Vision Australia were absolutely brilliant.  They came and spent over two hours with us answering questions and giving us very helpful tips on toys and play to help Beth. We were so excited and had so many questions we even forgot to give the ladies a cup of tea or a drink, sorry about that!

In summary, they were able to state that Beth seems to have good functional vision - which means she can identify and see objects etc; however just how good the vision is in terms of detailed vision - for things like reading and the like, we can't be sure just yet.

There's also a differentiation between whether the eyes themselves have any vision issues or impediments, then whether the visual cortex (part of the brain that the optic nerve connects to) has any damage/issue, and then finally how Beth interprets and handles what she sees (generally in the brain). 

The eye specialist (opthamologist) we went to believed Beth's eyes were all ok, he couldn't see anything wrong with them, but that said he didn't really test the eyes for their level of vision - stating that until they speak or can communicate they can't really know...  Talking to other parents this seems to be a common reaction, particularly when a brain issue is also involved, but it's not quite true. Apparently there are some ways to determine to some extent a level of vision via peadiatric eye specialists - we are going to continue to look into this with Sydney Children's Hospital.

 

Originally, our paediatrician stated that the lissencephaly appeared to be more in her frontal and parietal lobes when I asked him if it was in any specific area; he didn't mention anything concerning the visual cortex - that's a question to ask our neurologist.  Hopefully there isn't any impairment of the visual cortex; this would lead to what is known as cortical vision impairment which is not really treatable.

 

Even if Beth is able to see perfectly, then there is the question of how she interprets it and handles it; The ladies advised that seeing and focusing can take a lot of effort in terms of the brain to handle and interpret it, and this requires concentration on Beth's part.  They were able to observe that Beth did concentrate and look at things, but after a short period of time generally moved away from them, which again is normal for low vision as they learn to focus and concentrate.

 

We asked about a "wobble" we noticed in Beth's eye, usually we see it during feeding, and they were able to tell us that this was called "nystagmus", and that it was generally a symptom of low vision - indicating that Beth was trying very hard to focus on something - while feeding - that's focusing on our faces.

So what was suggested was that we have a vision assessment -  these are a more qualitative assessment than an eye specialist would perform, and the results are dependent on how Beth is going on the day - a bad result might just be her having a bad day, but a good result will provide us information about her potential.  This is the same sort of assessment they use for children with low vision before they go into school, and it is required by the school (not applicable for Beth yet!).  This will also provide us a bit of a baseline of Beth's vision and we can request further assessments as time goes on.  So we have one scheduled for 28th March 2008.

They also advised that Beth's vision will improve over time, as it naturally develops over the first 8 years of life.  But if there is cortical vision impairment this will place an upper limit on what Beth can potentially do, and no amount of stimulation etc will get us beyond that limit.  So they have also recommended that we take a low vision combined with a vision substitution approach now with Beth, to both maximize her potential vision through stimulation and also to supplement her vision with other sensory aids to vision.

Vision Australia will work in with DADHC and our physio etc to guide in relation to the vision as well, which is great.

One other thing we were told was that sometimes children have a preference about which part of the retina they see with - this means that although they might not be looking straight at you - they could even be looking quite off to the side - but they could still be looking at you, because your image is appearing in a spot on the retina that corresponds with an area they can focus or interpret from better.  This is something the child will develop themselves as time goes on.

Another observation is that children with low vision also are able to pickup movement better than just a stationary object.

Another thing to remember is that children with low vision need more than just visual clues to interpret whats going on around them and to feel comfortable rather than surprised.  This includes things like announcing entering and exiting a room, touch to get attention and introduce etc.  Vision Australia also offered to have a time with family etc to explain some of this if we would like as well.

They also noted that with normal tummy time, a child gets a visual reward for lifting their head. but with low vision etc, tummy time does not really provide much reward. Having tummy time on mummy's tummy, looking at her face etc with encouragement and auditory reward helps here.

Based on this we discussed a range of toys, play and activities that was very helpful, here are some of the suggestions and information they shared with us.  They suggested to have a range of different activities and toys for different days - some days she won't be as good as others perhaps and we need to adjust accordingly, particularly if she's sick etc.

A low vision strategy involves a "bigger/brighter/bolder".  So playing with toys closer, using contrasting and uncluttered toys and images and making sure the room and things are not to dim.  Here are the suggestions they showed us.

We already had a few black and white cards with geometric patterns on them, but they showed us a fuller set of such cards that ranged from transparencies that sit on a light box (like what doctors put an x-ray on to see it), black and white patterns on a fluorescent colour card, metallic/reflective type images, as well as plain colours.

 

They also advised to have a plain play mat - something black or white or red for instance, rather than one with lots of bright colours which will appear cluttered. It is easier for the child to focus on an object that is on a plain background, and particularly a contrasting background.  Another strategy here is to put a black cardboard behind a toy or object, or even an object in a corner with black cardboard all around, to assist the child to focus on it.

 

Contrasting toys - black and white toys, even a mobile made of black and white patterns, black and white pom poms (if you knit) etc.

 

Toys that are reflective or metallic are good.  Using a mirror, even a small mirror "disco" ball, bright reflective Christmas decorations, hologram wrapping paper, a CD hung on a mobile or frame over her, the tinsel style pom-poms that cheerleaders use (available from junk shop).

 

Toys that involve light are also good.  We were shown one toy that spins and has lights that spin inside.  Apparently lava lamps are also a good one, perhaps with a black/contrasting cardboard behind it.

 

A vision substitution strategy involves substituting other sensory input for vision, such as textures and auditory response toys.

Encourage her batting with her hands and kick with her feet by having toys suspended over here while she is lying and within reach.  Use toys that give an auditory reward - have bells in them etc to encourage her to repeat it.

 

Put squeaky toys underneath her arms/legs and around so that as she moves she gets an auditory reward and again it encourages repetition.  Putting bells in her socks on her feet or her hands encourages and links movement with a reward.

 

Use of the cheerleader type tinsel pom-poms makes a good noise as she grabs at it as well as being reflective.  Wine bladders, and other crinkly paper/films are also good.

 

Letting her touch different textures - sheepskin, wool, velvet, silk etc.  Try and put this under both hands or feet at the same time to reinforce the feel. Clenched hands are not uncommon, but need to be discouraged so that later on she will use her hands for grasping and or pushing switches etc. Sometimes rubbing the back of her hands with the material will open her clenched hands. Don't forget to do this with feet as well, feet and hands are both ways they explore textures.

 

Putting textured material around her bottle may eventually encourage her to hold her bottle.

 

Using toys that shake and vibrate, encourage touch and sensation as well.  Try and find toys that can be switched on an left rather than you having to wind up or pull strings etc.

 

All of these work together to encourage vision, movement and communication down the track.