Hi friends! I thought I’d just give you a quick update on Felix.
Last week, he got hearing aids!
Yup, that’s plural. Both ears.
How cute are they? We went with Spiderman colours since Felix is basically a comic-book superhero by now (he’s genetically modified and technologically enhanced.)
We got confirmation last month that Felix has moderate to severe hearing loss in both ears. It was an absurdly long process, but we were finally able to get him the hearing aids he needs to hear his world.
We had begun to suspect hearing loss back in the summer, when Felix was nearing two and still wasn’t saying any words. He wasn’t really even babbling. He mostly growled. He didn’t seem to show much interest in human faces, either. So we actually suspected autism more than anything, but thought a hearing test was in order. (More on the autism thing later.)
He had a couple of initial hearing tests done by an audiologist which suggested a strong possibility of hearing loss. But it’s really hard to tell on such young children. We repeated the test twice more with similar results. We were pretty sure he had hearing loss, but it was hard to determine the level. Felix hated the tests, screaming through most of them and constantly tugging on the headphones.
Finally, in December, Felix went in for what is called a sedated ABR (Auditory Brainstem Response) Test. He was put under general anesthetic so the doctor could to measures the hearing nerve’s response to sounds. This way we could get a much more accurate idea of what he can actually hear.
Felix’s Hearing Loss
Due to the Christmas holidays and some miscommunication, it took almost a month to get the results. But as I said above, we finally learned that Felix has moderate to severe hearing loss in both ears. The level of hearing loss increases with frequency. In other words, the higher the pitch, the less he can hear. Felix can hear low sounds at an almost normal level (think: machinery, thunder, a chair being dragged along the floor); but the frequencies found in normal conversational speech are generally out of his hearing range. He can hear vowels and a few consonants, but sounds like f, p, h, s, etc are out of his hearing range. (So in his own name, he can only hear s muffled ee-li). Birdsong, the rustling of wind in the leaves . . . totally out of range.
In fact, the audiologist who programmed Felix’s hearing aids let us get a sense of what Felix can and cannot hear. She was able to plug the numbers from the ABR into a machine and play back different sounds as Felix would hear them. It brought tears to my eyes. A regular conversation between two people in the room was almost completely inaudible. Just some muffled murmurs.
All this time, Felix has been missing almost everything we’ve been saying. And for the first year of his life, our faces were mostly covered by masks, too. No wonder he’s had no interest in human speech. He’s had very little exposure to it.
(Interesting side note: in the late fall, Felix was assigned a specialist teacher of the deaf who visits our home. She told us that many children with undiagnosed hearing loss are misdiagnosed with autism. These children tend to “check out” and lose interest in a lot of human interaction since it makes so little sense to them. So much of what we do depends on hearing! While autism might still play a role in Felix’s behaviour, we now at least have a partial explanation for why he behaves the way he does. We’ll likely go a year with the hearing aids before pursuing a diagnosis for other neurological issues, if still relevant at that time.)
Another neat fact: when a child with hearing loss gets hearing aids or cochlear implants, the experts speak of the child’s “listening age.” Felix is two years old, but his “listening age” is only one week old. He’s only a newborn in hearing!
The Challenges of Hearing Aids on Babies
1. Felix cries every time we put them in. He hates anyone touching his ears. And he’s had so many negative experiences with being held down while we do terrible things to his body, I can’t blame him.
2. He also yanks them out quite frequently. But we’re having pretty good success by putting a special, snug-fitting, mesh bonnet over his hearing aids. It’s kinda cute.
3. Hearing aids give off feedback (i.e. high-pitched squealing) any time they are covered or improperly inserted. Or out of his ears. So they squeal every time he puts the side of his face against my chest, every time he puts his hands over his ears, or any time he loosens them from his ear in any way. It’s very annoying. The only positive side is that if he pulls one out, I can immediately hear it and go fix the situation.
4. There is no off switch. To turn them off, you have to pull the battery hatch open. And the battery hatch has a lock on it so he can’t take out the battery and accidentally swallow it (which is very dangerous). It can only be opened with a special tool. We always have to have that special tool on hand. So when the hearing aids come out (either on purpose or by accident) and start screaming, we have to scramble to find the tool and pop open the battery hatch to shut it up.
How did Felix react when he first got his hearing aids put in and heard sounds for the first time?
Well . . . that moment was complicated by the fact that he hates having people touch his ears. He screamed and bucked as we tried to wrestle them in. Then he cried for a while as I comforted him.
And then he smiled as he looked around at his new world.
Has anything in his behaviour or vocalization changed yet?
Not really. For the first day, he seemed to be listening a bit more intently to different sounds. But overall, no. He’s still growling, still mostly ignoring us when we talk to him. But it’s only been a week.
My guess is that these new sounds are all still completely chaotic and meaningless to him, so he’s mostly ignoring them. It will take time for his brain to organize what he’s hearing into anything meaningful.
He has also been a bit grumpier and needier in the last week, but his audiologist and teacher told us to expect that. Now that he’s getting all this new sensory input, his brain has to work a lot harder and it’s very tiring and overwhelming at times.
Does he slowly ease into hearing with the aids, or does it all happen at once?
(That was my question, anyway). It happens all at once. Full volume. All day (if possible). A big, sudden change for him.
Did you have to pay for them?
Nope! Another opportunity to thank Canada for being an amazing country. Felix qualifies for special coverage due to the nature of his various disabilities, so the whole kit and caboodle was paid for by our government. Which is amazing, because those high-tech devices are thousands of dollars each, and came with a bunch of additional equipment. Thank-you, Canada!