Hearing Loss Is Devastating To Any Parent
The Impact Of A Child’s Disability Is Emotional To All
Parents are often told, after recently completing a child testing diagnostic process, that “you have the same child that you went into the testing booth with – it’s just that you’re looking at him/her differently now. By this I mean that the ‘problem’ at this time is the parents problem, not the child. For the parents, it’s a grief reaction; the impact of hearing loss is devastating! They’ve lost the child they thought they were going to have and the life they expected to live.
This will invoke for the parents many feelings of loss. For the child, there will be feelings associated with the hearing loss, but these will not be one of loss as almost all children with hearing loss have never heard normally or have no memory of hearing.
These children have little or no concept of what they’ve lost. In the past, I’ve compared the parental loss to a death, but I have begun to see that this is no longer accurate.
In a death, there’s finality to the grief, there’s a burial and life can go on, albeit with pain and loss. With hearing loss the grief is chronic, lived with 24/7. The child is a constant reminder to the parents of this loss.
No matter how well adjusted the parents seem to be to the reality that their child has a hearing loss, there will be trigger events that remind them of the loss and those initial feelings of pain and sorrow return.
Triggers can be as simple as a birthday party or the anniversary of the original diagnostic evaluation. What seems to happen after the initial pain of the diagnosis is that parents learn to live in a bubble of “normal” hearing loss and adjust to understanding that hearing loss is a disabilty of their child. So they go on each day trying not to think about it.
The trigger events remind them just how abnormal their life really is and what they’ve lost.
With the advent of newborn screening the diagnosis of hearing loss is, in most cases, going to be before the child is three months of age. The very early diagnosis seems to be a mixed blessing.
In a recent study at Emerson College, parents of children with hearing loss were asked if they would have liked to know at birth, if their child had a hearing loss. The majority answered “yes” (83%) and gave some of the following reasons:
- We could have offered earlier amplification or sign language, instead of silently moving mouths;
- Because I would have had more time to give the very important communication she missed for two years;
- Only because of a better understanding
Those parents who said “no” (17%), they would not have liked to know their child was hard-of-hearing, gave the following reasons:
- I guess I was glad that I knew at 2 days so we could get started on what we needed to do, but I missed having the bonding time;
- Parents need to bond with the infant before getting swept up in the issues of hearing impairment.
- Not knowing immediately gave us (Mom and child) a time to bond normally, but I’m also thankful to have found out before 6 months;
- She was too sick. Knowing at birth would have been too depressing.
My experience with parents is that those who found out that their child had hearing loss at birth, are grateful that they found out so early; but regret that they didn’t have time to enjoy their baby.
They had to hit the ground running and couldn’t delight in their newborn. It seems to take a while for the early diagosed parents to recognized their loss.
At first, gratitude for the early start dominates their thinking. It’s only when they have time to reflect that they realize what they’ve lost.
Parents with a later diagnosis often felt guilty that they had taken so long to get started and did not always appreciate the time spent thinking of their child as normal hearing.
They think of this as wasted time. I often assure them that they got a great gift in that they had this time to enjoy their child. The consensus among parents is that the most desirable time to have found out their child had a hearing loss was after three months and before six months.
Unfortunately, most screening programs are not designed to detect hearing loss after three months of age because of the difficulty of locating parents of newborns after they leave the hospital and the expense of setting up equipment in every pediatrician’s office.
Much training and effort needs to be continuously expended to provide audiologists and hospital personnel with not only the technical skills to diagnose hearing loss in very young infants, but also to develop the skills to support the infants of the parents at an emotionally vulnerable time.
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