My Story by Michelle
Michelle is mum to Elodie and Finn tells her story….
Elodie was born healthy and we were tucked up in bed and taken back to the post-natal ward.
Elodie did not want to open her right eye and when she did it had a haemorrhage in the sclera. I was concerned about this but the paediatrician felt that it was a common injury due to her fast birth and that it would clear up in a few weeks. We also felt that our daughter was facially very different from our son and her head was not symmetrical in shape, again we were reassured that this was normal and was due to new-born moulding of the head.
We took our daughter home, but our fears still remained. I mentioned her eye to the health visitor and she felt that it would be best to get it checked out by the GP, by this stage it was noticeable that Elodie’s eyes were a different size with the right one being smaller than the left. When I saw the GP she agreed that something was not right and referred us to the Ophthalmology department of our local hospital.
We were anxiously waiting for her appointment to see the Ophthalmologist, I was still very unsettled about her eye and she still did not open the right eye as much as she did the left. While waiting for this appointment we had an opportunity to see one of the hospital Paediatricians. We arrived at the hospital for our appointment, feeling a little embarrassed as we began to think that we were overreacting and were simply anxious parents. We met our Paediatrician and he examined our daughter, he did feel that one of her eyes was smaller than the other at that stage he then carried out an ultrasound of her brain on the children’s day care ward. We were starting to get very alarmed, we were asked to stay in the hospital that morning and the Paediatrician would try to get us an appointment with Ophthalmology that very afternoon.
We were sent down to a very busy ophthalmology clinic that afternoon. I remember walking into the consulting room and meeting the Ophthalmologist who began to examine our daughter. We went into a few different consulting rooms for different testing and the last professional we saw was the optician.
After the tests were completed, the consultant brought us in to speak to us. We were still oblivious as to what, if anything, was wrong. I was convinced that she needed glasses as the last person that we had spoken to was the optician.
Elodie was six weeks old when we were gently told that her eyes did not develop properly, her eyes were smaller than normal and the retina at the back of the eye had not fully formed and closed over. Stunned into silence we could only listen as to the details of her condition, She had bilateral Micropthalmia, and Coloboma, her little eyes simply did not form properly.
Choking with tears, we made our way back to the children’s ward, not only was our little daughter visually impaired but her eye conditions was often associated with more serious health problems and syndromes.
Arrangements were made for Elodie to have various scans, including an MRI of her brain. I remember the doctors talking about “associations” but they were reluctant to give us any detail about them. Later, when I felt brave enough read about her eye conditions I learned about these devastating associated syndromes.
That was that day that we wished our little daughter was “just blind” an inconceivable thought a few hours earlier in the day. However one by one, Elodie’s tests came back clear. I remember her Paediatrician’s relief when he came into our hospital room with the news that her brain was normal and “small, but perfectly formed”. Having an isolated visual impairment was the best outcome we could have hoped for that day she was diagnosed.
In that one day our lives had completely changed, we were devastated that our little girl had a severe visual impairment. When Elodie was twelve weeks old we had a further appointment with her Ophthalmologist, she thought she could see a change in her right eye. Elodie was then examined under anaesthesia and it was discovered that her right retina had detached. A few months later the left retina detached as well. Her rare eye condition has developed a rare problem.
We took out little girl home and I remember being completely overwhelmed by the thoughts of her future and our whole family’s future. In those early weeks following her diagnosis I could do no more than to keep her close and let it sink in that what she had could not be fixed.
The Early Months
Elodie was a very quiet baby, she lay still in her swing or carrier, I often felt that she was almost too quiet. She never moved to see or follow you, but when you came into the room she would lie still. She never showed any recognition when you approached her. That was hard as you never got the beaming smiles and arm waving to be picked up. To anyone else she was undemanding, the perfect little baby.
The early days were very difficult, what on earth do you do with a new-born, visually impaired baby? At that time my first thoughts were touch. Our Health visitor arranged baby massage for us and we had one-to-one sessions at home as I did not feel I could have coped going to a baby class. We massaged her limbs, sang her rhymes, and helped her find her feet and hands.
At this stage, Elodie showed very little signs of visual activity, her eyes rolled, she would never look at us or turn her head. She was easily frightened, she howled if she was picked up without warning. I bought lots of light up toys to see if these would stimulate her. We had black and white play mats and checker boards desperately willing her see something. Then at five months she began to follow some lights so I contacted our local Special needs School as they had a multisensory room and we were given permission to use the sensory room after school hours.
Elodie began to show an interest in the fibre optic lights. We went a few times per week, learning to explore the lights on her tummy, she loved the bubble tube and day glow toys. We put high contrast silhouettes on her bedroom wall, twinkling stars on her ceiling, we put patterned cushions in her cot, and looked for high contrast toys.
Unfortunately, the little vision she has in the early years has been declining. Sadly, she no longer sees colours or is able to recognise me without hearing my voice or touching me. But her memory for remembering narrative, people and experiences is amazing, she does not forget things like her sighted friends.
My understanding of visual impairment has changed so much over the past four years, for me now having a visual impairment affects your ability to learn, move and interact with others. I do not see my little girl as simply having an impairment of sight that perhaps hearing and touch may automatically compensate for but having a global impairment which affects her ability to move, communicate and to learn new things.
Blind infants and children cannot learn by seeing, information and learning opportunities are missed and incidental learning is impaired. As a parent, I am overwhelmed every day at our task ahead, Elodie’s catalogue of the world around her is much smaller than her sighted friends, we understood this from the very beginning and strived as parents to help her learn and develop like her little friends. I would find it difficult to describe those early years, trying to find ways to help our child while trying to process that what little sight she had developed was gently fading.
Elodie absolutely loves the In Tune Workshops; this is an exceptional programme for her where everything is completely accessible for her and hard to replicate in other activities. I have a video of her playing a violin which she had never explored before. I have watched this so many times, what it “looks like” for her takes so much more exploring than a sighted child and highlights the difficulties blind and partially sighted children face in activities with their sighted friends. She did not know how you held a guitar which took some time to explain and demonstrate, an activity that most sighted children can mimic and play as toddlers.
I just love her growing confidence with the other children in the group as it is much more difficult for blind and partially sighted children to play and make friends as they miss play gestures and facial expressions. Elodie now knows all of the Artists voices and names and is completely engaged in the sessions. Our journey to the workshops is a round trip of 130 miles but worth it at her delight in the sessions.