A bunch of nonsense

Here you see Brook's Dibels Test scores. It pays having a mom who speaks nonsense! My kids think nothing of reading words like wof, dat, gid or whatever else Dibels throws their way because they are used to listening to babble anyway, so when they read "babble" or nonsense words, they don't stall to try and make real words out of them, their mom speaks nonsense all the time anyway (in more ways than one I'm sure)....Good job Brook, you've surpassed benchmark for the winter!

He did it !

Woohoo! Remember this?  Well he did it again, and with complete confidence this time. I asked him to walk into the post office alone (he's almost 9) and order two stamps for the two letters I handed him, I told him it is fine for them to keep the letters, I need them both mailed. I handed him a dollar, and off he went. I watched through the glass doors you see in the photo and I can see that he and the cashier are having a conversation. He walks out w/my change and receipt. He got back in the car, smiled because he was proud of himself, and says, "He thought you wanted two stamps to bring home, but I told him to put them on the envelopes." I smiled, he had maintained a conversation with some random person, cleared up confusion, and came away from the task proud of himself for being such a big boy! Go Gage!

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!)

For the technically challenged...

I took Gage in for a tune-up, aka mapping session at the audiologist's office today after we noticed he could not understand anything w/certainty using his right ci alone...the left one seemed fine.
As soon as they hooked him up to check impedance levels, they realize that he has four more electrodes showing as 'open' (he already had two turned off from a prior visit) and it was decided that these would also need to be turned off. They did a thorough mapping session and he really had very minor changes so his map really wasn't the issue, it was the electrodes, they did some checks on the ear not in question as well (the re-implanted side) and all was good there! So he's doing great since we fixed the problem(s) and can hear and repeat any and all babble w/new ear (the right, implanted for the first time 10 mos ago) AND with the re-implanted side (left, one that was first implanted at 3.5 yrs old, became infected w/a staph thus the removal only to be re-implanted 10 mos ago) So we can just watch it and see if any more try to cause issues.

Now, what the heck does that mean to the technically challenged like me? It means that he has 2 departments (right, left) that work for him (to obtain sound). One dept. (left) is a great bunch of workers, always working together in harmony, getting him as much sound at comfortable levels as they possibly can. The other dept. (rt) has had some issues. Though technically, 22 (electrodes) were hired for this dept to pick up sound for him, two guys quit right away. That's okay, 'cause the supervisor (audiologist) just makes sure that she delegates their areas to other workers who are more reliable. So absolutely, 20 workers can do just as well as the original 22. Then, we suspected that a little quality control was in order again when this same dept wasn't putting out near the service as we felt the other dept was doing (left side)...so we took our concerns to the supervisor (audiologist). She observed thru her computer screen (which can tell her who what where when and why) and she immediately spotted our trouble makers. So unfortunately we had to let four more go today in that dept. Unfortunately we are not accepting applications for sound catchers at this time, when we hired the original 22 we knew that would be our maximum employees w/no replacements. We hope that this will be our last termination but we will be keeping a close eye out for anyone who makes trouble! .....and that's the best I can do for the technically challenged.
And let it be known, this is the ear that we first tried to implant when he was almost 2 (but were unsuccessfuly due to severe malformations).

Eyes and Ears

Last week I broke one of Gage's processors and due to freezing/snowy weather we just got the replacement in yesterday. When I replaced his backup he said it was awfully quiet. He had been wearing a backup processor since the incident which was running an old set of programs since Mom forgot to bring those things to our last mapping appt. Long story short, that one was fine but after a Ling check (he got them all but not confidently) and some other random babble (which he missed them all in high frequencies and a few in the low), it was determined we need mapping on that right ear, his left seemed fine! So we go on Friday to take care of that.

Now on to Brooklyn...got a call yesterday from school, B was crying, her glasses were broken. Well, not completely broken just unwearable, a screw fell out and a lens wouldn't stay in, and w/little Miss Drama  Brooklyn, when in doubt, cry...just like her Mama used to be, lol. So I checked the little tot out to go for repairs. On the way she says, "Mama, I'm not talking to 'M' anymore, I can't hear her and she's too quiet." I asked her if she had maybe tried telling the little girl that she can't hear as well as some kids do and ask her if she could repeat herself and speak up a little bit. Brook had done none of that but just decided to not speak to the little girl instead, so hopefully she'll take my advice and just ask for repeats or ask her to speak up some. It seems to be this one particular child so I'm guessing her volume isn't as loud as the other kids or Brook would complain about them all.

Now on to report cards, Brook got all S's which is like an A in Kindergarten. She had one N last report card but this time she had no Needs to Improves!YAY B!
Gage, let me just list his grades, keep in mind, I know he did okay last time but if you know him and his potential, it was not at all up to his level and this was pre ADHD medicine. Compare his grades to this time where some areas came up more than 10 points!!! He's doing so good on his medicine and he knows it! I mean the kid is 8 and do things like this!
The first grade will be from last report card and the other is what he made this report card medicated.

• language      81     vs.     98
• reading        75     vs.     87
• spelling      100     vs.    100
• social studies  99   vs.     92
• math           78     vs.     93   and it got harder!
• science        81      vs.    94
• conduct        79     vs.    96        oh yea!!!!

Big improvement, now that's more like the little man's potential!!!  And on a note about reading, he hates it, I'm surprised he got that good, he guesses mostly since he told me he really don't read those books they are supposed to in class!! What am I gonna do w/that child?

HANDS........

When you think of hands, what do think of first?  If you had asked me a few weeks ago, I would have told you of my mother's hands. Not her hands now, which she can wash with her favorite scented soaps and follow up with her matching lotions, but of her hands years ago, when I was a child. I'd have told you that her hands were so dry and cracked, bleeding at times from being elbow deep in denim 50 hours a week as she worked in a sewing factory all her life so she could buy her family of six groceries...only to take her dry and cracked, bleeding hands and give items back to the cashier when there still wasn't enough to cover the total bill. I'm sure her hands reached for items such as a scented lotion or something else she had hoped to splurge on since she had put in overtime for the week because I still brought home the Cocoa Pebbles or some other random and unnecessary item she allowed me get, because she wanted me to have it.

She now brings over the Cocoa Pebbles and other items my kids want, without anyone asking her to, because she doesn't want my hands to bleed. She knows I could go work full time and still raise my kids, manage appointments,  buy groceries including Cocoa Pebbles, manage the house, etc. etc. but she knows what it feels like to put stuff back, and she knows the bulk of my volunteering would have to go. She knows that all that I try to do for hearing impaired children and their families (my scented lotion) would be shelved for years, until I could afford the time again. All that hard work over the years, and her hands no longer bleed.

But now, I want to tell you about other sets of hands...

There are times in your life when you just connect with certain people for various reasons. Anyone who has had a child with special needs sometimes reaches a place in their life when they feel HANDS. Sometimes those hands come from inside the family, the community, support groups, God. Sometimes it comes from another family who knows what it's like to be unsure, scared, heart broken, devastated. Many times we parents don't even know if our children will be here the next day as their little bodies fight infections, disease, struggle to breathe and all we can do is beg for HANDS. We beg for doctors to use their HANDS to make the little hearts beat another day, we beg for family members to hold our HANDS til we hear some good news, we ask God to open his HANDS so we can place our guilt, our worries, our fears of the unknown into them so we can have the strength to sometimes do it all again the very next day. I've been blessed to feel all these HANDS at times.  And I think this is why I feel so connected to this family each time I'm around them...

I met the Simpsons a few months ago (read about that here). And as I watched them on stage, Todd belted songs that came from a place inside his soul, where only God's HANDS been. I learned how he'd fought for life as baby, as a child, and now as a young man, still going every few weeks for immune therapy, living with DiGeorge Syndrome. His mama has begged the doctors when he was little to make his heart beat another day, if I had to guess, I'd bet she's begged God too. I've been there, begging for the life of my child who was also born with a rare syndrome, hoping to walk out of a doctor's office without a surgery appointment, hoping the nurses can bring down a 104 degree temperature and get air in his lungs when he was a 7 month old fighting pneumonia, and many more times. I've felt relief when HANDS were opened, my burdens poured out, and in one of my most desperate times, I've promised to The One whose hands were open, that I would do anything, whatever He directed. And I'll bet you that Ina and Wes, Todd's parents, have done the same.

So after I met them, heard their story, felt that initial connection, I just asked if they would consider doing a charity concert for our HEAR Center. They said YES. Very excited (with my head only slightly swelling because I had just booked one our area's hottest bands!) I gave the good news to The HEAR Center. They were overjoyed and welcomed the help! I had in my head that we would make the center thousands and thousands and thousands of dollars I could not wait to do my first fundraiser. After a couple of bumps in the road and then a couple of actual road closings (the literal kind) I think I had forgot about HANDS. I found myself the day before the concert, needing HANDS to hold, and they were there. I found myself the day of, needing open HANDS to pour my anxiety into, and they were there. My biggest fear, was that we wouldn't sell all of those tickets. Snow and a hard freeze to follow that, prevented many people from going anywhere. There had been 10 people show up to the concert the night before we were told when we got there. I was worried, and everyone knew it, in fact, Ina, the HEAR Center and my friends were all fantastic at calming me down, assuring me that it will be fine. People came, because they wanted to hear Todd Simpson and Mojo Child play, people came because they wanted help the HEAR Center and people came because they wanted to support me.

I spent the first part of the concert feeling defeated because I had wanted to be able to hand over the thousands upon thousands which I knew this concert could bring, and I wasn't able to do that. I AM my own worst enemy and I know that. I finally sat down, stopped counting heads, and remembered why I was there in the first place. I took one look at Todd, and I heard my sweet MawMaw say, "God's got his HANDS on this one." And I knew He did. She made sure she told me that about my own child before she got sick and passed away. Seeing Todd on stage made me wish he was growing up with my little boy, showing him that unique is a good thing. But he can't he's already grown up. He's on stage playing and singing and doing what he loves to do, and being unique helped him get there. Many people in the crowd knew Todd was unique, because they were up dancing, singing, jammin' right along when otherwise they wouldn't...but they had no idea how unique he really is. Many had no clue that it took HANDS to get him where he is today. After every song, I gave him a HAND, because I love his music, I love the songs he sings, and I'm talking both on and off the stage.

When the show was over, it unfortunately ended when we all were hoping it never would, we all said our goodbyes, our thank yous and I walk out into the lobby where I see my circle of friends gathered and Todd is speaking to them. After they thanked him and told him how grateful they were to have been invited to watch him perform, he begins talking about how it is to have disabilities, and how important it is for him to give back. This is the "child" not the parents talking...and again I'm reminded of why I am there in the first place.

No, unfortunately we did not do the sell out show I had hoped for, I think God's HANDS showed me how to stay within His reach, ask for help when I need it, and learn, and I'm glad. Todd and his dad Wes who is part of the band Mojo Child, agreed to help us do another event in the future (maybe warm weather *smile*) and I will take everything I've learned from this event being my first ever, and we'll make it even better. I thank all those HANDS who showed up in the 12 degrees to come to this event (good thing it was inside) and we look forward to doing it again! We ended up with a good crowd, and I'm so glad we did this, and on behalf of the HEAR Center, we again Thank You! I've recommitted myself to helping those families with special needs children, even if my HANDS bleed, because I want to.

he's got ROCK and he's got BLUES

and his name is Todd Simpson...

Saturday January 9, 2010
Workplay in Birmingham, AL

Seating and tickets are limited so get there early (or purchase advance tkts here) . Doors open at 7 and show starts at 8 and all ages are welcome (with a cash bar for adults). If you have teens and live in our area, this would be a great show for you to enjoy while supervising the younger ones. I just purchased my tickets and many of the parents and employees of the HEAR Center have as well to ensure they get in.

Hearing loss, in most cases is highly treatable but many services and items that fall into the hearing loss category, are not adequately covered under all insurances (some aren't covered at all) so we need your help and support. You can still make monetary donations here.  Thank you to AL Power and Tom Williams Lexus for sponsoring this event!!

The Children's HEAR Center provides children with hearing loss, audiology services as well as auditory verbal therapy services. They have also an Early Interventionist there as well to coordinate services for those under the age of three.