» Adulthood

Good times bad times

I am writing this letter in the hope that some other parents might be encouraged to share thoughts about their own children who have CdLS.

Our daughter, Sue, was born with CdLS and at the time, we had no idea what problems we were going to face.

Now, with Sue at the age of 36 we can look back and remember all the awful situations we have faced, especially over the last 10 years.

Sue is a lovely attractive girl with dark hair, though slightly small. She is reasonably intelligent, able to read and write, do simple crosswords and jigsaws of 500 pieces.

She can dress and bath herself, choose what clothes she wants to wear each day, likes collecting postcards, rides on steam trains and going to traction engine rallies.

We enjoy taking her out or having her home for a weekend or a week when she is all right.

But she has her good times and her bad times and it is the bad times which are so awful, for she seems to change into someone else, often without warning.

When she was 18 she went to live in homes of one sort or another because we could not cope with her at home as she started to hit us or stay in bed a lot. When she was a child we could cope, but as she got older it became harder and harder.

Sue has wrecked rooms in two of the homes she was in; she has attacked staff and one of the residents – and that was in a home where she had lived for five years without a problem, even going by bus to another town to college.

At the last home she was in, she attacked the staff until they, too, could not cope; she went for reassessment at a unit in Horsham where they changed her medication but, even then, she began hitting staff and residents.

As parents, we are concerned about all the moves which we do not feel help Sue, especially as we understand CdLS children and adults are supposed to lead a quiet life which helps them cope with everyday events. Every time Sue moves, she has to cope with new staff and residents.

We really want to know why it is she changes so dramatically, without warning sometimes, and has such a different personality. We wonder if there are other parents of CdLS adults who have similar stories to tell.

I could go on and on about Sue but there is just not enough space in the newsletter.

Mrs M. Gowler
Bognor Regis
West Sussex

Reaching Out newsletter
October 2002