Last year my wife found out the cancer she had in remission re-emerged. After not wanting to go through everything again and letting it run its course to her passing away, I convinced her to fight for our childrens sake. Right or wrong she chose that path. After aggresive treatment we found out in December it is in remission… again.
This is great news! We celebrated and looked forward to a Merry Christmas and a Great New Year!
Now onto my wonderful children. My daughter was speaking at 11-12months old, mama, dada, waving and speaking byebye…then she stopped. We brought this up to her doctor three times, three different appointments, everytime he said “She is not around other children her age, its typical yadayadayada” We would point out she digs, tugs at her ears a lot, he would say “Its just a baby exploring her body”
Fast forward to December our son who is 9 developed migraines for which we went to the doctors for, got prescribed some meds that do seem to help. Then on a follow-up appointment for my son, with another doctor in the same working group I decided to take our daughter for an “unofficial” second opinion. On December 16th he took all of one minute to look at her records and realize something was wrong.
Doctor: It says she was speaking at 11 months
My wife and I: Yes
Doctor: She is no longer speaking?
MWAI: Nope.
Doctor: We have a problem.
After a referal to Pittsburgh Childrens Hospital, for a possible diagnosis of autism my heart sank. But she is our daughter and we have fought battles for years so this was just another mountain we have to climb together, as a family.
Then I start thinking, her hearing doesn’t seem to be that well, but she does seem to hear, I think. I do my home test, as she went to sleep I went over her head and banged a wooden spoon on the back of a pan. No response. I called her doctor, the one who insisted nothing was wrong, and got a referal to a local audiologist.
The local audiologist appointment, was fairly quick as he was unable to get her to accept the earplugs for either the tympanometry(sp) or the otoacoustic (sp) tests, and was not set up to do the visual/behavioural audio testing. So he refered us to Pittsburgh as well. After making an off-the-cuff diagnosis. He said he was 99% certain she had hearing problems, and by her behavior he didn’t think she would be autistic.
Good news? Bad news? I didn’t know and I didn’t care, I just wanted to know what was wrong so we could start the appropriate therapies.
We finally have our Pittsburgh appointment. After a many hours drive we arrive with her and visit the behavioral section, where after a few hours of questions, tests (MCHATS ect) and playtime with her. The Doctor is fairly confident in saying she in fact does have something in the PDD range (autism aspergers ect). Head a few blocks down to the audiologist, and she gives us more news, after running all her tests she is fairly confident in saying our daughters hearing loss is somewhere between severe and profound and they will have to sedate her in a few weeks to find out for sure.
We go back down the street with these findings and ask the behavioral doctor if that changes her assessment, nope.
It was like a fucking two-fer a kick in the nuts and a eye gouging for good measure, one or the other would of been easier to deal with, but both! We have to live with it, and we have to work through it. But it pisses me off to no end, that we could of had help starting a good eight months ago, when we first brought her ear pulling, tugging digging up to her doctor. We know she heard at one time, how she lost it we may never know.
But fuck me for allowing her first doctor to tut tut our concerns and fuck her first doctor for tut tutting our concerns.
I contemplated suing the first doctor but won’t do that, he missed something, its just as much our fault for not pressuring him each time. But I cannot help but wonder, if it was one of his friends children or a relative, would of he proceeded differently. But suing him, chastising him will not change the fact that our perfect wonderful, beautiful daughter is not normal, she is beyond normal she is unique.