The Waiting Game

Jesse has always loved music. He used to sing when he was a toddler and then started humming instead. I assumed he couldn't remember the lyrics to those songs. He also always wanted help saying prayer even though he was 4, almost 5.

I cried the first time I heard him sing a song and said a prayer on his own. Both happened within a couple of months of him getting his hearing aids. It was the first time I realized how much he was missing AND how blessed he is to be able to hear with his hearing aids.

I go back to those memories when I get news like we got over the course of a couple of months.

We waited six months to see the geneticist. We had our first appointment in April. The doctor, gave us the rundown of what he would be doing, why genetic testing is encouraged for someone with the unknown cause of Jesse's hearing loss and what our next steps would be. Then he asked what insurance we have. When I told him, he said, "Oh, Jesse's isn't on medicaid or CHIP? Well, then we need to get preauthorization before we can move forward with the lab work." I was SOOO MAD & disappointed! His office had SIX MONTHS to get preauthorization. He did go ahead and do a physical examination while we were there. By the time he was done I almost asked him to examine me. It was so neat to see what he pointed out. He said that Jesse's case is pretty unique between there being no genetic hearing loss on either side of the family & the rate a which Jesse's hearing deteriorated. The Doctor said based on some of Jesse's physical features, it looks like he his hearing loss is likely an Autosomal Recessive Syndrome. This means whatever syndrome he has was passed through recessive genes. We've gone it being one of over thousand syndromes to around 140. Then he said, "I'll see you in four months." and I was mad again. Hopefully, we can get labs taken care of in a couple of weeks. I made the mistake of going home and Googling syndromes linked to sensorineural hearing loss. I quit after about an hour. There are so many syndromes linked to hearing loss. Many of them are pretty scary! It made me so grateful to have a cute, happy, healthy, kid, who, for now, is simply hard of hearing! I have four months before I have to worry about any other health issues &/or struggles Jesse may have down the road. We're going to enjoy our Spring and Summer, giving as little thought as possible to the what might best.

Then, a couple of weeks ago, we found out Jesse had lost another 10 decibels of hearing in one of his ears. It's not much and it's in the lower frequencies which is "good" news. No biggie, right? Right? Yet, I cried, again. We were told to prepare that Jesse's hearing loss could be progressive. Even so, getting the news is still hard! More hearing loss is still more hearing loss.

Parenting a Hard of Hearing Kid; Hard Things and Gratitude.

I know my last couple of posts have been about Jesse. We're still navigating new territory with the whole hearing loss thing and I want to remember this season of our lives.

That and sometimes I just need to get what's in my head on paper. It helps to clear my mind and calm my heart.

One thing I've realized is there aren't a lot of public forums, blogs or articles that talk about what its like to parent a kid who is deaf or hard of hearing. So I'm going to get real for a few mins.

There a quite a few hard things about parenting a hard of hearing child.

Not losing my patience because he can't hear me without his hearing aids unless I shout is hard. Knowing he won't be able to hear me call him if he takes off running or simply wanders off in a noisy place is terrifying. Not knowing what is ahead for him is hard. The days, he insists he can hear without his hearing aids because he doesn't want other kids to see them, or because he wants to be like the other kids is hard. Making him wear his hearing aids those days is hard. Sending him to a school where very few other kids are verbal and hearing him say, "Mom, I wish I had school friends who could talk to me.", is hard. Being at the park and him asking to stay with me because kids won't play with him because he has hearing aids, is hard. Trying to learn another language and convincing Jesse and Parker to learn without saying, "We're learning because one day Jesse may not be able to hear at all and we need to be able to talk to him.", is hard. Trying to answer his questions about why some people are deaf, is hard. Trying to convince him that yes Heavenly Father really does love deaf people just as much as he loves everyone else, is hard. Explaining Heavenly Father gives people different challenges and some of those challenges are physical to a 5yo, is hard. Hearing his brother say, "Jesse, you can't come to my school. No one else in my school has hearing aids.", is hard. Trying to boost the confidence of a 5yo, who at times, feels like he doesn't really fit in anywhere, is hard. These are conversations I never thought I'd be having with my young kid(s). They are hard conversations to have. Especially without getting emotional but maybe that's just me. Sometimes treating him like a perfectly normal kid is hard. Knowing that is hard for me too. Its hard accepting my perfectly healthy, normal kid is a special needs kid. Its hard seeing some people assume my kid is mentally handicapped in addition to hard of hearing before ever speaking to him. Realizing that regardless of what our family chooses for our child in regards to language acquisition and educational options for my child, there will be many who are angry with what we, as a family, have felt prompted and chosen for him.

While there are many hard things that are going on, I'm grateful to be Jesse's mom. I'm grateful that all of my kids are healthy & happy. I'm grateful for Jesse's tenacity, fun, imaginative, go getter, cuddly, personality. I hope he never changes!

I'm grateful that Jesse can sleep through pretty much anything!. I'm grateful Heavenly Father has blessed us with an opportunity to learn to love those who are different, to learn a new language. I'm grateful for the community we live in. There is a great network of people and parents who are mentors guiding first timers like us through: IEPs, finding deaf mentors, letting us know movie theaters have head phones for the hard of hearing. There are so many resources close by. I'm grateful for the words and strength Heavenly Father gives me when I have to have the hard conversations with my kids. I'm grateful I get to be one more person who can help normalize different by educating curious and sometime ignorant people. I hope one day I can help mentor someone who is new to having a child who is hearing impaired.

I'm grateful for a blessing I recently received in which I was reminded that each of my children have been given specific challenges. Their challenges are for them to learn to cope with or overcome. I can not do that for them. My job as their mother is to love, nurture and teach them.

I know that we, all of us, are given the capacity to do hard things. Whether it be family, friends, community, angels, Heavenly Father or the Savior, we are never alone in our trials.

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. 

Four Years Later

How sad! It's been 4 years since I've posted. I blame Facebook. 

I'm just going to start where we are in life.

Annley- is EIGHT years old. I can not believe it.
She is: sensitive, artistic, musical, loving, competitive, literal, loves to read, make friends, loves her siblings, moms  helper, likes to be in charge, impatient (she gets that from me), go getter and list maker, observant.






Parker- is SIX years old. He is: kind, loving, affectionate, critical, adventurous, chatty, impulsive, fearless, inquisitive, great with numbers, master lego builder, witty, funny, persuasive, negotiator, observant, climber of trees, fast.








Jesse- Four years old. He is: cuddly, affectionate, imaginative, strong, brave, calculating, intense, artistic, loud, agile, stubborn, helpful, mini chef, full of life, tenacious, bright, courageous.






Ellie- SURPRISE! We had another baby. She is almost 6 months old. She is happy, smiley, loves to give and get kisses, texture baby, ticklish, mommy's girl, thinks her brothers are hilarious, insistent, her favorite "toy" is daddy, loves bath time,  likes going for walks in the stroller, dislikes: being laid on her back,  formula, mommy putting her down, mommy walking out of sight.

Annley Says...

One day I was dressing Jesse when The following conversation took place.

"Mommy, what color is Jesse?"

Trying not to laugh. "What color do you think he is?" 

"Pink or brown."

"Yeah, I can see that."

"Mommy, what color am I."

"Well, what color do you think you are?"

"I think I'm white or peachy."

"Yeah, I can see that too."

Mimi to Annley

"Annley, who taught you to hum."

"The bees."

Sometimes the truth hurts.

"Mommy, you're weird."

"Wow, Annley! I don't think I'm weird."

"Mom, look at me. I'm telling you this, because I love you. You are weird."

Breakfast

"Annley, would you like an egg?"

"Yes, but I want a clean egg & not a spicy egg."

"A clean egg? What is that?"

"Well, the egg is clean."

It took me a minute of thinking to realize that a "clean" egg is a boiled egg. A "spicy" egg is a fried egg with pepper.

Evidence of Spring

Today, we discovered a caterpillar nest in one of Mimi's apple trees. Mimi, was not happy.

This guy was very happy. He kept saying, "Caterpillar tickling Parker."

This girl was not so sure. She is terrified of caterpillars.

Then she did something very very brave! She asked to hold the caterpillar. She closed her eyes, turned her head and held out her hand. The poor girl was visibly shaking as I put the caterpillar on her hand. She opened her eyes after a few seconds and said, "I just named him Dopey." Parker, immediately, renamed him "Poopy".

Annley Says

Riding in the car with Nana.

"Nana, I like your earrings." Nana then removes earrings.

 "NANA, YOU HAVE A HOLE IN YOUR EAR! What happened?"

Said while I was playing with Parker's feet.

"Mommy! Don't eat his feet! You have to roast them first!"

Annley is in a Superheroes phase. One night she gave everyone she could see a superhero name.

"Daddy, you are Superman. Mommy, you are Super Woman. Parker is The Flash & Jesse is The Green Lantern." 

Papa walks in.

"Papa you are Aquaman...only you have a circle tummy & Aquaman does not."

After I was done feeding Jesse one day.

"Mommy, I want a bigger chest."

"Honey, you have to grow up a little first."

"Okay, but when I grow up, and my chest gets bigger, I don't want Jesse to try to eat it."