#whyisign

There's a movement out there encouraging people to share why they sign (use American Sign Language).  Here's my contribution to that story, and a little update on our little guy.

Photo of child in retro toy car, watching a girl sign on TV

We didn't cry when we heard about hearing loss in our preschooler (last summer). We rejoiced. We didn't know where it was coming from, but we finally knew how to help him. We could learn another language for him. We could help him understand. We would become bilingual.

Then we hit road blocks. We were told it was only mild loss. That it was unilateral. That we didn't need to sign, because he'd hear enough through his good ear, and once he had an aid, he'd know where to look. This sounded like good news, but didn't match up with our day-to-day experience. We were told that he wasn't deaf-enough for a d/hh (deaf and hard of hearing) preschool. Don't learn sign, said the ENT (ear doctor). Whatever you want to do, shrugged the audiologist.

We heard what they were saying, but then we watched our toddler son. He sat in my arms and pulled our faces close to his when he'd tell us an important story. He'd stare at our lips. He'd misunderstand our words, but he wanted SO MUCH to understand and be understood. And we didn't want to lose any more time.

So, shakily, with embarrassing mistakes and unsteady hands, we started to sign. It wasn't all right, it wasn't all good. The words came out of my hand in faltering, jerking, unnatural movements. Sometimes unnaturally loud, sometimes lacking all emotion. A lot of times we signed was with our voices going, and so it really REALLY wasn't ASL, it was signed English.

But it was something, and he was responding. He was picking up language, he was asking better questions. Once his sisters started using their hands, too, he started to sign back. We began turning off our voices at family gatherings. Even though he could hear, we were going to become bilingual.

Unnecessary? Maybe. If his level of loss stayed the same, he'd probably prefer English and never attend a Deaf school. But I needed to learn to change MY outlook. Change "might become deaf" to "might become Deaf," and suddenly it's not bad news. Deaf (capital D) indicates a culture, a community, a world of other people with a rich history and language. Make Deaf acceptable. Make Deaf FINE.

Just recently, just six months after the first test, he was tested again. The mild loss now looks to be moderate. It's now in both ears. The cause, while still unknown, is suspected to be genetic. And while so much is uncertain, it might continue to get worse.

For the first time I heard an ENT say "learn sign," but then he said "but you don't need to learn ASL. Just learn baby sign, so that he can express himself better."

The ENT didn't know that ship had sailed. Why would we give him a town when we could give him the world? We'd already started our journey, our course was set. If our son was going to come half way, pull our heads toward his and read our lips, we could close the gap. In fact, we could go beyond the gap, and we could make this wonderful.

Our son may be moving from hard of hearing to clinically deaf. Maybe not. But either way, we aren't worried, because through the Deaf Community that has gone before, we have been taught the difference between the poor deaf boy and the proud Deaf child. And we intend to pass that along to our son.

We sign because we love him, because we want him to feel connected to the world around him, no matter what the future holds. This is my #whyisign.

Day 122 (Nov 16) - Hearing the music

The evening of day 118 Mimi prayed, "Please have Jonathan come home tomorrow. Help Jonathan come home the day after picture day. He really should be in his crib, that one, in his room. So you just need to heal him so he can be here." He wouldn't be coming home to his crib for over a month, but exciting things happened that week anyway.

By day 120 they had finally gotten Jonathan extubated, his lungs finally clear enough from the pnemonia that he could start to breathe more on his own. They had thought he was almost there on day 119. They then waited until after his eye exam, just to be sure he was ready. There was a good chance that he'd need a second eye surgery, given how severe his retinopathy of prematurity had been. Just after the eye doctor delivered the good news -- his ROP was regressing still -- the doctors took out the tube.  He was on CPAP for many days after.

On day 121 Jonathan, still on CPAP, finally hit five pounds. His incubator top had been popped a month before, but they didn't want to give him a crib until his gut surgery was behind him. But it was clear, he was a big boy now. And it was time. A real baby crib. Not the one Mimi had prayed for, but we were still thrilled. The days of the incubator were behind us.  He had graduated to a "feeder/grower" baby.

With the new crib came crib toys, including a music box.  On day 122 J both came off CPAP and began to listen to music.

Jonathan had developed the ability to hear shortly before birth. He hadn't heard much beside the ding of hospital bells and human voices.

When the electronic music of the NICU music box started up, Jonathan became very still. He concentrated hard. This wasn't a hospital ding or an alarm. This wasn't a human voice or acapella song. This was different.

It took him a few minutes, but then he became visibly excited. THIS was something new, and he thought he liked it.

Realizing how great music was, we promptly went out and bought him a CD player. We brought in Go Fish's CD Snooze for him to enjoy.

To this day his favorite music is a capella. He has an appreciation for strings as well. If you want him to smile or respond, even on his worst of days, he will cheer up to good music. He will look merely confused if you sing off tune.

PAM FOD #8 - Preemie complications: Hearing Loss

Prematurity Awareness Month
Fact of the Day
Day 8

Q: Can being born prematurely impact a baby's hearing?
A: Yes. According to one study, around one quarter of preterm babies with a very low birth weight like JAM (below 1500 grams -- JAM was born at 600 grams) have some central or peripheral hearing loss.

For more about hearing loss in preterm babies, visit this March of Dimes site or the Center for Disease Control.

(Family wants to know: is it impacting Jonathan's hearing? Like everything else, we don't quite yet know. Both ears passed the NICU test, and one of the ears has failed the two tests we've had post-discharge. This could be because of wax in the ears, and so the nurses are willing to wait through one more cycle of tests before they become concerned. He is tracking with his hearing milestones, so it's unlikely that he's having issues. At the very least, it's not holding him back!)