Learn what other parents say about their children having other special needs. Click on the links below to go to the quote. After you read the stories, tell us your own story. And come back soon. We'll be adding more quotes from parents!
We're still trying to understand.
"He is now only 5 months old, so I am still learning and feeling confused more often than not."
Auditory neuropathy was the least of our worries when he was born.
"Aidan was born just a few days early, and there were complications because I passed a stomach virus to him in utero. He had respiratory failure, hypertension, hyperbilirubinemia, along with a host of other problems. When the time was coming close to him going home, the hospital did the standard newborn hearing screen (the OAE), and it came back normal. But the NICU had its own rule that babies with elevated bilirubin levels would be given an ABR, which, in Aidan's case, came back abnormal.
"We had several other ABRs done, with the eventual diagnosis of AN. Because he is so young, we must observe him for at least a year to determine whether his AN will persist, or whether it will go away on its own (which can occasionally happen)."
He seems to be hearing more.
"Initially, Aidan didn't respond to very much sound -- maybe a creaky door or a musical toy. Lately, however, he is responding to our voices, to funny noises we make with our mouths, even to our attempts at calling him. So we are excited."
No 2 kids with AN are alike.
"However, in the last five months, I've read enough to know that AN presents differently in every case. Even my ENT told me that two children can have the exact same ABR results but perform very differently. That is why some doctors will say to patients, 'Don't tell me what the tests say; tell me what your child is doing.'"
I just want to know what it's like for him.
"I have read that people with AN can hear in a number of ways. Some hear sound, but not clearly enough to distinguish speech. Some have moments of clarity and moments of dysynchrony. And I've even heard of someone whose child could hear relatively clearly for months at a time and then lose that clarity again. That is part of what is so frustrating to me as a new AN mom there isn't any definitive answer to what my child is hearing."
I knew something was wrong...
"When my daughter was 18 months old, I started bugging her pediatrician about her speech, and he kept telling me not to worry about it, that it would come. Finally, at age 3, I told him that I wanted her tested and that if he wouldn't set it up I would find a different doctor. He got me in touch with the local school's audiologist, and sure enough, she was hearing impaired."
But I had no idea it could be Usher Syndrome.
"[Our pediatrician] started to ask me questions about family history. Does anyone else in my or my husband's family have hearing problems? I said yes, my mom and my uncle, but they're blind, too (I said, joking around). He asked me if they had retinitis pigmentosa (RP). That floored me because not many people know about RP, and I told him yes. He told me that hearing loss and RP have been connected to signal Usher syndrome within the last 10-15 years...
"I knew about RP because of my mom having it, but she stopped getting tested and treated for it when I was really little because there is no cure. So we didn't know that the hearing had been connected with it..."
We were shocked when we heard the news.
"We were devastated at first. But we're accepting it and doing what we can. My mom was really devastated and blamed herself."