Greetings from New Zealand.
Louise is 14yrs old, she will be 15 on May 12. She has 4 older brothers (ages 16, 17, 21 & 24) and 2 older sisters (ages 18 & 23). Louise loves swimming, music, computers, books & watching videos. She has an off-beat sense of humour and fun that sometimes takes us by surprise. One of the new adventures Louise faced in 1997 was starting at High School. She has attended the same schools as her brothers and sisters and has always been part of the regular class, supported by a teachers aide. Her new school had never before had to cope with a student quite like Louise and the challenges she brings. However they were very supportive and determined to action their commitment to inclusive education that provides for all students. The year has been eventful with a whole lot of new learnings and a positive experience for all concerned. The teachers aide employed to work alongside the regular class teacher with Louise has been wonderful. The attitude of both staff and other students has made it very good time for Louise. "Individual Education Plan" (IEP) meetings held throughout the year ensure that achievable goals that encourage her progress are set and reviewed at regular intervals.
One of the biggest challenges has been dealing with inappropriate behaviour in the school setting. Louise sometimes finds it difficult to cope in large groups, particularly when it is noisy. Nor does she like to be the focus of attention, even when it is positive. However we were delighted in the progress made over the year. To see her participate in the class drama group was a special achievement both for her and a credit to the care shown by fellow students.
We were given a "probable diagnosis" of Rubinstein-Taybi Syndromme for Louise soon after she was born. Most recently a comprehensive range of testing to establish her on-going medical care (because of kidney problems) in October 1996, again re-confirmed this diagnosis. Louise became part of an "Early Intervention Programme" from birth because of both the "probable diagnosis" of RTS and the fact that she became a below knee amputee (left leg) at age 10 days. (Despite this draw-back she was up and running before she was 16 months old.) Her speech language development was encouraged by taking part in a special programme which saw her progress through using simple sign language then a combination of signs & verbalisation, until she stopped using signs of her own accord. By the time she started school at age 5yrs 8 months, she was no longer using any signing. Although her language development meant it was sometimes a challenge for people to understand her completely.
Achievements at school have been slow but steady but there certainly has been plenty of progress. Louise continues to work at a programme that challenges her without dampening her enthusiasm.
Being the youngest of a large family has both advantages and disadvantages for Louise I guess. On the one hand she is part of a wide circle and that means lots of input and attention from many different people. On the other hand she can be fussed over too much, with many often willing to do things for her that she should do for herself. (Why do something you can get your big brother to do for you seems to be her policy.. come to think of it, I wouldn't mind being able to do that sometimes)
Louise has been admitted to Wellington Hospital on a number of occasions for a variety of reasons and we are regular visitors to out-patient clinics. Most recently, in 1997, she had a further operation on her left thumb, with remarkable results, She first had surgery on both her thumbs to straighten them before she started school. However she continued to have difficulty manipulating pencils etc. The education system here in New Zealand has provided a computer for her use so she has been able to develop skills using a word processor.
There is never a dull moment in a large family and one that includes Louise, ensures an added dimension to the variety that brings new surprises and challenges every day.