My elder daughter Kelly was born twenty years ago, with Down Syndrome. The health professionals around at this time gave us no hope and actually suggested that I go home and leave her and get on with my life. Yet here we are now, facing another major transition time in her life, as Kelly comes to the end of her schooling in the local secondary school.
Even in those very early days, I was always determined that Kelly would have the opportunity to reach her full potential. As a member of our family, she was expected to be part of all of our lives and, therefore, she had to learn to adapt to different environments and situations. It was important to me that Kelly learned to generalise her skills everywhere. I believe we all need to learn to survive in the 'big bad world' and that it shouldn't be any different for Kelly.
Learning to question
Like most parents, one of the major decisions confronting me early on was Kelly's education. Where would Kelly gain the most from schooling? I decided that an early start was needed and so I enrolled Kelly into two very different Early Intervention programs. One was our local Special Developmental School (SDS) and the other at the statewide Early Intervention Centre at Mornington. I found that Mornington was the most important choice that I had made so far in Kelly's life. Due to its unique program, which included training parents, I learnt to question the professionals involved in Kelly's life. I learnt to make informed choices and also to trust my own beliefs and future hopes for her. I learnt that Kelly was a person first, with the same needs as others. I was supported in my decisions in regard to Kelly's future and encouraged to try new concepts. I learnt behaviour management techniques, assertiveness and to set short and long term goals. The parents' self-help group was a place to share our hopes and dreams and personal survival skills. We were all parents, we were all going through the same anger and fear, and we shared with each other and therefore learnt many strategies for life with our children. Our children were a part of our families, and we all wanted them to be included in our lives and the lives of the community.
At this time I also became a member of a number of disability organisations. I went to many meetings, lectures and conferences. I was asked by the Education Department to become involved in a Regional Integration Committee, which I ended up sitting on for ten years!
Deciding to Include
Out of all of this came my decision for Kelly's schooling to take place in the mainstream education system. Kelly was making no progress at the SDS. In fact she had regressed considerably. She was no longer speaking as she was learning to sign like the others in her group. She and I were extremely frustrated and I spent a lot of time retraining her at home.
In 1981, when integration was not a well-known concept, I enrolled Kelly at our local kindergarten against the advice of many professions. They tried behind the scenes to stop 'this irrational parent' from making choices which they believed were wrong. They did not recognise my understanding of Kelly's needs or that it was possible for Kelly to gain anything from kinder. I was, by this time, a sole parent with two young children and had to jump over some major hurdles on the way.
The first three months of kinder were, in my mind, a trial to see how things went but I realised within a week that I had made the right choice. Kelly's vocabulary blossomed. I knew that with some extra assistance she could learn a lot from kinder. I put in an application to the Commonwealth government for an Integration Aide to assist Kelly's full-time attendance. We were granted some money and Kelly's gains were enormous.
Then came the time to choose schooling options. Under pressure again from the professionals, I visited a Special School - Kelly was ineligible, her IQ not being high enough. I also visited our local primary school. The reception was welcoming, albeit with some reservations, and I chose it as the best option for her. Initially, we only considered developing her social skills but, within the first month, Kelly's teacher approached me believing that Kelly was also learning academically. We agreed it was time to begin an educational program and had many meetings to develop this. Kelly loved school. Her younger sister was at her school too and they were both progressing very well.
Mutual learning
Primary school was full of surprises for all of us. We spent months trying to teach Kelly to do up her shoe laces. It was a friend of Kelly's at school who eventually taught her how to do this, after being asked by Kelly for help. Three times she showed her how to do it herself, praised her efforts, and there we were! In no time at all, I was trying to teach her not to swear, or at least the more appropriate place for swearing! Parents would approach me at school to say how much their children had gained by knowing Kelly - learning patience, tolerance and a wider understanding and acceptance of difference.
I decided at this time that Kelly would benefit greatly from leisure activities, to be with a different social group and to generalise her skills. So I enrolled her and her sister in the local Callisthenics club Kelly was an accepted member of the club, and in her fifth year actually competed with the others. Both of the girls also joined the local Scout group, as Cubs and, later, Scouts. There were no restrictions within these groups about Kelly's participation, no extra helpers, and Kelly was fully integrated into the activities.
Very early on, I became convinced that Kelly was the person most likely to sell herself in any situation and that the best way to overcome fears and prejudice was for her to put her best or worst foot forward! Over the years, while I was always there to assist teachers and others to include her, it was Kelly that usually did the possible or the impossible. I became an active member of the school community and Kelly has been a valued, accepted member also.
Kelly didn't learn to read poetry, to 'do' geography, history or science, though she did go to these classes with her peers and learnt much about life and actually gained a sound knowledge of the three R's. She is computer literate and learnt early how to use a calculator, diary and road map. Teachers used different forms of assessment to enable us to see seemingly small gains in her progression as the really giant steps they have been.
High School
When the time came to begin her secondary schooling, I was scared. After all, she would be faced with a much larger school population, very different structures and new school rules. I had visited most of the schools in our region and knew there were not many secondary colleges which were inclusive. Once again I had to accept that my role would be as a trainer to the school, and I would need to confront and overcome the fears of a new set of teachers and administrators.
We spent six months of Kelly's grade six year on transition to her local Technical school. In terms 3 and 4, she attended the school for half a day a week, gradually progressing to a full day, then two days. Both schools were very supportive and Kelly made real progress. She actually had a head start, knowing the rules, the routines, the locker area, where her classes were, who her teachers were and, most importantly, where the canteen was!
By her second year at the Technical school, Kelly was travelling independently to and from school. She was fitting in well in secondary school and progressing on her modified program. Kelly always attended all classes with her peers.
The biggest disaster in Kelly's school life came when the government decided to close her Technical school. She was distraught be became very involved in the fight to save her school. A very hard life lesson was thrown at Kelly. She was unhappy and her selfesteem took a big dive. Due to the school closure happening within only a few weeks, we were unable to prepare Kelly or her new school for her enrolment in the worst year of most teenagers' lives - Year 9-10. It was also about this time that she was having trouble accepting that she had Down Syndrome. Like all teenagers, she was going through a period of accepting who she was and she didn't like what she could see. However, as with all of the ups and downs in the past, everyone sat down together to come up with some strategies to help Kelly cope with the changes in her life. While Kelly still has some leftovers from that time in her life, she has been able to overcome these difficulties and participate in the school life of her new secondary college.
There have been times when I thought it was time to move on from school and that the continued struggle has been too much. However, each time it has been Kelly who has demanded to continue. This year there have been some 'aide' problems, and Kelly has often been left floundering on her own. Again, just when I was ready to call it quits, it was Kelly who demanded to finish Year 12 with the rest of her peers.
Kelly has done many work experience placements over the past four years in preparation for her life as an adult in the workforce. She has enjoyed them and has developed many skills. She enjoys helping out at the local elderly residents' home, and especially loves working at McDonald's.
Looking to the future
When I was still in hospital after having Kelly, I was given all the negatives and no shining lights at the end of a very dark tunnel. But I realise that Kelly's achievements, like everything else, cannot be judged by the 'norm'. She can't be expected to follow narrowly prescribed learning patterns because she learns what she wants to learn.
Kelly is now looking forward to her school days ending. She has paid work for 3 hours a week at McDonald's and hopes to gain more employment there and elsewhere as well. Her dreams and hopes are very similar to most young adults, and she enjoys having fun and going out with her friends. She goes to the local gym and plans to learn line-dancing in the future.
Our whole family have learned a great deal over the years. However I believe that many, many others have also been taught by Kelly along the way. I now know that Kelly will make it as an independent adult in the 'big bad world'. I am so very proud of all that she has achieved!
Reference: Geoghegan, P. (1996). KELLY - The Early Trailblazer . Interaction v.10 #2 p.16-18.
Reprinted with permission from the National Council on Intellectual Disability.
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