We know that parenthood brings joy to many families, but we also realize the difficulties and struggles parents face particularly in the early year stages of the child’s life. Working with families and children with special needs we have learnt much about the impact a child with special needs can have on the family unit. It brings joy and difficulties, but highs and lows have been described as being “very different” to what many other families experience.
The initial reaction to a diagnosis of special needs, varies from one family to another. For some the diagnosis is a relief, as they finally have an explanation for themselves (and others) as to why their child is different from other children. At times, these parents may have suspected that something was ‘not right’ and had prepared themselves for the diagnosis. For other parents, however, the diagnosis comes as a massive shock and feelings of grief, devastation and helplessness can often follow. It is at this early stage that some families need support and intervention. The journey of a family who has a child with special needs is as individual as their child.
When the families receive a diagnosis, the dreams and aspirations they had for their child may no longer be appropriate. I reflect back to a story that was sent to me by a parent, whose child had been diagnosed with Autism. The story is entitled “Welcome to Holland” by Emily Perl Kingsley. It is a story about parents who have spent years planning a trip to Italy, only to find out that their plane lands at an airport that is not in Italy, but lands in Holland. That is not to say that Holland is a bad place, it’s just a different place. The parents now have to learn a whole new language and meet a new whole set of people that they would not have met before. The story talks about the fact that there are many wonderful things about Holland, but it also talks honestly and reflects on the hurt, the pain, and the disappointment that the family feels. If you have time please read the full story at http://www.child-autism-parent-cafe.com/welcome-to-holland.html
I believe the story crystalizes how they feel about the diagnosis in a very vivid and honest way. In my experience of working 26 years with families who have received such diagnosis, it seems a honest and concrete portray that we can all relate to. There is real dilemma that many parents find themselves in when they discover that the child has a special need. The story goes on to say that their child does bring them joy in his or her own way, but the circumstances are unexpected, and as a consequence of their baby’s special needs, the circumstances changes their lives forever.
It is vitally important, in my view, for all educators, to better appreciate and understand the needs of these families and the challenges they may routinely encounter. How can we help? A number of studies have shown conclusively two key areas, one for local community to better understand and accept children with special needs and two; early diagnosis and early intervention can make a real difference to the child’s development. Parental involvement alongside a therapist can help the child to develop skills communication (Weston and Laureau 1991, Crozier and Davies 2006) and be beneficial to the child and his/her family. Evidence indicates that parental involvement benefits everyone involved – the child, parents, teachers and schools (DfES, 2003). It is with that knowledge that the VIE is embarking on providing early intervention services for our children and their families.
Early Intervention programmes such as Hanen in Canada and Early Bird in the UK, have helped parents come to terms with the diagnosis, by helping them learn technique and strategies that will help support their child’s needs in the home.
Recently, the VIE and The Association of Parents for Thai Persons with Autism (AU-Thai) have jointly been looking into developing a local version of an early intervention programmes here in Thailand. These programmes will provide personalised support for each family, particularly at time of initial diagnosis and in the crucial first three to four years of the child’s life.
The VIE early intervention programme will focus on parents receiving training either individually, with their child or in groups with other parents. The intervention aims to help parent’s interact and respond with their children in certain ways, which help their childs communication and learning. Studies suggest that when early intervention is delivered by parents (when supported by a training specialist in key areas) there is a marked improvement in a childs outcome, such as, understanding of language and the development of key skills needed for the first few years at school.
We will be collaborating with both UK and local Universities to develop our early intervention programme. The VIE are planning to open the door to a newly refurbished and resourced early intervention programme in the new academic year.