ALDAmom Panel - Part 1

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ALDAmoms: Experiences, Stories, and Parenting Tips 
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Editor: Last year's ALDAcon included a workshop entitled ALDAmoms, in which two late deafened moms shared their experiences with being a mom to hearing children. One of the moms wrote it up and shared her article with the Northern Virginia Resource Center for Deaf and Hard of Hearing Persons (NVRC).

I've recently gotten a couple of requests for information from late-deafened moms, so it seemed like the ideal time to share this. Our thanks to the presenters, to Wendy Chang for writing the article, and to NVRC.

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ALDAmoms: Experiences, Stories, and Parenting Tips From the October 1999 Workshop of the Association of Late-Deafened Adults

Presented by Eileen McCartin and Wendy Cheng

Notes by Wendy Cheng

NVRC SPECIAL: Wendy Cheng works as a librarian for the U. S. Food and Drug Administration. She has two young daughters: five year-old Abigail (Abby) and one-year old Eileen (Leenie). Eileen McCartin has worked as a coordinator and assistant professor of English at Gallaudet University and is currently a Ph. D. candidate at George Mason University. She has three children: Johanna (age 11), John (age 10) and Patrick (7). Both Wendy and Eileen are members of ALDA-Potomac.

This workshop featured the experiences of two late-deafened mothers rearing profoundly hearing children. The two mothers first discussed their audiological history and then discussed the various experiences and problems they had in raising hearing children from birth to early adolescence.

Wendy grew up hard of hearing and lost the remainder of her hearing in 1996, when hearing aids suddenly became of very little benefit to her. Adjusting to profound deafness was a problem, since she cannot lipread without additional cues (either amplification, or sign language).

Eileen began to lose her hearing in childhood and became profoundly deaf. She has relied on a combination of lipreading, sign language and writing to cope with late-deafness.

Eileen commented briefly about the fact that SOME hearing children of deaf parents expressed resentment at having to interpret and "grow up early", having had deaf parents. However, times have changed and deaf parents today do not need to rely as much on their children since the advent of relay, captioning, interpreter service, and the Internet. According to Eileen, children who help deaf parents are not necessarily going to be traumatized and it might even help develop a sense of empathy in children and be beneficial to them when they grow older.

Eileen commented that once a person becomes a parent, they have to become the responsible party. A deafened spouse may tend to depend heavily on the the hearing spouse, but as a deaf parent, he or she must assume a large part of the responsibility for the child. The deafened parent may need to become more assertive and likely may need to swallow some pride in order to understand doctors and teachers and other professionals.

She suggests having people write things down, telling receptionists that the parent has a hearing problem and NOT TO expect the child to hear his or her name called at the doctors' office. Sometimes the doctor mispronounces a name and the child doesn't recognize it or is too engrossed in a video to hear it. One suggestion is to have the nurse write "MOM deaf" or something like that on your child's chart especially if the child sees different doctors. The deafened mother should tell receptionist to come over to get her when the doctor is ready. Be sure to tell professionals to direct questions to the parent and not to the child.

During both pregnancies, Wendy was able to understand the doctors via a combination of lipreading and amplification (hearing aids in the case of Abby, and cochlear implant in the case of Leenie). The experiences became a bit stressful when she had toxemia and had to be hospitalized near the end of the pregnancies. She asked nurses, lab technicians and doctors to repeat information she missed.

In the case of Leenie, she requested and received hospital gowns with pockets so the cochlear implant speech processor could be located in a comfortable place. The most harrowing experience of the hospital stay was receiving epidural anesthesia prior to the surgical delivery of both babies; Wendy forgot that she does not always understand speech without visual cues and this was such a situation. This is about the only time she has ever regretted not obtaining the services of a sign language interpreter during her hospital stays.

Eileen stated that during the pregnancy process, the ALDAmom needs to be assertive. One way to understand information being communicated during obstetrical exams is to have the doctor write down the vital information. She found that having the doctor write on the white sheet she sat on during exams worked well and she just ripped the sheet off rolled it up and brought it home.

The ALDAmom may hear, "it's not done." She has to be ready to state her needs and give them solutions that work for her. For example, let the doctor know that taking five minutes to write down something will be much cheaper than paying an interpreter to come in for ten minutes and charge for the 2 hour minimum. She may also legally request an interpreter and it must be provided.

Eileen advises the prospective ALDAmom to get a sign language interpreter for the birth even if she may not use one with your doctor at regular visits. An interpreter can give the prospective mother a lot of information and peace of mind. The last thing the prospective ALDAmom needs to worry about is lipreading during labor. The husband should be there to coach and support, NOT to interpret. An interpreter will also help ease her mind after the birth if you have any questions for the nurses or doctors about the baby.

Part Two