Can you HEAR me?

Garden Oddities

2009-08-20T09:02:00.006-05:00

THIS........came out of our garden (and it really scares the crap out of me). Max promptly declared that it was a boy tomato. Yes, it looks like a boy tomato but mommy sees a nose and convinced him of such. You cannot imagine the language opportunities that we had with this.

And just to further push the point, I found this as well.

Can you hear me?

Because you wished.......

2009-08-19T09:18:00.003-05:00

There were a couple of you that wished that you had the Guide By Your Side program in your state. Being the genie in the bottle that I am, and because I really feel that this service should be in every state, I have found a link that might help you get started in implementing the GBYS in your state (and frankly knowing what I know about you, I know that you can do it).

Here is the link to the National Hands and Voices with the application that you can fill out to try to get the program in your state.

http://www.handsandvoices.org/gbys/index.htm Just scroll down.

Good Luck!!!!!!

I am sooooooo excited!!!!!!!!!

2009-08-18T09:09:00.003-05:00

I am so excited to be sharing this news with you. Despite my sore throat and various other nasty's, I feel like jumping up and down.

Our state is a "GO" on the Guide By Your Side (GBYS) program. What specifically is this program? It is a program by Hands and Voices. Whenever a child is diagnosed as deaf or hard of hearing the information is automatically sent to the State Dept. of Health. Now, with this program someone will call the parents and ask if they would like to talk to a Guide By Your Side, which is basically a parent who has a child who is deaf or hard of hearing and has lots of information, resources, knowledge and been there. Here is a link. http://www.handsandvoices.org/gbys/testimonials.htm

I remember when my son was diagnosed at 17 mos. I was freaked out and only held it together until I got to the car and wigged out. When I left Riley's Childrens Hospital, they had given me a book from the State Department that had a lot of resources listed in it, but seriously, I didn't even know what deaf was at the time much less able to sort through all the stuff in that booklet to know what I needed and what I didn't need. The day after his diagnosis I literally called every single number in that book and told them who I was, what I was told, and asked how they could help me. I have to tell you I didn't get a whole lot of info. The whole diagnosis and stress of it all seriously knocked me flat on my face for a long time. Only a parent who has been through this, knows the feeling, guilt, hurt, and fear. I begged for someone to tell me somebody, another parent, I could call who had been through this already. Nope, couldn't do it, it's all confidential info. I asked for counseling to help me deal. I could get counseling, but I would have to drive 2 hours to get it since there were no counselors in my area who were First Step Providers, are you kidding me? So to have a program like this in our state where a parent who is just getting the diagnosis and can talk to someone who has already been there is fantastic!!!!!!

For 2 1/2 years I have searched and sought out parents of deaf children. Max's surgeon, audiologist, and even some people in the school have asked if I could talk to a parent and I have. I so much want to tell them that everything really is going to be o.k. The excitement is................ I am one of the GBYS's in our state!!!! I will get notified of a new parent to talk to. I will get to hug them and help them through the fear. And best of all I GET PAID FOR IT!!!!! I've been doing it for free all this time and still would, but don't tell the State that cause now I can get paid. Can you Hear me?

So I'm aggravated.........

2009-08-14T15:23:00.003-05:00

I put in the movie "Personal Effects" last night hoping to be entertained. Instead I was purely put off within the first 1/2 hour. I don't know who directed the movie, but I thought it might be a fairly decent movie since Michelle Pfieffer, Kathy Bates and Ashton Kutcher were in it. The movie infuriated me so much, I shut my eyes and went to sleep. This morning hubby asked, "Do you want me to tell you what happened in the movie?" I replied, "No." I promptly packed that movie up and threw it in the mailbox, off to Netflix it goes. Good riddance. By now I'm sure you're wondering what in the world? I'm about to tell you.

The movie has a good premise. Ashton Kutcher moves back with his mother (Kathy Bates) to help her get over the the murder of his twin sister. While at a group grieving therapy session, he meets Michelle Pfieffer who is there because someone killed her husband. So the more time Ashton spends with Michelle and her son and helps them through their grief, he is helped through his grief as well. That's a great premise. I love that, and definitely find it to be true. The bible even tells us to get the focus of ourselves and put it on others and we will be blessed. So how come I'm so freaking mad at this movie? It's because Michelle's son is portrayed as being deaf. (Whether he is or not in real life I don't know.) So why has this got me so flippin mad? Because they portrayed the "deaf son" as being in special ed, mentally off, stupid, and agressive. ARE YOU KIDDING ME? Has the director of this movie or any of the actors never met a person who was deaf? People who are deaf are not special ed material anymore than a hearing person. They are not mentally off, stupid or aggressive anymore than a hearing person. Come on, this portrayal of a deaf person was insulting. People who are deaf are no different than hearing people and for Hollywood to put this mis-information out there infuriates me. I wish that someone out there in La La Land would get a clue and try to portray something accurately. Don't they realize that their stereotypes make it harder for people like my son? Don't they see that those who might see this movie might pick up on this bias and discrimination and classify my son in that category without even knowing him? This crap just gives bullies and other mean-spirited people food to torment with. I'm so freaking upset over this I'm tempted to find out who directed it and send him/her some real information regarding people who are deaf. Can you Hear me?

And so it begins

2009-08-13T09:12:00.005-05:00

Today is the first day of school for Max. He was pretty excited about going to school today. In fact, he was so excited that he didn't go to sleep last night until around 9:45 pm, so I'm sure you all know how he responded to the 6:30 am wake-up attempt. Not very well. I kept trying to get in his face, so he could read my lips, to remind him that it was the 1st day of school. But it was hard with the dog wanting to also get in his face to lick him, he wouldn't open his eyes for any length of time to get in close. I finally just had to stick the coil on his head announce that it was the 1st day of school AND THEN he was ready to get up. I don't know why my kids are so gung ho about this school stuff.

I give Emily exactly one more day and Max two more school days before they refuse to get out of bed and be in a good mood. Sure they're in high ho spirits now, everything is new: new teachers, new rooms, new classmates (except for Max who is still a master in his harem of females), new backpacks, lunch boxes all new. A few more trips and it will soon become just as old and boring as it was last year. Then they will remember my griping and complaining that school shouldn't be starting yet, that the pool is still out there and summer finally got here last Friday. They'll be wanting to sleep in, stay in pajamas until we put on bathing suits and stay in bathing suits until we put pajamas back on. I don't think any school should open their learning doors until after Labor Day. That's what they did when I was in school and I turned out fine, didn't I? Anyway, when I literally have to drag them out of bed at 6:30 every morning and throw clothes on them and force feed them breakfast, then they'll remember my sad, sad school is starting days and how I griped and complained that it was too early for school.

And so it begins, the 2 1/2 to 2 3/4 hour drive everyday, the gas, the traffic, the freakey drivers, the lunches, the homework, the rush of dinner, the rush of backpack packing, dragging people out of bed, trying to force Miley to do her thang (the outside thing) so I can lock her up before we leave, and the prayers that my children are safe and let their light shine to others. Can you Hear me?

(Believe it or not, this was the mileage on the car when we left the house this morning. I'll have to post the ending mileage on the last day of school.)

I'm MAD at you!!!

2009-08-12T08:38:00.003-05:00

I really didn't think this was going to happen but it has. I don't know why I didn't think it would happen with Max, maybe because he was a boy, maybe because he is the baby or maybe because he would feel so indebted to me for giving him life. But he did.

We took Emily to school for her first day yesterday. We (Max and I) then traveled to Wal-Mart to get in some desperately needed grocery shopping since I went to a conference over the weekend. Like everyone else, I don't like taking my kids to the store. They whine and complain and about going, then ask for everything from clothes, to toys, to cereal I would never buy, to candy as the last final hurrah at the checkout. I am more inclined to buy them something when they are not with me as I feel guilty for going without them!!!! Anyway, I only had Max and we went straight to the food section and there it begins. He wants yogurt. O.k. and I pick up the big container of Wally world brand yogurt but no, he doesn't want that yogurt, he wants the little yogurts. Ummmm, no, this yogurt is cheaper and there's a lot more. We get this yogurt or none at all. He then wants string cheese. O.k. string cheese has good nutritional value. He wants Sponge Bob, again no, we will get Cheese Head, more and cheaper. Moving on.........we get to Yogurt Bites. Yogurt bites are bits of yogurt in a crunchy sort of shell like thing. Tastes and reminds me of candy. Max wants yogurt bites. No. I am not buying yogurt bites, we have yogurt. He keeps asking. I keep denying. At this point he hollers, "I AM MAD AT YOU!!!" and storms off. Not too far, just about a 10 foot difference between us.

This shocks me even though I'm thrilled that he is able to tell me specifically what type of emotion he is feeling. So, I tell him, join the club buddy. Your sister's been getting mad at me for awhile too. Can you hear me?

Easter Eggs

2009-04-17T10:14:00.002-05:00

The good thing about those plastic easter eggs, is they are great for putting things in and shaking and asking your child to identify which eggs have something in them a' la' Listening Therapy. The bad thing about those easter eggs is you will find them everywhere, you will step on them, your dog will be chewing on them, and they will be hidden around your house until Halloween and you get the Halloween deco out. Can you hear me?

Big Boy Ear vs. Baby Ear, is it working?

2009-04-16T09:06:00.003-05:00

O.k. so Max is being a little obnoxious about the newly implanted ear, but only with me. For instance, he has refused to let me work with the new "baby ear". He will however, let his teacher and therapist work with "baby ear" and gives them no problems whatsoever. When I try, he flat our refuses, messes with my head. How does he mess with my head you ask? Picture this. I finally get him to work with me on "baby ear", Hurray! The next morning as we arrive at school he says, "baby ear" not working. Hmmmmm, I look at the processor, yep it's on and the P4 is there, looks good, no flashing lights, etc. I ask him, "Is it working?" He tells me, "not working". Ok. so we go next door to the audiologist. Our audiologist isn't in today, neither is the other cochlear audiologist, soooo someone else gives it a go. She is unable to determine if it is working, other than it appears to be working. After a half-hour, she comes back and says that she thinks it is working and we put it on his ear and remove "big boy ear". I start asking Max questions, nothing. I start doing the ling sounds, nothing. She says his name from behind, nothing. We don't know if it is working or not. Knowing that his teacher checks both processors every morning I haul him over to the school and explain things to her. We take off "big boy ear" and she starts through the ling sounds with just "baby ear" and with her mouth covered. Max repeats all the lings sounds. She asks Max where his dad is and he tells her that his daddy is at work. O.k. "baby ear" is working.

Flash forward to getting home. I ask Max if "baby ear" is working, no response. We take off "big boy ear" and start to go through some pictures in his class book and when I ask, "where's the cat?" he points to something different so fast I can't tell what's going on. We do this a couple of times and then his sister says his name and he looks at her. So I try again, nothing. She says his name again and again he looks at her. I finally give up.

So this morning I ask Max, if "baby ear" is working. "Nope, not working." Luckily, hubby is there and says, "is "baby ear" working?" Max responds, "Yep, "baby ear" working." Hubby asks him a few other questions with "big boy ear" off and Max answers every single one of them. So it is obviously apparent that my son is out to put me in the psych ward for a bit of a vacation. Can you hear me?

First Things First

2009-04-15T09:50:00.003-05:00

I know we've been missing lately, blame it on technology with my wonky computer. All is well now, since I have new little mean machine, although I still don't have all my stuff on it.

First things first. We have news!!!!!

Some time ago, I really can't remember when (you really shouldn't expect such things from me) I submitted some funnies for a possible book. Way back in March I received an e-mail stating that "the book" was done and ready for sell. I kind of passed over that e-mail but the next morning went back to get a closer look. Not only was it the book with one of hilarious stories, but Max was on the cover!!!! I have to say I was shocked and surprised!!!! So first things being first, this book needs to be ordered. Here is the link to I Don't Believe My Ears All proceeds from the book go to the Deaf Research Foundation so you might consider ordering one for all your friends too.

O.k. now that the book is out of the way, I want to say that Max is doing fine. New ear is still not caught up with old ear but we're working on it. We are having a little blip in the road, but I'll try to post more about that later when I can wrap my brain around it a little better. One thing that is bothersome and perplexing though, is why he has to put holes in the knees of every single pair of jeans. Can you hear me?

The Surgery Has Been DONE

2009-01-07T17:51:00.005-05:00

We went ahead with the surgery on the 23rd due to an ear infection in the left ear found on the 10th. (It always happens doesn't it?) I really didn't want to do the surgery, but it was now or whenever, so we went with now. I think I was more worried about going through this surgery than the first since it felt so much like an elective surgery (which it is both times, technically, but the first he had to have it to hear and well, he was hearing so it seemed more of an elective this time around). It was hard to wrap my brain around doing this again, despite all of the research that shows the benefits of being bilateral, plus there's always the fact that Max is a person first and foremost.

The Saturday night before the surgery I was majorly stressed over the surgery, Christmas, one of our dogs dying, I won't go into all the details, but it was ugly. On the 23rd we headed out at 5 am to get to the hospital by 6:30 am. My pastors had told me to call before we left so they could pray with us, and as we pulled out of the driveway I started to call when Trent said, "Don't call them and wake them up. You're beating a dead horse, you've had people praying for weeks." So I didn't call then, but had plans to call at a more respectable hour before the surgery. Now I drive to the city every single weekday to take Max to school and on that drive we have a 25 minute dead zone. Meaning no cell service. We are in hills, and a lake, forests owned by the government so there are no cell towers until I hit the interstate. I know it's a dead zone. Many times it has dawned on me while in that zone I NEED to make a phone call. I never can, no signal and my phone searches for one but does not find it til we hit the top of the hill before the interstate or we get close to home. That morning, right in the middle of the dead zone, my cell phone rings, I look at it strangely and see that my pastors have obviously called on the "Jesus" line. I'm slightly freaked, not that this is possible, cause all things are possible with God, just that he took the time to open the line for me. So they call and ask why I haven't called yet, and I promptly blame Trent cause it's the truth and any excuse to throw some blame at him seems good to me. They pray for us and I talk to them all the way to the interstate and beyond. That phone never faded, altered, dropped off or any of the other wild things cell phones do. Not one time. On the way, as we were driving in the dark of the early morning, I saw not one, not two, but three crosses lit up. Three is the number in the bible of completion and affirmation and so I was settled.

We got to the hospital and did all the fun pre-op stuff, registered, checked weight and heighth, heart, lungs, ears, marked the ear, I asked a bazillion questions of every single person whether the question was relevant to the surgery or not. (I know, I know, but when I'm scared I yak.) They brought Max his drunken drink (verstead sp?) Not sure of the spelling on that but man, if they could only give it to me.......here is Max and I, he is happily drunk on meds and if I look a little wigged out (which I do, that is a forced smile), it is because I know they are coming to get him soon.

They took Max and I cried, as usual. We were in it for the long haul. I finished the last of my Christmas knitting during the surgery, 5 hours I sat and prayed and knitted. Finally, our audiologists' came in and say they got full insertion, low impedence levels, and flat lines straight across. (They all inform me that this is the best it can get with implants.) I am happy, I am overjoyed and so glad that it is over. Max's doctor comes in and he sits and talks about the surgery, shows the pictures, (please God, no, those are just too much), and generally starts talking about the crazy Governor, the weather, healthcare when his resident comes to get him since he is done with his part. We rush to get some food (cause who in the world can eat when you know nothing) and begin to scarf it down when the recovery room nurse comes to get us. They figured they would have us come to the recovery room (even though it's not allowed) because they don't want Max to wake up and not be able to hear and be really frightened. Since we are eating, she tells us she'll be back in five minutes, but we inhaled in 2 minutes and went in search ourselves. We go in and I see all the patients waiting to wake up. I see Max in the middle, hard to miss him with his gauze turban, and I go over. He wakes up momentarily, two little tears run down his cheeks and I LOSE IT!!!!!!!! WHAT HAVE I DONE? WHY DID I DO THIS? I tell you, that is the worst I think I've felt in a long, long, long time. He doesn't cry just those little tears then he goes back to sleep. The nurse taking care of him in the recovery tells me that it's alright, (yeah right, look at my son), that he's doing good, (yeah did you hear that cough? he sounds like he's trying to cough up his lung, Gads that cough probably hurts as well), they all look like this immediately following surgery, (I don't care what everyone else looks like right now, it's my son I'm wiggin out over). He slowly wakes up again, I ask him if his head hurts (he's a champion lip reader), he says "no." I ask him if his ear hurts, he says "yes". Waaahhhhhhhhh, my baby. After he's been in recovery and all things are stable and the way they should be and no trouble they move us to a room. We weren't supposed to spend the night, but because of the freezing rain and living 76 miles away, yeah we were staying. I was prepared for this though and had packed myself and Max the necessities to stay. We got a huge room and Max drank all of his sprite in 2 seconds and wanted "more". He also wanted to watch Ice Age. What? You've been out of surgery exactly an hour and a half. A movie? already? At 6:00 pm they bring therapy dogs and Max is happily petting them and enjoying the cool bag of toys they brought. He eats every bite of his Happy Meal. He's in good spirits, seems pretty content, not in much pain other than the IV that they left in just in case he would need an IV. He was pretty pissed about that thing on his hand. He also gets overly annoyed when I keep asking him if his head hurts or his ear hurts. Why? I need to know. At around 8:00 pm Trent tells me to take something (meaning take something to knock yourself out), to stop bothering Max about what hurts and go to sleep. (I had no sleep the night before the surgery and tend to get more spastic and won't sleep until I take something. I once went 72 hours with no sleep because I wouldn't take anything and couldn't sleep even though I'd had no sleep.) The rest of the night is Max sleeping, me waking up every 20 minutes for a look see, and every 3 hours for a good stint while they check vitals. Max did wake me up around 2 am as his headwrap fell off. I called the nurse and she and I spent a good 25 minutes trying to get it back on without hurting his ear in the process. Finally it was morning and Christmas Eve. The resident came in and took the head wrap off. And there it was the site of the surgery. Perfect. Just like the first time. He tells us Max's doctor has appointments that morning and that all looks well and we can go. (I find out later that Max's doctor did show up that morning probably right as we were pulling out of the parking garage and I hate it that we missed him. grrrrrrrr) We pack up come home and take a nap (or at least I take a nap). We have Christmas festivities.

Max had no swelling or bruising other than where the electrodes were placed to monitor the facial nerve. One by his mouth on the left side and one in his eyebrow. But no swelling, or bruising anywhere else. (We seriously have THE BEST doctor in the world and I will stalk him if he ever leaves this area.) Here is the picture of him Christmas Eve. (Remember he got out of surgery at 2:30 pm the day before this picture and we had just gotten out of the hospital that morning.)

Max has done extremely well since the surgery. On the day of his post op appointment the doctor asked how he was doing. "Great, playing Speed Racer while standing on his head on the couch." He never did bruise or get any swelling and some of the steri strips have come off so I've taken a picture of him today, 14 days post op, this is his incision.

See!!!!!! You cannot even tell that he had surgery there!!!!! Isn't our doctor amazing????????? I've said it before, and I'll say it again. I LOVE OUR DOCTOR!!!!!

So we are fine, Max's stimulation is set for the 20th of January. His equipment is in and we are waiting for the day (and hoping that it doesn't snow, or have wintry mixes that day). I don't know what to expect this time around, since he is already hearing and I can't imagine that he is going to like the "new" ear at first with all of its chirps and bells and whatnot, til he gets used to it. But I know that he will end up LOVING it. Can you HEAR me?

Getting Blasted

2008-12-15T09:22:00.004-05:00

Well, I have been blasted twice for my "When does a deaf child stop being deaf?" Apparently people have a total misconception of my point, or miss it entirely.

For instance, I posted the above phrase in a place as a title to a post and people came back to let me know that their deaf child is always deaf. Yep, I know it, mine is too. However, in some things in life, I have found that decisions need to be made not because of his deafness, regarding his deafness or anything at all to do with deafness but based on the fact that he is a child. He is also a person and has thoughts and feelings like any other person and I need to respect his thoughts and feelings. He is still an almost 4 year old child so there are times when I feel that his deafness and his catching up in language and whatsoever take a back seat to him being a child and person first and foremost. I never want to forget that his deafness is not all there is about him. He has other qualities, perks, traits, and a personality that make up who he is. His being deaf is only 1 part of his whole makeup, of who he is.

I'm not willing to base everything on him being deaf and his cochlear implant. Nope, not going to happen. I base all decisions in his life regarding all factors in his life, not just that one aspect. I don't want to limit him in anyway, due to his hearing loss and I'm certainly not willing to damage other parts (psyche, personality, self-esteem, etc.) due to his hearing loss either. What's the point? What do we gain? How could he be better off if every single thing or decision is based on that fact alone? It's not who he is.......his deafness is not who he is. Don't get me wrong, I'm not shirking my duty when it comes to him using his implant to the best of his abilites, I'm not being lazy and sitting back. I drive him 76 miles one-way to school Monday through Friday. He gets pulled out for speech one-on-one 3 times a week. I bug his audiologist every 3 mos to check his maps. I sneak in AVT and language opportunities at every chance. But sometimes, he's just a boy who wants to play his Wii, and I let him.

So in my house, with my child, there are times when I base my decisions without any regard to him being deaf. They are based on his personality, age, and circumstance. Those times and those instances are when my son is not deaf, he's just a boy whom I love alot. Can you hear me?

The Countdown

2008-12-10T12:18:00.003-05:00

Well we've been missing due to the holiday; new baby, not ours THANK GOD but my brothers and injury, me with my knee. We got the go ahead a couple of weeks ago for Max's surgery on December 11th.

36 hours before surgery Max coughs, not unusual we have a woodstove blaring all the time, we live in the woods, things have been wet and snowy, it's winter. He also takes a 2 hour nap. He doesn't usually take naps, especially not when I want to take a nap.

22 hours before surgery Max gets up extremely early for him. I usually wake him up at 6:30 am for school but today, today he is up at 5:45 am. Silly, silly boy. He must be excited about his "new" ear and going to the birthday party at Build-A-Bear this afternoon.

23 hours before surgery on our way to school. Max is coughing. ALOT. Yikes! No snot though, doesn't sound rattley. I look in the rearview mirror at him. HE IS ASLEEP!!!!!! He never falls asleep on the way to school. This is not looking good.

21 hours before surgery We get to school and I wake Max up. His eyes look purpley underneath, hmmmmm, he looks pale too. We go into the school and Max's teacher see us. She notices that Max does not look well and comments, she also states that he seems "off". Uh yeah, like in getting sick. I cart Max next door to see the surgeon. Thank God it's Wednesday and the surgeon is in today.

20 hours before surgery Max gets his lungs checked, all clear despite the coughing. Max says his ear hurts and tells the doctor "yeah, it hurts". Doctor looks in ear, sees redness and Max's surgery for tomorrow is OFF!!!!!

Yep, it happened again. We went through this the 1st time around, except time wasn't of the essence that time and this time it is. Surgery is scheduled for December 23rd but having had time to think, think, think and discuss this with Max's dad, we're thinking "No". We don't want to make Max go through the surgery and possibly have a miserable Christmas. Just can't do it. So I will call the doctor's office and see if we cannot get it moved to the following week. If not, then as Max's doctor said this morning, "It's all in God's timing, he will get it in God's timing." And it is and will be. Can you hear me?

Do YOU Hear That?

2008-11-13T09:27:00.003-05:00

There's no tapping going on here. Instead I'm SCREAMING, THANK YOU GOD!!!!!!!!!!!!!! We got our insurance approval yesterday for Max's 2nd implant so the surgery set for December 2nd is ON!!!!!!!! I am extremely excited and relieved and soon to be nervous (this is a huge rollercoaster of emotions) but this is such a huge, huge blessing. I cannot wait for Max to hear with two ears, not just one, but two like everyone else. It's something that a lot of hearing people take for granted (not me anymore though). Now the only thing to do is choose the color. Last time we didn't choose, because I was so frazzled with his surgery and my daughter's seizures (and EEG's and MRI's and waiting for her diagnosis) that I didn't give any thought to the color of the processor and such. Bummer for us cause I would have like to have gone with a different color than beige. However, this time around I am on top of this and I'm choosing a different color, maybe black, gray, or blue. Does anyone wanna chime in on color selection? Gosh, I'm so excited. You can all expect a post (or three or four) as it gets closer on nervousness but I'M STILL FREAKING EXCITED!!!!!!!!!! Can you HEAR me?

Tap, Tap, Tap

2008-11-10T10:39:00.002-05:00

Tap, tap, tap, tap, tap.... do you hear me tapping? I am STILL waiting to hear whether insurance has approved our 2nd implant. The suspense has me hanging on the edge and I don't do well on the edge. I just can't understand what the hold up is. Actually I can't understand why insurance would have a problem with someone having two ears to begin with... other than they are run by the mafia and it's legalized theft but because we have sooo many issues, we have to have it. Anyway, if I'm not tapping my foot, I'm tapping a pencil or pen.

On another note, Max has had very dry lips so I bought him some chapstick of his very own. Well, apparently when you are just learning to speak chapstick is a very hard thing to say as it comes out of his mouth as "chashit". Crap! This reminds me so much of the e-mail I received a long time ago about it being the worst mother's day ever because she found out that her small son had been putting chapstick on the cat's butt! Apparently my son has read or heard of that e-mail because no matter how hard we practice trying to say it right, it still comes out as "chashit". I think I'll notify his SLP and see if she can get it to come out right.
Can you hear me?

BI-BI

2008-10-28T08:41:00.004-05:00

Remember my "Most Expensive Tube" post? Wellllll, God may have had a very good reason for that tube being a nuisance. Last week I got the hospital bill AND our EOB from insurance. We had met our deductible exactly. I really didn't think to much about it until yesterday morning, on our way to school (again that sporadic thinking which apparently sometimes is a good thing). It hit me. Our deductible for the year IS PAID, WE COULD GET ANOTHER IMPLANT!!!! So when Max had his appointment with his Dr. yesterday (have I mentioned we LOVE him?), I brought up that our deductible was paid and asked if he thought we could get Max a 2nd implant before the end of the year. Max's doctor said, "For him absolutely." I will do it on Christmas day if I have to. So he went out and gave all the instructions to his nurse and we have a surgery date of December 2nd. Whooo Hoooo! I'm thinking maybe, just maybe, we could be activated right before Christmas!!!!! Goodness, what a great Christmas present that would be, being able to hear out of both ears.

While I'm totally psyched at this turn of the most expensive tube, I'm still a little nervous about the whole surgery thing. For some reason, in my mind, which is obviously a little askew, it feels more like a cosmetic thing rather than a necessity. For his first surgery I knew that he had to have it to get sound and therefore gain speech. But this surgery, well, he's got sound, albeit in one ear, so it seems a little greedy to ask for the other one to be done. I do know that the benefits of the surgery far outweigh the trauma of surgery. For one, better localization, ease in noisy situations, better access to sound and a richer sound (that is once the new ear adjusts), and there's always the case if one has a failure, he's still able to have access to sound. A lot of parents have told me that their kids really seem to "take off" when they get the second ear. So I know that it is Max's best interest to get that 2nd ear. He's done so well with the first ear that I can't even begin to imagine how well he will do with the 2nd. I'm sure we'll have lots of exciting posts to add to our blog when we get this thing moving along.

The surgery, well you can bet that I'm going to be all freaked until it is over. I don't think that any mother can hand her child off knowing what is about to come, even if it is all good, without tears. But I will be praying for our 2nd miracle the whole time. Can you HEAR me?

Teaching Fun

2008-10-24T11:40:00.004-05:00

I can't begin to tell you the fun I have sometimes when I try to teach Max. Today we are missing school because Em is sick. So lunch is over and Max wants "cookies?" specifically "two cookies." So I try to hand him two chocolate chip cookies. He takes the first chocolate chip cookie but when I try to hand him the second cookie, Nope. He wants "black cookie".
Me: "Oh, you want an Oreo cookie too"
Me: "Oreo"
Max: "No, black"
Me: "yes, it's black but it's an Oreo cookie"
Max: "No, black cookie"
Me: "yes, but it's called an Oreo"
Max: (Holds up chocolate chip cookie) "What's that?"
Me: "Chocolate chip cookie"
Max: "No, brown"
Me: "It's a chocolate chip cookie that is brown yes"
Max (Holds up Oreo) "What's that?"
Me: "Oreo"
Max: "No, black"
Max: (Holding up cookies) "Black cookie.....brown cookie".

At this point he jumps/turns/runs away a la Spiderman.

Does this explain why I tend to ramble? Can you HEAR me?

Sporadic Thinking

2008-10-23T08:57:00.005-05:00

This morning I got to thinking, which is pretty scarey considering how sporadic I am. My thoughts bounce all over the place like rubber balls run amok in a concrete room . (I have to say that I'm bad at prayer also as I'll start out good but suddenly find myself thinking of my shopping list, what I need to do, or if I'll have enough yarn for my next project. I used to worry about my ADD prayers but decided that God created me therefore he already knew that I would do this, thus no more guilt, just an "I'm sorry" and effort to get back on track.)

On with my thinking this morning while driving Max to school. I started thinking about Max's IEP meeting coming up, of which I heard about through Max's teacher. I have not heard from our pre-school coordinator regarding this, just that they called his teacher for the meeting and gave some dates but nobody has called me about my dates. Hmmmmmmmmm. This led me to thinking about the progress Max has made in the 17 mos. he's had his implant. How many words he has, what consonants he's making consistently and which ones he's not, what he's doing regarding sentence structure (words, adjectives, verbs, etc.), how he's come really FAR, but we still have such a long, long, way to go. Wow, that state cop car passed by really fast. Wonder what's going on......I bet that's Officer __________. He must have dropped the kids off and got a call. Or maybe he's rushing back home to ____________ (his wife). She probably doesn't go to work until 9 or so......both of their kids are in school........I wonder what it's like to have to have two hearing kids? o.k. if Max was a typical child, I'd probably have a job that I'd be going to everyday. Hmmmmmmm, I wonder if that would be a good thing or bad thing? Em still might not get to participate in a lot of extra-curricular activities cause I might be working and still get home too late to take her. I'd still have all the stuff at home to do like laundry, bills, cleaning, cooking.... I wonder if the money from my job would pay for the daycare that Max would obviously have to go to. Oh, he could go to the christian pre-school, I wonder how much it is to go there?........ Wow, the lake with the sunrise is really pretty. The water looks like a big mirror. I wish it wouldn't rain, I really wanted to go to the zoo this weekend. Em's field trip coming up is to the zoo. Hmmmmmm, maybe I should keep Max out of school that day and take him to the zoo. Ugh, I wonder if I can handle a bunch of second graders AND Max at the zoo. Plus we won't be able to wander and talk about things as well if we're with the field trip. Maybe we could walk around by ourselves? Hmmmm, that will probably hurt Em's feelings if we wander by ourselves. Plus, should I really keep him out of school to go to the zoo? Maybe he'd be better off going to school that day then the zoo. Maybe Trent can take off that day and go with us and I can be with Em and her class and he can walk around the zoo with Max,.... nah that isn't going to work. He HAS TO work, we really need money..... Whoa, there's another state cop. Hmmmmm, that's two today and I haven't seen any for at least a week. Wonder what's going on............we've really met a lot of great people on this CI journey. I have made some great new friends....and look how much I've learned.......... I really want to get Max in the booth and get his maps checked. There are all different kinds of things that can affect the maps, growth spurts (check), surgery (check), been 7 mos since we've had one (check). Hey, there's another state cop, what in the world.........I really need to get Em a warmer jacket before next week. It's really going to get cold next week, I wonder where I can get one fairly cheap but reasonable, I can't go look until tomorrow though, payday is tomorrow. I hope our school system doesn't try to give me grief about Max continuing at the oral/deaf school. I'm sure they won't, he's made A LOT of progress, but what if they think that's enough. No, it's not nearly enough....Hey cool, there's the McCain/Palin bus....I wonder if one of them (or both) of them are on that bus? That's why I've been seeing all the state cops this morning. They're trying to stay a certain distance around the bus for protection - escorting from afar. That's probably why.......Geez, Obama freaks me out.....where did all that money come from for his campaign recently? Especially since we're IN A RECESSION. That's a lot of money....who has that kind of money right now? and why are they giving him so much? That health care thing, that scares me too. What if they do socialize healthcare here? I hate to think of quotas on surgeries and procedures because of money. What if he's elected and they run out of money and won't pay anymore for Max's equipment needs? What if no second CI? No batteries, no mic covers, no coils or other stuff when the warranty runs out? Crap!!!!! What if they decide he's defective therefore the new healthcare system isn't going to take care of him and I don't have the money because the economy is whacked? OMG, what if they decide he isn't even worth it? Nah, they wouldn't do that. I don't know, it's well known that he allowed babies to die and didn't vote to keep them alive, he's also for killing innocent unborn children. Ooooh this is tooo much....Geez, 20 minutes til we get to the school. Uh oh, Max is asleep (weird, he never does this). He didn't eat much yesterday either.

Finally after all of that I turned on my CD player to STOP the sporadic thinking and just focus on nothing but musical notes. Except I need to remember to put more chapstick on Max. Can you HEAR me?

Disclaimer: Do NOT send me comments regarding your political views and why yours are right and mine might be wrong. You will be wasting your time and your energy on someone who doesn't particularly care who you are voting for and why. This is my blog and I am right on this blog. If you want to post your views then do so on your own blog.

MIA

2008-10-16T16:48:00.005-05:00

Yeah, we've been missing in action this week. This week has been crazzzzyyyy on the merry-go-round. Our daddy's been gone a lot, Em had a nuerologist appt., I go get my mammies grammied tomorrow (OUCH), Max sees his ENT on Monday, I was reading Val's book. HOWEVER, we hit a new milestone this week. (I really wish I wasn't such a flake and could drive AND get this on video. SMILE) Max has been putting together 5 word sentences. He also had a very loooonnnnnng discussion with me yesterday afternoon (in the car on the way home) about Britney (school friend) falling down outside, but she didn't cry. He has also started arguing with me in the car. Nice huh? But this week, he really has pumped it up a bit. (Which is a good thing cause you know I hate plateau's and start worrying about what I have or haven't done that has caused it.)

Oh, and as for hearing in the car, well I've been a bit amazed at that too this week. In the Spiderman 2 movie the phone rings and the guy says "hello" (don't ask me who, cause I never see it since I'm battling the roadways) but today the phone rang and Max said "hello" before the guy did. AND THEN one of the Ninja Turtles (again movie) burps and Max said "excuse me" (the turtle however does not say this, obviously my son is concerned regarding their lack of manners). Hello? This kinda rocks when you think of all the excess noise in the car; the sound of the road under our tires at 75 mph, possible semi's next to us, occasional window going down and back up so I can get fresh air (this is because I left my window down and it kinda sprinkled rain in the car and now it stinks). I'm just completely blown away by my "deaf" kid. Can you HEAR me?

101 + 1 MORE

2008-10-09T11:37:00.004-05:00
Yep, that's how many ways I can find to torture myself, make myself feel like crap AND add guilt cause honestly I can't think of any reasons I should feel guilt (NOT).

I told myself that I was not going to blog about this. BUT, after talking (ok whining) to a few friends (acquaintences) I have decided that I actually LIKE inflicting pain upon myself. In fact, I enjoy inflicting pain only on myself. So, in effort to continue the trend of making myself miserable, I am going to announce how mortified I am to be announcing a huge blunder I have made. I am however, looking at it like a public awareness announcement. Not only how NOT to be a "bad mommy", but how NOT to jump to conclusions that someone is specifically a "bad mommy."

O.k., here goes. All seemed well until this weekend when I noticed a little boy. There wasn't anything specific about this little boy, other than he was drinking out of a pop bottle. Gee, you all see that a million times a day, so why has that caused such an uproar in my life?

Well, you see, Max still drinks from this:

Well, it's like that, but not quite like that. AND not only that (noooooo sireeee cause that ain't enough) but he still has this as well:

See, when I saw that little boy drink from the pop bottle I realized that Max would never do that. THEN I realized that Max doesn't drink out of a cup. THENNNN I realized that Max is 3 mos. from turning 4! Holy Crap!!!! How did this happen? My daughter drank out of a cup at 6 mos. I know that Max has drank out of cup, I just can't remember if he's done so since we found out he was deaf. I THINK that that is one of the problems. Max was diagnosed at 17 mos., and I have spent all that time since then just trying to get him implanted, trying to get him to speak, driving millions of miles for school and appointments, dealing with Em's epilepsy, the bankruptcy and I JUST LOST TRACK OF TIME!!! Now he is my baby, and absolutely the last child I'll be having, but still drinking out of a sippy cup AND a paci when he's almost 4! Oye! So I'm feeling guilt. I'm feeling like crap. Honestly, I really, truly, just did not realize it. I've been blind, but now I can see, and I really need to remedy this. You can bet I'll be pushing the cup and letting the dog get the paci (she loves them too).

So I guess if you've made it through all of my rambling, if you see a child with a pacifier and/or a sippy cup, please don't berate the parent or the child. Please don't think in your mind, "Ugh, look at that child. He/She is WAY too old for that. That mother should be ashamed of herself." You DON'T know what they've been through, where they've been. It might be that the mother is so overwhelmed with "other" things that she doesn't even realize that the one calling her mommy is a "child" and no longer "her baby". She is so overwhelmed with getting other needs met that time and ages has skipped her mind and when it punches her in the gut, she probably is mortified, just as I am.

Max, my sweetie, I am so sorry that I have let you down this way. I promise I will try to remember that you are going to grow up and not be my sweet little baby forever and sometimes I'm going to have to push you out of the nest so you can fly, even though I really don't want to. Can you HEAR me?

No, not that......

2008-10-05T06:47:00.006-05:00

I think when most of us hearing parents find out that are children have a hearing loss, besides appearing deaf ourselves, "What?", "What did you say?", we also suddenly become stupid, "What's that?, "What does that mean?", "What IS deaf?" I know that I did. I remember trying to breathe in/out and asking specifically, "What does that mean?" "How deaf is deaf?" Of course when they start explaining the audiogram and the results I was basically a bobble-head. I nodded my head in all the appropriate pauses and left still not knowing a thing other than my baby couldn't hear. As time went on, I learned a little bit more. I learned that the first ABR was read wrong (thanks to the audiologist at Riley's for that little snafu) and that Max did not have Moderate to Severe hearing loss but in fact had Severe Hearing Loss. I eventually learned how to read the audiogram and about the speech banana and how my son was never going to get all the sounds on that speech banana with hearing aids. So we moved on to the cochlear implant. But there is ONE thing I DID KNOW and the very thought scared me.

I know that when I found out, a lot of things went through my mind. I could almost picture myself in my brain walking down a long hallway (appropriately labeled "Deaf Hall") with doors lined up on both sides. The doors had little titles on the outside which kind of gave you a clue as to what's inside but didn't. I would open a door go in look around and feel it out. One door would be "Sign". I'd go in, explore in my mind signing and ASL, how our family could learn this, we could have our own secret language, how am I going to do this and drive, eat, wash dishes, ok. we can work this out. The next little door would be "Ridicule". I have to tell you that was a hard, cold room and I didn't like it. I tried like heck not to stay in there to long. But of course, being human and I guess a little sadistic in nature, I'd go in there again and again, like a rubbernecker at a car wreck. Don't want to see but dang, just can't help it and then when I'm done feeling raw, exposed and like crap. There were some other dark and scary doors in there,in my mind. But there was one door that scared me the most and still does. I can't even bring myself to actually put a "sign" on this door, I skirt as far away as possible from this door, but this door is different, it pops up in front of me, out of nowhere and looms begging me to come in and see what I can see. I know better than this, but yet it is there and it is real. I put that door out of my mind but this past week it jumped up in front of me again. I found this blog on "Deaf Village", http://deafness.about.com/b/2008/09/28/more-on-sexual-abuse-at-deaf-schools.htm Obviously, I saw it, read it, and it scared me so far down to my bones that I had to mull it over in my mind before I could blog about it. I think that THIS is one of the things that scares a hearing parent of a deaf child more than anything. I know it does me.

In my BC life (before children) I was a paralegal. I know that even hearing children are susceptible to these monsters that prey on children. I know how devastating it is for the child, the family. One of the reasons that I stopped being a paralegal when I was 8 mos. pregnant with my daughter is there was NO WAY I could work with someone who represented a child moslester/pedaphile. The stakes were too high in that little mental challenge. I didn't do well with it before I was pregnant and well, knowing that I was having a girl, that was it. Besides that I was sick of seeing the same people over and over, divorces gone wild and all the other stuff people do to one another. But a deaf child, this goes way beyond what I can comprehend.

When I found out Max was deaf, I did not know what it meant, what was going to happen, if he would have to go to the residential deaf school in our state, if he could go to our school and all these fears jumped out. The thought of sending my child to a residential school 2 1/2 hours a way at 5 years old literally made me want to break down right then and there. I was already attached to him, how could I possibly send him away to live for the week and only see him on weekends and holidays?????!!!!! I still can't bear that thought, that he might choose to go to the Deaf School at 16 or so. I don't want it and pray constantly that he stays with me. I can't even bear the thought of either of my children leaving for college and cried during the movie "College Road Trip". But the above blog is frigtening and not the first I had heard of this. Apparently it happens quite frequently and there is actually a book about it. I read it, because again I'm sick that way and obviously like to torture myself. I was miserable for months after reading it because I know that it is a very real threat to deaf kids. I also know that the threat just isn't at a residential deaf school, it's everywhere, just more prevalent at residential schools for the deaf.

This is just ONE of the horribly scary thoughts that goes through our minds when we find out our child is deaf. There are a WHOLE LOT OF OTHER scary doors we have to work through, BUT this is just one of the reasons we chose to have Max get an implant.
Can you HEAR me?

Now this.......just confuses me......

2008-10-02T10:45:00.001-05:00

and leaves me with no words.

RANT......

2008-10-01T11:00:00.004-05:00

I'm sorry, I just have to rant for a moment. You can expect these periodically, just ask my husband. Today it is about the drivers on the road.

Because Max goes to a special school with other special kids, we have a drive to get there. Normally, our drive is an hour and 10 minutes. Because of the construction though, it has become and hour and 20-25 minutes. This gives me a lot of time to offer my expertise on some the following drivers and RANT about them.

Now, you will notice in the picture above the car that is driving way off to the right.....this is actually a positive picture because not two minutes earlier that car was way off to the right on the shoulder as if to pass the truck in front of it. What you can't see is that the right shoulder is laden with potholes that would literally send you to China or pieces of tires that could shoot you to the moon! I'm not kidding. Luckily the person in front of me decided that they were not going to attempt losing time going to China or the moon (because they were in such hurry to get somewhere else) and decided to ride-it-out behind the truck. But these people caused me to reflect on all the nonsense I see everyday and the things that burn me up on the road.

BUTT KISSERS
These people believe that it is absolutely necessary to kiss the tailpipe of my car. (which is what made me take the picture of the above aforementioned vehicle as this driver did). They really want to push me ahead because they are running late and will ride so closely to the back of my car that I can see the bugs in their grill! To these people I say, "WOULD YOU PLEASE BACK OFF! YOU CAN'T MAKE ME GO ANY FASTER, I CAN ONLY MOVE AS FAST AS WHO'S IN FRONT OF ME, I'M NOT GETTING OUT OF THE WAY, DO YOU FOLLOW JESUS THAT CLOSELY?" Seriously, back it off. I do not want you smacking into me when I have to stop for "Virtual Racer" or "Yakkers". I have precious cargo in the backseat, I don't want to be on the roads either so take deep breaths, relax, go around, just GET OFF MY A$$!

VIRTUAL/REALITY RACER
These people believe that they are in a race. They are driving 90+ miles an hour and will cross three or four lanes of traffic with no signal and driving in an out of vehicles. I find it extremely amazing and very scarey. To these people I say, "You are not playing Nintendo, X Box, Wii, Nintendo DS, or any other virtual game. You are in REAL LIFE, driving a REAL VEHICLE, which probably weighs anywhere from 500 to 1,000 lbs (maybe more as I'm no expert on car poundage). If you have an accident a little cloud is not going to put you and what you hit back on the road for two more tries. There are real people, with real lives and real families on these road with you. Please, for the love of God, slow down and use your blinkers. I don't want to be in a pile-up because you thought you were Dale Ernhardt on the expressway. You are NOT that person, you are an idiot risking everyone else's life because you can easily make a huge mistake that WILL impact everyone that is on the road with you.

YAKKERS
Honestly, these people bug me the most. Probably because I encounter them not only on the interstate but everywhere I go. Can you figure out who they are? If you guessed the people who are giving their autobiography on the their cell phone you are correct. These aren't people who have got a call with some important info and then hang up. These are people that decide to call everyone and anyone while they are driving. You can see that some of them must be giving their autobiography because they are in for the long haul with that phone. It is at their ear, they are laid back. They are not getting off anytime soon. (I actually saw a yakker in for the long haul and picking his nose while driving, how did he do that?) Why do these people bug me so much? Because they slow down, they speed up, they veer to the right, they veer to the left, they make me mad with their inconsistencies in speed variations and in turn I make them mad because they will be traveling along at one speed, something truly amazing interesting or striking happens in their conversation and they slow down so their brain can process what they are hearing (because a brain can't keep up driving speed and the juicy morsal of gossip they must be getting), then they discover they are 10 mph down from where they were driving, notice that I'm close to their butt and look like a butt kisser, get irritated at me - the butt kisser, and speed up again. They then hear other little snippets that are funny, again brain can't compensate so it's off to the left or right. Oh and don't forget that you are so engrossed in your conversation that you suddenly realize that you have come to your turn so you dang near stop right there wihtout any warning or a TURN SIGNAL!!!!!!!! (I realize that you can't possibly steer, use your turn signal and TALK ON THE PHONE!) YOU PEOPLE FREAKING IRRITATE THE CRAP OUT OF ME. I am scared to pass you with all your veering, I don't know what speed to drive and you really pi$$ me off when you make me late. If you have to talk on the phone, if that is when you really need to have that long conversation with whomever than GET A BLUETOOTH! There are states that have passed a law that you have to have a Bluetooth if you are going to drive, that you cannot be holding a cell phone. I wish they'd pass that law here. I'd call all y'all in.

WHAT THE HECK ARE YOU DRIVING UNDER
These people, I do not know exactly what their problem is. You're all over the place like "the yakker" you just don't have a cell phone in your hand. You freak me out and I pray that you turn off soon. (And I seriously consider calling 911).

YIELDERS
Who is a yielder? These are people who specifically see me coming at the speed limit or 5 mph above. (I heard that cops are not likely to pull you over if you are only 5 mph above; however, this has not been proven so do so at your own risk.) They are on a sidestreet or driveway and, you guessed it, PULL-OUT! You have made me slow down, way down. It's not an area where the law says I have to slow down, it's just your own petty selfishness thinking that where you are going is way more important than where I'm trying to go (despite the fact that I possibly have been in the car for awhile) AND I was on the road first. Oh and I REALLY LOVE IT when you drive less than a mile and turn in somewhere else.

NOSERS

Out of the whole bunch above, you guys really make me feel like crap AND THEN make me flip out. I'm driving along, on the road I WAS ON FIRST, and I'm coming to a stoplight or whatever and you stick the nose of your vehicle out, expecting moi to let you in. Now that's fine and dandy and I'm always willing to show a random act of kindness and let people in front of me etc. It's just that sometimes I too am in a hurry and I didn't realize that you wanted out and then when you nose out, and I'm smack in front of you and you give me that look and get mad at me for not noticing that you were wanting out and not letting you out well, I gotta say, you put me through a little emotional test. You are flinging your arms and obviously having a little rant of your own in your vehicle directed towards me, I feel bad, but seriously, I'm in a hurry, was not thinking, and did not see you specifically. But you know what? After 5 minutes of feeling bad, your attitude starts to become contagious and I am now flippin mad at you because I don't need YOU making me feel bad because I didn't let YOU out, when where I'm going is just as important and I'm in hurry, and I was on the road first and dammit I don't have to LET YOU OUT! To you I say, if you DON'T EXPECT IT YOU WON'T BE FREAKIN DISAPPOINTED!!!!! You got yourself in there, get out when you can and don't rely on someone else to let you out. And if someone lets you out, be freakin happy.

So to all you freaks on the road. Bite me. I'm sick of you causing all the problems and blaming it on me. Stop tailgating, quit driving like you're in Super Mario Kart, get off the phone and drive.
Can you HEAR me?

It's all about..........the girl

2008-09-30T11:39:00.004-05:00

Emily is on the right in the brown dress, next to the winner pffffttt.

Today it's all about my Diva, my beautiful 7.5 year old daughter. The one who insisted in participating in our annual Orange County Pumpking Festival Little Miss Pageant. Again. Ugggggghhhhhhhh. I hate pageants. I did not participate in pageants when I was younger. I was asked, but never did it. I hate pageants and everything that they stand for. I hate that fact that girls are paraded in front of people who know nothing about them or their background (except for silly questions like what's your favorite food, sports, hobbies, strategy to pick your nose? seriously) and judge them on a 3 minute interview and how they look in a dress. It's worse then a cow auction at the local county fair in my opinion cause at least you don't actually have to spend any money on the cow, just wash it up and get the crap off of it. Pageants, they are a rip. AND I hate this particulor pageant. They lure these little girls in and squeeze the parents out of their paychecks. First you have to find a sponsor to pay the $25.00 entrance fee. Why? If you want the girls why do they have to pay? If no one paid then there wouldn't be any pageants (which is what I really want). It seems like if you want to have a pageant you should pay the girls to come on in so you can parade them around on stage. Next, the clothing. O.k. so they say no pageant dresses, wear a dress you would wear to church. Yeah, I fell for that last year. My daughter wore a dress that she could have worn to church. Everyone else wore a pageant dress. Maybe they wear those pageant dresses to their church, but at our church they're lucky if we're not in jeans, shorts or the way it is some Sundays --- PAJAMAS! Shouldn't they have gotten points off for not following the rules? Apparently not, since last year's winner had on a PAGEANT DRESS. Next they hit you for the "Interview Outfit". The outfit is to be a nice shirt and pants that you would wear to church. Again, what are people wearing to church and what churches are they wearing them to? I fell for that too last year. Every little girl was decked out like she was in a fashion magazine spread-out for Limited Too or Justice for Girls. The week before the pageant, we have rehearsal. This is where they teach the girls, when and where they are to walk out on stage. This is a joke because.... No. 1) It's a whole 7 days before the pageant. No. 2)These girls are 6yrs. through 8 yrs. No. 3)THEY WILL NOT REMEMBER. They also give the girls envelopes of tickets to sell, 10 tickets for $5.00, which the parents will end up shelling out the $50.00 for because they won't be able to get friends and family members to ACTUALLY commit to going to the pageant and will have them on hand just in case. They will also not be able to get to those family members during the week because they are so busy with their own lives that the pageant takes a backseat. The day of the pageant the girls are instructed to be at the auditorium for interviews at 1:00 pm. This will of course be on a first come first serve basis. You will go early and realize that everyone else is there as well and then they decide to do it by number of the contestant. Your child's number is 15 (out of 17 girls), so you hunker down for the long haul. I might add that they've got the auditorium so freaking cold in that place that you need to wear a coat, pants, legwarmers, hat and gloves despite it being 80 something outside and now the 2 hours that you've spent on hair "putting lovely ringlets in" has fallen and looks like nothing but a mess. They then will do the interview which lasts a total of 5 minutes. Are you freaking kidding me? You can honestly tell who is best equipped to be "the winner" after 5 minutes? By the time the interview is done it is 3:00 pm and you haul butt back home to try and find something to eat while changing into "pageant dress" without getting anything on the pageant dress. Last year I made the mistake of trying to curl the hair into "lovely ringlets" again. This year, I pulled out the flat-iron. God gave you straight hair that won't hold a curl (to save your pageant life) you're going with what he gave you which is straight hair. Besides, everyone else will have curls so you'll be different, stand out with your beautiful straight hair. You have enough time to slam down a sandwich and you have to go back, FOR PICTURES WHICH YOU HAVE TO PAY FOR!!!! They want you there at 4:00 pm for pictures. Why didn't they do that while we were waiting for the interview all afternoon. Seems like it would make sense to me. Get picture right before you walk into the interview, not after, just in case you go in shock from one of the questions they throw at you. So we're there at 4 pm. the first year, we had to wait in a line for 45 minutes for pictures didn't get out of that line until 4:55 pm and had to be there at 5:15 pm so we just stayed. This year, got there at 4:30 pm, done with picture by 4:45 pm but STILL had to just stay there. Why is this? Why can't we get it right. So o.k., we've been there pretty much all day, had nothing to eat and we wait. At 5:30 pm they finally come to get her until the pageant starts at 6:00 pm. By then I am hungry, sick of being there and frozen. I go wait in line to get into the auditorium (cause they have since locked it up) for THE PAGEANT. Half the town shows up and is waiting in line for the pageant. Hubby and family have NOT shown up for the pageant. They are ready to unlock the doors and let the stampede in and wouldn't you know it, the parent's of the girls in the pageant have to fight with non-pageants to get a seat. See, now that really bites me. You would think that having a child in the pageant you would get front row seating or in the very least 2nd or 3rd row seating, but noooooo, you have to fight the throng and then sit in the cold auditorium not being able to go to the bathroom until someone in your family finally shows up to save your seats from being stolen from under you. The pageant starts and the parade begins. The little girls come out, most forget when they are supposed to move, where they are to stand, when they are to leave. You go through the bigger girls, the big girls and the biggest girls. They claim to have a 15 minute intermission while they count the votes, you look at your watch, it is 7:30 pm, it has been way longer than 15 minutes. You wonder if you will ever get out of there, you wonder what you will feed your family. They finally bring everyone back in to announce the winners. You've got your camera ready.....you know that this is it.........they announce Miss Photogenic..........that's o.k. you don't really care about that category anyway.....they announce 2nd runner up...........wow you're really going to pull this off and win.........they announce 1st runner up..........whooo hoooo goin for the gold.............they annnounce.....................................the name of someone else's child. Oh crap. The letdown. The heartbreak. The "I can't freakin believe this". The "What the heck?" You see your daughter continue to smile and clap. When it's all over everyone moves to go home.... you have to wait so they can take group pictures of the winners with the girls. WHAT? I don't want to sit here and wait for pictures when my daughter didn't win. Just take your freakin picture of your freaking winner and let us go home, let me soothe the pain she must be feeling, the hurt, the disappointment. I finally get my child. As we're walking out someone says to her, "You look gorgeous". We get outside. I ask her if she is disappointed, a little but wait til I see the cool stuff she got for participating. Hmmmm, she does not see upset at all. Again before bed, I remind her that she is still God's princess and that is all that matters and she is MINE. She tells me that she's going to be in it next year (friggin why? Why? WHY?), she's going to keep being in it until she wins. She thinks that next year she'll wear a green or black dress. I kiss her good-night. At least if I've taught her nothing else, she's not going to quit, she's in it to win it. Man I love her.
Can you HEAR me?

Something Different

2008-09-24T15:41:00.010-05:00

Because this came up on the CI Circle AND I had actually thought about blogging about this very subject, today's topic is what hubby and I have deemed "The Look".

I forget that Max even wears an implant most of the time (other than putting it on in the morning and taking it off at bed time) until I see "The Look" register across someone's face. I always realize when someone notices Max's implant (he only has one so it may take some time to register). They get this look on their face and I can actually read their thoughts, "oh? I wonder what that is? is it an ipod? hmmm it's flashing? should I ask? will I sound like an idiot? will they be offended?" I can see all of these questions and emotions on their face and I'll usually take that time to tell them about the implant and "miracle" we get every single day.

I've had people ask what he's listening to, point out that his ear is flashing (only to be mortified when I tell them what it is and what it's for), and one lady just could NOT stop staring at it in the movie theatre (that red light does flash brightly in the dark). I'm pretty sure she was hypnotized by that light flashing quickly since she could NOT stop staring and can only imagine her telling her friends and family she couldn't remember what the movie was about maybe something to do with flashing lights? One time we were invited to a friend's church and a woman came up and started talking to my husband and I and she was yakking away (about her 20 yrs of christianity) and then noticed Max's implant and again it was "The Look". You could see her face change as if she had put on a mask, or taken one off, whichever you prefer. She actually told us that we should take Max up to the preacher and have him pray for Max!!!!!! I was so fired up over that I could have slapped her in the name of Jesus myself!!!!! I can pray to God myself thank-you-very-much, and he has answered my prayers, my son can hear and speak. ooohhhhhhhhhh I was hot.

Most kids notice (again the cool lights) and I've noticed that some kids are better than others. Some will ask and once they know it doesn't faze them in the slightest. I have noticed that middle school age kids, 3rd, 4th, 5th, and 6th usually are worse, as they don't ask but point and whisper to one another about it. This caused a meltdown for me at vacation bible school this summer when I took Max and left him, only to think of the older kids and their pointing and whispering which caused me to start crying and freak-out and insist to my husband that I had to go back because I had thrown our son to the wolves. However, Max was fine and actually a 3rd grade boy had be-friended him. Usually Jr. and Sr. High school kids will ask and it doesn't faze them either. Sometimes someone will come up and ask when Max got implanted and they know all about the implant or someone else with an implant and that is kinda cool too. Get to meet people you wouldn't have otherwise talked to.

The best thing about going to the AG Bell Convention this summer was that no one even thinks twice about it. Don't have to explain, don't get "the look". Oh, and there's lots of other kids there with things hanging on their heads and ears.

So yeah, it is "different" for others (obviously not for us anymore though) and it is great opportunity to educate them. You never know, someone you educate may be really glad that they talked to you one day if they face hearing loss or a loved one, young or old is diagnosed. Can you HEAR me?

Singing......la..la..la...la...la...

2008-09-23T09:06:00.006-05:00
Ha! Don't tell me a deaf kid can't sing. Here is a video of my son trying to sing to the High School Musical Wii game. It absolutely does not matter that he doesn't know the words, or that he is off key. He is singing!!!! I have to give him a lot of credit. For one thing, he is singing the hardest song on the game (notice the captions in the background) I can't even add the captions to this video because it's a nonsense song. He got a C from the Wii and I honestly can tell you that I probably would not have gotten a better score.

Can you HEAR me?

The MOST Expensive Tube

2008-09-20T08:11:00.003-05:00
When Max was 14 mos. old he got tubes in his ears. This is how the whole process with Max's not speaking any words, not turning his head when I called his name got started. It seemed that he could hear, but he just wouldn't talk or turn when I called his name. I remember being scared it was something on the autism spectrum, not full out autism because he was sociable other than not talking and not responding to auditory commands or his name.
So we go to an ENT at a local hospital and he says "Yes, his ears are full of fluid, that is why he is not talking, it's as if he's hearing under water." So at 14 mos. Max gets tubes in his ears. I'm guessing that the surgery for the tubes cost me around $4,000-$5,000. I'd like to give you an actual figure and not a guesstimate, but a lot has happened since this time and honestly my brain cannot possibly keep up with it all. But I'm going to assume this is a fairly good guesstimate.
Of course, the tubes don't seem to be doing the trick, he still doesn't respond and still makes no attempt to say anything. The story from there is like a tricky twisty maze, you go in one direction only to run smack into a dead-in and have to turn around try another and hope you get out of the darn thing FAST, because you're tired, thirsty and it really isn't fun anymore. So I guess I don't have to tell you it wasn't the fluid in his ears since he now has a cochlear implant. You can pretty much guess that it was a full blown hearing loss that somehow happened either after he was born, OR the hospital messed up the newborn screening to begin with.

In the middle of August, Max's first week of school I noticed that he was digging in his left ear ALOT. Everytime I cleaned that left ear I noticed that the wax or the end of the q-tip looked a little bloody. Hmmmmmmmm, ever trying to make things less severe, I assumed that he had possibly gotten a bug bite or something just right in the ear canal and scratched it. After watching him in the observation room one day during school, he really was going after that left ear. Even his teacher looked in there. That night I again cleaned it with a q-tip and sure enough that was blood. So the next day while he was at school, I asked his audiologist if she could possibly go check his ear since he keeps sticking his finger in there. She told me that he definitely had something going on in there and needed to be seen before Monday when his ENT surgeon that put the implant in (Not to be confused with our local ENT idiot) could look at it. Still pretty sure that it was bug bite I called our "papaw/doctor" for a look on Friday. He looked and was pretty shocked to find that Max had a very bad infection in the outer part of the ear, basically in the canal. Max was put on antibiotics and antibiotic ear drops. This was probably at a cost to us of $115.00. He stated that he did want Max's ENT to look at it since it was really bad and with him being an expert and all with the ears. So on Monday I take Max over to his ENT and he exclaims that yes it is really infected but everything we are doing is good so bring him back over in two weeks. That appointment cost me $54.56 (insurance will break them down and pay a small portion). So we take all the meds, ear drops, and papaw looks at it again and says, "Geez, I think it's that tube that is infected. Looks like it might have scar tissue or skin on it." O.k. STOP. Let's do a little rewind here. Tubes were put in, right tube was removed during a good ear cleaning while sedated for an ABR. Left tube fell out whatever they put it in, ear drum, but never fell out of the ear. Now back to The MOST Expensive Tube. He suggests that I take him back to Max's ENT and have him take a lookey-loo. ENT looks and says, "yes, it looks like that is what is going on, still a little inflamed, we're going to have to schedule surgery to remove it." NOOOOOOOOO, this cannot be. I have had medical bills out the wazoo with his cochlear implant surgery, getting to that surgery, my daughter's seizures, EEG's, MRI's, our sawmill went bellyup dead and we filed bankruptcy in April of this year. I have no money, no way to get any money, we are living on the edge, my deductible is $3,000.00, the job Trent's been working at is going belly up as well, he's doing odd jobs which pays odd amounts. NOOOOOOOOOOO. So surgery is scheduled. During that time I pray, I pray hard. I pray for that tube to fall out, go away, disappear. Oh and I get another bill for $54.56. Surgery day: Thursday 9/18. We were supposed to see ENT on Monday but because of the hurricane winds that wiped out S. Indiana and KY, there is no electricity anywhere so no appointment with ENT(savings: $54.56). On Thursday we get to the hospital at 9:30 am. We go through all the rigamaro and with each person I say, I'm still holding out hope that it's fallen out or can be taken out without this surgery. They all look at me like "yeah right." Just as the nurse was bringing the "happy juice" to make Max happy to be going out, I ask if the ENT could just take one more look and make sure that he can't get it out without surgery. ENT comes in, looks, and says I think we can get it. It looks like a little ball of wax blocking it. So surgery is "off". Thank goodness. I'm so happy, I'm sure we'll have to pay something but probably not $3,000.00. ENT gets telescope from operating room and he and Trent and two nurses hold Max while he tries to get the tube, and I cower outside because I don't think I can bear this. After about 5 hours, no not really more like 5 minutes but dang it felt like forever, they come out with, can't get it. It's attached. Oh holy crap. Surgery is back on they give us the "happy juice" for Max. At about 1:00 - 1:30 they come and take Max to his tube removal surgery. I cry when they take him, as usual. I've been through him being sedated or surgery 6 times now, you think I could get over that, but I can't. We wait for him to get out, only 10 - 15 little minutes, it's just a little surgery you know. Max comes out and he is furiously mad, cries, tries to nap for a minute, remembers he was violated and cries some more. ENT says that it was attached to the ear drum still, tissue on it is being sent off to biopsy, hole should close on it's own in ear drum, and gave us antibiotic drops to start putting in on day 5. Max was fine that night, riding his bike like nothing happened. Happy as a lark. I'm happy that it's out, til I get the bill I'm sure. This tube, a little bitty green thing, is the MOST Expensive Tube. Probably around $8,000-$9,000 when it's all said and done. I wish I could have had it. I'd frame it.
Can you HEAR me?

Just when You think......

2008-09-11T09:49:00.002-05:00
I could do a lot of those. Just when you think......you've got it all figured out, you're done, you're in the clear, you're something,...........it comes back and smacks you square in the face like a boomerang. Things have been going very well with Max and his speech. Oh sure there are times when I'm completely clueless as to what he's talking about, I just nod and go on, or say o.k. and go on (gotta stop that one though because I can see us getting into a lot of trouble) or I say really........ and hope that he says something else that gives me a clue as to what specifically he is talking about. So anyway, Max is doing really well, has over 200 words, picks up new ones daily (or every other day) starting to put more consonants in, following two and three step directions, making his own little two or three word combo sentences. I'm feeling pretty good and confident about all this again. (Let me say there are peaks and valleys in my confidence level in where Max is at, where he's going and how long it's going to take to get there.) So Monday Max gets home and lays on the couch, won't get up and I take his temp and it is 102!!!! O.k. so we start the piggy back of Tylenol and Ibuprofen. Tuesday morning he still has a fever of 99.9 or so and it goes up to 99.9 and down to 99.1 (I know not technically a fever but still, not your average.) So I start asking Max does your ear hurt? No. Does your throat hurt? Funny look and then a "no". And I realize that he has no idea what his throat is!!!!! He knows ears, I mean honestly how could he not since his have been poked and prodded and discussed more than any other topic in our house. He knows nose, arms, legs, eyes, hair, head, feet, hands, toes, fingers, knee, belly but throat..... that is a new one. And the trick is getting him to figure it out. So when he went and got it checked and yes his throat was red, I tried to explain where his throat was. So, thus goes the confidence level again, swinging on the downside as I realize just how much more he has to learn just with normal bodily functions. Sigh....
Can you hear me?

Some things are easy.......

2008-09-02T12:13:00.005-05:00

It's amazes me how quickly my son can pick up some things. For instance, this weekend we took a trip to our "local" Wal-Mart, not something that we get to do very often anymore since Max has started school and we have such a long drive to get to school. Passing the gaming section, Max ran over and started to play a Playstation game. As if a trip to Wal-Mart isn't long enough. It was so easy for him to figure out how to move around and play the game, especially since we have a Wii and not a Playstation so he was unfamiliar with the control pad; however, it is so hard to get this language going. Don't get me wrong, Max is doing fantastic. He's got well over 200 words and puts 2-3 word combinations together. It's just that it takes so much time and so much hard work (and a lot of ingenuity, yakking, driving, gas, and time on my part ":c). I don't think that people realize all the hard work and effort that it takes for Max to hear and speak. Most people think that we turn on the implant and vwala! Hi Mom!! They don't realize that he has to learn to listen, learn the word or sound and meaning, and then practice, practice, practice. If only Phonetic discernment could come as easily as a Playstation game.

http://s9.photobucket.com/albums/a66/brakim1/?action=view&current=Ridin.flv
Sorry can't get the video in, you have to go directly to it.

Speaking of easy, my daughter has finally taken off the training wheels on her bike. I'm surprised that it only took a "few" spills to be able to do this since we have a gravel drive rather than concrete or asphalt. When I look at her at 7.5 years old, I'm astounded at how big she is but yet still yearn for the baby that she was. They really do grow up too fast.

Can you "hear" me?

"No School?!?!"

2008-08-19T09:09:00.004-05:00
Max has decided that he "HATES" school. He started school last Tuesday. He was scheduled to go to school from 9:00 am to 3:45 pm. We were getting up and leaving the house at 7:30 and getting home at 5:30 pm with the drive. (Which is longer than usual due to construction.) By the third day he was screaming and trying to get away from me and run out the door at the school. He also didn't have a BM since the Monday before school started. On Thursday I decided that the hours were way too much for a 3.5 year old. He couldn't handle it (I was having a hard time myself) so I cut him back to leaving at 2:00 and getting home at 3:30 pm. On Thursday, I also had the audiologist come and look in his left ear, since I had found blood in there twice, and was told that he had something going on and needed to get it looked at before Monday. Sooo, Max had no school on Friday and instead got to go see Papaw for his ear. Turns out he has a very bad outer ear infection, meaning right by the eardrum, and it is swollen and inflamed. Max had to get his ear flushed 3 times and then got put on an oral antibiotic and antibiotic ears drops. Well you can guess how quickly he figured out that going to see Papaw at his office keeps him from going to school, REAL QUICK. Max had a great weekend and not a word was said about his ear hurting and believe me, it didn't slow him down any. Pretty much normal other than poking his finger in there for good measure every once in a while.

Max was fine all weekend, had BM's and all that good stuff, but come Monday morning he was asking to go to papaw's again rather than go to school. I told him "No, you have to go to school." I took him to school and promptly worked on getting him into the ENT surgeons office to get his infection looked at per Papaw's instructions. While waiting in the doctor's office I get a call from the school. Max is telling his teacher and anyone else who will listen that his ear hurts! What? He hasn't complained about that ear since Friday before we went to papaws. It took a while but the doctor got there and said bring him over. I had Max's AVT bring Max over to the office and we proceeded to wait for the doctor. Max kept asking if he could go to papaw's when we were done, school no. I kept telling him no. The doctor looks at it, says he's not sure what's caused it, but gives it a name nonetheless, (which honestly I couldn't tell you if you threatened my life on it) and says when he's done with the antibiotic drops, start putting these drops in. I ask the doctor if Max's ear could possibly be hurting him so bad that he needs to go home rather than be at school and the doctor says no, he's fine with him going back to school. Again we go through the tears, "no school", "papaw" until I finally leave him.

Today? Today I happily dropped my child off at school with a "good-bye and good riddance". Why? Because every 15 to 30 seconds from the time we left the house at 7:30 am he said, "Papaw?" "go papaw's?" I explained over and over and over ad nauseum that we were not going to papaw's today, papaw is working, Max is going to school. Right before we got to the school about the last 15 minutes of the drive he started with "Home?" No, we are not going home, look we're almost at your school. Uggggghhh. I am praying that he can get over this and start to enjoy school again. While I'm thrilled he can hear and speak because of his cochlear implant, I honestly never, ever thought that I would go insane from him asking questions. I probably wouldn't feel like I was going insane if it were different questions, but the same question over and over and over for days is driving me nuts. If I could drive and videotape at the same time I would post about 5 minutes of our morning dialogue and drive everyone who watches insane as well.

Can you hear me?

The Interim November-December 2006

2007-03-24T08:24:00.000-05:00
Geez, having a child that is deaf is soooooooo NOT easy. It would be easy it if I was already well versed in sign language and had been using signs with Max since birth, but we didn't know he was deaf therefore I'm trying to cram in a language and teach him. Our communication is limited (Problem 1). He is nearing the terrible two's and has started to practice a little early. I had asked someone how I was supposed to handle some of the things that Max does, such as pulling his sister's hair, pinching her, all the good stuff siblings do to one another. It's my responsibility as a parent to stop this behavior, right? So I asked how I should go about doing this. The woman knew just how I was to handle this. Great, I can't wait because this really is nerve-wracking and it makes the ugly side of me come out in full force. She gives me phamplets that tell me I'm supposed to sit down and explain to him why he cannot engage in this behavior. Ummmmmmmmm, have I mentioned that our signs are very limited? I can't sign to him, "Max honey, you can't pull your sister's hair. That isn't nice and it hurts her. Don't do it or Mommy is going to have to either make you sit by yourself while you think about it and if you continue to do it I'm going to smack you on the butt to emphasize that you are NOT TO PULL HAIR". This will not work for us. I'm frustrated. See there are no answers in all of this. I could sit and look up all these signs for this and then sign them to him, but he will have no idea what I'm trying to say. In fact, I'm sure he would think it is funny seeing Mommy desperately flapping her arms like a bird, then we would be all off track as he signed bird and pointed to me. Besides the frustration of feeling that you are limited in discipline, there is also the frustration of not being able to explain. I can't explain to him, and my explanations to my daughter about his behavior sound cheap and small and unworthy even to my own ears and I'm saying them. Let's also talk about when he is doing something further away from me, I can't yell "Stop" or "No". In the house I can stomp on the floor to get his attention since he feels the vibration, but outside or in buildings that have concrete floors there's no stopping him. This is a challenge and sometimes a race that repeats itself over and over again. He runs, I run and stop him and sign no. He runs again and again I run and sign no. Over and over. Back to problem No. 1: Limited Communication.
Problem No. 2: A Whole Lot Going On.
I'm sure that anyone with a child that has special needs can tell you that there is a whole lot going on. Max has speech therapy two times per week, he goes to a playgroup on Monday mornings for kids with special needs, he goes to the Deaf Oral School toddler group, (which is over an hour away) once a week and then you can throw in doctor or audiology appointment, and a sign and play group once a month. Whew, just writing it all down wears me out. This is on top of the normal activities in a household, cleaning, paying bills, errands and even though other people talk about this I have yet to experience it, relaxation. I ride the wave of guilt constantly over this whole lot going on. I have guilt for my daughter who is 6. I try and try to have time with just her but it is soooo hard. I didn't get her girl scout patches sewn on when she got them and now some are missing, her little bag that they were supposed to be sewn on was blank for months. I've missed things because Max had an appointment here or there, or I was just so rundown and tired I simply forgot.

Can you Hear Me?

The Interim 2006

2007-03-18T07:02:00.000-05:00

Max's deafness obviously comes as a shock. We don't have any deaf people in our family. I don't know any deaf people. Of course I live in hillbilly heaven and there's not a lot of people but I still don't know what any of this means. First Steps, which is exactly what their name implies, is our state's early intervention program. They provide us with a speech therapist twice a week (Ha! That's funny considering my son is deaf, but she is supposed to help with total communication which is sign and spoken language) and give me booklets and phamplets that have different organizations that we can call. They fill out forms for us to try and get Medicaid or Medicare and send those off, and they get me in touch with a man who is supposed to be able to help me. His name is Jay Cherry and he works with the deaf and the hard of hearing in Bartholomew County. I start calling all the numbers and leaving my name and all info regarding Max and wait for them to call me back.

Don't think that I've accepted this and forged forward like an army trooper who knows they are going to conquer. There were some pretty bad days in there where I sobbed and cried and tried to understand what happened and what this all means. Dark thoughts came in to my mind such as what would happen if he was driving and a cop pulled him over, what if he was reaching for a pen and paper and the cop thought he was reaching for a weapon and shot him, how was he going to order food at McDonald's or anywhere else for that matter. I've never seen anyone sign at McDonalds. What about friends? How will he make friends? Max was never going to hear the ocean, or music, which is something I really, really love. I played 6 different instruments when growing up and my husband also is musically inclined. He played the drums in different bands and fiddles with his guitars. MAX WILL NEVER HEAR ME SAY I LOVE HIM. That's what hurt more than anything. My mind would go to those dark rooms and try to explore them and it would leave me so raw and so hurt and so very scared. I couldn't imagine not hearing anything and when my mind would try to explore that area, it was very, very scary. On top of this, we have a daughter who is 5. I feel so useless because I'm so overwhelmed, so upset and trying to work things out and I feel like she is being left out. I've tried to explain Max's deafness to her, but it's hard. It's hard for me to understand so I know it's hard for her to understand. Isn't that the way it is when one has a child with special needs? One gets lost in all the drama, the pain, and all the new appointments with doctors, therapists and specialists. The pain of feeling like you have failed not one, but two children is unbearable.

Jay calls us back and offers to come down and meet with me and help me anyway he can. He comes and brings more information and tries to explain Max's deafness to me, the speech banana and other things about deafness. I'm still overwhelmed so I take in about one-half of what he says.

We finally get Max's hearing aids but not without drama. Of course the audiologist at Riley's made ear molds right after his ABR. She was SUPPOSED to send them right away to the hearing center of my choice, (this was no easy task finding a hearing center that did pediatrics) and she didn't get them there on time. The hearing center, thinking they had called and told me that the appointment had to be cancelled were very surprised when we showed up with Max expecting our hearing aids. When we found out what happened we were devastated. Again. Why? Why did this happen? It was going to be another 2 weeks before we got the aids. We finally get the aids and guess what? The audiologist at Riley's didn't get the mold far enough in the ear canal so they have to make more because those don't work. GRRRRRRR. I'm already upset, in shock and whatever and this is really starting to take a toll. It is October 3 before Max gets both of his hearing aids.

In the meantime, people were being told about Max's deafness. Of course I never said he was deaf. Oh no, that was way too hard to pull out of my mouth. I would say he was hard of hearing. I was still under the belief that Max had moderate to severe loss in one ear and was again under the false assumption that his hearing aids would "fix" everything. We would have our work cut out for us, but they would work. People would react differently, some would apologize like it was their fault and look at us both with pity, yeah I feel it, pity me because I'm lost and I don't know how we'll survive this. Some would say, "There's so much they can do now days". Oh really, because everything I'm reading and what I'm getting is that they can't tell me what caused it, they can't tell me how he will do with hearing aids, they can't tell me if the hearing aids don't work whether the cochlear implant will work, as far as I'm concerned THEY CAN'T TELL ME ANYTHING OR HOW TO FIX THIS!!!!! I think that most people think that because we are advancing in the medical area that there are all these wonderful avenues we can take to "fix" this, but their isn't. If you have some type of medical problem, say for instance your heart, the medical professionals can tell you, "Oh we'll just do an angioplasty, bi-pass, or even yeah we'll get you a new heart and you'll be good as new." But with deafness, those medical professionals can't tell you a thing, other than cross your fingers and hope that something helps. It sucks. More people need to be aware of this and donate for more research regarding hearing loss and deafness.

When Max gets his hearing aids people look at us strangely. Some ask questions, some just stare at him, then at me. It's hard to tell what they're thinking. Sometimes it makes me angry, other times it makes me unbelievably sad. There was a woman one time that said, "can they fix him?" I want to lash out at her, "yeah, they can fix him but I don't want them too, I'm selfish and I want him to be just like he is." Another time Max and I had gone to the BMV. Max was asleep and laying on my shoulder and hearing aids ring if they are close to anything, loudly. One of the women at the BMV was looking right at me and saying, "What's that sound? What is that? Do you hear it?" She kept asking over and over in that "tone" while looking at me. (That tone is the tone that a teacher or parent uses when they know that you have messed up but want you to freaking admit it, so they ask stupidly in "that tone"). I ignored her until it was evident that she was not going to give up and replied, "I'm sorry I can't hear you from this ringing." She then asked if he had hearing aids, "No, he wears these because the President sometimes calls to confer with him on special matters." She knew I was pissed and shut up. Can you HEAR me?

August 2006 Max IS Deaf

2007-03-17T08:45:00.000-05:00

Max is deaf. He's what? Deaf. I don't know what you mean.

We found out that Max, 18 mos., is deaf. How did this happen? He passed his newborn screening, I've got the little paper that says so. How did this happen? We don't know, the doctors don't know, no one knows. We could get genetic testing done, but why? Why put him through that and we're not having anymore kids, FOR SURE, so I guess if it is a big issue with my kids when they get older and start thinking about having kids they can get tested then. I won't do that to them or us right now. It is what it is and there's no changing it even if we have the answers.

We leave Riley's Children's Hospital shocked and befuddled. We were told that he had severe-to-profound loss in his right ear and moderate-to-severe loss in his left ear. I don't know what that means, I will find out (later) but for now I don't know what that means at all. After the audiologist got done with us a doctor came in. He starts Blah, Blah, Blahing says that "20 years ago he would have put his hand on my shoulder and told me he was sorry". What? He said that he wasn't sure if hearing aids were going to work or if the cochlear implant would even work. He does assure me it's not my fault. What? They send us off telling me to let them know which audiologist they are to send the ear molds that they have made to. They don't tell us where to go from here, what to do, nothing. We're lost in deafness. We don't even know what it means. On the way home I make Trent stop so I can pick up a baby book on signs. The journey has begun. Can you hear me?