Kin For The Long Haul; When Stewart and Jo-Ann MacPherson's daughter

LYNSAY MacPherson is five. She loves being a big sister to three- year-old Eilidh, and two-week-old Gillian. In fact, her family and friends say she's the smiliest little girl they know. But Lynsay is also a statistic. She is one of the 20% of children who have special educational needs, and her parents have had to fight at every stage for how best those needs should be addressed.

"The journey you go on when your child has special needs doesn't just affect you at one stage," says Stewart MacPherson. "You don't just fix something and move on. When your child is diagnosed, or labelled, or when you just suspect there is something that needs to be looked at, your entire family life and relationships are touched."

The MacPhersons, like most people in their situation, had no warning of what was to happen. Stewart's wife Jo-Ann had a straightforward pregnancy. Lynsay only took 45 minutes to arrive, and there were no problems during delivery. Both Stewart and Jo-Ann have often reflected on whether there were any clues.

"The only thing we keep going back to was the fact that we were told Lynsay's head was very small during the pregnancy. The size was always at the bottom of the centile chart. But we were never warned about anything, it was never suggested there might be difficulties.

"In retrospect, we think it was significant. She has microcephaly - the brain, while growing, pushes the head to its right size. Lynsay's brain didn't grow, and neither did her head."

To begin with, the MacPhersons put Lynsay's lack of development down to two things - their own confusion at being first-time parents, and eyesight problems in their baby that they thought explained why she had difficulties. "She was cross-eyed," explains Stewart, "and we thought that was the reason why she wasn't picking things up, wasn't able to do all of the things she should be doing. We thought we only needed to sort that out and everything else would fall into place."

Lynsay wasn't able to sit up without being held. She couldn't crawl. She didn't interact at all with other children. And, as time went on, her parents realised there were bigger problems.

"We kept asking for her to be checked," recalls Stewart. "Eventually blood tests and X-rays were undertaken, and we were told that scans were needed."

The family decided to go private after being warned there was a waiting list of up to nine months for Lynsay's scans. "You want everything done quickly. We were in a position where we didn't know what was going on, or even if there were issues of how long Lynsay would live."

Once Lynsay was diagnosed with microcephaly, and the MacPhersons realised their daughter's cerebellum was abnormal, they were faced with a conveyor belt of specialists and advisers. "She is a really happy child, she loves music and adores the Happy Gang and Singing Kettle. But she can't talk. She can't see at a lot of angles. She has problems on stairs. She needs familiarity, so taking her out is a problem. She loves her sisters, but she is very rough - Eilidh often has to wear a hat at home as Lynsay will just grab her hair to show affection. It is hard, you can't deny that."

"It is a very trying time," says Dinah Aitken, who is job share manager of Enquire, Scotland's national support and advice service on special educational needs. "It is quite hard to define special educational needs - one in five children, at some time during their school careers, will fall into the category. We are really talking about any child who is not managing to learn in the same way as others. For a large number of these children, the requirement for additional support will be temporary, and a lot of special educational needs can actually be addressed very quickly - and even quite simply if they are identified in the early stages. But for some children, that won't be the case and that's where problems can arise."

The categories are wide-ranging. Temporary problems can include difficulty in getting started with reading, writing or number work. A child's progress may be delayed following a period of illness or time in hospital, or there can be a temporary physical problem due to illness or accident, or perhaps a period of emotional upset in the family such as death or divorce. More long-term problems can arise with specific learning difficulties, such as dyslexia; social, emotional or behavioural problems; phys-ical disabilities and medical conditions.

As Lynsay is always going to have difficulties, the MacPhersons have had to rethink their plans for the future. "If you had asked us how many kids we were going to have before we knew anything was wrong with Lynsay, we would have said two. Now we have just had our third. Although we love Gillian for herself, we have actively chosen to have a third child. There is a part of you that recognises other factors are in play now. Eilidh - our middle daughter - is already old beyond her three years. She can't see Lynsay as the big sister. She looks after her; she is way beyond her development. We did have to think about what happens when Jo-Ann and I are no longer around. And we don't want to burden Eilidh with all of that, so now she has another sibling to share what Lynsay may become."

Stewart and Jo-Ann have a strong relationship but even they recognise the danger areas. "I'm at work Monday to Friday," says Stewart. "I get away. If I'm working late, they'll be in bed when I get home. And they will have been in bed when I left. Jo-Ann has had to deal with that all on her own, I don't see it all."

Moreover, he continues, having a child with special needs means that the parents don't have much time for each other. "You have to build everything around a child like Lynsay. We went to Spain on holiday - she can't go to kids' clubs like other five-year-olds, so there's no relaxing time just on your own. When you go to the supermarket, Lynsay can't go into shopper's creches as the staff wouldn't take her, nor are they qualified to deal with her. Last week, when I took Eilidh swimming on her own I couldn't believe how easy it was."

The MacPhersons are conscious that looking after Lynsay takes up much of their time and are keen not to neglect their younger daughters at her expense. "You have to keep normal childhoods for your other children. You have to praise them and make sure they feel the centre of attention at times too. That doesn't mean there is no awareness of Lynsay, but Eilidh and Gillian have to matter too," says Stewart.

"Lynsay won't get better. Ever. You cling to the hope of miracles for a while before coming to terms with it all. And you know what? This is nobody's fault. It's one of those things. You just have to try and keep some sense of normality in the middle of it all."

Call Enquire on 0845 123 2303 www.childreninscotland.org.uk/ enquire.htm

Copyright 2003 SMG Sunday Newspapers Ltd.
Provided by ProQuest Information and Learning Company. All rights Reserved.