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EARLY INTERVENTION - A Parent's perspective - 1999 My son's name is Douglas, he is five years old and is currently attending Carson Street Education Support School, Perth, Western Australia. As a parent, I cannot emphasise strongly enough the importance of Early Intervention in the life of a disabled child. It is now widely recognised that to maximise any child's potential abilities, the optimum time to do so is as early as possible and with the greatest emphasis placed on individual tuition. That tuition must be geared to the particular child. All children deserve the opportunity to achieve their full potential in a supportive environment, initially in the home and later at school. However, this opportunity takes on a particular poignancy in relation to the disabled child who, because of the disability, starts at a greater disadvantage. It is not always recognised that the road to gaining the best tuition for one's child can be a complicated one for the parents. In giving an insight into the the story of my son, I hope that some of these difficulties become clear. More importantly, the very real benefits of Early Intervention, such as the programme offered by Carson Street School, need to be recognised as the best means of ensuring that the disabled child acquires and is able to expand life skills. These skills will enable him/her to to reach full potential and lead to broader possibilities such as mainstream schooling. Douglas was born in 1993 and presented as a normal infant. Occasionally I had some concerns when watching him, an indefinable sense that his concentration seemed lacking, but attributed this to him having a different personality to his sister. At about nine months of age, he began to exhibit unusual behaviour - constant crying, biting, pinching and the beginnings of a negative reaction to being held. As time went by, my concerns centred more on his not reaching the usual milestones, especially in the area of speech, although I was reassured by my G.P that he was still with in normal range. Meanwhile, Douglas's behaviour, as he became more mobile, started to deteriorate in earnest. His crying, sleeplessness, biting etc. escalated and he began to exhibit traits that I suspected were similar to those of autistic children. He refused to be touched, appeared to cut himself off in a trance and showed repetitive behaviours. He was disruptive, throwing food, drinks and toys accompanied by constant and injurious tantrums, whereby he would find any available hard surface against which to bash his head. His speech appeared to remain static, composed of indecipherable sounds punctuated by a sudden clear word, which he would repeat for a few weeks in any context, then forget. His frustration was evident in his behaviour. The stress had an effect upon us all. The difficulty of explaining these symptoms to a G.P or specialist who, when examining Douglas rarely saw the types of behaviour with which I was familiar (because as is often the case with young children at surgeries, they become engrossed in the new environment), was great. His continuing symptoms led to his being referred to a paediatrician. From here, Douglas had a six month session of speech and occupational therapy. This was the first assessment of sorts that gave me, as a parent, any idea of his problems. Extensive tests were carried out - audiology, genetic, EEG, blood counts, Fragile X, neurology. For a year and a half I went back and forth from one specialist to another, trying to find SOMEONE who could tell me what was wrong with my son and how I could best help him. Each specialist did his best but none could offer a diagnosis. No-one suggested that I approach the Disabilities Services Commission for no-one considered as yet necessary to suggest that my son might have a disability. I was not advised that there might be therapies or advice available to mitigate the the ongoing stress of having to cope with Douglas's behaviour on a daily basis. Having, thus far, an idea of what label Douglas did NOT come under, and still sensing that some of his symptoms were similar to autism, out of sheer frustration, a sense of complete helplessness and isolation, I sifted through all the reading material on autism at the local library. I devised my own methods to help him communicate. Whether they were of benefit I cannot say, but from that point, I began to notice a change, improvements in small ways. Douglas was slowly developing a basic means of communicating his his wants by pulling me to whatever he wanted. I still felt a great frustration in never knowing the whether what I was doing was the right thing. I was clutching at straws. When all the medical tests had been completed, still without a diagnosis, the paediatrician advised that the Disabilities Services Commission should now become involved. From here I was told that his clinical assessment would not take place for six months. Luckily, I contacted a clinical psychologist who, knowing my son's story, came to my home and was able to assess Douglass there and then. From that day onwards, Douglas was able to receive home therapy on a weekly basis. It was a chance conversation that led to the name of Carson Street School. My son was still in the process of being assessed by DSC. Having been told of this school and and the tuition offered, which might be of benefit to Douglas, I lost no time in approaching the principal. What I found on the initial interview was a supportive, friendly, peaceful, child-oriented surroundings and staff who were approachable, which to a bewildered parent was very important. At that point, not knowing what Douglas's capabilities might be, I enrolled him for three days a week at Carson Street and for two half days at our local four year olds school. At the latter he was accompanied by an assistant. By the end of the first term his first term had improved markedly. The communication book, written by the class teacher and sent each day to all parents, gave an account of the child's progress and kept me informed of every aspect of Douglas's ongoing improvement and tuition at Carson Street. His teacher negotiated for the book to be sent to the four year olds group so that cohesive progress and knowledge could be combined. It became a vital source of information for me, creating trust, confidence and a valuable means of reinforcing all he was being taught, at home. For the first time I felt that some of my own attempts to help Douglas had been correct. Most importantly, it enabled me to to feel that I, too, was a part of my son's education and facilitated a closer understanding of the therapies to used to help him. It inspired in me a great admiration for the caring and dedicated staff. Ongoing assessments, through Individual Education Plan meetings, at which Douglas's full range of targeted therapies were explained, were also a welcome opportunity to express what I hoped for him. Suddenly we were all working together to help Douglas. Useful advice was always available. By the end of the second term, I had been able to observe Douglas at both placements. While the staff at the primary school had worked to the utmost of their ability with him and he was indeed happy, I began to compare his behaviour there and at Carson Street, and realised that at the primary school he was a "spectator". At Carson Street he was a "participant", confident, outgoing, willing to learn and surrounded by an environment that was specialised in maximising his abilities. If I had not seen him both settings, I might never had known. I therefore decided to enrol him fulltime at Carson Street School. That was June, 1998. During that year, Douglas learned to use the Communication Picture system to indicate his needs, extended his vocabulary through speech therapy and came to be understood by many people. He was then assessed by the Autistic Centre, where it was found that he had acquired so many skills that he no longer fitted their criteria. He learned to love music, began to interact with other children, gained concentration, fine motor skills, overcame his fear of swimming through lessons twice weekly in the school's pool and started to use a computer. He also began to be toilet trained. Much of this he would not have been able to achieve in a mainstream setting. Almost a year onwards, Douglas:
He is communicative, interactive, enthusiastic and able to make choices of personal relevance, aware of his personal health and safety and responds appropriately to directions. He is gaining skills that will see him through life when I, as a parent, am no longer there to assist him. Theses skills have been taught to him by the staff at Carson Street and speak for themselves as to the benefits of the Early Intervention programme offered by the school. While I take great pride in watching my son's continuing achievements and am forever grateful to the staff for their hard work and dedication, I would end by asking "What might have happened, had Douglas been able to attend a school such as Carson Street at an earlier age? How much further down the road to acquiring skills would he have been if I had been guided sooner and made aware of what an Early Intervention programme could offer? How much more able would he be to take his place comfortably in mainstream schooling one day? How many other parents are out there not knowing how best to to help their child?" Education is not a choice between mainstream versus segregated schooling. It is, or ought to be, a matter of obtaining the best possible individualised tuition, to maximise and develop all potential abilities the child may have. The Early Intervention programme at Carson Street does just that. If you would like to share your experiences, or just chat to Michele her e-mail address is mfranzinelli@hotmail.com For the latest about Douglas, click here.
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