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.
NDIS Registered Provider no. 4050011793
Kerri Weaver is a service provider for children with disabilities.