Our second son, Harry, is now seven. He has Fragile X Syndrome which is a genetic condition and causes intellectual impairment, behaviour problems, speech problems and various other things. In Harry's case he also has some medical issues: epilepsy, asthma and one or two other things. He also has a poor idea of life-preservation and has been in the emergency ward at the hospital more times than I care to remember, most notable of these were the loss of one of his permanent front teeth and the partial amputation of his right index finger, fortunately saved by a skilful surgeon but forever scarred and bent. Luckily he is left-handed!
Included early
His condition was diagnosed when he was two and a half and he was given support by the State department's early intervention team. I took him to the local Mum & Toddler group and later to the four year old kindergarten programme. He was allocated support for the two mornings per week of the kindy programme and it worked very well. He was happy, doing more or less that the other kinds were doing and fitted into the group well.
Then came pre-school. His support from kindy was continued into pre-school. He had a very experienced teacher and was with many children whom he knew from previous activities. He made some very significant gains during that year.
Choices
At the end of that year it dawned on us that we were going to have to make some choices. We had by now learned that aides are often supplied to include a child with intellectual disability up to pre-school level, but that this was not the case when that child came to regular school age. We talked to people, listened to advice, went to see the nearby education support facilities and ultimately made up our minds that Harry was not ready for grade one ...AND
we were not ready to commit ourselves to entering the special education system. We decided to ask that he repeat the pre-school year to give him some time to mature (and to give ourselves time to really find out what our options were!)
The second year at pre-school was "OK." He had a different teacher, support, and a new group of classmates. I can tell you that it was very hard for me to take him back to the pre-school when all his mates were entering 'big' school. He did not make so many gains in that year but did continue to progress.
Different viewpoints
Then came decision time! We knew by now that aide applications were worked out during the third term, so we got in early. We told the school that we wanted Harry to enter Grade 1. The Principal would not consider this without adequate support, including a full-time aide and we knew that these were as rare as the proverbial "hen's teeth"! For a time it was 'stalemate' and there developed an uneasy relationship between us and the school where there had previously been a good one. We were prepared, if necessary, to go through the entire 'Section 20' procedure which is the part of the WA Education Act which gives Principals the "right" to exclude children from school under certain circumstances. I believe that the Principal was prepared to do this.
Education Support vs. Supported Inclusion
I have to say that I could always see his point of view. Including Harry into a regular classroom at that stage, without support would have been disastrous and of no benefit. I knew that the Principal had the best interests of his teaching staff at heart. We, on the other hand, had what we believed to be the best interests of our son at heart and were prepared to go to any lengths to achieve what we considered to be his right - to go to his local school with his friends.
Pilot Project... to the rescue
Fortunately for all concerned, Harry was offered a place in the Education Department's Pilot Project into Inclusion. This is a two-year project which had already been running since the previous January, so Harry was to enter half-way through. The project aims to look at the feasibility of inclusion of children with special needs into regular schools.
There are four other children in it, from various parts of the state and with varying disabilities. It is funded separately from the Education budget and provides the participating schools with all resources needed to fully include the child. In Harry's case this means: full-time assistance (which is vital at this stage); extra assistance at recess periods (which is now withdrawn and no longer needed); extra in-service training days for his teacher and aide; and regular meetings with all team members, including parents, to review his Independent Education Plan (IEP). School Age Therapy Services (SATS) provide regular speech and occupation therapy reviews and programs for the staff, and the Visiting Teacher also provides support and resources, specific games, computer software and programmes etc. which are suitable for Harry's needs.
The Project is currently being assessed by an independent assessor from the university who has had regular meetings with all parents and teaching staff of all the children in the project.
The Right to Choose
So... this all sounds wonderful and I know that some parents are thinking "wow, great!" and others are thinking "Half her luck!" I also know very well that some parents of kids with special needs do not want their child in main stream. I know that a lot of education support schools do a fantastic job. What we wanted, as parents, was the CHOICE to send our son to the school we thought most suitable for him, just as parents of any 'regular' child has, and for a great many reasons we decided that it would be his local primary school.
So, how well has it worked?
From our point of view it has been a tremendous success. We were aiming for social inclusion and took the view that any academic achievements would happen best in a higher-functioning environment. Harry IS making academic gains, he is beginning to write a little, he has an increasing sight vocabulary for reading, his speech and conversation skills have improved dramatically, and there are not many activities in the school day that he does not take part in. But the really heartening thing is the way that he fits in at school. There were many situations in the beginning that we worried about and thought that he would not be able to handle - assemblies, swimming lessons, excursions, recess time, joining-in, telling news. He has taken these in his stride.
Friendships
He has been invited to about seven birthday parties from his classmates (and at his birthday recently I had 24 six year olds!). He is often invited to other kid’s homes to play and many of them want to come to our home. He was given a special award at assembly recently - 'Aussie of the Month' - which was wonderful to see, but for my husband and I the best part was the spontaneous applause and cheering that occurred when his name was called out. All that day, children were shaking his hand and congratulating him. As we walk along the street, kids talk to him and share their lollies with him. His classmates, and even the older kids, show him friendship and kindness - I am not aware of a single case of bad treatment towards him.
Ingredients for success
All this takes certain ingredients before it can be successful. You need the willingness and enthusiasm of the school staff and I am happy to say that we have had that in full measure. There were, naturally enough, some concerns and nervousness at the beginning (from us as his parents too!), but these have been overcome. The teaching staff have been adventurous and flexible in their approach and I think they would agree that by adapting their methods to include Harry more easily, the other children have also benefited as not all children are able to learn in the same manner.
For me, as a mother who loves her 'special' boy, the most heart-warming thing is the fact that all these people - teachers, staff, other parents, aides, and especially the other children - have now had the opportunity to really get to know him, get to see the personality beneath the disability, and the wonderful thing is that most of them genuinely like him. He is very much a part of the school and the community.
I can think of no better way to finish than by quoting a bit of conversation between two pupils that was reported to me by Harry's teacher and which, for me, sums up one of the best results of inclusion of children with special needs into the regular community:
1st child:
"Oh I know Harry, there's something the matter with him".
2nd child:
"No there isn't, He's just different that's all. We're all different you know!"
Reference: Cudlipp, S. (1996). "We're all different you know" (A Happy Tale of Inclusion). Interaction v.10 #2 p.32-35.
Reprinted with permission from the National Council on Intellectual Disability.
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