By Janet DesGeorges
I started an article last year on the topic of grieving and hearing parents who have children who are deaf or hard of hearing. (deaf/hh) I just didn’t seem to be able to finish it….
I had an experience a couple of years ago in a parent group discussion facilitated by a professional (nationally known, I might add) that felt slightly disingenuous. There was an assumption in the room that every family who had a new baby must be in the throes of grief. And in fact, if the parent didn’t react with enough grief, there was even some manipulation to try and make the parent ‘feel’ it more. I was further motivated to explore this topic when my brother died of cancer last summer, and I was plunged into what could only be described as the darkest period in my life. During that time, I began to question the notion of grief that I had read about in terms of parenting a child who was deaf/hh and having it described as similar to the experience of losing a loved one. My own reaction was, “There is absolutely no comparison!.”
In the same way that there has been an emergence of understanding that the identification of a child who is born deaf/hh to deaf parents needs to be treated differently in comparison to delivering the news to hearing parents (i.e. that deafness may be a cause for celebration, not grief.), the concept that even the word ‘grief’ may not be an appropriate word to automatically use with hearing parents should be explored. Positive aspects about the experience of deafness are often withheld as being ‘out of touch’ with the current feelings of what a ‘hearing’ parent may be going through, when in fact, parents may be ready from the beginning to hear the different perspectives that having a deaf child may also be a cause for celebration.
I have tried several times to sit and write about my feelings in this area, and have ended up with unfinished sentences, half-written wanderings of the mind, and wondering if I was answering a question that no one was asking…maybe the motivation to write this article was just a needed catharsis in my own life. However, my real motivation in exploring this topic is based on the idea that if professionals supposed that all parents experience the same intensity of emotion regarding having a deaf/hh child, the kind of services and supports needed by families might be at risk. In other words, that some parents might experience a delay in receiving certain information and critical support that might result when there is a perception by a professional or parent support advocate that ALL parents will be prescriptively be going through a devastatingly debilitating grief cycle – and they don’t want to give too much information, too soon.
When parents are asked about the amount of information received at the time of identification, they almost always state that they wished for more information, from a variety of sources…from professionals, other parents, and deaf/hh adults. This diversity of information that parents need are often the very sources that help a parent re-form their emotional response. (i.e. the anxiety of wondering, ‘Will my child lead a ‘normal’ life?” is often relieved by meeting other deaf/hard of hearing adults)
One parent shared her perspectives with me on this topic, “ The experience is by no means like the grief with death - I still had a child to love and hold… I just had to let go of the idea of easy communication/easy learning... and periodically come to terms with the reality that her milestones are her milestones, and can't be compared with her hearing friends and cousins... and that there are people in the world who will see her as "less" even though I look at her and think "more". It wasn't so much of a saying "goodbye” to my dreams as a saying "hello and welcome" to new ones.
Susan Gregory, in her article entitled, “Challenging Motherhood: Mothers and their deaf Children” (2004) said it this way, “ While some mothers undoubtedly feel these powerful emotions and go through such stages of adjustment, with others it is far less clear that this is the case. There is a danger that the expectation of grief and despair may become prescriptive, that all reactions are accommodated to this model, preventing attention to other equally significant reactions. Also, mothers who do not go through such stages and do not publicly admit feelings of grief may, with the widespread adoption of such a model among professionals, be seen as pathological. (Gregory, S., 2004)
In an abstract describing the book, “Families and children with hearing loss: grief and coping.” By Kurtzer-White E, Luterman D. explores the idea that, “Parental coping has been changing with the inception of newborn screening as we move from a parent-initiated model of diagnosis to an institution-initiated model. …The grief models, based on the death experience, usually employed to describe parental reactions to the diagnosis may also be inappropriate.”
I am very interested in exploring this topic further from a ‘parent perspective’ . I would love to hear about your stories…your thoughts… your experiences in the shared journey we have embarked upon in raising our deaf and hard of hearing children. Agree or disagree with these thoughts, challenge or substantiate these ideas!! Please send your views on this topic to janet @ handsandvoices.org
In conclusion, the simple idea that every family will react differently to the news of having a deaf or hard of hearing child should be in the hearts and minds of those who serve and disseminate information to families at the time of identification. Professionals have come a long way in understanding that the emotional journey needs to be acknowledged in the ‘technical’ support they offer. However, an automatic assumption as to the level of ‘grief’ experienced by families may be just as detrimental as the old idea that ‘emotions’ had nothing to do with what happened in a professional’s office. Ultimately, the joy and challenge of having a child who is deaf or hard of hearing has replaced any feelings of ‘grief’ in my own life as a mother, and want that acknowledged as heartily as any other emotion that would be written or researched about.
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