Understanding and helping parents cope with diagnosis of children with special needs
This article is contributed by Dr Noel K.H. Chia, a board-certified educational therapist (AET, USA) and registered professional counselor (AIPC, Australia). He is a regular guest writer at the invitation of the LSESnet.com for its web blog.
“The results of our psycho-educational assessment suggest that you child has …”
Autism spectrum disorder … low IQ … dyslexia … mental retardation or any other developmental or learning disorder. What happens when a child is identified to have some kind of a life-long disability? Often the diagnostician (e.g., psychologist or therapist in special needs) just states it matter-of-factly to the parents, who are lost completely how to respond to the devastating news. it is a tremendous blow to these parents and very little is done to help them. The next thing they hear is “you may want to delay one year before you register your child for Primary 1″ and then refer them to some relevant support group for a further follow-up or remedial learning centre for their newly diagnosed special needs child to undergo an intervention programme.
While the psycho-educational diagnosis helps to clarify things for most parents (or families), the real struggle for them, of coming to terms with the fact that their child with special needs would never be normal and that the challenging issues would never go away, would probably take them a lifetime to adapt or adjust to. More can be done to understand and help these parents cope with the diagnosis of their child with special needs. Counseling comes in but its focus should be more on helping the parents to understand and know how to cope with the identified disorder as well as where to seek special needs services available for their child.
In most instances, the immediate reactions from the parents are more or less similar to those seen experiencing bereavement or undergoing the process of mourning. Shock and disbelief being written on the faces of these parents, especially mothers (I have noticed most fathers try to keep a straight face), a sense of unexplainable numbness encompasses them and they feel as if they are totally cut off from the rest of the world. It is also at that moment many parents feel most difficult to accept the results of the diagnosis. They would ask repeatedly if there could be some mistake in the assessment or reject the results because “that is NOT true of my child. I know my child better than you. You saw him only once during the assessment, but I am with him/her everyday. He/She’s certainly smarter than you know.”
As a result, most diagnosticians would rather keep their conference with parents short and simple. The reason is often to let these parents a moment of quiet as well as a chance to recover or let them compose their feelings after receiving the news.
Next, there is often a period of denial. This is a way of coping with the anxiety, fear and stress … and for some, acting normally as if nothing has happened. It is also their need to stave off the unfortunate reality of their plight rather than on their child’s needs. Then there are other parents who appear withdrawn (i.e., they do not wish to discuss or talk about their special needs child) or even become over-protective of their children. This is a “dangerous” phase, I feel, as an early intervention for the child is essential to have a good prognosis of the condition.
Anger and guilt soon follow suit. I have encountered parents (or even an entire family including grandparents, in-laws, relatives …) coming to see me seeking a second or third opinion after rejecting an earlier diagnosis. Anger is manifested through heated words uttered by the parents either at each other or being directed at the professional whom they have sought for a re-assessment. The salient feeling of guilt would creep in, especially for the mother who feels it is her responsibility that she had not done right or enough during her pregnancy. it is at this phase that most parents, I feel, are most vulnerable. They begin to seek some kind of miraculous cure through unproven complementary and alternative treatments which are often costly and time-consuming with no guaranteed improvement.
Next, the parents turn to sadness and despair, wondering what they should do and how they are to cope with their child. This is also a very sensitive phase because such feelings of sadness may precipitate a serious depression - depression, together with profound misery, pessimism and worthlessness, loss of appetite, sleep disturbance and a failure to experience pleasure in activities that are usually enjoyable.
Finally, most parents would accept the fact that their child is special, come to terms with the diagnosis, and become pro-activie to seek practical ways of helping their child and/or coping with the situation. This is also the time when two parents can develop a special intimacy between themselves as they attempt to comprehend their child’s challenging issues in a unique way, creating a special relationship with him or her. Yet, I have also encountered several cases when one spouse has chosen to resolve the problem by walking out of the family, leaving the other spouse to cope with the special needs child. Hence, given the stresses of parenting a special needs child, it is small wonder that I have heard from others that having such a child either makes or breaks a marriage.
For parents who have other normal children, it is important to take note of these children, too. There are cases I have seen when some siblings experience emotional adjustment problems. Older siblings are often expected to take care of their younger sibling with special needs and that becomes an emotional burden for them. Parents are advised never to overburden their other children with responsibility as they, too, have their own needs and time for their activities as they grow and develop.
As children with special needs grow older, their parents should take time and effort to explain to them their condition and challenging issues that come with it. This is done so only if these children can understand their problems. Joining a support group and participating in the activities it organizes would be most helpful to both parents and their children with special needs as well as the other siblings. They do not have to be alone dealing with their problems. They can meet others with similar problems, share interests, exchange new ideas and learn about latest developments in special needs education and services. In this way, not only the parents work to make their world a better place to live, but also for their special needs children.
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