Moving Beyond the Grief to Love Your Child with Special Needs
Moving Beyond the Grief to Love Your Child with Special Needs
© CHOO Kah Ying
There are no words to adequately capture the sense of devastation that parents experience when they first learn that their child has special needs. After returning home from the clinic on that life-changing day when I learned of my son’s diagnosis of autism, I looked at my son as though he were an impostor who had usurped the place of my real son. In my shock and grief, I distanced myself from him and thought: “Who is this child? I don’t even know who he is.”
However, that day, I was fortunate to have a good friend who reminded me of a vital truth that had eluded me: “You know, Sebastien is still the same child.” His simple statement woke me up. He was right: Sebastien was the same child, before and after the diagnosis. What had changed was my perspective of him as I was compelled to embark on a journey for which I was not prepared.
Thanks to my friend, I was able to begin the important process of coming to terms with my grief, instead of venting my feelings of hurt at my son. I realized then that my grief did not give me the right to view my son harshly. He was an innocent in my struggle with my own feelings of shock, anger and sadness.
According to a publication by the Washington chapter of the Autism Society of America, this recognition that the parents’ grief should be separated from the child represents the “idealized, final phase” of the cycle of coping with loss and change –“maintenance/resolution.” I was lucky to have arrived at this point early in my confrontation with autism because of my friend’s gentle, but firm, admonition.
At the same time, I need to highlight the fact that the coping process is a cycle, not a linear progression. Essentially, parents will experience any of the following emotions in the circular process of grieving -- shock, denial, guilt, anger, sadness, objectivity and maintenance/resolution –at different phases of our journey. So I am not putting forth the fantasy notion that the grief will just fade away with time. Rather, I am asking us parents to manage our grief in a way that will not undermine our relationships with our children with special needs.
In an article targeted at parents of autistic children, “Don’t Mourn for Us,” Jim Sinclair, an autistic man, eloquently articulates the impact of parental grieving on the well-being of children with special needs. According to Mr. Sinclair, parents grieve because their “fantasized normal child” did not come into being. The clinging to the fantasized child impedes us parents from forming authentic and fulfilling relationships with our children. As Mr. Sinclair put it: “Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them.”
This attitude is damaging because it becomes manifested in our judgmental perspective of our children, our impatience towards them and our embarrassment at eye-catching behaviours in the public realm. Assuming that our children are oblivious to our perceptions, we inadvertently hurt them with our judgments because we are hurting inside.
There is no question that managing our grief can be extremely daunting in the long term. In my experience, I have coped by watching my son cope with the difficulties of functioning in a world that does not make many accommodations for him day in and day out.
Over time, my sense of loss of a typical normal child has gradually been replaced by my growing admiration and pride for this autistic child who is a fighter, in every sense of the word. I recognize that his presence in my life has challenged me to be a better person. Ironically, even though we parents often feel crushed by the burden of helping our children to live in mainstream society, we can learn a lot from our children about what it means to truly live. Our children are a blessing in our lives, not a blight.
However, we will never grasp this ironic fact, if we are unwilling to suspend our desire for the norm in order to see our children as the unique individuals that they are and cherish them in a way that they deserve. Even more importantly, we need to ask ourselves: How can our children stand a chance in mainstream society, if their own parents will not embrace them and fight for them? As Mr. Sinclair articulated it so eloquently to parents: “The tragedy is not that we’re here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?”
Grief colours the nature of our relationships with our children. If we parents are to raise our children with special needs and educate them appropriately, we must first learn how to manage our grief. So to the parents of children with special needs, please do not let your grieving “for your fantasized normal child” get in the way of loving the child who is right before you.
Choo Kah Ying is a parent of an autistic child and a provider of training programmes for parents of autistic children.
kchoo7@gmail.com
© CHOO Kah Ying
There are no words to adequately capture the sense of devastation that parents experience when they first learn that their child has special needs. After returning home from the clinic on that life-changing day when I learned of my son’s diagnosis of autism, I looked at my son as though he were an impostor who had usurped the place of my real son. In my shock and grief, I distanced myself from him and thought: “Who is this child? I don’t even know who he is.”
However, that day, I was fortunate to have a good friend who reminded me of a vital truth that had eluded me: “You know, Sebastien is still the same child.” His simple statement woke me up. He was right: Sebastien was the same child, before and after the diagnosis. What had changed was my perspective of him as I was compelled to embark on a journey for which I was not prepared.
Thanks to my friend, I was able to begin the important process of coming to terms with my grief, instead of venting my feelings of hurt at my son. I realized then that my grief did not give me the right to view my son harshly. He was an innocent in my struggle with my own feelings of shock, anger and sadness.
According to a publication by the Washington chapter of the Autism Society of America, this recognition that the parents’ grief should be separated from the child represents the “idealized, final phase” of the cycle of coping with loss and change –“maintenance/resolution.” I was lucky to have arrived at this point early in my confrontation with autism because of my friend’s gentle, but firm, admonition.
At the same time, I need to highlight the fact that the coping process is a cycle, not a linear progression. Essentially, parents will experience any of the following emotions in the circular process of grieving -- shock, denial, guilt, anger, sadness, objectivity and maintenance/resolution –at different phases of our journey. So I am not putting forth the fantasy notion that the grief will just fade away with time. Rather, I am asking us parents to manage our grief in a way that will not undermine our relationships with our children with special needs.
In an article targeted at parents of autistic children, “Don’t Mourn for Us,” Jim Sinclair, an autistic man, eloquently articulates the impact of parental grieving on the well-being of children with special needs. According to Mr. Sinclair, parents grieve because their “fantasized normal child” did not come into being. The clinging to the fantasized child impedes us parents from forming authentic and fulfilling relationships with our children. As Mr. Sinclair put it: “Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them.”
This attitude is damaging because it becomes manifested in our judgmental perspective of our children, our impatience towards them and our embarrassment at eye-catching behaviours in the public realm. Assuming that our children are oblivious to our perceptions, we inadvertently hurt them with our judgments because we are hurting inside.
There is no question that managing our grief can be extremely daunting in the long term. In my experience, I have coped by watching my son cope with the difficulties of functioning in a world that does not make many accommodations for him day in and day out.
Over time, my sense of loss of a typical normal child has gradually been replaced by my growing admiration and pride for this autistic child who is a fighter, in every sense of the word. I recognize that his presence in my life has challenged me to be a better person. Ironically, even though we parents often feel crushed by the burden of helping our children to live in mainstream society, we can learn a lot from our children about what it means to truly live. Our children are a blessing in our lives, not a blight.
However, we will never grasp this ironic fact, if we are unwilling to suspend our desire for the norm in order to see our children as the unique individuals that they are and cherish them in a way that they deserve. Even more importantly, we need to ask ourselves: How can our children stand a chance in mainstream society, if their own parents will not embrace them and fight for them? As Mr. Sinclair articulated it so eloquently to parents: “The tragedy is not that we’re here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?”
Grief colours the nature of our relationships with our children. If we parents are to raise our children with special needs and educate them appropriately, we must first learn how to manage our grief. So to the parents of children with special needs, please do not let your grieving “for your fantasized normal child” get in the way of loving the child who is right before you.
Choo Kah Ying is a parent of an autistic child and a provider of training programmes for parents of autistic children.
kchoo7@gmail.com
posted by Choo Kah Ying at
5:44 PM
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