Saturday, February 13, 2010

Nik's Deafness-- part III (CI)

Gosh, I originally  thought I could do this post in 1 part.  This is now the 3rd part.  Insane.  Care for the CI.  First off, this is a magnet in his head.  He knows this.  He knows he's not supposed to stick things to his head but does it anyway sometimes to be funny.  Main reason I tell you about the magnet is b/c it can be very, very dangerous.  Especially, if he was ever to get an MRI.  He can NOT get an MRI unless he has surgery first to remove this device.  For that reason, Nik wears is supposed to wear a medical alert tag.  We bought him one from a great company that has a lot of cool stuff.  He doesn't care for it.  Have to find another one at some point. On my list of things to do.  We always, always have it for trips though.  Always.  In case we were ever in an accident and we could not tell people he was deaf, this tag could save his life.  If they do an MRI w/ an implant still there, it can literally rip his skull open.  Again, no biggie if you know ahead of time and make preparations.  Most of the time having special needs children is just making sure you cover everything in case something may happen. 

Another thing you have to be aware of is the static electricity.  It can render the device useless.  Hence, why he has to take it off if he goes on the playground or on our trampoline.  Static electricity.  As long as you know the little rules, it's not a problem.  We have to remember if we are going to be out later than 7pm, we take a spare battery w/ us as they don't last all day.  Nik is good and reminds us when he doesn't need it.  Well, not need the implant so much but knows when it can get ruined.  Nik knew that during all the snow, he didn't want to wear the implant b/c he was afraid to lose it when sledding.  He also told me(in sign of course) that the implant would get hurt if they threw a snowball at it.  Yes, he told me that.  He obviously can't go swimming in it.  Though my husband has already got a design in his head that would elminate the water issue.  Crazy, huh?  So, when we go somewhere where he can't wear the implant, we make sure he is always looking at us.  Trying to do that all the time but even more so when he doesnt' have it on. 

Safety is something else you need to be aware of when your child is deaf.  An incident happened just two weeks ago during our snowstorm.  All the big kids(teens--14, 14 & 17, along w/ their friends) were with him so I did not think it would be a problem.  Seriously thought my children could handle things.  I decided to go join the sledding fun after I had cleaned up the kitchen.  I walk up the drive way onto the street and at that point thought I was going to witness my own child being run over.  Not kidding.  Remember, it was icy, not like brakes are going to work that well.  There was no way I could run fast enough to push him out of the way.  Too far away.  (BTW, NO cars were supposed to be on the road...stupid people joy riding).  So, I scream as load as I can knowing full well Nik can't hear me but hoping some of the other kids would.  I actually think the car heard me as it was able to stop in time.  Almost everyone in the neighborhood knows he's deaf.  This car was honking the horn like crazy but Nik did not even flinch.  Did not blink, did not turn around.  When he finally turns around & sees the car, he was scared and rightfully so.  Here's a place that I'm talking about:


Horrible picutre I know but this is just so you all can see what I'm referring to.  This is me(the one starting to take off the brown coat) w/ Alyona spinning on the ground and a neighbor in the red.  This is our street.  Notice the white stuff?  Not just packed snow but slick layer of ice underneath.  Further up where that car is on the left, is a road to the right.  That is where the big hill is they sled down. They know they're supposed to have a lookout.  No one was looking out for one.  URGHH.  Nik was standing a little further where I am in this picture when I noticed him from my driveway(not in the picture here).  I was devastated. Heart racing.  I got him and went to the hill & screamed & I mean screamed for all the Boyd Kids to come here immediately.  Then, I laid into them AND to all the teens standing around who knew better.  This could have been anyone, not just Nik.  Biggest difference is, they would have heard the car coming.  Nik just went about his business not knowing it could have been a fatal mistake.  I had my teens and all the other teens that day offering to watch him, clean the house, etc.  They knew I was distraught.  Just was ashamed of my kids for doing that.  They knew better.  They know anytime they don't want to watch out for Nik, all they have to do is get me.  They have an "out."  They made a bad choice.  Period.  Long story short, you have to be careful b/c obviously, deaf children can not hear what you are saying.  They are more visual.  That is why we need to buy one of those light up smoke alarms.  Haven't yet, but will soon.  We also have someone "assigned" to Nik anytime we go out anywhere.  A safety precaution. 
I let all my kids be as independent as they can.  I do not feel pity b/c he is deaf. Sorry, but I don't.  He's my son who happens to be deaf.  It is not a "flaw" or a horrible thing that has happened to him.  It is just who Nik is and frankly, I like Nik the way he is.  Okay, so I wasn't saying that about 10 minutes ago when I was yelling at him for something here.  Or when Warren was yelling at him for flooding the bathroom w/ bubblebath this evening.  No, not real fond of him those times but the rest of the time...absolutely!  

One thing I can not stand, is when people get real close to his face and speak slow and LOUD to him.  Many seem to think Deaf people are mentally challenged as well.  Umm, no.  Not many.  They just can't hear.  Yes, they are slow at language & grammar for obvious reasons.  I really just hate it when people say "oh, poor kid."  FAR FROM IT!!!  He has a home, a great life, friends and family that love him.  How is that poor kid??  I'd really like to know.  I don't want my son ever thinking we feel sorry for him and that is why we took him or care for him.  We love him is why we adopted him.  Nothing more, nothing less.  To the point.  I hate it when people pity some of my kids.  I see them as "normal" children.  I really do.  Yes, they have challenges but doesn't every single person in this world face challenges in their life?  We all have I'm sure.  One of Nik's challenges is he is deaf.  Well, that challenge and how not to tick off his sisters.  LOL. 

Back to care for the implant.  He takes it off every night when going to bed.  We have to dry it out as well in a case.  We get it "tweeked" about every six months now.  We are going again this month on the 25th.  Gosh, so much more to say about how he is leanring.  Really, there is just one more part to Nik's deafness post.  It will be totally about how he has leanred to hear and what he hears and what his prognosis is.  Just have to share a quick tidbit w/ you all before I sign off on this one.  Today at basketball, Nik was messing around.  Grabbed him & looked him in the face and said BEHAVE!  No sign, nothing.  Just said the word.  I had planned on yelling at him further but instead was thrown for a loop.  He looked me in the face, pointed his finger to me and said(in a voice) BEHAVE. It was clear as day & others heard it.  We started high fiving and then I told him he could talk.  Told him in sign I was proud of him for talking & using his voice.  It was so exciting to witness. Much, much more to come about him learning and newbie parents learning ASL.  For two years we thought we were signing breakfast.  His interpreter this year told us it was beer.  So, for 2 years we've been asking our son if he's finished his beer. Nice, huh?  But, you laugh and move forward b/c that his what you have to do.  If you concentrate on all the mistakes you make while learning sign, you will never learn.  Mistakes will happen but correct them and move on.  Hey, at least I  was preparing him for his college years, right?  More to come about his language for sure.  Part IV forthcoming.  My thoughts were just long-winded lately.  Have a great night.  So, so much happening tomorrow.

1 comment:

  1. Stepahnie!!!... Thanks again!!!... Great tips to have in mind!!!... Yes!... I agree about what you said!... It is not to have pity on him, because with the right tips, they could be independets and have a normal live!... But at his age, I think you must put an extra eye on him!... They can be entrertained playing and forget about the risks outside!... And it happends not just with kids!... I´ve heard storys of ADULTS persons of the deaf community losts in the London subway!... Desperate at that time!!!...
    Thanks again!!!... VERY INTERESTING!!!...
    Kind regards!!!...