Being deaf myself, I have never had to go through the stages of grief and acceptance that hearing parents go through when they discover that their child has a hearing loss. Parents of newly identified deaf and hard of hearing children go through the following standard stages of grief and acceptance:
- Denial - Some parents may deny the fact their child has a hearing loss. Sometimes this stage manifests itself when parents insist that their child communicate orally or through sign language, when the child may be better suited to a different method of communication or learning.
- Anxiety - Parents learn things like "the average deaf high school graduate reads at fourth grade level" and worry about their child's future academic abilities and employability. They worry that their child may not be able to communicate with hearing children in the neighborhood and have friends.
- Depression - Some parents ask themselves, "Why us? why our child?"
- Anger - Some parents think, "It's not fair! This is not fair to us or to our child! We/our child don't deserve this!"
- Guilt - Parents may feel that their child's hearing loss is the result of something that they did, or did not do. For example, ear infections when untreated can cause hearing loss - but today doctors must make judgment calls on whether to prescribe antibiotics for ear infections because of the risks of antibiotic overuse.
- Acceptance - Parents learn about deafness and hearing loss. They become acquainted with others in the deaf/hoh community, and see that their child can have a normal, fulfilling life. It becomes clear that their deaf or hoh child can have a good future as a productive adult regardless of the communication mode that is chosen, or how severe the child's hearing loss is.
Parents' Stories of Acceptance
(To protect parents and children's privacy, names have been deleted or changed)
Identified as Newborn
My son's hearing impairment was identified through newborn screening; I had no idea they even screened for hearing. I had a perfectly normal delivery, and the baby seemed fine. I had had a fairly normal pregnancy, although I had had a virus (possibly flu) at six weeks, which had me concerned throughout the pregnancy that something might have gone wrong. My ob told me that with the flu, either the fetus would live or it would not. But I still worried.
Insensitive Hospital Pediatrician
The ped on call told me on Bobby's third day of life, the morning I was being discharged, when I was alone in my room with my brand-new baby. What he said was, "I don't want to sugarcoat it: he failed the test three times." He then went on to tell me what steps would take place (ABR, etc.), but all I really heard were words like "brainstem" and it really freaked me. At that point I started to cry, and he started to backpedal, saying the baby showed no risks and was probably fine. I felt his delivery could have been better timed (at least wait until my husband was there) and more compassionate, but I've met very few doctors who have that ability.
Hearing Loss Confirmed
When Bobby was one month old, we had the ABR that confirmed his loss; the audie was amazingly compassionate. I remember being overwhelmed by wave after wave of new insight: "ohmigod, my baby can't hear! He can't hear me sing to him! If he can't hear, how will he learn to speak? How will I be able to communicate with him? How will he communicate with others?" It was both emotional and practical. I didn't know ANYONE with hearing loss, knew of no other children born hard of hearing or deaf, had no information to draw on. I cried every night for a month, mourning the loss of the child I had expected, and for what I thought he was missing.
Bobby and Mom Today
Bobby is now almost two. I know a plethora of people with varying degrees of hearing loss, am connected with tons of parents of HOH and deaf children, know much more about communication and speech and language. In two years, I have accumulated a wealth of information. But more importantly, I have watched my child: he is happy and healthy and sweet and inquisitive and so much fun. He is learning to communicate (painfully slowly, for me!), but he is very easy going and happy. I am truly no longer concerned that he will learn to communicate, that he will most likely speak and be understood, and that he will be very fortunate indeed if this is the only obstacle life hands him (which it won't). Of course I wish he'd been born with his hearing intact. But he wasn't, and I can see even now that that is not a terrible thing.
BTW, his loss is due to connexin 26, which my husband and I never knew we carried, and which has not shown up anywhere else on either side of the family.