Auditory Neuropathy

Update: I wrote this short post mentioning Kieran's audio neuropathy to try and connect with other parents of kids with AN or Auditory Neuropathy Spectrum Disorder (ANSD).  I linked myself to a blog of a mom who did a post for special needs moms.  She has a daughter who has a permanent hearing loss caused by her stay in the NICU as a baby and life saving medications that can damage a premie's hearing. In linking up I did find a mom of a 15 year old boy who is also a Deaf and Hard of Hearing teacher too.  We talked on the phone and she was a wealth of knowledge.  It was good to connect with someone who lives and walks the same types of issues and know that there is someone else out there that struggles and lives in the same way.  Kieran's AN is not easy.  Most people just think he has a hearing loss and don't understand the way in which he hears. The static on top of the hearing he gets from his hearing aides along with what natural hearing he has comes and goes.  We're told that if he has a fever his static will probably be more substantial or things can improve and get worse in hours.  I think of tonight as the perfect example.  Kieran whines, cried, or screamed tonight from 4:00 pm until approximately 6:00 pm.  He mumbled and it was hard to make out what he was saying.  He was clingy and wouldn't let me put him down.  He would make his body go limp and was just overall grumpy and downright angry.  But, all of the sudden he was talking crisper and clearer and in a much better mood. He was smiling and a little goofy, polite and kind.  He was like a different kid and although we don't know for certain that his AN improved during that time we wonder and think so.  The mumbling to all of the sudden talking clear are what makes us believe this along with the dramatic mood change.  It isn't easy and I get frustrated because a lot of times he is "that kid".  The one who is inconsolable and appears to whine and get his way, when in actuality he is protesting life in general.  His view of the world in those moments are "this sucks".  I can't hear you and you can't understand me and I just am angry!  I feel better writing about this.  It makes me feel better that he had a solid good hour of calm and fun time with all of us.  Here is a link to a video on youtube that allows you to hear what it is like for Kieran at times.  His audiologist thinks he must have a mild case of it since his hearing aides to help.  If the aides didn't help it would be because all they would do is amplify the static.  Maybe when he is older you'll see him take out his hearing aides when the static is louder and over stimulating him.  We have no idea.  I hope that as he gets older he's able to share with us what it is really like for him. Here he is last winter reading his book.


I will post more about K's AN this weekend. If you came here through my link on at Kellys Korner please come back or shoot me an email. We would love to know other families of children with AN. Leighmcarter@hotmail.com