The added support needs of visually impaired parents with sighted children

Philip Francis Anderson of Staffordshire, UK, highlights the gaps in service provision for visually impaired parents with sighted children, and offers a few possible and practical solutions to the many problems faced by these parents. This article is based on research commissioned by BBC Radio Four’s ‘In Touch’ programme.

A different set of challenges

As more and more blind and partially sighted children pass through the mainstream education system, it seems that they are likely to date/marry a fully sighted partner, which presumably reduces parental problems later on. But for a percentage of families in which both parents happen to be blind, there lies a completely different set of challenges. I am not suggesting that everyone of these families are the same, for we all develop our own ways of coping with things, but one cannot escape the fact that in most cases there is nearly always a set of identical situations which almost every visually impaired couple with sighted children face and all of which need addressing.

As far as I am aware, no case studies have ever really been carried out on these particular families so, the evidence I am about to present, should not be viewed indicative of similar families as every one is different.

Twelve months ago I interviewed five blind couples who all have sighted children, and virtually all of them had identical concerns; limited access to antenatal information; lack of visual input and practical support from social services; no real backup from schools, etc.

Why is this? The simple answer is a lack of awareness. The majority of families surveyed all said none of the organisations and services approached had ever encountered the situation before and were therefore not in a position to help.

“Following the birth of my child,” said one of the mothers “I was simply sent home with a bumper pack full of printed material with no real knowledge of its contents. I could have quite easily have forwarded it to the RNIB (Royal National Institute for the Blind) to be transcribed, but having just given birth, I was too tired to think of anything else other than the welfare of my baby, and thus I missed out on what I later learned was some valuable information.”

Another parent comments, “Giving birth wasn’t a problem, but not really having any immediate family to whom I could turn to for help after leaving hospital, left me slightly anxious. My main concern was feeding. As both my husband and I are blind, how was I to measure out the right amount of milk for my child? In the end, I ended up asking my next-door neighbour, with whom I didn’t particularly get on, and somehow I battled through. Even so, it was one less hassle I could have done without.”

Practical support

Both the above mothers agreed that what they needed was practical help, not in bringing up their children, but in day-to-day matters of preparing food and seeing that their babies were free of rashes, etc.

But whose responsibility is this? Is it the health visitor’s? Or social services?

“They helped us for the first week or so, then it was down to us to struggle the best way we could. Even when we asked the health visitor if they could come in on a daily basis for a few extra weeks, we were told that this wasn’t possible as they had other families to attend to. Somehow we managed, but it was a case of having to.”

But what about the visual needs of the child? A psychologist once said that 90 per cent of the world in which we live is perceived through the eyes. Is that true of a sighted child with blind parents? One can only speculate not, as their world is different in as much that their parents depend solely on touch, smell and hearing. For sighted child, this is not a bad thing at all as he or she will learn to use all their senses to great effect, which is paramount to survival.

In saying that, it is important that the sighted child receives sufficient visual stimulation on a regular basis, as sight is what they will come to rely on most in later life.

“My main concern was finding a way of teaching my child his colours and being able to get him to focus on objects in the distance. Having never had any sight myself, I found it frustrating not being able to tell him what he was pointing at through the window. Was it a bird, a dog, or just someone walking down the street? While this may sound trivial to the majority of you, for me it was incredibly frustrating. In the end, I decided to use my disability allowance to send him to a private day nursery three afternoons a week as I felt that his needs were far greater than mine.”

That same parent added, “Whilst I fully applaud the introduction of nursery grants for all families with children over the ages of three, I felt that I couldn’t wait until then as he needed plenty of visual input before his third birthday. In my view, it is the responsibility of local government to provide additional allowances for parents in my situation to enable us to buy in that extra help we need to give our child the same start in life as other children.”

This problem is by no means new, and whilst organisations like the RNIB and Look strive to provide specialist services for parents and children, the facts show that in most cases, they’re more geared up towards helping sighted mothers and fathers with blind children as opposed to blind parents with sighted children. Besides, whose responsibility should it be, anyway, to provide this much needed help and support? Should it be left to charities or the government? Those surveyed clearly replied ‘Government’.

I have barely scratched the surface. There is a vast repertoire of concerns of blind parents, which still need addressing.

Finally, those who took part in the survey all agreed that visually impaired parents with sighted children should get together to establish a strong network and actively lobby government to provide the much needed resources to local authorities, which includes social services, the health authority and schools, so that they an better assist them and their children in the future.

First published in Disability, Pregnancy & Parenthood international, Issue 35, July 2001.

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