The right kind of help

Jenny Dickson, of London, England, is a blind mother of 4 children. Here she reflects on her experience of health professionals, particularly health visitors, whom she feels have particularly helped her family. DPPI asked Pauline De Cruz, Jenny Dickson’s last health visitor to describe how she sees her role in relation to parents with disabilities.

After the birth of my first child in 1982 I was not allowed out of hospital by the doctors until they were reassured that there was a capable sighted person at home. My husband, Michael, is also blind, so we got my elderly mother to come and stay. It was only when this had been arranged that they would allow me out. I think this was symptomatic of hospital attitudes at the time.

The hospital stay was not a happy time and I had a number of quite emotional confrontations with staff there. I should have been more assertive, but I think they felt I was just a nuisance and as a first time mother, I did not know what I should know. I did however get a lot of support in breast-feeding, which I really wanted to do.

Eugene was born on a Monday, and it was not until Thursday that I was sent a young student nurse to show me how to bath my baby. This immediately gave me much more confidence as I felt that I could now feed and wind him and clean him, and would therefore mange somehow, as long as I could get home and get on with it.

Fear of professional scrutiny

I had not has much experience of babies myself, and was not then particularly maternal. Because of the hospital’s attitude over not letting me go until they considered it safe, i.e. until I had a sighted person at home, when I did get home, I did feel pretty scared about the health visitor. Is she going to be judgmental? Is she going to look at my house and wonder whether it was clean and tidy? Is she going to wonder whether I can cope as a blind mother? In fact, it turned out not to be an issue.

Non-judgmental

Eugene was a very easy baby – robust, placid and easy to care for. My first health visitor was a very confident Afro-Caribbean woman called Mary, who was a mother herself. She did not seem at all taken aback by mine or my husband’s blindness, nor did she question our ability to cope. She did give me some advice which I think was rather old-fashioned, which was to give sugar water to help Eugene sleep, which I did question and rejected. I did not see her that much, so did not have any particular bond with her. She seemed very practical and able to help when I asked for it.

I had been very anxious, during my pregnancy, about the practical aspects of caring for a baby, but my husband, Michael, is very calm and dependable and a very good antidote to my own anxious approach to childcare. I think his calmness reassured the health visitors coming into our home. We also have a reasonable sized house and I suppose what you call middle-class living standards which perhaps helped make the health visitors see us in a fairly positive light.

I did worry about illness and how I would cope but, in fact, Eugene was a very healthy baby. I was very lucky that he never experienced, for example, colic, and he was very easy to breast-feed. It has meant a lot to me that I have been successful with breast-feeding, because my own mother did not breast-feed; she was of the generation that was told bottle-feeding was best.

Support with postnatal depression

Some two and a half years later, when I had Miranda, things were different. I went into hospital on a Saturday morning to have Miranda and was out by the evening of the same day. This time my health visitor, Angela, was a straightforward and positive woman from the North of England. I did experience a bit of postnatal depression after Miranda was born, and I found the health visitor’s cheerful and positive attitude really helped me get out of it.

Weaning advice

Miranda was a much more difficult baby to wean, a fussy eater who rejected food that Eugene had eaten quite happily, and she did not put on weight. I was worried about what the doctors would think. I did feel I was on trial but the health visitor made me feel that I could cope.

One of the specific things she did was to introduce me to a range of baby foods that I was not aware of. Because of my blindness, I did not know baby foods were available in the shops. With Eugene, I had followed the advice of my first Heath Visitor in giving him rusks at weaning time, which were quite messy and stodgy in texture, and difficult to consume, these had not been successful with Miranda.

Angela, however – perhaps because she was younger and more aware of what new products were available – was able to tell me what jars were available, what powdered baby foods were available and I was able to try these out and find those which were successful with Miranda.

Provision of information

By this time, my mother-in-law had died and my own mother was elderly and living far away, I perhaps had access to less information on baby care than other mothers would have. I also was not in contact with, for example, neighbours or nearby mothers whom I could ask for help. But I did feel able to call the health visitors about any health worries and information, and have always found them very supportive. I also have a blind friend who had already had children, whom I could ask if necessary.

Perhaps I should have been more active in going to mother and baby groups but, in fact, I found it difficult because I found them quite competitive, and since I could not see the other mothers’ babies to admire them, I felt I could not join in as expected so stopped attending.

Access to other help

With Eugene, my first child, I did experience some problems because I felt I was not very good at playing with babies, and never felt able to play with him very well. I mentioned this to the health visitor and she suggested I get some help. Then two people – who I suppose were paediatricians or play workers – came round with suggestions if games I could play with him.

Reassurance

He also started at a local playgroup, quite early, at the age of two and a half, just when Miranda was born. I had some anxieties about this and wondered if he would feel rejected and left out, even though it was only for a couple of mornings each weekday. Angela, my health visitor, was very supportive and reassuring that it would be good for him and, in fact, it turned out very well.

On trial?

I have felt that when health visitors carry out developmental checks or hearing tests, for example, it is my mothering abilities that are on trial. Perhaps all mothers feel this, but when you are blind, this is even more the case.

Michael, my partner, is much more experienced with babies and relaxed with playing. He was made redundant from his job around the time Eugene was born, and so was actually at home for the first 9 months, which was really useful. He has since worked part time when all our babies have been young.

I do wish that there had been information available in Braille when I had my first child; perhaps I would have felt more relaxed about playing with him and knowing what developmental markers were. As a blind person, it is very easy to miss out on information that other people pick up without even realising it, for example, though I did manage breast-feeding very successfully with both Eugene and Miranda, when I had the twins, I got mastitis.

This was the first time I had ever experienced it, and I have to admit that I did wonder whether it was cancer. I had never heard of it and did not know anything about it. Although when I went to see the doctor and was prescribed antibiotics, it was quickly cured, I was able to laugh about the fact I had been so alarmed. It is often said that information is power, but it is also reassurance, and I could have done with a lot more of that.

With the twins, my experience was different again. I developed diabetes during my pregnancy with them and had quite a tough time. They were delivered by caesarean, eight weeks prematurely, and were in the intensive care unit for a few days which is very alienating for anybody not being able to touch your child, but particularly so for a blind parent.

Awareness

One of the twins was only three pounds at birth, and continued to cause concern for sometime with his size. The health visitor whom I had with the twins was wonderful; her name was Pip. Why was she so good? Well, she was very good with our dog, Candy, which immediately formed an important bond. She also offered to take photographs – something we had never previously done, and it was this awareness on her part of how she could help that made her someone we particularly valued.

Confidence

It was always a pleasure to see her. She exuded confidence in us and when she came round, often we had been a bit down or finding things hard. If that was the case, she always cheered us up. She always said how well the twins were looking. The fact that Callum did not gain weight easily, she did not make us feel it was our fault. She also reassured us to take one thing on at a time, which with twins is not easy. The care and help we experienced in the Whittington hospital when the twins were born had been fantastic, and I think this reflects the fact that 10 years had passed between my first child being born and then the birth of the twins; things had obviously moved on.

We have since had another health visitor called Pauline who has also been extremely good. She was reassuring in giving us advice about giving time to our older children; when you have twins it is easy for other children to become side-lined.

Practical help

The twins were recently sent home from school because they had nits in their hair. I was absolutely devastated and took it very personally, that somehow I had let them down. I understand that it is actually very common but I did feel that it was something I had not been doing right that had caused the situation and did not have a clue what to do about it.

When I called my health visitor, she came round immediately with the right lotions and potions and helped us treat – not just the twins – but all the children and ourselves. She was very practical about it and just came to show us what to do. She did not attach any kind of blame or anything else and that is what I like – a very practical approach when we need it.

I suppose the most important thing that our health visitors have done is give us information and reassurance that we are doing all right. All the health visitors have made us feel that they are available if we need them, but none of them have been intrusive. There has been a good balance; none of them have become too concerned about our disability and have not been saddled with prejudice. I do feel that whoever is training health visitors nowadays is getting it right and that should be acknowledged. Attitudes have clearly moved on in the 13 years I have been a mother!

Health visitor Pauline De Cruz describes how she sees her role in relation to parents with disabilities:

"My reaction to supporting Jenny and her husband was that I was very much aware that this was a learning situation. There is great emphasis on the health visitor to provide the right degree of advice and support to the parents. Given this support, encouragement and practical help I am certain any disabled parent would be able to cope with caring for their children. However my main concern is the lack of funding to provide the support services (such as home helps) to enable parents to look after their children.

Did I feel prepared to support disabled parents as part of my training? I suppose one could say no one is fully prepared to undertake one’s chosen profession on completion of training – the practitioner learns and acquires knowledge and skill through practice and through the support of more experienced peers.

The training I had provided a good comprehensive knowledge base of what is available in the statutory and voluntary sector. Although disability awareness training is given, the challenge arises in planning to meet the needs of the particular individual. I see the health visitor as a facilitator supporting disabled parents in their parenting skills. Vital to this process is the ability of the health visitor not to be judgmental, to treat each parent in a sensitive manner, to assess each individual appropriately and to work in partnership with them.

In Jenny’s case much of the groundwork in arranging support had already been done with her previous health visitors but I am currently involved with, for example, a single blind mother whom I have been involved [with] right from the start, supporting her antenatally.

It is very important that each parent is provided with appropriate support services, that they can be introduced to other parents with similar disabilities as well as introduced to the local support networks. All this can help prevent parenting being an isolating experience."

First published in Disability, Pregnancy & Parenthood international, Issue 15, July 1996.

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