Marion Pallister meets a family who work hard to play together and stay together

KATY Glen celebrated her 18th birthday last month and it was quite a bash. The weather stayed fine and there was a barbecue for family and friends in the garden of her home in Lanarkshire, with mum's show dogs looking for titbits and dad's old jokes taking an airing. So far, so much the same as any other coming-of-age party.

Katy Glen, however, is not just any other teenager. She is multiply handicapped, and her new status as an adult is cause for concern for parents Elspeth and Robbie.

They are no longer the people who automatically sign consent forms when Katy needs hospital treatment, and with a brain operation on the cards which could diminish the severity of the epileptic seizures she gets, the Glens are understandably anxious that the legal obstacles they will have to surmount will not put Katy in the slow lane on the road to the operating theatre.

They have been advised, however, that procedures could take up to five months, which is a perilously long wait when each seizure is potentially life-threatening. They are now living life hour to hour, pressing all the right buttons for each other to get through the latest stage in what must seem like an eighteen-year-long bumper-to-bumper crisis.

The crisis began at Katy's birth, when the problems occurred which led to her being wheelchair-bound, mentally handicapped, and registered blind. That is the down side. The up side is that Katy is bright and witty and a wise-cracker like her father, who has gained a reputation on the after-dinner speech circuit as a droll cross between Chic Murray and the Rev I.M Jolly. That Katy can often come back with a flash of barbed repartee, however, may not be enough to compensate for the years of heartache and worry.

Robbie Glen, who is the governor of Cornton Vale women's prison, explains: ``Now that she is 18 we have got to petition the Court of Session to get a tutor dative if any operations have to be carried out. That petition must be applied in Katy's name and a writ has to be served on Katy. The judge at the Court of Session will take medical evidence to see that the treatment is necessary.''

He stoically insists that this is only right to safeguard both Katy's situation and his and Elspeth's, but he notes the irony of the fact that had Katy's seizures worsened just a few months earlier, they could have given their consent and the operation could have been over and done with. As it is, the legal procedure cannot be rushed and they can only live in hope that nothing drastic happens between now and permission being granted.

He says: ``You can't help in your private moments thinking that after the way we have hopefully cared for her in an objective way, suddenly folk are questioning how sound your judgment is. Apparently the tutor dative can be applied for in a comprehensive way or for partial permission over a particular area. I think that is right that you should only get the partial permission. It is too much that you should get the power over an another adult for a prolonged period. But the sad thing is that the condition is life-threatening.''

Time with Katy, therefore, is precious, but it has always been so in the Glen household. They see themselves not as having a handicapped daughter, but being a handicapped family. Robbie, Elspeth, and daughters Avril and Katy fight their battle as a compact and highly-trained unit. Their emphasis on family meals out and at home are a source of wonderment to many of 21-year-old Avril's friends. Each member of that fighting unit, however, closely guards the space which each regards as essential to mental and physical wellbeing in a highly charged emotional situation.

Glen says: ``It is essential that each member of the family is able to pursue their own interests.'' He is a golfer. Elspeth breeds and shows King Charles spaniels, which are as dainty and elfin as she is herself. Avril, confident and articulate, leads the independent life of student. Someone has to be on hand, however, whenever Katy is home from special school, and so they pursue their interests on an informal rota basis.

``If we didn't have this difficulty, I imagine there would maybe be fewer people in the house, less family activity. But Katy tends to be home-based and needs the attention of one or other of us.'' It is difficult, however, for her to lead the life of a normal teenager. She doesn't want to go to bed early, but cannot be left alone. She wants to get up late on a Saturday morning and watch TV in her pyjamas.

``Saturday morning is my lazy morning, and that's it,'' she says. While Avril long since stopped going on family holidays, Katy has no option, but to join mum and dad in Arran.

Elspeth Glen is loathe to say that because they are a handicapped family they do this or that. ``There are a lot of limitations on what we can do as a family. We go for the easy option, and going out for a meal together as a family is pleasurable.'' She, too, insists on their own space, and an hour to herself to take the dogs up the road to ``get my head together'' is an essential part of her survival mechanism. She says: ``Being selfish is very important. The first thing I say to someone in the very early stages with a child like that is please learn and learn it quickly. If you don't the pressures will get on top of you.'' Did someone tell her that? ``No,'' she says. ``You pick it up as you are going along. You don't sit Highers in it, do you?''

Another escape valve is to get outside the four walls. The Glens have a spacious home, but Elspeth Glen spends as much time as she can outside it.

``People say I am a strong person. I don't think I am. You get the name of being strong and resilient and not needing anyone. It isn't true. It's just that you have to learn to survive.'' Self-help groups were not for her. She feels she could be sucked back down by them.

``Other people are probably better balanced about it than I am. I feel I have perhaps gone further in the grieving process than they have,'' she says, while Avril points out that their tolerance levels have built up to the situation.

For Avril, the teenage years were the difficult ones, dealing with the embarrassment of being different as a family. ``I never felt disadvantaged. I never felt I lacked attention or was left out. I am like my mum in that I am very independent.'' Avril is doing an honours degree in law and enjoys talking things over with her dad. She shares a love of music with her talented mother and says she feels closer to her parents than many of her friends seem to be, but she feels sad at not being closer to her sister.

She says: ``The stress of Katy's current condition is enormous, but this family has a very black sense of humour which helps us cope.''