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.

those F words again

First, we found a doll's head (creepy) and Brook stuck in on some bamboo to warn off enemies. Then she found a fern.
Then we walked in the forrest and found a fox den (I think, at least that's what I told them).
Now one day there will come a day when I'll wish we hadn't worked so hard on those "F" words (teenage years). I may have to let her FLY to Italy, where my friend will be more than happy to teach her those F words. But for now we'll keep working on those F's (FIVE year old style). I can't believe she's almost FIVE!!!
And I can't believe how well she's doing on these Fs.........You're next /TH/ !

Patches of Love

Poetry isn't my specialty but every once in a while, something will inspire me and Brook's recent interest in Maw-Maw's quilts(my husband's grandmother) has sparked a few tears and short poem. This is what I'm thankful for this Thanksgiving...Patches of Love. Though Brook never heard her voice, this lady was so sweet she called everyone 'Sugar'. Brook enjoys hearing about her now...and how each patch of her quilts was sewn with love.

Patches of Love
by Val Blakely

When you look at me, what do you see,
Just a blanket of rags or sheer beauty?

Look at the flowers and think of a time,
I planted the mums near the tree that you'd climb.

Look at the dots and see me again,
Cooking home-made biscuits for your Dad and his friend.

Look at the stripes and remember for me,
Picking blackberries out back, as far as the eye could see.

Tell your children these stories, take the time if they ask,
To pass down the love from generations past.

In loving memory...

Brook has really enjoyed the little stories I tell her about what all MawMaw might have been doing when she once wore those patches. She would never discard a garment just because it had aged or even torn. She would cut them into little patches and with love in every stitch, sew them together until she was satisfied that it would keep not only her children and grandchildren warm, but her great grandchildren as well. Thank you Maw Maw, your quilts will continue to warm our hearts.

Flashback

We visited the carwash again today and this time Gage was with me. Now of course both kids are deaf but they did have their cochlear implants (as always during the day) and Gage took the lead this time telling Brook "press your hand against the window." She did as told, and they laughed so hard as the wash jarred us around with the high pressure wash. This totally reminded me of when Gage was little, pre-implant, and how he used to smell of EVERYTHING. If he touched it, he was like Mr. Sensory! He would lift it, smell it, feel it, smell the other side, until he was finished. I know it was because he couldn't hear well and he was needing more input from his other senses. Just wondering how many of y'all have little hard of hearing kids that are sniffers.

O' Christmas Tree

Can we say VOCABULARY........(wreath, snowman, manger,etc.)
Wow, I forgot how much seasonal vocabulary there is until we got down the Christmas tree. I know it's a little early but the kids are home all week, it'll give them something pretty to look at. Brook said "do you remember when our tree was by the red chair in the computer room?" I was shocked because she's almost five and that was two years ago. We only had one casualty as you can see from the one that fell...as soon as it hit the floor, two people said "I didn't do it."
Brook repeatedly said was "that's just gorgeous!" every time Gage pulled an ornament out of the box. She kept asking for HOOKERS, and I realized she mean HOOKS(thank goodness).
We still aren't finished but it's up for now, can't wait to go shopping Friday to put the presents underneath. Most importantly, what am I going to get myself this year????
What is up w/those faces? I say smile and they smile w/only one side of their face....kids!

Is Bilateral Really Better?

Recently I wrote an article for Cicircle News on the differences I see between my children. One is bilateral and one is unilateral. The article can be found by clicking HERE.
So the journey continues with my Goldenhar Baby...as usual we go to various appointments and sometimes out of the blue, we are blindsided with new information we never expected. After a precautionary CT scan this week to peek at his CI, we discovered that he is now a candidate to become bilateral. We never expected that he would be...his ears are severely malformed and we had already attempted surgery on that side many years ago, but unfortunately, his cochlea wasn't even located during surgery. Now it's there! as it always has been somewhere, just either so tiny before or unrecognizable....but bottom like is, it's there, you can see it, it's opened up nicely says the ci surgeon. So we are on the road yet again for CI surgery in the future months. I'm in no rush but being that Gage will turn eight in May, it would be advisable to move it along and not wait too much longer since it's been six years since sound has passed thru that ear w/an aid (even though it wasn't much sound at all). So...Is Bilateral Really Better? You better believe it, but we had no idea it would be an option for him....we are keeping very level headed here and realize that other issues could arise during surgery to prevent the insertion but we are hopeful that he will receive it, he'll eventually benefit enough from it to aid in speech reading w/that ear alone and simply hear more with ease having two instead of one. Updates will sure follow as we crank up once again for a ride down that CI road!

Thanksgiving Special

What a treat, today at Brook's special ed preschool they had their little Thanksgiving program and the kids did excellent! It's really touching to see those children who each have their own challenges, shine. I was worried I might get teary eyed after the emotional past couple of days I've had with Gage's on and off again ear issues.

I could feel the pressure in my eyes as the water built up, the dam ready to break at any moment when the kids all took turns naming what they were thankful for. Each child named brothers, sisters, moms and dads, even grandparents and I knew I'd lose it when it was Brook's turn. As the teacher pointed to Brook and asked "...and Brook what are you thankful for?" a lump rose into throat as I tried to swallow it back down. And then her sweet little voice said "Drake!!"
Um...Drake is her little friend who was absent today. Where's the "MY mama, my daddy, my brother!!" All anyone could do was laugh. Oh, at least I didn't cry. Many kids were pilgrims and others were indians. They had a great time and so did we.

Can't wait til Mother's Day to see who steals my sunshine then!! hahaha, love those kids.

My Child

My child...who has one bracelet on because he likes it (red), one on because I like it (orange medical bracelet) two because the Dr likes them (child alert-for being a ci patient, regular office visit bracelet)...amazes me. He went to the doctor yesterday, expecting to be admitted since his ear pain and swelling is coming back for the fourth month in a row. The antibiotics may or may not have been the answer and in fact he has this mysterious pain on his CI that keeps coming back and we were told if the last oral antibiotics didn't work, we may be admitted for the IV type. So we packed our belongings and drove the hour and a half, got there early and waited a long time. I watched my child (with ADHD) fidget, talk, fidget, play in the floor, push his trucks, slide around, talk some more...but he was really well behaved. We were at the ENT's waiting area when I found myself mentally drifting in and out of Gage's lengthy descriptions of what exactly he wants from Santa. "I want the row bars to be black, no wait, yea black, with two lights not four, and the leaf springs, and the lift kit..." on and on and I looked up at this child who was not showing how nervous he really was and just smiled at him. I realized how much I actually enjoy hearing about all the trucks, truck parts, and I continued to smile as the details this child was giving me, I couldn't describe if I had to! The door popped open as someone was leaving and when the full waiting area realized it was not their turn, all heads went straight back to Gage. I nearly started crying right there because this child had everyone (especially the men) very interested in his Santa list, I didn't even realize they were listening.
Then my child needs a CT scan, he hasn't had one in years and was always sedated for them. But he was desperate to NOT be admitted so he climbed up on the table...didn't move a muscle except his eyes which were moving very fast, all over the place but apparently that was okay. With ADHD I'm sure it took every muscle in his body to hold him down! No abscess was found so far and right now it's just a wait and watch with this, hopefully it won't get really bad again, and it remains a mystery. He's doing well and right now we're good.
I have much more to post about this visit but want to wait til I get more clarification and do some more talking with family and my team of professionals before I post more on the subject. Could be something exciting!

My Little Signer

Caught Brook again, practicing her signing skills. She's learning the whole alphabet and you can see her signing along with the computer game.



As for last night, I need to give a big SHOUT OUT to my friends at U of Montevallo where I stopped in last night, gave them our whole story practically...and learned some things as well. I want to say hey to Arthur who loves that school so much, he just has decided to stay there a little longer! He was a hoot and is a CODA (a big grown up KODA) who is a Child Of Deaf Adults. He is in fact hearing, but is so smart...he thinks in ASL and then uses spoken English as his second language! He was a pleasure to meet and will be an asset to the Deaf Ed Program one day.

Hello University of Montevallo

I'm so excited to be meeting and speaking to a class of speech and language students at a very nice college here in Alabama tomorrow. This will be my third annual visit and always have good time there, the people are really nice and the teacher is my co write for I'm All Ears !!

Cicircle Blog

Guys, if you haven't been reading the Cicicle News (click to visit) then you could be missing out on valuable information. Here are the posts we've already put up...

1. "Introduction"
Naomi

2. "Paving the Way"
Melissa Chaikof

3. "Which Cochlear Implant Brand Should I Choose..."
Lydia

4. "It's Not a Sprint, It's a Marathon!"
Naomi

5. "What is a TOD?"
Mary Shaddix

6. "The Unexpected-An Adoption Tale"
Anonymous

7. Communication Modes
Marny

8. "Is Bilateral Really Better?"
Val

Don't forget to click on the slide show on the side bar and meet our kids !

Bilateral Workshop-Cochlear

We went to the bilateral workshop last night and Brook had her first public appearance at one of "my events". She did great, she made seven trips to the food in the back (no surprise there) and luckily they had coffee for me and my mother! It's not often I stay out that late (the event was from 6-8, an hour and a half away) but hey, we made there and back and you can see Ms. Claus...


I mean Brook had a good time. She received a free hand-held fan (and snatched one for Gage too!) for her attendance and drew her audiologist at least a dozen pictures with the crayons and paper I had in my purse. I'm sure the audiologist will add them to her collection of monster trucks that Gage has drawn her in the past or decorate that baby's room with it **she might be a mom by next week** I did get to speak for a few minutes and introduce Brook who went behind Cochlear's big screen which made me very nervous...but it all turned out well.

Tasting the Clouds

If you've read my book I'm All Ears then you may recall a story about how the road to school one day turned out to be an amazing journey, when we simply took things in from a different perspective. Well today when I left my house and realized how overwhelming the fog actually was, my mind went back a few years when I was driving in the fog....

When you have a child who is diagnosed with a disability (any disability), you first might feel a panic set in...how the heck are we going to get where we need to go? Some people let the fog consume them and they turn away, never even looking at it, into it, or through it...but you decide to get in the car and drive, because you HAVE to. As you venture out of your comfort zone, you look cautiously in each direction before you pull onto the road. You hold your breath, just hoping you've made a good decision, even though you can only see those things that are nearby. You listen to everything, hoping you'll get some clues to see if you're even on the road, or if you're headed for a ditch. Then you begin to see little white or yellow lines in the road and you know you're on your way. With focused eyes you press the gas a little harder, earning some confidence. Then you begin to see headlights and you take comfort in knowing where the others are, and you press the gas a little harder. You look down to make sure you have your lights on, so people know you are there, and you press the gas a little harder. At times you have to slow to an almost crawl, but that's okay, you're making some progress...other times you feel like you're in the clear only to run into another patch of fog later on. But that's okay too because you're getting the hang of it. You see that other brave people are driving too.
I slip back into reality when my darling daughter asks me if there are any pink leaves. I tell her "I don't know honey, I've never seen a pink leaf," and I smile hoping I haven't crushed her with disappointment, I know she believes in pink leaves.

I drop her off at school and head over to the local park for my daily walk. I tell myself that I need to think about what I want to say tonight at the Cochlear Workshop but the beauty of the park sends me into dreamland once again. I go back to the car to get my camera, knowing there was another story coming. I look over and the only visitor at the park today was Squirrel.

He looked at me, and I at him and using telepathy I tell him "go ahead Squirrel, take your nut..." and I stop to listen. I hear Sparrow (and I kid you not!) I smile and continue walking, enjoying the Sparrow's song. The park is so beautiful, my favorite trees are decorating the sidewalk with the most beautiful blanket of colors....

Some trees have been so generous, they stand there almost naked, devoting themselves for my optic pleasure. I suddenly stop in the middle of the sidewalk, ask myself why in the world am I walking in this direction...I always walk in the same direction because that's the unwritten rule of the walkers at the park...it's just how it is. Well today, there are no other walkers, so what is stopping me from walking in the other direction? Out of spite, I do a 180 since there's no one there to tell me I'm going the wrong way...Though the fog is less dense here, you can still feel the dampness in the air. I open my mouth as I wonder what it's like to taste the clouds. The cool, moist air slides down my throat and fills my lungs with peace. I continue the most beautiful walk ever when I notice something out of the corner of my eye.

Sometimes, it's great to be going in a different direction. You see things that you've never seen before. Enjoy the fog my friends, taste the clouds, and believe in pink leaves.

the Crush

Since it has become one of our favorite pastimes...Gage's father and I love to take moments like these to embarrass our kids, whenever possible, afterall what are parents for?


AVT has taught us parents to take all of life's opportunities to increase vocab. So when we find Gage, day in and day out, getting straight out of bed each day to run over to the computer, or run home from school to play for an hour or so before he realizes...he needs to look at her once again, it with great pleasure that we introduce Gage's latest vocab word...CRUSH. First it was Beyonce, and now it's Leona...and just like his car here says...he's "dangerous" so watch out Leona!

Bilaterals Workshop

Hope to see you there!!

Bradley Lecture Center-Suite 402
1600 6th Ave South
Birmingham, AL

Time 6-8 pm Thurs. Nov 13

Sponsored by Cochlear Americas

The Sparrow

Those of you who "know" me, understand how I used to write little stories (which I love to do) but until today, I just haven't had time. Things sort of come to me especially when I spend good quality time with my kids. Today, I just sat on the ground outside, paying attention to EVERYTHING around me, and then wrote you a little story. It may mean different things to different people.

Once upon a time there was a bird. A small but beautiful little sparrow that would spend her days singing from tops of some of the most gorgeous trees at the city park. One day she was singing a melody she’d written herself from atop the tallest most beautiful red maple tree, when she realized that none of the humans were listening. Oh sure, they would stop and turn to the crows, who sang the same old songs over and over, but why wouldn’t they listen to the sparrow? So she decided to fly to a lower branch, maybe they just couldn’t hear her. She flew down to the bottom branch, and sang her song with pride. She noticed an elderly couple approaching her. Just then they stopped right in front of her, they only noted the beauty of the old tree. The fine red maple told the sparrow, “maybe you should try another tree, I am so bright with my beautiful fall leaves, maybe they don’t notice you from my branches.”

So the sparrow flew to the next tree, just an average pecan tree. Again she sang her tune with pride and when she looked around, she saw a couple approach the tree. Excited, she flapped her wings and the humans never even looked up at her. They were too busy admiring Squirrel, grabbing a nut like the thief he is, and scurrying back up the tree. Pecan Tree told Sparrow, “maybe they can’t hear you from my branches, I am so full of delicious pecans, the humans are distracted by all the squirrels, try another tree.”

And off sparrow flew, this time landing on a branch of a water oak. She sang her little heart out, only to yield the same results. “But Water Oak, why don’t they listen to my song?” The wise water oak told Sparrow, “It’s not the song you sing, it’s who you sing it to.” Stay here with me for a while and sing your beautiful tune, one day someone will turn to listen. So Sparrow built a nest inside Water Oak’s branches. Everyday, she got up and began singing her song. The busy humans were running thru the park, pushing their baby strollers, having their picnics, but no one listened.

Until one day, this human Mommy was walking with her little girl. Picking up pine straw, pine cones, acorns, and more putting them all into a bag. As they came closer, Sparrow became so exited that she began flapping her wings and she lost a feather. When the humans got closer, the little girl picked up the feather and showed it to her mommy. Sparrow began to sing. Both Mommy and little girl pointed to their ear and smiled so bright it warmed Sparrow’s heart. They must have stood there for thirty minutes listening to Sparrow sing. Mom told the little girl “Say bye-bye birdie” and as they waved goodbye, Sparrow knew that she was meant to sing for them. Had she given up like many times before, the little girl may have never heard anything other than crows. Sparrow knew that even if no one else ever listened to her, her song had been heard. Sometimes people only hear crows, but when they really listen, a Sparrow’s voice just might be near.

Weekend Update

WooHoo!! Brook got her initial /f/ sound this week. She's been putting the /f/ sound in her words and at the end of words but now she can say "forty-five" instead of borty-bibe" . She's so proud!
Selective Hearing...? Misunderstanding? I actually said "I'm about to go out and rake the leaves" but when I go outside...the kids figured they'd lay in the leaves...sounds similar!

Another ploy against hearing people

My dear sweet "angels" were caught (yet again) planning their schemes to con the hearing. I overheard Brook (who is four!) telling her big brother that she would take her coils off in class today so she wouldn't have to hear the teachers. Gage laughed and frankly, I hear this one a lot! Then, Brook says "I'll tell my teachers, 'I can't hear you, I need new batteries'" just to try and see if she can pull the wool over their eyes...aren't they a little young to be plotting such mischief?

At the Carwash

Have you ever just "felt" the carwash? I mean, tuned out all that noise of the automatic, high pressure water, slamming your car and windows only to gently spray suds of beautiful colors...then hit you again, hard with the H2O.
Well, today, I was on the phone while using the carwash, Brook narrated the events to her doll as I chatted on my phone, pausing to apologize for sounding as if I were about to take flight in a chopper. When I ended the call, I realized that I would have never been on the phone a few years ago when Brook had hearing aids as an infant. You see, I guess she didn't hear so well or maybe it amplified this too much, who knows...but the two times I took her thru a car wash, I vowed never to do it again. It was pure torture for the child. At first, I thought it was just scary for her, being only one, watching this huge "mouth" swallow us, car and all...not knowing what was on the other side. So when she had the same reaction the second time, it was years before I tried it again, in fact, not until she was really trained with her first cochlear implant. Pre implant I literally crawled into the back seat, held her close, as she screamed in horror, looking at the windows frantically as if she were being tortured with fear. Today while on the phone, I realized how violent the carwash actually feels. If you aren't paying attention to the sound, and go by feeling only...it vibrates your bones, sways the car, and then throws water and soap at your face as if it's trying to break in. Very scary! Try it next time,it's hard for the hearing to pretend to not hear, but concentrate on the visuals and your sense of touch. Sorry Brook, I just didn't know.

AVT at play

Today while visiting family I hear Brook in the toy room w/my niece (her first cousin) and I'm thinking...she's practicing her AVT w/Kendall who is hearing. Brook says "now point to three sheeps" as she holds up a book to the three year old. We then hear Brook say "oh you need some hearing aid tape" and she runs to get the double sided tape my mother has in a drawer (for her and Gage) and if you look close at Kendall's ear, you'll see her hearing aid.

You Can't Do That With Hearing Kids

As I make my way to the coffee pot this morning, before sun up, I hear a shuffle sound in Gage's bedroom. As I get closer I can see thru the cracked open door my child has his head buried in his candy sack from last night's Halloween events. As I pour my cup of coffee, in the dark, relying only on my hearing to tell me when my cup is full...he opens his door and exits holding his guitar. He walks over to the implant center and extract his ci, which he normally doesn't put on immediately, but this morning, he had to write a song. So he goes into the living room which was fashioned by soft glows, illuminated from last night's glow sticks. He sits and begins to strum his guitar, which this time, actually sounded like Alice In Chains. As I continued my morning routine, I can again thank last night's sugar overdose to the early awakening of my beautiful little girl, who assured me she was just getting up to get her baby. She walked into the living room, got her baby and walked back to her room, with nothing but a computer screen and glow sticks to guide her. Gage, strumming away on his guitar right beside her, in the dark, she never even knew he was there. She in fact asked me "where's Gage?" as he violently strummed the guitar behind her. I assured her she needed to go back to bed til daylight, and she did....
for about two minutes...lol. Bet ya couldn't do that with a hearing kid. I will keep you informed on the release date of Gage's new single.