I Want You to Hear

Sensorineural. Conductive. Audiogram. Milestones. What are all these new vocabulary words being thrown at me and my new baby? This became our reality years ago when my first child failed his newborn hearing screening. His tiny little ears were soon adorned with rather large super-powered hearing aids. The best of the best on the market and even those floppy devices couldn’t bring enough sound to those tiny ears, to hear my voice.

Having no history of hearing loss on either side of the family, we didn’t even know what questions to ask at that point. Months passed by, then years. We introduced him to his new little sister with what little signs and gestures we had developed as our communication methods. We were introduced into the Cochlear family by our doctor as our next step toward living in a hearing world full of possible speech, language, music, and voices.

While little sister was developing her babble, her various toddler words, we were shocked to find out she too had hearing loss. She soon progressed to severe levels as we prepared to our son to undergo his first cochlear implant surgery. Our hopes were high and expectations low as our now almost four year old would either soon begin to hear the world that had been so quiet, or he would remain in silence.

Not only would he receive the gift of hearing, but his sister would soon follow in his footsteps. We had therapy as a family to learn how to learn how to hear and how to develop appropriate speech and language. It was hard work for everyone on our team but both children are in public school, playing sports, playing instruments, enjoying their friends’ laughter and not enjoying their mother’s singing.

Now Cochlear introduces their new website as a resource for parents finding themselves facing a similar situation as we did years ago. A place to answer the daunting questions that linger can be accessed from almost anywhere. Find out more about the advanced implantable hearing solutions by Cochlear by visiting   www.Iwantyoutohear.com

This is a sponsored post from Cochlear written only by me. My opinions are my own.

11 Years of Hearing

It is hard to believe we are approaching 11 years of hearing with our first born. Brooklyn has been hearing for almost that long as well, but Gage was three and a half years old when his first cochlear implant was turned on. Here's how funny all that noise can be!




We had no idea that the three years of silence or at least minimal hearing aid benefit would never show at age 14. We didn't expect him to catch up so fast but a little boy's determination and hard work paid off. He was released (graduated) from AVT only a year later just when his sister began her journey. These two compliment each other well and they sure have taught me more than I could ever teach them!



I need to post some more videos!!

I am thankful they are deaf

If you had asked me eleven years ago if I was glad my first born lived in silence, I would have said no. The experts told me he would learn to speak though it would be limited and at a much slower pace, and that I needed to narrate everything I do. When I woke in the mornings we put his prosthetic "ears" on knowing he would only hear certain parts of my words but we were to spend our day talking...about everything. If I walked to the kitchen I sang, "walk, walk, walk," with every single step in hopes that one day, he would learn that everything, even motions, had names, sounds, labels. By the end of the day, I rarely even answered the phone and had to force myself to speak to a tired husband when he came home from work, because my words had been given to my child.

There were days I thought would never end and when he finally got his cochlear implant, we had to start over again. Sister came along, and we were blessed to start it once more for her so words became part of our life. I learned to describe feelings and emotions, we stopped at every tree, we smelled every flower, we listened to every bird. Eleven years have passed now and I can honestly say that I'm thankful my children are deaf.

My busy world slowed down for years as they began to grow and learn. Each day, I'd step outside my door and wonder if there was anything else left that I could give my children and something new would appear. Their little face would light up with excitement and tears would run down my cheeks as The Blessings poured in day after day.

I had no idea that The Lord was crafting me all this time. HE was teaching me how to see HIM, how to feel HIM, and how to teach my kids about HIM. HE was teaching me to write with the same words I taught my children only they became more than just words over time. HE taught me to notice everything and then translate what my eyes and heart could see. Today, I am thankful HE lets me feel. If my world had not slowed down a few years ago to absorb HIM, I would not have the relationship with Christ that I do today. He took something very close and special to me, my children, and had them teach me how to hear HIM.

Have a wonderful Thanksgiving everyone!

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.

It chose me

A friend of mine from church publicly thanked his wife the other day for being such a great stay-at-home wife/mother. She was sick and he had to take his little boys to the pool, washed dishes, folded lots of laundry, entertained the boys some more, etc. etc. while she lied in bed...sick. It's a draining profession I know, but we Mommies (or stay at home Daddies) get used it.

I had a full time job in the Accounting Dept. of a very large beverage distributor in the big city when I had my first child. I couldn't wait to get back to work and I didn't even wait for my full 6 weeks post surgery recovery time to end. My husband's schedule required him to pull weekend doubles at the restaurant he managed at the time so this gave him a couple of sporadic off days during the week. His schedule, was really the only reason I was able to make it there one more year after my son was born...and the fact my family gave us any off days they had to help us out too.

At his birth, we knew he had "issues" that needed to be investigated, scanned, removed, etc., and we spent most of that first year, in and out of the hospital for all sorts of procedures/surgeries and lots of times, we had three appointments per week. Luckily my husband lots of times was able to pick our son up from daycare, drive him to me in the big city (an hour away) while the baby screamed the entire way, so he could pick me up from work and attend the necessary appointments, then drop me back off to finish my day. You see, deaf children are required just like all other children here in the U.S. to be turned around backwards in the car(until around age one), hence the word-rear facing car seat-but when they can no longer hear, or see their parents driving...they scream. Brook wasn't so bad because big brother was facing forward and could play with her as she rode backwards but Gage was all alone. But my point is, we were a team, my husband and I, and we were in survival mode.

After I realized my son stayed VERY sick with a weak immune system as his only defence for daycare and the fact what little speech he had was troubled, I decided to give in to what had been picking at me for the entire year, and I left work. It was my burden to bear and I was ready to bear it.

I had no idea how hard switching jobs would be. I remember sitting at my desk during lunch as I finished up the three/four week notice and I made a list. I would vacuum on Mondays, wash one load of clothes a day, change linens on Sundays, etc. Luckily I can laugh at it now, but it was never that easy. I did the normal things most stay-at-home moms do but I also focused on speech therapy, which before he could hear, was more like language therapy. He was learning to read lips but I talked to him all day, everyday, as if he could hear to expose him to as much as possible. But my biggest mistake ever...was removing the burden from my husband. I tried to do EVERYTHING myself and was digging myself a hole so deep, it took The Lord to get me out of it. I had no strength left in me, to do everything alone, anymore. My husband was more than willing to help but by that time, I had needed more than a physical rescue.

I've taken on jobs over the years, I still work in Accounting during tax season most of the time, helping out a former employer and I substitute teach. I've become the stay-at-home working mom that works while her children are at school, which allows me to have summers off with them! I love my job now and have for years. It was tough, but it got better. I am so thankful that He chose this job for me, because I would have never picked it for myself. We have only a half day of school left (Tuesday) and we're free to begin our summer...my most challenging and my most fun time of the year. I didn't choose to stay at home as my job, it chose me...and I'm very thankful.

Deuteronomy 28:1-3

1 “Now it shall come to pass, if you diligently obey the voice of the Lord your God, to observe carefully all His commandments which I command you today, that the Lord your God will set you high above all nations of the earth. And all these blessings shall come upon you and overtake you, because you obey the voice of the Lord your God: “Blessed shall you be in the city, and blessed shall you be in the country."

I saw their smiles when they discovered something new, I watched them in amazement as they learned to hear and speak, I learned how to be a better parent, a better wife, and a better Christian...just by being a stay-at-home mom. I would have never chosen this for myself, I really really wanted to work outside of the home. But for my family, my place was here. It took The Lord to move me into that office and quit a job that I loved, but the benefits have more than out-weighed the costs.

University of Montevallo

To some extent she's right. Implants are almost impossible to buy. They are expensive (covered by most insurances) and you need a prescription (so to speak). That was her point. She went on to write "Save your money if you can't hear!!!"

We went to our (almost) annual visit at the University of Montevallo Monday afternoon to talk to the up and coming Deaf Ed/Speech Therapy majors. The kids' former SLP is the instructor/teacher and we had a great visit.

Everyone was very respectful again this year about our choices. There's almost always some students in there that sign only and this year was no exception. We had a bonus this year and found out one of the students was wearing a cochlear implant too! Neither kid wanted to talk.......at first. Then after they warmed up, they did fine. In fact, Brook stood next to me and mocked me as I spoke...fabulous. She really liked one of the interpreters (she's often present at events we go to and I've ran into this lady for years). Brook even wrote on the board, "The lady in the green jacket likes me." Gage brought a vehicle he'd created and spoke on that subject for a little while.

I discussed our background, Goldenhar Syndrome, school, FM systems, parenting, language opportunities, AVT, ADHD, and so much more! We talked about home life and how they communicate without processors on, and the difference between bilateral and hearing with one implant.

We hope we shed some light on how "normal" yet insane at the same time, we can be. The kids got a gift card as a reward which I happily bought them prizes with on Black Friday. We look forward to hopefully returning next year. My mother even came this year with us and she kinda warmed up and spoke a little too.

For no reason at all

I don't have a lot of patience with my children. In fact, if I want to see any of it, I must pray for it before I start my day. Yesterday, was horrible, which made me feel horrible when I went to bed. I said right then, I wasn't going to forget to pray for patience when I wake up, if I'm lucky enough to get another chance.

So I did just that. I had the best day ever. Sure, the kids were at school for the most part but afterwards, we went for a walk...like we used to do everyday. The kids are getting older so part of me thinks they'd rather be doing 'other stuff' than walking around with Mom. I couldn't be more wrong. They loved it.

I remember doing these walks for speech/vocabulary purposes...I hear a dog barking, where is the dog, let's find something that starts with a /t/ sound or let's find things that are living and things that are non-living...

So it's hard for me to remember to do things for no reason at all. Doing things just for fun, or because I want to see something pretty or because my kids missed me all day. Today was an awesome day, I am thankful !

We are looking forward to our Zoo trip Sunday where we'll see all of our HEAR Center families. We love events like this and look forward to it.

Gage hasn't been hearing his best this week so far, he has MAPping/audiology next week so they'll fix that hopefully. His ADHD appointment is in the morning so we'll see if he's gained any weight at all...

Brook's behavior has improved so far this week. We are thankful for the good days for sure! Our high school has Homecoming this week so lots of exciting events lined up this week at school.

We look forward to what tomorrow will bring the Blakelys!

a little bit country

and this was on the way back from picking the kids up from school on Fri. where classes were dismissed early due to the incoming snow...

But here's what I wanted to tell ya...I now know what I really sound like...my girl must have really good maps on those processors because yesterday, I heard her playing w/her dolls, walking around w/a stroller, her purse, fake cell phone, fake nails, and as she's talking, I realize how much she sounds just like me. She was in the middle of saying, "Oh are ye, are ye?" when she dropped her phone, you see her here immediately dialing the person back and then she says, "sorry, dropped my dern phone!"  Wow, I'm gonna really work on my English, lol...
I've already had first graders write 'git' for get when I called out spelling words one day while subbing...talk about embarrassed, I had to go back and give them another try on that before the teacher came back and found 20 wrong answers, she would have figured that mispronunciation out quick! lol

I Love....

I love that your little hand is still plump enough to look like a child's but you're big enough to put polish on yourself (we can simply use a bottle of fingernail polish remover when you're finished to correct errors, yes a full bottle almost)...

I love that you can get so mad at me at times (especially when you're tired) but it breaks your heart to go to bed without hugging me, kissing me, and telling me at least 12 times how much you love me...

I love that you allow me to pick out only a small portion of your outfits, you MUST pick out the rest! (even if it appears you are going to Madonna tryouts after school)

 

I also love your sense of humor, when you aren't getting enough attention, you'll put on something silly like a fake mustache and come up to me and say "what? do I have something on my face?" just so you can make me smile.

I love that you try your best, no matter how many "no's" you get before you get a "yes", to sleep with me every single night, offering your dad the couch, the floor, and in desperate times you even offer your own bed for the old man to sleep in, just to have a chance to curl up next to me, so I can 'tickle scratch' your arm for all of about two minutes before you completely pass out...

I love that you still occasionally miss your R's (I never did work too hard at correcting those, loved the sound of it too much!)...

I love that you throw in new words (fabricated or real) into your vocab at any given, unexpected moment (just today you said "this is redijuous" instead of ridiculous)...

Just to see how far my precious baby has come (speech/language/otherwise) here's a couple of clips from back in the day and a recent one as well...

Brook's pledge (4 yrs old)

4 yrs old w/new baby kittens

and for the record, it was the umbilical cord

and look at her now

Happy Birthday Brook, six years old today!!!

I love you

Girl talk

I have to let the videos speak for themselves! But you'll notice speech babble, and Emma's speech has come a long way. You can see from the picures all Brook's babies got new hearing aids recently...this is the result of Brook wanting to borrow my camera.

Christmas in the air

Here is the stocking cloud the kids found one morning on the way to school and I reminded them that we couldn't be buying anymore toys til after Christmas, and this was Santa's little reminder.

We put our tree up this morning and love the language/speech opportunities. So far today we've corrected the word 'ormamets' to the correct term ornaments while changing last years 'hookers' (lol) to ornament hooks. So many seasonal words we'll work into our vocab and language opportunities we'll take advantage of again this year such as mistletoe, reindeer names, fun little Christmas songs, and the list goes on and on and on. It's funny how this year Gage's list is so detailed as opposed to Lego's he's named exactly in detail what he wants. Guess what else is on his list (at the top of the list as a matter of fact)...several thrift store toys that he can take apart and use as parts for his customized creations. Only my kid would want thrift store toys for Christmas, lol. He also made Brook's list out and she named things like house shoes, and I also heard her say at one point, "okay that should be enough Gage" and there were only like five things listed, wow aren't we lucky?

**update: I just viewed those lists, we are not lucky, Gage has also a TV and a mini-fridge on his list?? lol...but it's mostly stuff like silly string, frisbees, door knob for his bedroom (he removed his) and also when I questioned the "screwless kitchen" on Brook's list he replied, "well, I wouldn't take it apart if it didn't have screws"

Movie Day

First I want to say, I'm very proud of my Brooklyn, she only got one check mark last week for behavior (this is a big improvement!) She's learning the rules, and hopefully will continue on with her good behavior. Gage can't seem to sit still, no surprise there. I've dropped off the ADHD papers, waiting on them to be graded by pediatrician so we can come in and talk about medications and if they are right for Gage. We've done this once before but declined meds, now we are doing it again. I personally have a lot going on. It all is hearing loss related (no surprise there) but I still look forward to the day I can contribute to the family's income by subbing part time...still no calls in that dept. The kids have been doing a fantastic job of wearing rechargeables batteries to school when their disposables for the FM receivers die down, changing the FM microlinks and putting fresh batteries in, and returning my rechargeables back to me. Sometimes they'll come home after school and the battery will die, I put the microlinks in their cases in their backpacks because all their disposable batteries are at school and let them use a rechargeable til they can change it the next day. Even my 5 year old is doing this!! Also a quick story about deaf children correcting hearing adults' speech. Gage was in the car with my mom and she said "Look for some deers." (lol) Now I've advised Gage to stop correcting people's grammar mistakes and speech, it's not polite. So mom notices that under his breath he said, "deer," as he looked out of his window. She says, "Well one would be deer and more than one would be deers." He politely assured her she was wrong and she figured he was likely correct so she took his correction (and laughed about it). Kids!

Okay, movie day...So I watched a movie we rented from Netflix (at my husband's request) called "There Will Be Blood". I'm really not sure what I think of it. It's really about how horrible this man becomes the more oil he acquires. Mo money mo problems! But if you haven't seen this movie, the man's son is injured and becomes deaf. Directly after the explosion, the boy can be heard saying "I can't hear my voice". And he never speaks again until his father demands he speak rather than "flap his hands around". I find that not realistic (about immediately not using his voice anymore) but I guess the movie wanted to quickly get into the signing. The old man actually mocks his son's deafness when the grown son returns to tell his father he'll be an oil competitor rather than continue working for his father. I think you should just watch the movie and draw your own conclusions, it is interesting and more of a guy's movie I guess, but I did watch it all and found it interesting. And the boy's hearing loss plays a big role in the movie you'll find.

When It Wains, It Pours......

Although this could be the local weather report for today, it's not. It's about approaching the end of yet another era. This month, my five year old will complete her preschool years. Our therapist has always been there to help us work on Brook's speech and that too, I know, will soon come to an end. She will begin "big" school in August. I've impatiently awaited this time for years now, but now that it's so close I can practically touch it, I'm not so sure I'm mentally prepared for it. Gage will be 8 next weekend and that too both breaks my heart yet gives me comfort at the same time. There were times I wasn't so positive we'd ever make it this far in those 8 years.

Just today as I drove Brooklyn home from preschool in the pouring down rain, I heard from the back seat..."Man, Mama, it is rainin' rainin' rainin'!" I have to be honest, it made me cry...not because she finally is getting her initial R's correctly, but I had hoped I had a few more months of "Man Mama, it's wainin'!" It caught me off guard and I was consumed with the fact that she too is growing up fast.

With the IEPs coming up this month, I've already been found "nesting" so to speak. Although this type of nesting isn't preparing for a new arrival, it's preparing for departure of my baby into childhood. It won't be long til she'll be telling me what to wear just like her brother, (click here to read that.) Part of me thinks I won't have ENOUGH to do and part of me thinks I won't have time to do anything else, so I'm cautious before adding anything else to my volunteer plate. I'm going to hopefully be subbing part-time at their school so some days I'll be there in the building with them, while other days I can work on my stuff. It'll be bittersweet I know, I'm just not sure if I'm gonna be laughing or crying that first day of Kindergarten.......to be continued.

The Good, The Bad, and the Downright Ugly

Here's the good!

Here's the Bad!
Brook's learning to spell correctly.

She began writing her name on walls, then she figured if she wrote Gage's name, she wouldn't get into trouble.

So first is my kitchen window, then it's the fridge w/both names and then she really wised up and only wrote his name on a cabinet door....


And then it's the downright UGLY!!


That's her daddy's car, with Gage's name CARVED in the door!

Giving me therapy

Number one, I thought I was doing well by spending every ounce of energy I had the first couple of years after my children received their cochlear implants, teaching them all about everything. Now, they seem to correct my slang, my word tenses, and pronunciations....um thanks guys!(I say this because now Brook does it too! I used to get by with some grammer errors or lazily pronounced words, but not now) Number two, Gage has developed the ability to make us put our thinking caps on, asking questions like "I wonder what's in that red package under the tree? hmm, it has your name on it (referring to me, and don't think I already spotted it from the back door as soon as I walked in" He and his daddy went shopping today. He continues with "hmmm, think. What could it be? It starts with a P".....he's just dying to tell me but knows he'd better not! So he waits patiently for another 2.5 minutes until his feet are leaping him into the air with more details and he just can't hide the excitement. I know he's about to burst and he says "What words start with P?" I continue to fold laundry, trying to act very casual and I say "panda bear, oh yea, I'll bet it's a panda!!" and he grins and shakes his head no. "Think Mama, what else starts with P?" and I act as if I don't know. He says "hmmm, let me give you some p words.....Purse, pompass grass..." and I just burst out laughing, knowing I have a new purse in that box! He tries to play it off as if it's not really a purse, but I'll guarantee you, that's what I have. We'll find out in 26 days I suppose.

"This is the way we sweep the floor"

I sooo remember when the kids were babies/toddlers singing "this is the way we mop the floor, or brush our teeth" we would sing this song w/everything!
Here it's "this is the way we sweep the floor, sweep the floor, sweep the floor...this is the way we sweep the floor so early in the morning" Sure it'll take longer w/a broom that size but she wants to help...songs are always good when working on speech and language

sequencing

here is a quick lesson in sequencing and foretelling: everything is a lesson;
here Brook demonstrates how she helps w/dinner and foretells in the end where the food is going!

Chores

I am not above giving the kids chores. I ask them to help out all the time, Brook especially loves to help and here are a couple of her favorites. Helping to water my pitiful plant and doing laundry. Gage helps too but is less willing and I"ll likely never get a picture to prove he actually helps. Helping out gives them self importance, helps me out, and is always a learning experience...listening following directions, sequencing, sorting, you name it, we've learned it doing chores.

Correcting OTHER'S Speech

We have made progress w/Gage correcting people's speech, he does it in private now! At a family gathering last week, he ran over and jumped in my lap and whispered that another family member made a mistake. I said "that's okay, what was it?" and he said,"she said mu instead of much." I had to throw in a "good listening Gage." Now here in the deep South, people do at times slack on the word endings. We don't necessarily pronounce the ends of words as clearly as we do the beginnings, I catch myself at times leaving the endings of words off as well.example(yella/yellow) and I think sometimes what I notice people doing, is maybe finishing their words but unvoiced...guess it's just dialect but I do have to say, having two deaf children has really improved my speech! Guess I had to improve or Gage would correct me...wouldn't that be something if a boy born deaf became an AVT!