Frustration and Freak Outs

When Max was born, he failed his hearing screen.  At the time, I was upset, but I did some quick research, which said 1 in 10 kiddos fails this screen.  We went back to an audiologist about a month later, and he eventually passed the screen.  However, over the next few months I still questioned his hearing.  He wouldn’t necessarily look at you when you talked to him, he didn’t seem to jump at loud noises, and he continued to not make consonant sounds.  I knew what the therapists were thinking, but weren’t saying – autism.  But he didn’t seem to exhibit many of the other traits of autistic children.  He loved to be held and to be talk to and was easily settled down.  Then came the preliminary diagnosis of PBD and, although we were not told the full details of the disorder, we were told to get his hearing and vision checked immediately.  

So we went back to the audiologists, where we explained the preliminary diagnosis and they did another hearing test.  It was determined that there was fluid in Max’s ears making it difficult to perform an accurate hearing test.  We were told that he would need tubes and that they would do a hearing test after the surgery.  Given the predominance of the use of the auditory brainstem response (ABR), which is done while a child is sleeping, I assumed they would do this test while Max was already sedated for the surgery.  We were both surprised when the doctor informed us after the surgery, that he had planned to do hearing test during the follow up visit.   So we headed back to the audiologists, where they did a very brief and fairly inconclusive hearing test, which basically consisted of Max sitting on my lap while they yelled at each side of his head.  I once again explained to the same doctor that hearing loss is often associated with Max’s disorder and that I continued to be concerned, but he assured me that he had thought Max's hearing was fine because he had passed his newborn screen, so off we went. 

For Max’s 18 month checkup, the pediatrician asked if we still had any concerns with his hearing – I think I practically yelled “YES”.  She then referred us to the ECHO clinic in Champaign.  So we got an appointment and headed over to the clinic, where they confirmed what I had suspected – MODERATE TO SEVERE HEARING LOSS.  However, they still needed to determine what Max could hear, so we made another appointment to come back to Champaign to do an ABR.  As I said before, this exam requires that Max be sleeping so yesterday we showed up at the clinic with a VERY tired baby, but of course once they put the nodes on his head and face, there was NO WAY this kiddo was sleeping.  In order to get an accurate read, Max would need to be asleep for approximately an hour.  Therefore, we would need to make another appointment to determine if the doctor is comfortable sedating him.  Then, we would need to make ANOTHER appointment in which they would sedate him and finally complete the ABR. 

This was when I broke down.  I lost it – how many more appointments could we handle??  How many more times can one child be sedated (this will be #5 for Max)??  At this point, I’ve had concerns about his hearing for a whole year and felt like we were getting nowhere (at least that’s what I muttered through my tears)!!  Turns out that when you freak out, people get pretty uncomfortable.  And when people get uncomfortable, they will do whatever they can to not have to keep dealing with you. 

After the freak out, they immediately started fitting him for hearing aids.  I mean – immediately – she went and got the molding and got to work.  She agreed to talk to the doctor about Max’s case and now the doctor has agreed to do the ABR, without an initial consultation appointment.  We are getting somewhere.  Todd has assured me that I was not “throwing a fit” – I was “advocating for my child” – but I’m going to be honest, “advocating” looks A LOT like “throwing a fit.”

When I think back on the past year and half of Max’s life, it’s not sadness that comes to mind.  Or anxiety.  Although there has been plenty of both.  It’s frustration.  Frustration with the doctors not listening to my mother’s intuition telling me something was really wrong with Max.  Frustration at my own helplessness as we struggled to figure out what was wrong with Max only to find out how rare it is and how limited the treatments are.  And of course, frustration with myself for not knowing what to do in so many of these difficult situations. 

But there has also been so much that has come from this frustration.   I’ve met some truly phenomenal people who HAVE  been willing to listen to me and help me and push me to help myself.  I’ve learned how to better advocate for my child, even if maybe it does mean tears and raised voices.  Todd’s aunt told me when Max was first admitted into the hospital when he was 2 months old that I am his advocate and to never be afraid to fight for him.  Obviously, sometimes I’ve done that much better than others, but I can truly say that I am so much stronger than I was 2 years ago.