It Could Be A Parent’s Nightmare
By Ronald Kennedy
April 2, 2023
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. How emotional parents deal with hearing disabilities is measured on different levels and something to consider.
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.
Children Are Clueless
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 disability 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 had 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.
Parents Graditude Turn To Hearing Loss Guilt
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 diagnosed 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.
The Day Care Dilemma
As a child age, parents’ start to think about the next step, the child’s education! They must first think about day care and finding a good school. They find a few, but how good are day? The search is on.
Parents then start thinking about all these kids grouped together, and the chances of kids catching something from another is high.
The number of children spending time in day care grows each year. Health officials have estimated that approximately two-thirds of all preschool children and three-quarters of all school age children need some sort of child care while their parents’ work.
With this rise in day care usage comes and increased risk of illness to the children who participate.
Infants and toddlers in day care settings are twice as likely as those in home care to contract an illness that last more than 10 days, causes a fever of at least 102 degrees for three or more days, or requires medical attention.
It’s ridiculous to me, how a parent would want to send their child to school with a fever this high.
Germs Jumping From Child To Child
For a variety of reasons, germs easily spread from child to child in the close quarters of the day care setting. A variety of infectious organisms have been isolated from day care workers and children. Among the most common are:
- Giardia lamblia
- Escherichia coli
- Entamoeba histolytica
- Haemophilus influenzae
- Streptococcus pneumoniae
Children with hearing loss, regardless of the environment they’re in, can get very sick just like hearing children. Nothing no different. But they seem to easily catch things from other children within the educational system, who seem to bring all sorts of germs to school.
It’s bad enough to deal with a child suffering from partial hearing or complete hearing loss, now they have to deal with some type of illness of their child, something that they caught in school. (It seems you feel damn if you do, and damn if you don’t.’)