This is another ‘how long is a piece of string?’ question, but again it’s one that parents really want answered – and it’s an important one to get answered – as the sooner you help your child to sort out any problems they are having, the better.
This is the reason that teachers of visually impaired children start as young as possible. It may, at first, seem crazy that your baby has a fully qualified teacher from a few months old, but it’s not. A small delay early on, and a few more delays on the way can add up to some very big delays by the time your child is old enough to start school. If you give your child the right help early on, you can help them over each barrier and keep them on track so they’re not playing catch-up by the time they start in formal education.
Most children born with cataracts will be otherwise healthy, but some will have other difficulties which will have an impact on their development. One well known condition where cataracts are common early in life is Down syndrome (Trisomy 21), but there are other rare syndromes such as Oculo-cerebro-renal syndrome of Lowe and Cockayne syndrome where the first sign is cataract. If you are concerned that your child is floppy and is not growing properly or have other concerns it is important that you discuss these with your doctor.
There are a lot of people and resources out there to help, but many are more geared up for blind children, or for children with a known visual prognosis (future), so you will often find yourself adapting things. Frustratingly, children who grow up with partial sight (rather then being blind) at the moment have a worse outlook as far as employment prospects are concerned. Many parents of children who have childhood cataracts feel that they have to try extra hard to give their children the best possible chances.
Obviously not all children with cataracts will have all of the problems listed, and some have others as well, but here are the main ones to look out for.
Delayed visual development
A child who has had a cataract or two cataracts removed may take some time (occasionally months) for it to seem as though they can see from the affected eye(s). This is normal even when the cataract was removed at the right time, but if it was diagnosed later then it can be a long wait to find out how the vision is developing.
It is important that you stimulate your child’s vision as much as possible, even when it seems as though they can’t see (whether the cataract was in one eye and you’re patching, or whether they were in both eyes). You can start out by moving gentle, twinkly lights and things that reflect light in front of your child and move on to black and white shapes and large, brightly coloured objects.
Babies with normal eyes take a long time to learn to see and go through a process of visual development that isn’t actually finished until about eight years of age, although they do most of their ‘learning to see’ in the first six months of life. Cataracts often cause a delay to this vision learning, and because your child’s visual development is running behind that of others it can have some knock-on effects for their overall development.
Clinginess is something a lot of parents talk about, and there are probably a number of different reasons for it. Your child is likely to find surgical procedures or frequent anaesthetics traumatic. You may find travelling to frequent medical appointments tiring if you live a long way from the hospital where your child is being treated. Some very young children, especially those suffering from photophobia, may find their changing vision hard to understand at first and, when they can’t see Mummy or Daddy (because they happen to be outside on a bright day) they feel alone. Some children will become extremely anxious if they lose a contact lens or break their glasses and can’t see. Slightly bigger children may be anxious that they’re going to trip up or get hurt in some situations if they are not with you, so they may choose to hang around a parent rather than joining in activities. Older children may struggle with self-confidence and self-esteem when they become aware that they look different, or in reaction to other people’s attitudes towards visual impairment.
One of the most important gifts you can give your child is self-confidence and it’s important that you find out why your child is anxious or clingy so you can help them through it. You may be able to do some role-play activities with your child to help them cope with the hospital visits or get the help of a play worker. You might look at how to minimise the effects on your child of travelling: perhaps some of the check ups could be done more locally, or is there a way of re-planning the journey or appointment times to make it easier?
In case of photophobia, you should make sure that your child is really well protected from the sun. Many children will benefit from wearing a peaked cap that shades their eyes, although children with very low vision may dislike wearing any hat as it can interfere with hearing; broad-brimmed hats may interfere with hearing a lot. Sunglasses, and things like buggy-shades are also options (see our article on coping with photophobia for more on this). Many children seem to cope much better with photophobia as they get older.
If your child is worrying about losing contact lenses or breaking glasses you need to make sure they have a spare pair of glasses available all the time. Unfortunately the government voucher scheme does not fund spare pairs and it is rare that a hospital has a budget to cover spares. You will find that opticians do have a voucher scheme to cover repair of glasses and that as children’s faces and eyes grow you are likely to have an old pair that is just a little small to use for emergencies when the ‘best’ pair is in for repair or lost.
If a child is holding back on doing things because they’re not seeing well enough to feel confident, they need proper mobility instruction, but may also need you to hold their hand for a while longer if they’re still very young. An older child with self-esteem problems may need help to develop a happy social life, perhaps outside school, and probably would benefit from some counselling.
If your child’s vision is such that they will need to do some things in different ways from most people or if their appearance is unusual (perhaps because of thick glasses) then having the self-esteem and confidence to carry it off sccessfully will be crucial in the long term.
Delayed moving around, ‘gross motor skills’ and mobility
Delayed sitting up, crawling and walking is very common. These skills are called ‘gross motor skills’. Babies only bother to sit up because it gives them many more interesting things to look at. A visually impaired baby doesn’t have so much motivation to get on with it, so you may find you have to encourage them, put something they can see, or that they like the sound of where it will encourage them. Crawling and walking are often slower for the same reason, so you will probably need to make extra effort to get your child moving.
Babies may enjoy massage and older children wrestling games to help develop a sense of their own body movements (proprioception). Carrying a baby around perhaps in a baby carrier or sling can also help them to develop an inner sense of balance (vestibulation) as can games involving gentle swinging and rocking from side to side, backward and forwards and bouncing up and down; older child will probably enjoy stronger versions of the same movements and swings, seesaws and trampolines etc. All of these activities will help a child who is taking longer to get moving by themselves.
You may also need to give your young child as many extra chances as you can to work on their movement skills; letting your baby have plenty of playtime on the floor, more trips to the park, and to safe indoor areas where there’s space in bad weather for toddlers. Extra time spent just encouraging your child and maybe doing things like crawling with them will also help.
If moving around is a particular problem, a mobility instructor can help, but finding one in your area can be difficult as there is a national shortage and they work for all sorts of different organisations under different job titles (Rehabilitation Officer, ROVIC, O&M instructor etc); some services don’t work with very young children, despite all the evidence that early intervention really helps. For children who are really struggling with getting moving, especially if help from a TVI (teacher for the visually impaired) or mobility instructor isn’t available, or if your child has problems with movement for other reasons, you might want to get a referral to a physiotherapist.
A little clumsiness in older children often remains because children with cataracts only rarely have eyes that focus together, and the lack of depth-perception (3D) and reduced visual acuity (blurred vision) is likely to make your child more likely to stumble, trip up and walk into things. If your child needs to wear thick aphakic glasses they narrow their field of vision and distort the edges of object so that objects may pop in and out of view at the edge of their vision (a ‘Jack in the box effect’). Again, a mobility instructor should be able to help your child to avoid stumbling and walking into things and to learn more advanced skills like crossing roads safely when they are old enough.
Having one weak eye means that children may be more prone to eye injuries in that eye because they don’t see trouble (like an overhanging twig or rounders ball) coming. Working on better balance and co-ordination to compensate, through things like martial arts and dance will probably help with some of the clumsiness. Leaving your young child barefoot at home or giving him or her thin-soled non-slip shoes, so that they can feel the ground as they walk, can really benefit.
So many school sports are tougher for children without perfect vision, and it’s not often that school sports are well adapted for VI children. You may well want to find them physical activities that suit them better so they don’t end up as a couch potato or feel left out. Sports will also help with self-esteem and gross motor skill (general body control) development. You may also want your child to do some extra activities in areas they’re really good at to help improve self-confidence. It is important that sports coaches at school and outside are aware of how best to demonstrate movements to your child; this can be a particular problem with swimming – otherwise a great choice of sport – if your child is not wearing any glasses or contact lenses, but can also be a problem in other sports. Action for Blind People run sports activities especially for children with visual impairments and are also be a good way for your child to get to know other children with visual impairments socially. This can really help with the feeling of being the ‘only one’ that many children in mainstream schools who have visual impairments experience.
Delayed fine motor skills
Fine motor skills are things like grasping things between thumb and forefinger, using a crayon, scissors etc. Difficulty with fine motor skills as also is common, as they depend on good detail vision. You can help by getting things big enough and bold enough for your child to see, and a background of a different colour and by playing games and activities that work on those skills. Small food items can really help motivate young children.
Your TVI should be able to help with ideas in this area. You may want to get your child referred for occupational therapy if it’s a particular problem.
Delayed social skills
Delayed social skills are also possible. Where a child can’t see faces properly they can’t understand the facial expressions and relate them to the tone of voice, or try to copy them. You need to make sure that you come close enough for your child to see your face clearly and try to encourage others to do so, or ask if your child can come closer to see.
Sometimes other children and adults can misunderstand a child’s need to come very close as failing to give them ‘personal space’. A visually impaired child often will bring objects very close to your face to show you them. They don’t yet understand you can see them better further away. They may appear a rather ‘on top of you’ child or aggressive when they push to the front to see.
A poor field of vision may be misunderstood as rudeness if a child, putting on their coat, accidentally hits the child next to them who they have not seen or fails to greet a friend walking by.
Some children turn their head to one side to see better either to steady their nystagmus or to centralise their useful visual field. This can be misunderstood as not making eye contact or not paying attention.
You will need to strike a balance between giving your child extra help to make sure they can do things in a conventional way (for example, teaching a very young child to make normal social eye contact and to smile when greeting people) and making sure others understand that they will need to do some things differently (asking the nursery nurse to let your child come up close to see the pictures in the story or asking at the museum if there are objects your child may touch). Older children and teenagers will need to learn to start taking responsibility for deciding when they follow the conventional way of doing things because it may be more socially acceptable in some situations and when they do things differently because it’s the most efficient way for them to do something.
Although children with visual impairments may take longer to get there, a visual impairment doesn’t need to hold a person back from developing to their full potential and developing skills on a par with fully-sighted people (although your child may need to do some things in a different way). But the better you are at spotting their difficulties, finding and fighting for the right help and support, and helping them get there, the better your child will be able to get over these hurdles.
As one consultant explained it to some new parents “She won’t make a surgeon, but there’s nothing to stop her becoming Prime Minister”
If you want some inspiration about the things that people with cataracts have achieved, have a look at some of the people in our hall of fame.
Checked for medical accuracy by Miss Isabelle Russell-Eggitt, Consultant Paediatric Ophthalmologist, Great Ormond Street Hospital, London