I must confess that this is a question I had to consider for a while when first asked, particularly as it was a question of ‘when’ to talk about it. After knowing that my first child was not able to see, there had never been a moment where this was not now part of our life – so it was talked about.
I realise though, that this is not everyone’s experience.
Acceptance of change into our lives is part of the course toward a new ‘normal’; as is denial, resentment and embracing the change. You may not be ready to talk to yourself about your child’s experience (or your own), let alone talk with your child about it. Also, your child may not be ready to talk about their experience, which limits any talking you may do as well.
From my life’s experiences generally, my degree of acceptance determines not only if, but also how, when and with whom I will talk about my life’s experiences – generally or specifically.
My experience was that my children were blind from birth. Though my eldest was not diagnosed until 5 months and my two other children could not be until after birth, they have always been blind and we have known no other experience of each other. When I consider unknown vision deterioration or sudden vision loss of a child or young person, I recognise so many differences to my ‘normal’. Having said that, acceptance of the new ‘normal’ (even a still changing ‘normal’) by parent and child, will still be a determining factor around talking about the vision loss.
My children were unfortunate/fortunate (you’ll have to ask them) to have a mother who talks about everything and anything – can be a hindrance with teens and young adults but that’s another post – but I was also taught by early childhood educators and speech therapists that I needed to talk about everything; describe everything; provide opportunities to experience everything (that we could anyway); encourage a developing understanding of all that was experienced and described. This included explaining that I could see what they were doing through the glass of a window, but not a timber door, and that they could not ‘see’ through either of them; that we were walking up stairs and counting them, then down stairs and counting them; that I could see the trees in the paddocks (fields) through the car window, and as we drove past them it appeared as though they were moving because we were (actually, that took a lot more explaining); reading print means my eyes can see the words without them touching the page like their hands do when reading braille…If the fact that they do not see, and I do, was not discussed and described then they would have had a limited view of the world in which they live, and the people with whom they live.
It was also important for my children to know that there were many others who did not see, sometimes in a similar way to themselves and other times in a different way; that I wear glasses to be able to see things clearly; that glasses wouldn’t help them (and why – glasses don’t help a retina which isn’t working properly, what part of my eye benefits from glasses); to meet braille readers, children and adults; using canes; meeting dog guides; riding with people in their wheelchairs (which requires someone else who has accepted their own ‘normal’ – also, the rides were offers not requests, looking at someone’s wheelchair is something I would have requested though)…
Much of our fear and resentment in life comes from not knowing, from the unfamiliar, the unrecognizable (difference). Knowledge isn’t every thing, but it is a very important thing. As parents, the more we embrace and pursue our own knowing and learning, the more we will pursue opportunities for our children’s own knowing and learning – of their own, they will not and should not be carbon copies of us.
My hope for you, is that you will embrace who you are and who your children are – each individual, valuable, worthy one…whether these children are your own, your class, or under your training of any other description or timing.