Eyes and Independence
It had been a few months since I had visited but knew that when I did, I would be stepping into a place that looked different from before. I never expected the changes to start from the main front door. There wasn’t an office front or an obvious table with a sign-in book. I was entering into an environment with classical music playing, a lounge style room on the left with soft carpet. In front of me was a lovely display of families and children in photo frames placed strategically on a unique rounded bookshelf with ambient lighting. I turned to the right looking down a long walkway with fairy lights above and the room I visited last year had a lounge chair or two and natural play materials on the carpet ready for play.
As I greeted new faces, I heard calm and happy children outdoors, playing beside each other, with each other and those very young ones looking on. They were children with enthusiasm, adventure, curiosity and a love of learning. They were young children thriving and thirsting for more experiences, facilitated by those ‘who know’ how to start shaping the child’s future by immersing them into play.
I spotted the young child I was there to visit (as a specialist teacher/early childhood and orientation & mobility Better Start provider). He was standing among the other children, appearing like they had just had a silent discussion ‘on the worksite’ in the new wooden ‘cubby’, ‘playhouse’, ‘fort’ – whatever they wanted to name it that day. Doorways and floors were pointed out to me as I greeted them and commented on the new surroundings and the new spaces and places.
Over that morning, the young children were invited to visit a particular pony known to them since the new owners transformed the centre. Their excursion entailed necessary gumboots, hats, enthusiasm, respect and consideration for others. Safety was emphasised when crossing a walkway, opening and closing a gate, and learning about the best place to stand when feeding and grooming a pony. I observed social interaction, communication, sharing of information, sharing of tasks, participation, all processes that for some children are naturally developing. For others, there may be more learning required from modelling or practising with alternate ways of doing things or with equipment in order to achieve success.
I was there observing a child who was learning these processes through modelling, interaction, enthusiasm, curiosity and familiarity with the children he was sharing the experiences with, a place they have been coming to regularly and developing their confidence in the familiar ‘new place’. And that day, he along with a couple of other young children extended their ‘peripheral field’ and independently discovered more within their place.
Last week, my blog captured quite a lot of interest. I believe others were relating to the experience of someone being noticed as different even if the child themselves knew nothing about it yet. There has certainly been children that I have worked with that were not really aware of the specific name of the vision condition or the syndrome they were diagnosed with that involved the vision impairment. I remember asking a Year 6 student one day about her eyes and questioning what she knew about them. She knew it was something to do with her optic nerve but didn’t know the official name. I informed her of the nystagmus movement of her eyes and her response surprised me with her stating “I thought it was everyone else’s eyes that moved, not mine”.
A mother recently posted on Facebook a few concerns she had about explaining to her son about his vision impairment
“….so there has been a lot of talk about vision etc. Today he asked me when his eyes would be better and he wouldn't have to wear glasses anymore. At the time I just said 'honey I think you will have them forever, your eyes are your eyes and they aren't going to change'. He was happy with this response but now I am an emotional mess. How do you manage talking to other people about your children's vision? Do you talk about it in front of your child or try to shelter them?”
The person who understands their own vision condition becomes empowered and can inform family and friends, and those ‘strangers’ who ask random questions or make those random comments. That person becomes their own advocate. Empowerment creates confidence, understanding, and knowledge.
In understanding the vision condition or related characteristics of syndromes, the information will have to initially come from someone who has provided a diagnosis, used a range of tests and assessments to confirm exactly what it is. Understandably, the Ophthalmologist, Geneticist, Paediatrician have very busy days of back-to-back appointments so in preparing for those appointments is valuable to gain as much information as possible about your child, your self or other family member. Remember too, there are always forms to be completed and signed by doctors, to provide evidence of a diagnosis, in order to source funding, a travel entitlement, equipment source so the specific information for those reports can provide you with the information to learn more about the vision. Those reports can then be interpreted or further explained if/when necessary by a support specialist teacher, therapist, or someone who can provide that extra time to look into it further. The option from those specialists could also include a combined discussion if the parent was finding it difficult to explain or initiate.
I have included a very simple creative explanation that was created for a child taken from Facebook’s ‘Coloboma Group Australia’.
What explanation do you give to your child? What have you done to help others understand? What does your child say about their vision impairment? Please share your ideas or questions.
After a tragic afternoon the day before, my son was suffering from his recent collision with a toy truck and his teeth. We were heading to a paediatric dentist to assess the situation. He was around 2 at the time. We entered the building and needed to go up a level to get to the appointment. We proceeded into the lift (elevator), my son in a stroller and a lady followed from behind. In the few short seconds that we were all in the lift together, this lady who was a stranger going to a level above ours, shared her concern (without invitation) about the color of my son’s hair! “I hope he’ll be happy with that color hair…” I had experienced other comments before in reference to his hair but this lady insisted on continuing with her thoughts “My son hated his red hair, still does and he is in his forties”. I wasn’t comfortable and was hoping the lift would reach our destination quickly but I also wanted to respond somehow, so it didn’t seem like I wasn’t listening! I came up with a response to protect my son, speak calmly to this opinionated stranger with “I guess it depends on your attitude…”
Every child is born naïve of difference, not racist or prejudice. They observe and learn from their parents and close friends and opinions are formed early. Learning about oneself is part of the child’s development. So how was my son going to learn about himself? From strangers with a negative tone in their voice and facial expression to go with it, or was he going to start to question why people are looking at his hair and commenting? Prior to these occasions, had other people already asked questions or made unnecessary comments that he also recognised as being to do with his head region. Is that how he discovered that his hair color was different. I never pointed it out – there were plenty of others doing that!
The innocence of a child is a beautiful thing and the perceptions sit happily with the child until it is pointed out, disputed, argued over, an ongoing discussion that alerts the child to a topic that questions their belief. I remember working with a young 6 year old blind girl who was in a Prep class of 40 students with her being the only one with a vision impairment. It was obvious to us that she was the only one in the school. Her perception was that in each class was one blind child. I coordinated a group of 3 children with a vision impairment to further enhance their skills at one of the girls’ schools on a Wednesday afternoon. The first day the group started, a young boy took one look at the group of “blind girls” and became quite concerned about the fact that the other two girls had eyes but still couldn’t see. The girl in his class had never had eyes and therefore, his perception of a blind person was simply that – no eyes.
A clear and brief explanation was all he needed to learn about similarities and differences and acceptance of others for who they are and what they look like. There was no particular way to be “blind”, just as hair color, eye color, height and weight all varied amongst the classes. Children can be different but they can also be the same. Help shape your child’s thinking with an attitude they can learn from and model positive discussions.
This month, there are a few particular days that represent eye conditions or syndromes. On 12 March, it is World Glaucoma day and so I was going to provide information about Congenital Glaucoma that children can be born with and therefore encounter different vision challenges from very early on. The strong focus coming from the researchers is to encourage parents and extended family members to know what to look for in their child and then proceed with an eye specialist (Ophthalmologist) for further assessing.
I have taken the following information straight from the website to ensure the medical terminology is explained well and understood just in case, you or someone you know comes across a child who just doesn’t seem to be presenting well with their vision.
“Most childhood glaucoma is primary, either congenital (present from birth) or infantile (developing between 1-24 months of age). Most children with glaucoma are diagnosed within the first three years of life. Some cases of primary glaucoma may have a genetic component, but most are sporadic, occurring in families with no history of congenital glaucoma.
Why is early treatment for childhood glaucoma so important?
Prognosis without treatment is poor. In children under the age of 3 or 4 years, in addition to progressive loss of vision due to damage to the optic nerve, the eye with elevated pressure expands, becoming very large. That doesn’t happen in adults. This enlargement can lead to changes in refractive error (poor focusing of the visual image on the retina, or film that lines the back of the eye), changes in the shape and clarity of the cornea (the transparent covering of the front of the eye that assists with focusing of the visual image), and to other secondary causes of poor vision. Disturbance of the visual image sent from the eye to the brain in a young child will result in amblyopia (“lazy eye”), a condition in which the eye fails to develop normal vision. This can be permanent if not aggressively treated. That’s why it’s so important for parents to be aware of the signs of childhood glaucoma.
What are the signs and symptoms of childhood glaucoma?
Glaucoma can occur in one or both eyes. While most adults with glaucoma have no symptoms, babies and young children with glaucoma may display the following signs:
If you have something to share about a child you know with glaucoma or associated conditions (such as Sturge Weber syndrome), please share in this learning space. We welcome your insight.
Kerri Weaver is a passionate and caring service provider. She loves sharing her knowledge and skills to supporting those with vision impairment and additional disabilities. Kerri has worked in the field of disability for over 30 years. Her experience includes working in Tonga with a specialist team on multiple occasions.
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