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?
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?
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, 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?
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?
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?
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.
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?
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?
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?
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.
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?
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?
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?
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.
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?
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?
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.
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.
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.