The Problem with Hearing Kids

The problem with hearing kids, is they hear. We hearing parents of deaf children grow accustomed to being able to get up at 4:00 a.m. (or stay up to 4:00 a.m.) and do dishes, laundry, vacuum, any noisy task we want because our kids will sleep soundly. When hearing friends come over, we panic. Suddenly everything we do becomes magnified by 10,000 and we realize how noisy we parents really are.

I "shhhhed" myself this morning when making breakfast as the two deaf ones slept soundly and the one hearing friend (also was out cold) was at risk for being awakened. Luckily, no fire alarms blared this morning (which is usual) so I was pleased they got their much needed ZZZs. I guess we can take that early morning time to do other things like, blogging, drinking coffee, and watching the sunrise!

Waiting to Hear...

...and the latest response from SunMed is..."Mrs. Blakely, I will contact you as soon as I hear from the insurance company." Here is what I would send if I we are still waiting at the end of this week:


Dear (insurance company):

My ten year old child, Brooklyn Blakely, is seeking approval for replacement processors for her cochlear implants. I understand that your work load holds tremendous weight and we are trying to express patience as we await this approval but we have basically been on hold since the first of February.

While everyone in your office enjoys impromptu conversations with strangers in a day's passing or the background music playing overhead in your favorite local retailer, my child is missing out. She smiles and nods her head at random people as they speak because she has no idea what they just said, or may have asked. She has to ask what song is on the radio because half the time sound is cutting in and out. The eight year old "ears" she is currently wearing fail her almost daily as she gets up in the middle of class instruction to try to restart them, sometimes without any luck at all. This is very embarrassing for her since nobody else in her class has hearing loss.

While everyone in your office enjoys relaxing at home after work, she comes home in tears on some days, purely exhausted from trying to hear the world around her. I understand the difficulty of an overwhelming case load, but as you hear the softest droplets of the rain on your rooftop or listen to the words of your favorite church hymn, please remember my daughter. She needs those things too. Thank you so much and please look into her case if you get a chance. It is important we get her replacements as soon as possible.

Thank you, Val Blakely

Reminding her she's deaf

As I turned on my phone for the first time today, you know, to check facebook-because it's one of the most important parts of my day (lol), the kids ran into the lake to swim and play. Gman went in one direction and the little lady went in another. We were practically the only people there (at nine-thirty in the morning). I did see a couple of little girls about thirty feet away playing Marco Polo as their voices echoed across the empty beach.

I listened intently to the kids as both tried to catch fish (with their hands) and soon I heard the girl say, "I got one." She was near the little girls at this point and I knew B didn't have her cochlear implants on so I watched and listened. Brook said to them, "I caught a fish, it might be dead, I'm not sure." And she looked down and stared at the fish. Unknown to her the little girls were full of conversation, "put in the water," they said, "if it floats, it's dead."

Brook told them it was dead and threw it and swam back in our direction. No big deal. However, on the way home, I heard her telling her brother about it. She told him that she caught a fish, showed it to the girls and the girls ignored her. I had to jump in and tell her what she'd missed. I told her, "Brook, they were talking to you the whole time. You weren't looking at them, you were looking at the fish. You're deaf remember, you have to look at people when you don't have your 'ears' on." Ohhhh, she didn't realize it.

Interpreting

Last week, my child finally cleaned her room that actually passed inspection. This earned her a sleep-over! I allowed her to invite one friend over for the night. This little girl was in her classroom last year and they had become very good friends. This was the first person (aside from a cousin) who actually has slept over at our house. I've not let my children sleep over away from family yet (I'll get there one day). As you might have guessed, she is a child of average hearing. Brooklyn had been to her swimming party the week prior to this so I decided to back off a little when the two went swimming at my house. I told myself to skip the interpreting if possible to see how the hearing child would communicate with the deaf child and vise versa since my little girl removes her hearing devices during swimming or showering.

They did great! It didn't take the hearing child very long until she was gesturing, pointing, and flapping her arms just like we do. They had a ball and actually had two full days of each other before we reluctantly gave the child back to her family. Hopefully it was a great incentive for Brook to keep her room clean! So far so good. And yes, those are waterproof ear plugs in her ears...she was actually recovering from an ear infection.

Still Amazed

She stood before me as a two year old child. I outstretched my hand because the day was ending, and darkness surrounded my little country house. She stopped in her tracks, looked at my hand, and her eyes filled with tears. One by one, she removed the cochlear implants that had filled her day with the glorious sounds of Dora, music, her talking dolls and her family. She pulled each pink processor up to her lips and kissed them goodnight and she began to sob. I gave her a confident smile that told her she could have them back in the morning, but I knew she was afraid they'd be gone when she woke, so she cried herself to sleep.


Today, I was reminded of this as I watched the same child, now eight years old, answer a simple question. I had asked her to tell me what happened in church since I unfortunately had to miss when the boy wasn't up to par. This is what she said...

"Oh you missed a lot. Luke said something at the piano. I didn't understand everything he said, but he said something. Somebody's mother got the kids to sing. She was wearing a red shirt. Joel got picked to sing a song. He chose "The Old Rugged Cross" and we all sang it together. We didn't go to Sunday School because so many people kept standing up. Zac also stood and told stories. He talked about the wreck they were almost in with that 18 wheeler the other night. Debbie, Dock, Adam, Luke's wife and some more people sang a good song. Oh, and we aren't having church on Wednesday because it's the Fourth of July."

I am still amazed at what all HE gives my family. Of all the times I've not listened in my life...I was given a child who cried when she couldn't. Now she was able to give Mama a Blessing by letting me in on what all The Lord gave our little country church today. No matter what we have or don't have when we wake up each day, He will be there for us. He'll never leave us.

The Wrong Thing

Due to the fact that I've received multiple private messages on Facebook about this one single blog post from my other blog...(click here)...I've decided to cross post it here and tell a quick little story that I was reminded of, when a friend read that post.

For my family, it has never been wrong for other children to ask questions. I have always taught my kids that when other kids ask them "what's wrong with their ears" or something similar, the best thing to do is answer them. If they don't feel comfortable doing that, they can come get me and I'll do it for them but I prefer my kids answer questions themselves...this builds confidence and they need to use the voice that The Lord gave them...I am just their back-up plan.

Here is The Wrong Thing to do...

On several occasions (when my kids were tiny), I've watched small children stare at my children's ears. Sometimes the pure fascination in their eyes would bring a smile to my face. My small child would stare back with no answers to give yet and only a few clear words that nothing to do with cochlear implants. Just as I am about to give the child the answers he/she deserves, Mom comes over...looks at my child and in a gasp, shew her kid away. We were never even given a chance. I wanted to tell the child, the mother that my children's ears didn't work, at all, but God decided that He had some things for them to hear, so we were given devices that make their ears hear sometimes...

But instead, an embarrassed mother that had no answers and apparently would kill over if her kid asked a question, ran away from a really great family. She'll never know how funny my kids are. She'll never know what a gift we were given. She'll never know that it's okay to ask honest questions. Some of our biggest Blessings have come from brave people who have stood in line with us, talked to us until we hated to say goodbye, laughed with us, learned with us, discovered with us...and made it okay for us. Our confidence was given by those brave people who didn't run away. My heart has sank low lots of times in the beginning, when my kids were smaller. But I have to say in hindsight that the confidence also came from those who ran...and I guess I should thank them as well...because I knew that soon, I wouldn't let anyone run. I'd politely tell them that it's okay, it's fine and I'd show them that special needs kids are approachable...which is exactly what happened.

So if you're still stuck in that rut, of letting people stare, not answering questions you know they have...if you don't speak up, your kids never will either. Most of the time, my oldest (who isn't shy) will answer all the questions himself. Sister is a little shy but that doesn't mean we can't take questions. Once people know they are listening and talking to a deaf person, amazement sets in. I have to explain to most hearing people that these devices don't magically make their little brains understand what sounds are...it takes an incredible amount of therapy...an incredible amount of family dedication, an incredible amount of hard work from the child and everyone around the child, but it's all worth it.

This is an old video for those who have never seen my kids without their "ears"



Sometimes the captioned version doesn't work well but here it is on youtube also--he was trying to let her FEEL him talk--she's not a very good speech reader--unlike him.

She Hit Not a Soul

I've been dreading this trip for a long time. In fact I rescheduled it twice before I said to myself GET THAT CHILD TO A DENTIST.  Most of you are long time readers of this blog and know how awful un-delightful our previous dental visits have been. (Click here if you wanna know just how bad it used to be "Rabid Child").

Anyway, it was her idea today to be a big girl. She had no intentions of hurting anyone and she wanted to just make it through the appointment and get back home. Well, no x-rays. They tried several times and were super sweet but B shut her mouth tighter than a clam. Not happening. But she hit not a soul! Improvement.

I left the room and the lady chatted it up with Brook and somehow managed to clean the top choppers. B tried to knock her hand down a few times but in a gentler way than she typically has done in the past. The lady didn't push Brook and for today, that's all they accomplished. The lady did come out, and she seems sensitive and I was worried B had hurt her feelings but after we talked she was fine. She felt like a failure but after I told her how wonderful I thought her accomplishment was, she was pleased and relieved. Brook wouldn't even sit down our first visit there (this is a new place we have started going to).

I have high hopes that this child will get all teeth cleaned on our next visit and possibly even some x-rays by age 10...? This is a very good dental office and they communicate well with my kids, with and without their processors on. We only remove them for the x-rays even if it's probably not necessary, we do it anyway.

Tomorrow we have the Homecoming Parade and we both look forward to riding and cheering in that. Big fun!

Rabbits

So the Blakely rabbits fell in love and had babies this week. Out of six, we only have one survivor. This has really upset B (see story here). She wakes every morning and the first thing on her mind is, is the baby still alive?

Well, this morning, I got up and went to check on it, it was alive, so she wouldn't have to race out there first thing. So when she popped her little eyes open, I was able to tell her it was still alive. She did eventually go out and check anyway, she had to feed the parents (one of her duties). When she came back inside, I was putting my contacts in (with the bathroom door open) and I heard her ask, "Since it's still alive, does that mean it'll stay alive?"

I broke into this well thought out explanation. I explained how nothing will live forever, I went into a lengthy religious spill and did my best to cover as much as her little 7 year old brain needed to know. When I exited the bathroom, contacts in place and closing my informative speech, she looked up at me with big blue eyes and said, "Are you talking? I can't hear you!"

She hadn't even put her ears on yet. Sometimes, the seasoned parents even forget!

Cheaters

So Brook's foot is so much better! It's completely healed, although the skin isn't nice and perfect yet, it's pealing quite a bit but after the damage she suffered, it's expected. She's even back in the pool which is fantastic since next week is her surgery and she won't be able to get in for a while after that.

The ENT's office called and informed me she will not be tested for Angioedema while she's asleep. They aren't allowed to perform routine lab screenings under sedation anymore so we'll test her later. She's still on schedule for next Wed. for the tonsillectomy and adenoid removal.

Now the story...
So Brook and I are in the pool yesterday, and she was bored and tired of pulling me slowly around while I rest lazily on the float so we came up with a game. Now remember, she doesn't hear anything while swimming (and no we aren't interested in the waterproofing of the implants). The idea was for us to take turns on the float, lying with our eyes closed, and have the other person turn us around and around and around and then we point (eyes still shut) in the direction we thought the house was located. If you get it right, you get lots of cheers and praise while a wrong answer would earn you a thumbs down. I'm talking big fun here! lol

It only took me two turns to realize I was cheating without meaning to. I could hear the filter which is on the side facing the house and since I couldn't turn my ears off, I had to pretend to give wrong answers from time to time.

After Brook had a few turns, she smiled and confessed, "Mama, wanna know a secret? If you just feel the sun, you can tell where the house is." And she smirked and giggled because she too was accidentally cheating. It was about 2 o'clock and the sun was actually right over the house at that time. She couldn't cheat with her ears, but could with her skin.

If you haven't noticed, I have other blogs as well that aren't about hearing loss.  The Road (click here) and One Brick Shy (click here)

But I Don't Want To Be Deaf

I posted this on another blog and realized I should have done it here! So this is copied word for word.

Today was our first day back in church. We used to go every single Sunday but our tiny old church lost it's congregation and we all went our separate ways so we have sought after a new one. My idea of church is a small country church (Baptist or Methodist) with lots of songs, a great preacher and a child-friendly congregation and atmosphere. We found it.


As we sat down on the pew, we were automatically welcomed and saw friendly smiles flash our way. Today, it was just my daughter and I and she found a classmate to sit with, I joined them. As we burst into song, I heard hands clapping, feet stomping and people patting the back of pews as we all sang. I heard just the right about of country whine in the voices from behind...it was beautiful.

The preacher had us turn to a verse in our Bibles. He read it aloud and that single verse spawned a 45 minute sermon. He stood on the piano bench, he walked down the aisle, he got down on his knees. His voice was so loud at times, I could feel it bounce from my rib cage. He was full of enthusiasm and he assured us, "This ship ain't goin' down!" He talked about WHO should be Captain of our vessels and WHO is there when the water is rough, WHO is guiding us safely and WHO leads us and WHO stays with us when we feel like we are sinking.


I actually found myself shaking my head, getting carried away with the preacher's voice. I found myself crying when the beautiful little girl (almost 4) sitting on our pew sang OUT LOUD the words to a song that I had to read from a hymn book. While visually impaired, she may never be able to see the tiny words of the book but she's already received them through her heart. As tears filled my eyes at the beautiful sight, her mom told me she loves that song and sings if all the time at home. Her little voice could be heard over all others, and I'm so glad I got to be a part of that.


On the way home, Brook asked me how God makes babies. Luckily He gave me the proper words for her 7 year old mind. She then turns to me and says, "Does God make people have syndromes?" And again, he filled my mouth with just the right words. Without hesitation, my voice slipped over lips and answered the tough question.


"Yes. Sometimes, God decides that certain babies are going to be different than His other children. He decides to make them weaker in some areas and stronger in other ways. He decided you and Gage would be deaf." She quickly interrupts, "But I don't wanna be deaf. It's hard to hear!" I reply, "But He made you extra special so you could teach others. Had you not been deaf, so many people would not have learned about hearing loss, patience and understanding. God decided your ears wouldn't work but He's made you stronger in a lot of other ways."


She understood what I was trying to tell her. She now knows that God is the Captain, He is in charge and He sails the ship.

Nothing New

Nothing new here in Blakely land. Brook did discover her glasses holder (wooden animal bought at Wal Mart for glasses) will also hold her processors as well while she's in the shower...

Just going through the motions til Oct 18 arrives, which is Gage's surgery date.

I'm writing my articles as much as possible and began 2 new titles this week, I'm just waiting on them to be approved and published. So far, no subbing calls this week, but I am working a couple of days next week...big fun.

Water park anxiety

It does get better as my kids age...I'm talking about my water park anxiety. All parents have a certain amount of fear I guess taking more than one kid to a large crowded water park, and likely they fear drowning or separation. However, when your kids can't hear even simple instruction from lifeguards like when to slide down, or even a whistle blowing in their ear when they exit off incorrectly, you have added concerns for safety. Here is last year's story. And no we do not water proof our ci's yet, Brook's are out of warranty so if anything happens....we can't afford the risk. But some people do it all the time. And my kids prefer to leave them in the car and use them only when we get our lunch cooler and eat, then back in the glove box (otter boxes) they go.

A lot of pre-planning went into our adventure. I reminded the kids to be sure and tell the lifeguards at the top of the slides that they can't hear and please use a thumbs up or other hand signal when it is okay to go down (I had to wait at the bottom to catch them).

I guess my only two issues was the parking area and one lifeguard who doesn't have a clue.  I was a little uneasy with so many people and cars in and out of a grassy parking area. I had to run and knock them with a water noodle gently tap the kids to remind them to walk with ME before they got ran over because they were not even paying attention. And most of the lifeguards were fabulous and used hand gestures and I noticed they continued using them after my kids left their area, I guess just in case! **grin** Except for one (tsk tsk)...I saw her using her whistle to communicate as to when people should slide down AND when people stepped off incorrectly so as my child sat up top, awaiting her cue, I quickly said, "Now that little girl is deaf, you'll need to motion for her to come down instead." She looked at me as if I were speaking Russian and said, "Ok" and then she blew her whistle and Brook sat there...**smile** So I did what any good mother would do and I stepped in front of this lifeguard and held my hand up and motioned for my child to come down...didn't have any more problems!

Again this year we ran into school friends and took cousin Kendall along for B to play with. They had a ball!! Everyone got along for the 6 hours we were there, or I would have never even stayed that long. And Kendall and the other kids are more than happy to help out if needed, as far as relaying messages and communicating unheard instructions. One of the little boys Gage was playing with has a Deaf grandmother so he's really used to it and did a great job looking at Gage when speaking! I noticed. Had a great time and since everyone did so well, I may just buy passes next year and go more often! Almost anxiety free!

the lantern

I'm not perfect....faaaaaar from it. But the good thing is that usually learn something from any situation, good or bad and become better prepared should an event (good or bad) reoccur. One such event, sure to reoccur at some point in time, is a power outage in the middle of the night. Let me refresh your memory HERE about the last one.

I'm not even sure what caused last night's outage, light wind, no storms, no rain, but needless to say, the power was out for quite some time. Now for one deaf child, this went unnoticed, and even if he did awake to sheer blackness, he'd snuggle down deep in his covers and enjoy the silence and darkness. Oh but not the other deaf child!

One minute I'm talking to some lady at the park while kids play and eat snow cones, and the next minute I hear Brook screaming from across the park. I was about to put my book down and run towards the child who has climbed too high on the monkey bars and needs mom to rescue her, when my body jerks and I awaken to a semi-reality state. I'm not sure why I can't open my eyes so I stretch my lids as far as they will go when the cool air stings them and they begin to water. My eyes had already been open, it's pitch black, power must be out. I spring into action. I reach to the bedside table and grab my battery operated lantern that has sat there since last year when this very same thing happened. I grab it and begin to walk towards her room which is connected to my room with what I call the skier's slide. I never actually lift my feet because I know that her room is never in tip top shape and the last thing I want to do is press my bare feet down on a baby doll's fork or a colored pencil, so I slide forward one "ski" at a time while frantically searching for the darn button to cut the stupid light on! Finally I found it and there were those streaming tears of fear with a look of 'why did you do this to me' behind them (every thing is my fault if you didn't know, lol). I put the light next to her tv which is usually her source of light, and made my way back to my bed without further distraction. We went right back to sleep.

And before any of you suggest I give the child a flashlight to keep....we tried that with Gage. We removed the flashlight from his possession after random and repeated episodes of peaceful sleep was interrupted with a bedroom door flying open, flashlight burning my retinas and a voice shouting with urgency just like a Cops episode, "Mama, mama, my blankets fell off my bed."

Like I said, I've learned from past events

Pierced Ears and Cochlear Implants

Woohoo! A very dreaded task is now over, and look how pretty!
I held off when Brook was a baby with the whole ear piercing task. I knew one day she would ask why I've never got her ears pierced and I'd cave, take her down to the local Wal Mart or wherever they pierced little ears...

Well, some little girls in her class have cute little earrings and she asked this week if we could go get her's pierced too, so she could wear some ice cream earrings like her friend. I immediately called my partner in crime (aka Nanny-my mom) and we decided to take her today. I've always held off, her having hearing aids as a baby, now cochlear implants and glasses, I wanted for her to ask for them before I added anything else to those little ears. She asked, we took her, she received!!
Now for the confession. I took advantage of her not being able to hear that loud clicking (which is the scariest part of getting them pierced!) and I fibbed, which I fully apologized for after the fact. I told her the lady would mark the spot with a pen (true) and then put the thing up to her ear which would squeeze her ear (all true and I demonstrated the squeeze)...but I didn't tell her a hole would be made and an earring shot through her earlobe...instead I told her it would squeeze her ear and measure it...(fib) When all was said and done, she took off her processors, the piercer squeezed her ears, a couple of dirty looks thrown in my direction from the tot, only a couple of tears shed...and she was fine. I apologized for not telling her the full truth but she understands why I did that...and she agreed that she would have not done it had I told her what that thing really was doing...but she is so happy and so glad she did it! She can't stop looking in the mirror!

And here's a shot of the musicians rocking the house this morning.

A Simple Parking Lot

Each time my children went into surgery, hoping to exit with a cochlear implant so they'd have a shot at hearing, we always kept our expectations low (and our hopes high) just as we were told to do. Five times we've arrived at the OR specifically for cochlear implants (many many more times for other surgeries) and each time, I prayed that my kids would at least be able to hear environmental sounds such as traffic, approaching animals (we live in the country) and various other sounds for safety reasons. Anyone who has a deaf or visually impaired child (or any other disability for that matter) knows the fear of a simple parking lot. To the average person, a parking lot is a place to leave your car while you shop, you think nothing more of it except maybe who's gonna ding it up while your away. To the hearing parent of deaf children, we see a parking lot as a dangerous stretch of pavement, full of obstacles and loud noise that could get in between us and our hearing impaired child, intercepting a vital message such as "Gage, look out!" or "Brook stay with me" as the child unknowingly steps ahead of you into looming danger. I'm usually on guard in a parking deck/lot, reminding my kids with each step that we have to listen carefully. Some people sit in their quiet, idling cars and check messages, read directions, converse with other passengers before they leave their space, glancing up briefly before backing out of their parking area which is filled with objects to obstruct their vision. Trying to tell a 6 or 8 year old to be careful in a Wal Mart parking lot falls on deaf ears in more ways than one when all they are thinking about is the 12 bucks they have to spend from working hard all week on their chore list.
The other day as we were leaving the audiologist, we were walking on the roof level of a parking deck, out in the open, amongst all the airplanes, the traffic below on the busy streets of downtown during lunch hour, and a soft breeze. While walking to our car, I was having a conversation with my bilaterally deaf but bilaterally implanted child who is hopping around, excited his appointment is over, not a care in the world. With less than optimal hearing in the noisy environment, he hopped along, in the middle of the parking aisle, as I scanned all over for moving cars, ears perked for idling motors, and all of a sudden he jumped out of skin nearly and shouted "Whoa! That scared me!"...scared me too. As we passed one of the over sized SUVs the driver cranked his vehicle, one that could kill a small child, even in a parking deck. Thank goodness for those cochlear implants. One day he'll be walking thru those parking decks alone, without Mom's ears listening for him. I'll sleep better knowing he has a tool to help keep him safe and that he is fortunate enough for it to work so well!

Last night, my other deaf child (processor-less) was sleeping in my bed since Daddy was camping out back at the cabin with his buddies. As we snuggled down, she smiles at me, smells my arm and kisses it softly. After we look at each other momentarily, I close my eyes knowing sleep is coming for me soon. She leaves her eyes open watching me wait patiently for the weeping willow trees, creeks full of gently flowing water and other peaceful images that help me drift into a completely different world. She then shouts in her unaided voice, "Mama! what if there aren't any husbands for me to marry when I get big? And what if there's a fire and I don't know what to do?" My eyes popped opened as I could tell the urgency (lol) and just smile, run my finger over her plump little cheek and tell her it'll be okay. She smiles and closes her eyes, and sleep came for both of us.
When we got up this morning we again went over our fire plan and discussed what we do during a fire, what to do when we can't hear during a fire, and all confidence was restored that we can get ourselves out of a fire, not waiting around on husbands, or mamas or daddies to do it for us. She shouts, "But what about stop, drop, cover and roll?" And then I realized my princess WAS LISTENING to the school counselor during an assembly on fire safety, I've never said "stop, drop, cover, roll", (when I was growing up it was simply stop/drop/roll). Another safety blessing with my kids hearing with cochlear implants, what they don't get in full from us, they can hopefully pick up from their teachers and other people we rely on to help teach our kids.
(For those of you who are wondering, they do make safety products for the deaf such as strobe light fire alarms, etc. we just don't have them yet but will be getting those soon!)

Patient Big Brother

Before you hit play let me explain...both are deaf and swim w/out their cochlear implant processors. He is a skilled lip reader and she is not. Good thing she's liking sign right? He can be very patient when he wants to be.

Before the "ears" go on

This is when she first wakes up, she starts right in playing and continues even when she discovers her processors are not on yet.