“Benny Can You Hear Me?”

Once settled in Charleston, our first order of business with regards to Ben was the hearing aid consult.  Dennis and I  both entered into this with some degree of hesitancy.  Not because we couldn’t accept that our son had a hearing impairment but because even after two ABR’s, which was  the best way to check the hearing of a non-verbal child, there was uncertainty on the part of the specialists about the extent of Ben’s hearing loss.  One thing we had learned thus far was that the rarity of Ben’s condition left everyone in “uncharted territory”.  While frustrating for two young parents who were only looking for definitive answers, in the end this was probably a good thing for Ben.  All of the uncertainty taught us to question often and put no limits on our expectations for Ben’s progress.  In the case of the hearing aids, though we were being told they would have a tremendous benefit toward Ben’s speech development we were seeing great strides in his receptive language without the aids.  It just didn’t seem like Ben was having trouble hearing us.  However,  we did not want to stand in the way of his growth in any way so we left it up to the experts to tell us what we needed to do.  The result, Ben was fitted with behind the ear hearing aids which he hated worse than the glasses.  The price tag was about eleven hundred dollars with little help from the insurance company.  Ben’s teachers, therapists, Dennis and I all strongly encouraged Ben to wear the hearing aids for about nine months thinking that he would get used to them if they were improving his hearing to the degree that we were being told.  That never happened

.  We finally gave up and a few months later yet another hearing test graded Ben’s hearing in the normal range.  This was welcomed news but just added to our growing frustration with the so-called experts.