Brian's doctors have always maintained that he is quite intelligent and because of that he would find ways to work around his hearing loss. He has often impressed us with his ability to create his own accommodations.
In December Brian completed his second round of MAPS testing. This testing is done three times a year to see where students are in math and reading. Testing is done on a computer and requires the use of headphones.
His first round of MAPS testing was in September and was incredibly frustrating for us. He had just gotten his hearing aids, and the school as unable to provide the proper technology for him on short notice. I made sure to let his teachers and specialist know that the best scenario for him would be to be tested in a room where the computer speakers could be used rather than headphones, but if that didn't work out, his hearing aids should be removed. I offered multiple times to stop by and teach them how to remove the hearing aids.
After testing I found out that basically none of this happened. I knew I had not taught them how to remove the hearing aids because they never set up a time for me to do so. (This by the way would have taken about 3 minutes to do...it's not rocket science.) However, I didn't know that the rest of my requests had been ignored until it was too late. I was INFURIATED to find out that for much of the testing the headphones were placed OVER his hearing aids which anyone with half a brain knows caused a tremendous amount of unnecessary feedback. Just ridiculous.
I moved on because what else could I do? The school ordered the appropriate equipment. We did our part by getting the replacement battery covers from our audiologist so that the cord could be plugged into his hearing aids. So I was pretty darn mad at pick up on the first day of December MAPS testing when he came to me upset because he had huge gold covers on his red hearing aids. Poor guy. The speech therapist explained that the ones the audiologist provided weren't a match with the cord the school ordered, so they had to use the gold ones. Fine. I let it go and told the speech therapist I would speak with our audiologist and find a solution for May testing.
At the audiologists recommendation, I asked Brian's school if I could borrow the cord and battery covers (boots) so that the audiologist could figure out what the problem was. It was a huge, big deal apparently and I had to wait for the school to get permission to loan me the equipment and then I had to sign my life away so that I could take it off school property.
I took it all and dropped it off for the audiologist. I got a call the next day from Children's, which I missed, and I assumed the audiologist had looked it over and it was ready for me to pick up, so I headed over there (this was one of the lovely below zero days we have recently been treated to). When I told the receptionist why I was there she called the audiologist who informed her that he needed Brian's hearing aids. I told her that was fine, but that we needed them back for school the next day. She suggested we go shop and come back in an hour. Just what I wanted to hear.
An hour later we returned to find that the audiologist had changed the battery covers back to the gold ones basically completely ignoring what we had discussed. I was beyond frustrated at this point after having gotten the kids in out and in the freezing cold three times at this point and after having spent money unnecessarily at the bookstore only to have my request completely disregarded. I was told I would have to wait 1-2 hours which was an insane suggestion, so we left. Brian was upset, but bless his heart, he agreed to wear the aids with the gold covers until I could get it straightened out.
By the time we arrived at home the audiologist was calling (1-2 hours my you know what). He did exactly what he needed to do and whole-hardheartedly apologized for the screw up. Then he talked me through fixing the issue. We also talked about getting red boots to replace the gold ones. He asked me to find out of the school would order them because they can get them MUCH cheaoer, and of course I will pursue that, but in the end we don't really care what they cost as long as Brian is comfortable in them. Finally he said, "Maria, the most important thing is, you need to know, the cord from school wasn't working. You have to program the aids to work with the cord and it wasn't programmed. I fixed it, but there is no way the cord worked for December MAPS."
WTH?!!!!!!!!!!!!!
So I spoke with the speech therapist at school this past week about the audiologists findings. She couldn't believe it. She said she sat with Brian the whole time and he was even repeating questions aloud that were being asked through the headphones. She had headphones in too and was hearing everything the test was saying. I just kept saying, I don't know what to tell you, the audiologist said it wasn't programmed properly. Finally she had an aha moment. She said, "Oh Maria. He had me turn the volume all the way up. It was so loud that I couldn't stand it and had it down around my chin." But that didn't make any sense. Why would he want it really loud with his hearing aids in? And really his hearing aids prevent sound from getting too loud, so it really made no sense. She went on, "Maria. He was listening through MY headphones!" Oh. My. G!
I am really, really proud of Brian for accommodating for himself when the adults failed him a second time, but I am really freaking frustrated with the adults for failing him. Again. Get it together people! I really don't understand what is so complicated about this. I know for a FACT he isn't the only kid in the school who has hearing aids and he certainly isn't the only one in the district. Far from it!
Bless you if you read all of this. I know it's a lot of explaining, but I wanted to be sure to put it out there in case anyone out there finds my blog and is looking for help with their child with hearing loss like I was years ago when I found
No Small Thing. Kirsten's words and advice were so incredibly comforting to me and there isn't enough out there for parents of children with hearing loss as far as I'm concerned. I was always searching for someone who could really related and I hope I can be that for someone in need.
On a side note, Brian does more than just accommodate for himself. He continues to excel and impress all of us with his abilities! Last week he was named Student of the Month for Extraordinary Creativity AND Writer of the Week-IN THE SAME WEEK!! He was sooooo excited to show me the letters from school. His Student of the Month Ceremony is next week, but the Writer of the Week Award was posted at school this week. (In case you are keeping track this is his SECOND Writer of the Week Award this school year!!) And I'm such a dork, so I took a picture.
