Nystagmus – a Mom’s journey

My daughter Ruby is visually impaired.  She has a congenital eye disorder called Nystagmus which is characterised by uncontrollable eye movement and lack of visual acuity.  She is a feisty little girl who does not let her disability hamper her in any way! However, like all mothers I want what is best for her so I am on a mission to understand her world, as well as provide help where it can be.  In my research I have come across some findings that I think will be of use to ICAN! when dealing with your visually impaired learners.   You should also note that most people with Albinism also have Nystagmus.  To enhance their learning process I would suggest these very simple interventions:

  • Good lighting is very important. All visually impaired people need good lighting but they can also be light sensitive so it has to be done carefully.  Many visually impaired people bring lighting specialists into their home
  • A person with Nystagmus sees differently at different angles (and this differs from person to person); the facilitator would need to work closely and discreetly with the learner to find out from which place in the classroom they see best.  They will always need to sit in the front but it may work better for them, for example, to sit on the left side of the facilitator
  • A visually impaired learner may be able to see normal size font but looking at it for a long period of time will be tiring for them.   They should be given additional time when needed
  • If they are comfortable with the idea, large print is better than small font
  • There are different variations of Nystagmus.  Ruby is able to look at me straight in the eye but many people with Nystagmus are unable to look at someone in the eye because their eye movement is so rapid.  So, when it looks like they are not listening they actually are
  • A person with Nystagmus often has a head tilt or shake – this is normal and it is the brain telling the eyes what position they should be at to have maximum vision
  • Many Nystagmus sufferers are colour blind

I happened to be assessing work done by a learner at a time when we just had just found out about the extent of Ruby’s lack of visual acuity.  His Portfolio of Evidence had large font and I was interested to meet him.  It turned out that he has Nystagmus as well as a very noticeable head tilt.  As you can imagine the head tilt is uncomfortable and leads to headaches and back pains.  What he did not know is that for people who have Nystagmus and a head tilt there is a simple operation than can improve visual acuity by about 30%. When your vision is minimal this would be a huge improvement. The good news is that this procedure is offered in our state hospitals.

I am currently working with another mother of a child, to understand Nystagmus. We want to create a charity where we raise money for Nystagmus research but also create an awareness around the interventions that are currently available.  When we get to this stage I hope that we can share information with ICAN! learners.

Hope this helps!  It’s amazing how things work out – I never knew when I joined ICAN! that my daughter’s eyes were so compromised. Now our journey together will hopefully benefit others by knowledge gained and shared.


Louise Carlyle-Mitchell