur. My love for him was intense and yet I had a lot of anxiety about his future. Blindness was such a new reality, one which I had no experience with and it presented itself with many questions and worries. Cody had a lot of smiles and laughter, but he also had a lot of crying in the first months and years of his life, which continues on and off to the present. His crying is difficult for me but his smiles and times of joy are times of great happiness for me.
His smiles always light up our world. A 8 weeks old we began the difficult process of having his eye sockets expanded to be eventually fitted with prosthetic eyes. We don’t believe the process caused him pain but he did not like having to be held while we put in conformers which increased in size over time. He often played with them and we lost many a pair from him fishing them out and in one case eating it! Once he was 1 year old, we were able to fit him with painted prosthetic eyes, the size of which has not increased since.
2 year old photo shoot. Here you can see his painted prosthetic eyes in place. They do not cause much difficulty except that they do create some discharge and need to be taken out to be cleaned (every month or so) and polished by a professional (every year).
He loves to rock. Big movements like rocking and swinging are essential for blind children because they teach proprioception, the sense of one’s body position in space.
He loves the feeling of water. Water is a great opportunity for body awareness as it is the only environment where you have sensory feedback on all your limbs and torso at the same time. This helps with body awareness and control which are concepts which take longer for a blind child to comprehend and learn.
Exploring the river with his Grandpa using his cane to walk. Time with my parents, Cody’s Grandma and Grandpa has been a central part of Cody’s life from the time he was born. Their love and devotion as grandparents has been a source of support for me and joy for Cody. Cody has always felt the freedom to explore his world, knowing there are those who love him always nearby.
Ice cream is a favourite of Cody’s. The sense of taste is a significant one for Cody. He has never been too particular about food and has enjoyed a healthy appetite! Food has always brought Cody much joy.
Coming home from an outing with a respite worker. Every summer I have hired a respite worker to take Cody on daily outings into the community. He has visited parks, grocery stores, playgrounds, firestations, libraries, homes and rivers, lakes and oceans. He develops strong affection for these care givers who invest in him. His blindness means he needs hands on and repeated experiences in order to learn about his world.
At the Christmas tree farm. By the time Cody was 6 he had been diagnosed with autism. This diagnosis was not a big shock as I had suspicions earlier on, but it did confirm that we had bigger challenges than simply the blindness. A good result was the increase in government funding we received beginning then due to his autism. This funding has been essential as we are able to use it for various types of therapies for him: speech, occupational and physical therapy, music therapy, horse therapy and more.
Sitting to listen to all the sounds. I know Cody is listening when he stills his head and body. I then still my body and concentrate to hear what he may be hearing. I like to suggest to Cody what he may be listening to and then describe what it is. His blindness has opened up my ears to all the intriguing sounds of our world. I have found that my sight often gets in the way of my other senses, Cody has taught me this.
Cody on an outing with his Grandma. We have always tried to show him the world with his other senses
School picture. Cody has gone to the regular public school since preschool. He now is in a Resource Room which has other children with disabilities and a specialized teacher with one to one care. He integrates into the regular classroom each day for different time periods and especially enjoys gym, art and music. My role advocating for Cody in the school system has been a significant one. The teachers and specialists who work with him have been very supportive of my hopes and wishes for his educational program. He has learned to adapt to many different teachers and classrooms as they change from year to year. He has been a very strong and resilient boy through all the challenges and changes at school over the years.
Music therapy lessons. Music is a great joy for Cody. He listens to music at home, at school and in the car. He stores music in his head and can often be heard humming a tune. Music can calm him when he has anxiety and is overstimulated. It can also lull him to sleep. Music can bring him to hysterics and cause him to burst out in smiles. Music truly is a gift.
Cody likes to have big motor movement, often climbing on top of furniture and objects. He has never played typically with toys, instead finds his unique ways to enjoy his environment. This rocking chair is usually upright and he loves to sit in it and rock and get cozy while he listens to music.
Pushing a big ball is a great bumper and lots of fun. When he doesn’t have his cane, Cody often likes to have a big ball in front of him which is not only fun to play with but also gives him information about his environment and where he is headed.
Snacks by the pool in the warm sun. Cody loves the warmth of the sun. He can tolerate heat and cold more than others. Because of this he especially likes the heat; that of the sun and of the hot tub and hot baths.
Cody when he first started learning to ride a horse. We introduced him to Lisa, a friend’s horse a couple of years ago. Since then he has learned to sit on his own on a saddle and ride with the help of sidewalkers. Riding a horse is very therapeutic. The motion of the horse walking, the feel and sounds of the horse and surroundings create a very soothing and comforting experience. Horses also are very sensitive to children with disabilities and can read their emotions. Cody and Lisa have developed a very special bond. Cody enjoys visiting her even if he can’t ride her. He will stand beside her and walk around patting and laying against her for up to an hour…all the while smiling and chattering and giggling. It is heartwarming to watch.
Using a noodle to float in the pool
He loves his bed and being cozy. Sleep has, up until the last several years, always been a bit of a struggle for Cody. Earlier in his life he woke up during the night for several hours. His sleeping rhythm was never natural due to his blindness. Without sight, one does not experience the coming and going of sunlight which encourages the body to release Melatonin, a natural hormone necessary for regular sleep patterns. As a baby, I began giving Cody supplemental doses of Melatonin. Although there are times when his sleeping is erratic, for the most part he now has a very regular sleep pattern.
Lisa, his favourite horse. He loves to stand beside her and feel her.
Exploring the sounds and textures of nature. Hands on experiences with nature are crucial for Cody’s learning about his world. In order for him to learn, he needs to be exposed many more times than a sighted child would need to be to concepts and objects around him. He needs repeated and prolonged exposure and so one of the activities I try to do with him often is explorations into nature.
Walking independently on a bridge. There is something about bridges that Cody has always loved. His lack of sight has instilled in him a very perceptive knowledge about his surroundings. He can sense objects around him using echolocation (similar to bats) and I believe he loves bridges because he can sense the space underneath and likes the sounds which echo as a result of his walking over them.
After school, he decides to take a rest on the couch. School is hard work for Cody. The many sounds of children all around, the expectations of moving around without sight, the challenges of learning activities all lend themselves to hard work. Because Cody also has autism, he can suffer from information and sensory overload. This is very fatiguing for him as he then has to find a way to regulate himself and calm. He has found numerous ways to do this and his school team has learned how to support him in this. By the time he gets home from school he has been trying to keep himself regulated all day and as a result needs time to relax.
Getting used to the water before he goes in
Floating and posing with a kiss! Cody has no concept of appearance yet we tell him all the time what a handsome boy he is!