Last year, sometime before Easter, I got a call from the nurse at Clooney’s school saying that he had failed his hearing test. Nice lady, very concerned; she added that she had tested him on two separate occasions to make sure that the results were accurate. As she told me how he had performed on these tests, I had to admit that I wasn’t surprised. Clooney had intermittently failed and passed hearing tests all of his life, pretty much. We could never get a confirmed diagnosis from his doctor, but there had always been something there that made me suspect…I don’t know….that something wasn’t right.
I had always worried about him, in ways that I hadn’t for his older brother, right from the beginning. I was really sick with bronchitis in the weeks before his birth. On the day after I finished my course of antibiotics, Clooney was born. I had gone in for a routine non-stress test, because of my “advanced maternal age”, and they found that the amniotic fluid level was too low. Within an hour, labor was induced, and Clooney came out so quickly that he was bruised all over. The cord was also wrapped around his neck, so I didn’t get to hold him until almost an hour had passed. He was a good baby, but sick a lot. He often caught RSV and needed nebulizer treatments. I figured it was because he was a winter baby (again, unlike his brother); all of the indoor contact and confined germs just conspiring against him.
He was slow to speak when he was a toddler. At first I thought, well, he has Edison to always tell us what he’s trying to convey, so that’s why he doesn’t speak. He obviously understood every word we said. He was just waiting until he could speak clearly to actually articulate his many thoughts. However, my parents worried, finally convincing me to have him evaluated, which I did, through a state-run program for early intervention that diagnosed him with a “four month delay” in speech. At the time, I wasn’t alarmed at all, because those baby milestones are all kind of relative. Four months wasn’t a big deal at that point, you know? They suggested speech therapy and put him on a waiting list for it, but by the time his number came up in that lottery, his language skills had exploded! We literally could not shut him up. Everyone loved Clooney, but no one could deny that the boy could talk. His loquaciousness was the first thing anyone who had spent any time with him would mention.
In restaurants or other crowded places, he was different though. He didn’t talk in restaurants. He didn’t listen in restaurants. In restaurants, he wouldn’t even try to be present. He was always in his own world, doing things with his hands, making weird sounds, looking at things all around the room. There were times when, looking at him across a table, I worried he might be somewhere on “The Spectrum”, but the evidence was so fluid that I didn’t even know where to begin to pinpoint the problem.
When the nurse called last year to talk about the hearing test, I thought now was the time to really get to the bottom of it, to insist that he got any test that could get us there. By this time, he was in seventh grade. His grades tended to fluctuate between all A’s and disorganization. Personally, I thought that there had to be a reason why you’d be talking to him, and his response would be delayed, almost like he had heard most of what you said, and he was filling the words he didn’t hear into the spaces where they should be, until what you had said made sense, and he could respond.
We started with the audiology department of our local children’s hospital, and the first test results were alarming. The test seemed to confirm that his hearing was impaired. There was initially talk of having him fitted for hearing aids. He was just getting over a cold though, so they had us come back two weeks later to retest. The results were not the same. So then, the audiologists weren’t sure he needed hearing aids. We came back to the audiology booth three more times, with each test giving up a different result. The audiologists were perplexed. He may still or may not need hearing aids. He might just need accommodations in the classroom like preferential seating and perhaps a Hearing Assistive Technology device that the teacher would wear to bring the the class lessons straight into Clooney’s ear. Basically, they needed more tests to find the answer.
We saw an ear-nose-and-throat doctor to find that there was nothing structurally wrong with his hearing. This was good news, but still, it didn’t explain the testing, or why he couldn’t hear. By his own admission, some days were better than others. Sometimes he could hear things perfectly. Other times, he couldn’t, and he had no idea which factors played into his success.
So the first two or three months were spent going back and forth for these tests. After the ENT found nothing wrong, we went back to audiology where they did an involuntary reflex test on his brain that took a few hours. The results from this test made them start to suspect that he had an central auditory processing disorder. Basically that meant that he had a hard time filtering out background noise to focus on conversations in crowded places.
And this turned out to be the correct diagnosis (which was confirmed after he was tested for ADD and the results were negative). The best part about it was that now we had a name for what challenged him. I began to notice a change in his behavior almost immediately. He would tell me when he hadn’t heard something. He no longer felt the need to hide it, and that, at least, was progress. I keep thinking about a moment on the NJ Boardwalk over the summer when we were with extended family, in a crowded area amidst the spinning rides, making plans to separate and meet up again later. After all the plans had been finalized, I felt Clooney’s hand on my shoulder, and when I turned, he looked me in the eye and said, “I didn’t get any of that.” It just felt so good to know that he needed me to look straight at him and explain the plan, with him looking straight at my face, and he would get it.
The audiologists also recommended a treatment called Interactive Metronome Therapy. At first, I kind of put off actually getting the therapy, though I’m not sure why. Maybe I didn’t believe or understand how it would really help. Maybe I was just tired of going back and forth to these appointments. And after all, he was only missing things when we were in crowded places. The preferential seating accommodations in the classroom seemed to be helping, so I guess I didn’t think IM would be that important.
Then one night we were out to dinner with my step-mom, who noticed Clooney out in his own world at the end of the table. When she asked about it, I told her I had been dragging my heels about starting the therapy, and she said something that really brought it home. She said, “You know, he won’t always be out to restaurants with just you. He might want to go on a date one day…” or have a potential business meeting or whatever in a public place. It was then that I realized IM might be something that could make a permanent difference in his life, so I set out to get him therapy.
There are a limited number of occupational therapists who are certified to do IM though, so he was put on a waiting list for a few months. Finally, he started the process in December of 2016, half way through his 8th grade year of school.
Basically, he goes twice a week, and the treatment involves headphones, a screen, and some exercises that train his brain to time things more accurately. And the results have been absolutely life changing for all of us.
He took to the therapy immediately. The process involves repetition of reflexes based on sounds that he needs to respond to. He’s very competitive, so he’s always trying to beat his scores as he moves forward through each set. His therapist said his motivation is amazing, and he quickly moved from mastering the tasks in a quiet room to needing more distraction around him. From there, the therapist moved his therapy (and the IM equipment on a rolling cart) into the Outpatient Therapy gym, where the activities of other kids might serve as more distraction for him. His scored dropped with the increased distraction, but he rose to the challenge to quickly bring them back up.
Once he had gotten proficient in the gym, his therapist rolled the cart to the busy hospital cafeteria during the lunchtime rush. Each time she moved him to a new place, his scores would decline with the increased distraction, but he could train his brain to focus through the exercises presented by the machine. He’s gotten to the point where his scores are great, and it’s only a matter of repetition to help the new pathways in his brain to become permanent.
Overall, I have to say that Interactive Metronome Therapy has totally changed Clooney for the better. He’s more confident, less withdrawn, more present in every moment. Last weekend we went to a big family gathering, and during lunch, I looked across the room where he was sitting with his aunt, uncle and cousins. He was animatedly participating in conversation and having a great time.
Now, if I can just get things straightened out with our medical insurance to pay for it, (because half-way through the series of therapy, they decided – as of January 1st, 2017 – to no longer accept the diagnosis code for central auditory processing disorder) everything will be perfect…but I think that’s a story for another post.