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Edinburgh Conference for Parents, July 2007

After our successful conference for medical professionals in Glasgow last autumn, Edinburgh was the venue for HemiHelp’s parents’ conference. Liz Barnes reports on the day...

Dr Rob McWilliam, Consultant Paediatric Neurologist

Dr Rob McWilliam, Consultant Paediatric Neurologist at the Royal Hospital for Sick Children, Glasgow and a speaker at the Glasgow conference, took time out of his busy schedule to be our chair for the day. He probably found he had taken on more than he had bargained for, answering not only questions in his own specialist area (how often do parents get the chance to quiz a consultant in a informal setting?) but also commenting on queries addressed to other speakers. Dr McWilliam also gave our opening presentation. It was billed as an overview of hemiplegia, but he announced that, since you could find that on HemiHelp’s website, he would instead tell us about his research into hemiplegia and handedness (the subject he had already presented at the professional conference in Glasgow).

Hemiplegia and handedness

Dr McWilliam began by pointing out that hemiplegia affects more boys than girls, that right hemiplegia is commoner than left, and that the variance in these figures correlates with the fact that around 10% of people are ‘non-dextral’, i.e. left-handed or ambidextrous. Boys are more at risk because the male brain is less adaptable than the female (this is scientific fact, not just feminist prejudice!) Dr McWilliam quoted studies of tribal societies, where researchers found that 10% of the males were non-dextral, but no females; women’s traditional activities encourage ambidextrousness, whereas men’s, often focussed on hunting, encourage the development of one or other dominant side. And for reasons that are unclear, brains genetically programmed to be non-dextral are also more vulnerable to the kind of trauma that may cause hemiplegia.

Other general points

Of course the numbers involved here are quite small – most boys with right hemiplegia would otherwise have been right handed, and there has been no research into the difference it makes to the individual child’s development. But in the course of his presentation Dr McWilliam made several more general points. For example, he told us that it is a simplification to say that the right side of the brain controls the left side of the body and vice versa. Movement is to some extent controlled by the same side, so in most children their hemiplegia affects both sides of the body – they may be generally clumsy, or find it difficult to write neatly, for example. Also, difficulties with language and numeracy are usually associated with right, and visuo-spatial problems with left hemiplegia (although a family history of left-handedness confuses this issue).

Timing of damage to the brain

The timing of the damage to the brain also makes a difference to its effects. Damage in the earlier stages of pregnancy tends to lead to a more impaired arm than leg, and is also more likely to be associated with cognitive impairment than damage later in pregnancy, where the leg is likely to be more affected than the arm (this applies to babies born at or close to term, not where the damage is linked to prematurity). As you have probably realised, Dr McWilliam’s presentation was intellectually pretty challenging, especially first thing in the morning, but fortunately there was coffee and delicious cakes to fortify us afterwards.

Other presentations

The rest of the programme for the day included two presentations on education for children with Special Needs in Scotland, and an excellent overview of physiotherapy by Elizabeth Cunningham entitled ‘The Whole Child’, where she impressed on us the need for attention to the child’s whole body, the strengthening and stretching of the trunk as well as the limbs.

Claire Edwards: Being a parent of a child with additional support needs

But the speaker that stood out for me, and I think for many others, was Claire Edwards, talking about ‘Being a parent of a child with additional support needs’. Claire, whose son Joe has Down’s syndrome and autism, is head of SNIP (Special Needs Information Point), a parent-led voluntary organisation based at the Royal Hospital for Sick Children in Edinburgh for over 17 years.

SNIP (Special Needs Information Point)

Initially SNIP was literally an information desk in the hospital, but it has now extended its services to the whole of Scotland via a website and helpline as well as face-to-face help for both families/carers and professionals. And while recognising that every family is unique, they know that there are issues and themes that all parents of children with disabilities have in common. But the word ‘information’ does not begin to cover the range of help SNIP provides; most of the people involved are themselves parents of children with additional support needs, and, like HemiHelp’s own helpliners, they draw on their own experience to offer emotional support. SNIP provides advocacy for parents, and trains them in self-advocacy, to help them speak for themselves and their children in medical, educational and other situations. It also provides training for professionals in such things as effective communication, disability/equality issues and emotional awareness.

Family relationships

Claire’s talk really did reach parts not usually reached on these occasions, for example she touched on family relationships and the different strategies often adopted by mothers and fathers to cope with the stresses of having a child with a disability. Fathers, she said, often react by throwing themselves into their work, partly as a distraction but also to prove their worth as breadwinners. Other fathers become obsessed with seeking information, spending hours on the internet hunting out facts and figures about their child’s condition. Mothers, on the other hand, can sometimes immerse themselves in their child’s physical and emotional needs to the detriment of the needs of other family members, or can feel such a strong sense of possession of the child’s needs that the father feels excluded. When I talked at lunchtime to some of the couples at the conference, and especially fathers, it was clear that this had struck a definite chord.

Comparing notes

As usual, one of the most important reasons people came to the conference was to compare notes with other parents. In Scotland, distance can sometimes make contact more difficult than in most other parts of Britain, but we hope that some of these families will keep in touch, and of course tell others about the benefits of joining HemiHelp.

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