NIGHT LIGHT...for all kids who have hearing loss.

I recently read a blog from a mom who realized that her kid need bit of "nightlight" at bedtime.  I feel badly for all parents not knowing this.  ITS a MUST!!!!!!!!!!!!!!  All kids with hearing loss DO need a night light in their room for bedtime.  Its a sense of security especially you can't hear your surroundings while you're in bed.  I grew up with bit of light in hallway with my door tad bit open, then later I guess when I got older, I wanted more privacy.  Then I had night light.  AND I still do!!!!!!! LOL.  I have to have it.  I feel safer..I know it sound silly but it's something I have to have so I can wake up and use my vision to know what's around me if in case of danger or something amiss.  One thing though, I don't like it blaring right in my face, it has to be behind (almost) a dresser or across the room.  Just a little bit of light.  Mine is a Crystal rock light, very low dim and I put it on the corner on the floor beside my night stand.  (So its not directly in my face) Sean, my husband would tease me about having a nightlight..but I think he understands.  A story to tell, one night..there was a power outrage and of course no lights...Sean came home in middle of night later than I expected and he was standing by the bed.  (and I didn't know that CA, my daughter came in the middle of night and slept beside me, here I am thinking it's Sean)  AND I sense something. it woke me and all I saw was a big figure.   Suddenly I start screaming on top of my lungs, and I know that the neighbours probably heard it.   I was thinking its a burgler because the power is out..and alarm is not activiated.  You know the rest, it was a night that we never forget.  AND CA never went to our bed ever again..needless it was pretty scary moment.   And I shouldn't forget to mention another thing, I have a strong sense of "smell"..so if I smell something, I wake up fast.  Often I get mad at Sean for making coffee too early in the morning because then I can't go back to sleep once I "smell" it! LOL  Poor Sean, try to have breakfast and coffee in wee morning without waking me.   Talk about sensitive!  Due to my hearing loss, my other senses heightened.
I think Cory is the same thing too..some nights I would go to his room to check on him, he can sense my presence (maybe my smell)..and yup Im the same way.   I try to be careful not to get too close.

I am more satisfied..with our answer. We know we made a good choice!

You know that we are considering second CI for Cory..it was more of yes than no..after reading and learning about BI-CI..and I have to admit, I'm little nervous for making a decision for him.  But, there is lot of "what ifs"..so its better to do it now..FIRST more, the early intervention , the better...I don't want to wait and take chance with waiting for Cory to be old enough to make a decision himself.  He might not fully understand at the time, and it would be harder for him to learn more speech when he get older.   "What if"..he said to me "Mom, why didn't you go ahead with it when I was younger?"  same way as some would say "why didn't I have hearing aids? or why didn't you do sign language (that in my case..) or why didn't you do etc?"  I don't want to limit his choices, I want to give him all the choices he can ACCESS then he can grow and make choices of his own, rather than limit "all access of communication"  and you know that the eariler the better.   So if I do one way..and maybe it doesn't work..then you "wasted" a year or so of his life trying that way.  Then you have a lot to catch up or it's harder to be successful in sense it could "have been" etc?   So our approach may be different than most people who are choosing to chose ONE way of communication method, then they would wait and see if it does work or doesn't.  I rather just give it all and exposes all access of communication just so he have the full potentials.   Same with our decision, by getting a second CI.. if he doesn't want to use it, then he can take it off himself.  No pressures.   I feel better knowing that we gave him the option rather than he ask us later why we didn't?  
Then just other night,  I feel stronger than ever with our decision.  One incident that happened during a family Christmas dinner.  Sean sat on the left side, with Cory in the middle and I'm on the right.   (The CI is on the right side).  Sean encouraged Cory to say the word "Thank you"..Cory would try to feel Sean's voice by pressing his hand on his throat then Cory turned his head all the way around to "hear" Sean's voice.   I 'm like astonished by this..he is trying to hear him but the CI was on the other side!!!! So Cory's ability and showed us how its important to have that balance, he needs it on the other side!!!!  This got me curious, and was eager to see how he reacts by "the wrong" side of sound stimulations.    Sure enough, he has been turning and looking around to see where it came from and tilted his head around to follow it. He does respond fully by the right side, directly the sounds coming from the "right" side.   But with sounds coming from left, he's not.  I am noticing that NOW.  WOW   Another thing,   I realized now that he has been sitting on the WRONG side of the car seat, thus, he hasn't really responding to me at times.  But unfortuanately, I have to stay on the driver side and he has to stay the opposite side so we both can see each other visually.   But not "auditory" as he hasn't responding up to prior.  I thought maybe its because of the motor noise, traffic noise etc...INTERESTING huh????

My little Grinch????

This is what I fear ..too much Christmas happening..Christmas comes too soon, in stores, Santa in mall, the holiday stimulations.  Over the weekend, I decided to wrapped the presents and put them under our tree.  Just because I need to make sure I got it all done..or if there is more shopping to do etc. (in case I forget someone or something etc.)  The first thing Cory said was when I bought it all downstairs "open?"..(nnnnooooooo!)  I said to him, "not yet, have to wait until Christmas Day".   I asked him to help me to put them under the tree.  He did but kept asking "open?" over and over. I had to held him back.   I kept saying "not today" "wait until Christmas"..tried to explain in different ways.  Bought out the calendar and show to him...I realized it's time to introduce him the calendar so he can see the dates, days and counting, concepts for today, tomorrow, yesterday etc.  It's not too early to show him..he may not get it right away but the light bulb will go off eventually in his head once he make the connection.  This is something I will start in the New Year, so we will start talking about going to school.  (yay, he is going full time..they evaluted him and said that he is language and age appropriated ready.")  So it will be pretty busy year, I predict. With second CI, going to school full time and getting right on with his learning.    He is starting to tell me how he feels these days.."I'm happy today"..or "I'm mad "..I always tell him how I feel so he understands the concept of feelings.   It's so important and it's not hard to do.  Just always say..I'm happy to see you ..or I'm happy to see you eating all your lunch"..or "I'm sad when you hit your sister" or "I'm going to lie down because Im tired"..if you make a habit of doing this..it become easier and in no time, your deaf child will learn these feelings as part of their life.  
Cory is telling me lately that "he is mad" at certain things, like its time for bath. "me, mad" and growled at us.  That we did, acknowledge this by saying "oh you don't want bath because you want to play more? you can play in bath with your toys, still playing".  Then he would say "happy bath"..LOL.   But it's more "mad" labelling than anything else.  So naturally, I would try to change it by saying "oh you're feeling grumpy" and then I would add "if you're feeling grumpy, then you should go to your room until you feel better".  HE GET THAT and would quickly say "no..I'm happy".    I guess time to add more depth feelings like curious, grumpy (instead of "mad"..) really it more specific. 
Lately, he has been giving us the "hand"..which drives my husband and my daughter crazy! It doesn't bother me too much..(it's kinda of funny..I just had to hold back my "laugh"). I have no idea where he got that from.  Its like "talk to the hand" gesture..I know its rude, not respectful.   Sean is really trying to get him not to do that.  We all talked about that, I even tried to see if we do that too. But none of does that.  But.........we do tell him "wait" saying and gesture with one little finger and tried to finish with what we are doing then follow up with him.  It was more of  don't interrupt us while we are talking. etc.   Could that be something he doing too? but its just the way he does it..oy!!!!!!!  it s NOT nice.  I can't imagine a 2 yrs old do that!!! You just have to be there to see it.  So when we tell him, "DON'T.." the minute he does the hand gesture  then he does the GLARE look right at us.    OY!   I told Sean ..if he does that rude things..then we all should not respond to that.  But wait , he will get a "melt down" if we ignore him.    Oh ya..that other thing he is doing. He is starting to become more strongwill with not listening or wanting to do stuff on his own agenda.  If we ask him to do something, he ignored us.  He tried to change the subject or do something else.   Its so cute to see that but this is a behavior, we can't ignore it.   and what's worse or funny?  We would say "ok, fine" and walk away.  He would SCREAM and cry.  It's "you miss the train" slogan...he really hates that.  So either way, it goes..it's unpleasant.   He is forgetting his manners lately, he forgets to say please, or thank you.     I think it's Christmas countdown..ugh!  Im tempt to tell him that Santa isn't coming this year!  ha ha..
Anyway, this is our "terrible 2" phase and it seems the wrong time of the year for that.  My older daughter will be out of school at the end of the week for holidays.   It should be fun..:)

Second Cochlear Implant...a decision to make...

It's official.  We just got back from Children's Hospital today..I came back bit little dishearted.   Up to this point, you know that we have been using his hearing aid for his left ear almost 2 months.  It was vague whether he responds to it or not.  Plus it's hard because he keep asking for the CI turn on while trying out the aid part.   Anyway, it comfirmed our answer today, Cory is not responding to his aid at all.   They confirmed it.   They did hearing test with aid only...no responds unless it's REALLY loud, which you can feel the vibration in the room.  LOL. I admitted I literally jumped out of my chair.  I guess they forgot to warn me.   So they tried the type that it vibrates in his ear to see if he understand the concept of listening and responding. He did well with that.   You could see the confusion by his face expression because it was different than listening with CI.   So basically, its done deal.   They said he is a candiate for second one..and we need to make a decision soon.  The sooner the better because he is young..and is really doing well with first and they (at that age) picks up on auditory really good to become successful.   Again, that word "successful"..that is WHAT we want for our children.  Am I so wrong to think that?   I do know, we love our children unconditionally no matter what they do, its their life, their choice.   But, doing this (getting a second one) is NOT their choice, its mine.  You can see why I'm mixed up with this.    I have to weight the pros and cons..and I really do feel strongly about it.  Maybe it's politicial part?  maybe it's feeling guilty?   what if, what if not?   oy! 
To answer another mom's question..who did got me thinking...what if there is something better ten years from now?  I did asked about that today...she said it can be upgraded, but cost pending ..yes.   So I do feel better about that.   Its like my hearing aids, I have to pay for them almost every 10 years...so it's basically the same thing.  (ya..ouch, I know.) 
I keep telling myself..if 10 years or 15 years later down the road, he doesn't want to use his CI (S) anymore.  He can just easily take them off. (not the magnet part in his skull) but the equipment.  That would be fine with me..that is his choice.  I promise myself not to be disappointed or mad or whatever, just respect for who he is.   Then I can tell myself, at least he has the both of options (signing and speaking) and we did our best for him.   He can make the choice hisself. 
It probably sounds like we are going ahead with it..up to this point.  But I really hope for some more feedbacks and to hear from others about similar experiences.  

Introducing a New Cochlear Implant..Nucleus 5

See?  I always say if there's something better..I rather wait.  AND for me, I m glad I did wait.   One of my friend, she has the old CI which its a huge box which she has to wear a wire all the way down to her back to her waist.  The processor is at her hip.   man..that bring back memories of my old body aid which I used to have.  I really never like it because it was so bothersome but yet I like to keep it on and hear the sounds.   Sometimes, I don't understand how and why some people who have a profound hearing loss like mine can't get that.   I do wonder if they really are NOT hearing anything or pretending to be?   I find it hard to believe at times, because I'm the living proof. 
Anyway, there is a new CI out..its supposedly to be better , a lot lighter, a lot smaller, more water resistant and don't need the extra wiring for kids to keep clip on their back.   And better yet, a small bump in your skull (for the magnet), apparently not noticable. (compares to old one)
check out the website...www.cochlear.com  and go to product site.  You will find Nucleus 5.  
We are getting the update one now for Cory.  I hope up to this point, maybe that is all he needs and not bother getting a second one so soon.   And I rather wait until he tells me that he wants a second one.  But I know there are times that we as parents need to make decisions ourselves. (hoping that our kids won't hate us for this when they get older..)  But I have my speech ready..so if there is ever a time for that.   But we have to make a decision basis on their future and their well being...we all want them to be successful with their life.   Is that wrong????   At least, I know this..we try our best.  And that the best we can do!   Try telling yourself that.  I know I do my best.  period.

His Hearing Aid..

I learn something new everyday...that is one of the benefit of having a deaf child.  Knowing, the process of "possible of having second CI", is that we have to try to hearing aid first beforehand.   So Cory has been wearing it for about two months.  And I had to complete the checklist to see if he responds to it or not, I already told the speech therapist that it was quite vague..it seems yes he does, but other times he doesn't.  (this is only for hearing aid and turn off the CI)   It is bit confusing I think for him too..and me.   I can't tell compares to CI's listening cues.   One thing, that I learned was that with CI, he responds to any sounds but doesn't recognized who "voice" is or can't tell the difference.  IM like what??????? are you serious?  WITH hearing aid, he can.   oy!!    That is very interesting.    I m not saying Cory does yet..but according to researchs, they apparently find this.  
I am really curious to see how this pan out.  I would like to see if he responding to his hearing aid, rather than get a second CI.   For now, I would like to wait abit longer because I'm not quite satisfied yet.  

fact or not? All deaf kids are S L O W E A T E R S???

Ok..I declare that today.  ITs' true!  Im sorry but yes...I have witnessed it so many times myself, Cory is such a slow eater.  Seriously, its true.   We would be eating dinner, I guess, maybe we are "piggies" but when it comes to meal time, Cory is taking in all the coversations, imiating us sometimes, talking to himself, signing in the air and trying to eat.   By the time, we finished our salad, moving on to the next course, Cory is starting his salad! We have been telling him constantly to stop signing/talking, eat! eat! eat!  I give up.   Its a losing battle, I tell ya.   ITs a very visual and good language opportunity there.  Cory is watching every words we say or sign.  I think its his favorite time of the day, is dinner time, that is when we ALL are sitting together and chatting away.   He may not be on the same wave length as us..but he will one day.   It was cute to watch but exhausting to tell him to eat eat eat!!!   Today, I was amazed to see him talking to himself at lunch as I was trying to make phone calls and he was just recalling what he did today at school.  And trying different way of driving a truck, using his imaginations etc.  It was fasicinating to watch but the clock is ticking because he needs to be on schedule, next is nap. 
Sean pointed it out..I wasn't a slow eater..well, in my case.  It was different for me.   I just eat my dinner fast and was always the first one to finish my plate so I can "excuse" myself from the table.   It wasn't because my family was boring or anything.  Its more rather that I was really tired from "listening" and speech reading all day in school and my eyes/ears weren't up to par at dinner time.   Its like a "break" for me and that habit stayed with me all those years.   I became used to being quiet at dinner time.  Sometimes, I turn off my hearing aids to give it a break.  My daughter is a chatty little mouse..oy!      My parents has been alway telling me what's up at dinner time, what they are talking about or good news or whatever, they alway make sure that I didn't miss anything.    (I was probably just bit ignorant at times..I have to admit it)  
I remember when I was older..starting high school, I would be so exhausted that I would come home and have a nap.  Taking my aids off and just pure silence for a hour then feel a lot better after a nap.   It is very tiring and straining to watch at all times, reading lips, listening hard and try to follow the class (without interpreters).   I still feel the same way now..after a long day of workshop or conference, or a gathering or party.  At least, my family understands that I need a break after.  (or I'll bite their head off! LOL)
So anyway, Cory is often left alone at the table after we all finished eating, I know that sounds bad but then when we are not there, he starts to eat and finish his meal fast.  
I try my best to allow plenty of time for him to eat and be part of conversation at HIS pace.  So we are not rushing off to next thing if we have to go out or next schedule.   Language is a wonderful place to be and to have..so why not just leave it?