Can You Hear Me?

Six months to a year ago, Tyler and I noticed Jesse wasn't listening as well as he had been. One day the thought struck me, "Maybe he's not ignoring you. Maybe he can't hear you." We'd gone through this with Annley around the same age. Annley ended up needing to have tubes put in her ears. She also had her tonsils and adenoids removed at the same time. I was pretty sure it this is what the outcome with Jesse would be. I mentioned my suspicions to Jesse's doctor. She referred me to an ENT.

The day came for the appointment. The doctor was nice. He checked Jesse's ears. "There is no fluid in the either ear. I'd like to run a couple of hearing tests if you don't mind. It'll only take ten minutes" Thirty minutes passed. Three tests were done instead of just one or two. I met with both the audiologist and the doctor afterwards. "Mrs. Kneisly, Jesse has failed all three hearing tests. He has bilateral sensorineural hearing loss.  It's permanent. We don't know yet if it's progressive. We'll schedule a sedated ABR, auditory brainstem response test, to see how much hearing loss he has. Then we'll schedule his tonsillectomy."
It felt as though my heart dropped to my stomach after hearing the words, "hearing loss" and "permanent".
My mind was reeling. Permanent hearing loss? How? Since when? How did I not pick up on this earlier? Hearing aids? What does this mean? Possibly progressive? Will he wind up totally deaf?

After a minute I managed to ask if it was possible to tell how long Jesse has had hearing loss. The doctor said probably since birth. It's probably that it has just gotten worse in recent months, which isn't uncommon. I felt numb as the nurse walked us down to another office to schedule Jesse's tonsillectomy. My mind was back in the consult room still processing everything.  I just nodded and signed the paperwork trying to hold back the tears a little longer.

We stopped for ice cream on the way home. I'm not sure if that was more for me or for him. I made it a few more miles down the road before I broke down and cried. I felt like an absolutely horrible mom. Seriously, how could it take four years to realize my son had hearing loss?
What could he actually hear? What was he missing? He was going to need hearing aids. Kids and adults can be so cruel about things they don't understand. My sweet, cute happy little boy. He is going to get picked on and teased.  Some people are going to think he's dumb because of his hearing aids. How can I prepare him for that? How can I make sure he continues to grow into the awesome human being I know he can be? I don't want him to feel disconnected or different from everyone else. I know he can do anything he puts his mind to. At this point all I could do was pray for peace of heart and mind as well as the courage to move forward. I couldn't talk about any of this for weeks without crying. The only people we told were Tyler's parents and my parents.

The ABR was scheduled for May 16, 2016. I spent the next few weeks learning all I could about hearing loss. We made some changes in how we communicate. The biggest thing, making sure Jesse was facing whoever was speaking to him. This made a huge difference, decreasing the number of misunderstandings and meltdowns significantly.

The day of the ABR came. Tyler gave Jesse a priesthood blessing before we left. We made it to the hospital. Jesse did an amazing job. He never even cried! Even though the nurse had to stick him a few times before she was able to insert the IV.  He was very quiet, watching everything the audiologist and sedation team did. They were surprised at how calm and quiet he was. It was weird how quickly Jesse was out one the sedatives were administered.

The test took about an hour. The audiologist asked the sedation team to keep Jesse sedated while she went over his results with me. She told me Jesse did in fact have permanent hearing loss, moderate to severe in both ears. There is no way to know now, whether his hearing loss is progressive or not. He has to go back for testing every three months. He would definitely need hearing aids. The audiologist suggested we find a pediatric audiologist outside the hospital system because the wait time just to get hearing aids was seven months. Then, she gave me a few names of parent support groups; Hands and Voices is an amazing resource!

The last thing she asked was if he would start kindergarten or preschool in the Fall.  When I told her we homeschool, I expected to have to defend our choice. Instead, she said, "That is wonderful! That is exactly what Jesse needs! He'll get  the extra one on one help he's going to need and he won't have to deal with all the background noises of the classroom." 

Five minutes later, Jesse opened his eyes. He was pretty groggy but I got lots of hugs. Tyler was waiting on us when we got home from the hospital with a Lego set to put together with Jesse once he was more alert.

We are learning ASL as a family since we don't know if Jesse's hearing loss is progressive. We'd talked about learning it a few years ago and never did. Now, we have a new reason to learn it. Then kids are pretty excited, especially Jesse!

Jesse has his first appointment with the audiologist in a few weeks. This appointment will be a consult for hearing aids. Molds of Jesse's ears will be taken and he'll get to pick out what color hearing aids he wants. Right now he says he wants them to be green. 

We never thought we'd have a kid who has hearing loss. This has been a huge learning opportunity for me.  I've attended a class on childhood hearing loss and  read and researched everything I can about Jesse's type of hearing loss. I've learned more than I thought I ever would about; medical terms & tests, new acronyms, ASL, English speaking for the deaf and HoH, deaf culture, building medical binders, and creating IEPs. 

The biggest thing though was discovering that correcting hearing with hearing aids is nothing like using glasses to correct vision. There is no way to correct hearing. The hearing aids will amplify EVERYTHING. Background noise will be the devil. What Jesse hears will be a combination of acoustic and electric sounds. What he hears will never sound the same as what those of us with no hearing loss hear.

Right now I'm going through our school options. Jesse is the perfect candidate for three different schools for three reasons: He was recently diagnosed with hearing loss, we don't know if it's progressive, and he is English speaking but needs some speech therapy.  One school focuses solely on ASL for language. There is very little English spoken on any given day. The next school focuses on teaching children how speak and to "hear" using their hearing aids. This school is great for the deaf and hoh, who only want to do spoken language. No ASL is offered. The last option is Public School with dual enrollment at one of the aforementioned schools. Right now I still feel like homeschooling is the best option but at the same time I want Jesse to be around other HoH (hard of hearing) kids so he doesn't feel SOOO different from everyone else. 

The last couple of months has been an emotional rollercoaster for me. I feel silly for feeling sorry for Jesse because I know he is healthy and perfectly normal. I don't see him as special needs and yet, I know that is how he will be labeled because he does have some special needs. Does that make sense? Most of the time I'm fine. Every now and then all those questions I listed earlier along with many "what ifs" creep in. Then, I get emotional.

Last week, I shared a picture of Jesse with the parent support group I'm a part of. Someone left the comment, "What a cute little guy! He is going to look adorable in his hearing aids." That was really sweet of that mom and yet, thinking of seeing Jesse in his green hearing aids and how Jesse might be stared at or made fun of because of them was enough to make me cry.  

I know its pathetic or at least I feel like it is, but right now that's where I'm at.

I'm also so excited for him to get them. Another parent of a HoH kid suggested I video the first time Jesse's hearing aids are turned on to remember his reaction to all the new sounds he'll be able to hear. There are so many sounds and conversations he is missing out on and there is a lot of miscommunication and confusion. 

A few examples from the last couple of weeks:

Me- "Jesse, please go get the napkins."

Jesse- "You want me to go get Maclin (his friend)?"

Me "Come on Jesse. Let's get Annley and go get in Phoebe (our van)."
Jesse- "What? We can't get Ironman! He's not here!"

Me- "You can't ride that in here." 
Jesse "I don't see a spider there?"

I sing a song to each of my kids as I tuck them in each night. Jesse has been hugging my neck when I sing to him for a long time now. The other night he turned my head towards his cheek, hugged my neck and said, "Mommy, can you sing in my ear so I can hear the words?" 

One morning Ellie was crying, screaming really, in my room. I was sitting right outside the door waiting for her to go to sleep. Jesse walked up and asked if Ellie was taking a nap. "No, buddy she is trying to go to sleep. She is crying." "No, mommy she isn't crying. I think she's just sleeping."

We are counting down the days until Jesse's hearing aids come in! 

Bottom line, our little guy is bright, tenacious, courageous, and boy does he have a sense of humor. He'll do awesome! I'm the one who needs to suck it up and not cave to the desire to coddle him even though I really REALLY want to.