Fear of the unknown is often worse than the reality of the baby being deaf or hard of hearing. Parents are sometimes given the news that their child is deaf or hard of hearing, but are given little in the way of an explanation of what this really means. Understanding what it means to be deaf or hard of hearing promotes healthy adjustment and coping.
I needed to understand hearing loss and why it happened. That was an issue for me because I wanted to understand if someone, including myself, had made a mistake when he was sick with meningitis. I needed to know if something could have prevented him from becoming deaf.
One of the most valuable things for us was to join a Parent Group. Being able to talk to those who really understood what we were going through helped tremendously. Even more important was being able to see children who were deaf and hard of hearing who also were older than our own child. We were able to see just how typical they were, and it helped us to realize that she was going to be okay.
I always had a long list of questions for the audiologist every time I saw him. I wanted to know what she heard, what hearing aids would do to help her, what options we had for communicating with her, etc.
We were in the mall and I saw two deaf people signing. I knew no signs and had no idea how I was going to communicate with them. I just knew that I had to connect with someone who understood being deaf. Prior to my child's diagnosis I would never have done anything like this, but it is amazing what you will do when you are starved for information and don't know where to find it.
Our family and friends were supportive, but they didn't really understand what it was like for us. Spending time with other families who shared our experience helped us relax and find the comfort and understanding we needed. In this group, hearing loss was the status quo, not something to be pitied or feared.
For most parents, finding out all we can about our child's being deaf or hard of hearing and what it will mean in terms of language acquisition, communication, family dynamics, education, and social development is the key to coping.
As we take our child from appointment to appointment, we are bombarded with unfamiliar technical and medical terms. We know we need to be asking the right questions, but don't even know what those questions are.
To make sense of it all, many of us turn to libraries, the internet, or agencies that serve individuals who are deaf or hard of hearing. Some of us even walk up to complete strangers who are wearing a hearing aid or cochlear implant, or who are communicating in sign language. This quest to educate ourselves is something all parents with a child who is deaf or hard of hearing have in common.