3 Down, 1 to go

Well, we have less than a week until Johnny's activation.  We are excited and nervous.  I don't know how Johnny will react, so it will be interesting to see.  I think it might bug him for a while because he is one who doesn't always like change.  At the same time, he always adapts very well and quickly.  

In my ASL class we watched a movie about two families, one that was Deaf, with deaf children, and one that was hearing with a deaf child.  We watched as the two interacted with each other, and in not the most friendly ways.  As I was watching it, I wondered what it would have been like to be one of the other students watching the film.  For them it was just an interesting movie in class.  For me it was real life.  My wife and I had gone through all of this, and had to make this decision, and had to wonder if it was the right decision.  I think about it all the time.  How is Johnny going to feel about his implant when he gets older?  Will he appreciate what we were trying to do in giving him as much opportunity as we could?  Or will he resent us for forcing an implant on him?  The family in the movie who got the implant, the dad said he stood behind his decision 1000 per cent, and called his brother (the dad in the other family) criminal for not doing it to his children.  I guess at this point, all I can say is that I hope we made the right decision.  I hope Johnny will find a way to live and thrive in both worlds.  I hope he will find a way to function in the hearing world, without losing his deaf identity.  I hope he comes to appreciate the culture he was born into, one that his mom and I knew nothing about.  I hope it all just works out for the best.  I just hope, no matter what, he grows up to realize his full potential, that he grows up to be a leader and an example to those around him.  That has nothing to do with him being deaf or hearing.  It just had to do with him being my son.

Liza's Signs

We've noticed that Liza is really beginning to sign more and more.  My favorite is when she sees me in the morning or when I come home from work, she signs Daddy.  I love it.  We have also been working with her to sign milk.  Usually, she tries to just go for it when we tell her to sign it, but more frequently she signs it now.

Earlier today we went to the library, and Eliza was just watching Johnny and us sign, and was trying to sign everything she saw.  Johnny  saw an alligator on a table and signed it to me.  Eliza saw that and laughed as she signed it over and over again.  I don't think she knows what all of those signs mean, but she knows that in our family, that is a way that we communicate.

She is growing so fast.  She went to the doctor's  today, and she is growing.  The doctor said that one of the things we should be seeing her do in the next couple of weeks is crawling.  Erica just informed him that she has been doing that for weeks.  He said the next thing that she will probably be doing by the next appointment is pulling herself up on things.  Erica let him know that she already does that too.  Apparently, our child is gifted and advanced for her age.  How many other 9 month olds out there crawl, pull themselves up on things, and talk?  Ok, I'm sure there are plenty out there, but we like to think that our Liza is pretty special.

2 Down, 2 To Go

Well, we are at the midway point between Johnny's surgery, and his activation date.  It has been an interesting time for us.  We feel like we have really done a lot to help people become aware of cochlear implants and how they work.  Johnny's scar has drawn a lot of attention, which always leads to questions.  We are always glad to explain.

Johnny is picking up signs like a sponge.  He has started watching what we sign to him and copying it, including finger spelling.  Granted, he doesn't really finger spell, but he tries.  He knows so many words, it is hard for us to keep up with him.  This week, we have been working with him on the concept of "help".  He still doesn't ask for it when he needs it, only when we remind him to.

His favorite new sign is sad.  Whenever we see some one who is crying, he signs sad.  The other day, we were watching the Superman movie, and we got to the part where Lois Lane dies, just before Superman flies really fast, causing time to go backwards (if you haven't seen the movie, excuse my nerdiness).  Johnny saw Superman holding Lois Lane, crying, and he turned to me and signed sad.  It was really cute.  Turns out, Superman movies are a great way to teach the concept of help.  Every time someone was in trouble, I would sign to Johnny that they needed help, and then Superman came and helped them.  Pretty soon, Johnny was signing to me that the people needed help.  I think he was really beginning to understand.

I hope, as we get the implant activated, that Johnny will learn spoken words quickly, and will continue to learn signs, as quickly as he has been.  I think that no matter how well Johnny learns to talk, his first choice will always be signing, and we don't want to discourage that.  We want him to be comfortable expressing himself in his language of choice.  That's why we want to learn sign language, so he always has that choice.

Parents Decide

Recently, I've been hearing of things that are a little troubling as a parent.  There are those out there who are trying to change, things and not for the better.  I am wary of any person or group who tries to tell me that there is one size fits all approach to children who are deaf or hearing impaired.  I am also wary of anyone who tries to tell me that my children can be "fixed", like their broken.  My kids aren't broken, they are perfect just the way they are.  I want to give them tools to communicate and be successful, but I always want them to be proud of who they are.

I know there are groups out there who are working to take away our choices as parents to decide what is best for our kids.  Nowadays, there are so many choices for kids with hearing loss or who are deaf, that we should be able to study them out, and decide for ourselves, and professionals and PIP workers should support us in that.  I am grateful that this has been our experience thus far.  We have shared with our PIP advisor what we have decided, and she has supported us on that.  However there are groups who claim that PIP is too one sided.  In reality, I think they feel that PIP should not offer any other option but the one they have chosen, whether that be signing or oral or somewhere in between.  These same groups are working hard  to make sure that they bring about these changes.  Everyone I have ever talked to in PIP has said that it's the parents' choice how to raise their kids, and they are there as support.  That is how it should be.  If these groups who want to change things by writing letters and going before boards are successful, our right to choose will be taken away.  I hope parents will be aware of this and make it clear that all we want is options, and the support to accomplish the goals we set for our kids.  I hope the day will not ever come that my freedom to choose will be taken away.

Now, those who are supportive of these groups, I believe are really doing what they feel is best for themselves and others.  

I am also just trying to do what I feel is best for my kids and others.  I want there to be choice, I want to have the right to choose for my kids, and I want my neighbor to have the same choice.  If you choose oral communication only, or if you choose signing only, or a mixture of both, make it the right choice for you and your family.

Johnny Goes to University

Yesterday, I brought Johnny to my ASL class at the University.  It was the last day of actual class before the final, and our teacher wanted us to each to bring a show and tell item and describe it to the class using sign language.  I brought Johnny because I thought the other students would think he was cute, and I love showing off how smart he is.  What I didn't expect was how much Johnny enjoyed the class.  He thought it was so cool that everyone was talking the way he does, like he was normal.  

He spent the time before our turn going back and forth between two different chairs and playing with his little super hero toys.  He also would sign all the things that the others brought to class.  He was really interested in what was going on.

Then it was our turn to go.  He walked right up to the front of the class.  I signed for him to sit in a chair and he moved over by the table where he had his back pack and sat down and just looked around and smiled.  I wanted him to try and sign somethings to the class, but he was being shy and didn't want to.  When our turn was over, he moved the chair back to the corner at the front of the class, and then he went back to where we had been sitting and got the rest of his toys and signed that he was ready to go to the car.  It was really cute.  Everyone was really impressed with him and how smart he was.  I am just amazed with how smart he is.  I am so proud of him.

Earlier in the day we brought Johnny to the city library in Salt Lake City.  He loved it.  The children's part was in the basement.  They had different rooms to play in, and one was the crystal cave.  He had on his Superman cape that Erica had made for him, and had just watched Superman II in the morning.  We thought it was pretty cool, because the crystal cave room looked a lot like Superman's Fortress of Solitude, so we got a picture of our little Superman in his Fortress of Solitude.

1 Week Down, 3 to Go

It was just a little over a week ago that Johnny had his surgery done, and he is looking good.  He is running around and playing like he always did.  We are amazed at how good the scar looks on his head.  It is really healing up nicely, and now that the hair has started to grow to cover it, you almost have to really look to see it.

Yesterday he went with Erica to the dinosaur museum at Thanksgiving Point.  She wanted to take him because lately he has been really into dinosaurs, and she thought he would be excited about it.  She was right, I guess as they came around the corner and saw the first dinosaur he started jumping up and down and getting excited.  He enjoyed the outing very much.

His newest thing is being addicted to chocolate milk.  He was already addicted to regular milk, but last week we bought some premade chocolate milk, and he loved it.  Now he won't have his milk any other way.  He also loves hot chocolate, so when we were out of the chocolate milk, Erica would make him the hot chocolate, which he began signing when he wanted to drink by signing hot, then chocolate.  Last night we went to the store and got him some mix for chocolate milk, since that is easier than making hot chocolate all the time, and he likes it just fine.

I am amazed at my little boy.  To be his old happy self again, this soon after surgery amazes me.  He has bounced back so well.  He still remembers the surgery, I think, but he has moved on.  I know he doesn't know the impact it will have, but in just three weeks, he will, and hopefully he'll eventually understand why we put him through all of this.

Not so Little Liza

Eliza went in last Thursday for an evaluation at the audiologist.  Her hearing is about the same as it has been, which means that the hearing aids are still working for her.  We were beginning to get a little worried that her hearing loss had increased because she doesn't seem to making all the sounds she should at this age.  It's kind of a frustrating thing.  These professionals decide where your child should be based on averages and what not, when in reality, every child is different.  Maybe we just worry more because of the progressive hearing loss that both our kids have.

The last little while I have been amazed at the amount that Eliza has grown.  All of a sudden she has her own little personality, she is becoming more and more a little girl instead of a baby.    One way that this is apparent is in her first signs.  Recently she began signing a few things, and it is so cute.  She signs milk and reaches for mommy when she is hungry.  When I come home from work, she signs daddy by smacking the side of her head, it is so funny.  She will also sign more by clapping her hands together.  I am amazed at how she has quickly picked these up.  I don't think she totally knows what they mean, but it is still cute.

She is crawling all over the place and has begun pulling herself up on things to stand.  Just last week she started letting go of things and trying to free-stand.  This usually only lasts a couple of seconds, and then she falls.

My little Liza is not so little anymore, but fortunately for us, she is still pretty cute.

Deaf for a Day, Lesson for Life

I am currently taking ASL 1010 in school right now.  I figured that I needed the language credits for my degree, and this was the most useful language to take right now in my life.  Part of the course requirements is that we need to spend one whole day (at least eight hours) being deaf.  This meant no listening to music in the car, not listening to sound on the TV, no talking at all.  All of our communication had to be through the sign language that we had learned.  I decided to do this today, forgetting that we had a church activity in the afternoon. When I remembered that, my wife asked if I would want to do it on another day.  I thought about that, and then realized Johnny and Eliza do not get to pick which days are convenient for them.  They go to every church activity, family get together, party, whatever as deaf people.  This would be a good experience in trying to communicate with the hearing world while deaf.

It was hard.  I felt like I was not really part of the activity because I couldn't really communicate with anyone.  Erica served as an interpreter, but sometimes she did not know what I was trying to sign, and I did not know hoe to better communicate it.  I felt like people were kind of just avoiding me, not on purpose, but just because the whole situation was awkward.  These people are normally my friends, but they couldn't talk to me, so they didn't.  After a while, I just followed Johnny around, and didn't really participate.  I wondered if this was how Johnny felt everyday on the playground.

Then I learned a great lesson from him.  He spends all day watching the other kids play on the playground and tries to participate with them, and is greatly ignored by them.  But he goes out there everyday and tries again anyway.  I was reminded of that at the activity, and realized that in a cool way, he had made some friends.  There were two other boys at the activity that were a little older than Johnny.  One of them kept asking me where Johnny was when he could not find him.  Then they played in the drinking fountain, taking turns spraying each other with the water, and laughing the whole time.  Then, the three of them found a worm on the ground and laughed as they each tried to pick it, Johnny was the first successful one, and they all laughed.  I realized that despite Johnny's differences, he had managed to make friends, and they found a way to laugh and enjoy each other that did not depend on being hearing or deaf.  I realized that the limits we saw in Johnny making friends were limits that we put on him, not limits he saw himself. I think he knows that the kids sometimes treat him differently, but maybe on some level he understands why, and somehow he has the patience to wait until they figure out that he is worthwhile to be around.

The Choices We Make

When we found out about Eliza's hearing loss, and then Johnny's more severe hearing loss, we were unexpectedly launched into a world that we knew nothing about.  Immediately people began bombarding us with questions about what we were going to do.  Decisions were going to be made over the next little while that would affect our kids' lives forever.  It felt like a lot of pressure to make the right choice.

The pressure came from all sides.  From things we read online to professors in school to medical professionals.  Everyone seemed to have an opinion with points to back them up.  It became clear that we were in deep, and that ultimately, it was something we had to decide for us.

When Eliza failed her hearing screening and we learned that her hearing loss was permanent and progressive, we began to wonder about Johnny who was still not talking.  Questions were raised about his hearing, and the more we looked at him, the more it became clear that he could not hear.  It was at this point that Erica began to learn sign and teach it to Johnny.  He picked it up fast, and still learns signs very quickly.  

In December, when we took Johnny in for his ABR, we found out his deafness was in the severe to profound range, and that hearing aids would probably not work for him.  The audiologist who was performing the testing asked if we would want to do a cochlear implant.  We were just trying to accept the fact that our son had already lost pretty much all of his hearing, so we had no idea about cochlear implants.  The audiologist then said that if we were considering at all cochlear implantation, then we should stop signing with him, since this would just cause frustration down the road.

Others would tell us that it would be ok to sign a little bit with him, until he got the implant, at which point he would be "cured" and not need to sign.  We were continually frustrated by this supposed choice we had to make to do either or.  The more we thought about it, the more we thought that we did not want to choose between the two, but to choose both.  Our kids would be bilingual and bicultural.

The realities for us were these:  Johnny and probably Eliza would be more comfortable signing as their primary mode of communication, and The families they were part of and the kids they would live near and the world outside their home would be an auditory world.  We wanted to give Johnny and Eliza every opportunity to communicate that we could.  We also did not want our kids to ever feel that they needed to be fixed or cured.  We want them to be proud of who they are, and to never feel that there was anything wrong with them.  These are the things we considered in making the choice to put Johnny though surgery and to keep teaching him sign language and to learn it ourselves.  We understand that this may not be the right choice for everyone.  I guess the important thing is to remember that no one is going to know what is best for your kids better than you will, and to have confidence in the choices you do make.  The other thing we've learned is that the right choice, whatever it may be, is rarely the easy choice.  It is always hard, no matter what you choose. 

Update on Johnny

I just wanted to leave a little post on how Johnny's recovery is going.  Saturday was along day, and Johnny was definitely not himself.  He just laid there and took it easy.  Well, for most of the day.  At some point he decided he wanted to start getting up and doing stuff.  Johnny just isn't the type to just sit and do nothing.  He knows he is missing stuff if he is doing nothing.  The problem was he couldn't really walk yet.  He would try, but he looked like a little drunken man when he did.  He learned that quickly, and mostly just crawled, or would come to us to help him get somewhere.

Sunday he was more like the Johnny we know and love.  He was moving better, but this led to more problems, because he wanted to do more, but still was not completely stable, so he made us a nervous wreck.  At one point, he and I took a long nap.  When he woke up, and then woke me up, he pointed to his head, and then signed "what", asking me what was going on with his head.  That broke my heart a little, and I wished I was better with signing so I could explain it better to him.  We spent a little time outside on Sunday, which we thought would be a good idea.  It just made Johnny want to do more stuff he couldn't, like sliding. The one thing he wanted to do more than anything else was to go down the slide, and that was the one thing it specifically said he could not do on the papers from the doctor.  So he was mad.

Monday, he was climbing on stuff and running around and hitting on Eliza.  Johnny was back in full force.  He still looked a little wobbly when he walked, and we had to help him up and down steps.

Tuesday, he looked normal and we started letting him sleep in his own bed, which was good for us.  He did make Erica nervous when he climbed up onto the back of the couch and tried to stand up on it.  That would have made her nervous even if he hadn't just had surgery on Friday.

Today, he has made it through most of the day without any pain medicine, and has been running around nonstop.  It is amazing how resilient kids are.  His scar is starting to look pretty good, which I think is a good sign that everything is healing nicely.

It has been an amazing process, and I look forward to what is yet to come.  Johnny is just so smart, and I thing he will figure out talking pretty quick, with work.  However, I also think he will always probably prefer signing, which is cool too.  That is his first language, and the most natural for him.  We don't want him to not be deaf, because that is part of who he is.  We also don't want him to not be part of family gatherings and get togethers.  We want him to have the best of both worlds, to be bilingual and bicultural.  It's not the easiest way, but we feel, for us and our family it is the right choice.

Johnny the Brave

On Thursday, we went in to see Dr. Shelton for Johnny's pre-op appointment.  He went over how the whole procedure was going to go.  Johnny had fun while we were waiting for the doctor to come.  He would sit on the doctor's chair and would sign for me to sit in the patient chair and then proceed to examine my hand.  He seemed to think it looked ok because he would then motion for me to leave.  Then I would sit again and the whole thing would be repeated again.  Then he wanted to have Eliza sit by him, and he would examine her.

When the doctor came in he 

explained how things would proceed the following day.  We became nervous when he told us that we would not be in the room when Johnny went under.  Instead he would be taken back to the OR doors, and then Johnny would go through the doors and we would go back to the waiting room, until it was done.  We were worried about how he would do with that.  Then the doctor went ahead and marked Johnny's right ear for the procedure. 

The next day we got up bright and early and were at the hospital at 7:15 to check in.  We waited in the first waiting room until they called us back.  Johnny was sad when we went back because he was having so much fun playing with all the toys.  When we went back they took his weight and height then we went in a room and changed him into his hospital pajamas.  This was probably the point when Johnny started to realize that this was not a normal doctor's appointment.  After a few minutes in that room, we went to a second waiting room with more toys, where we would wait to be taken back to the OR. Johnny was really enjoying himself with all the toys there and they had curious George on, so it was fun.  Then the anesthesiologist came in and wal

ked us back to the OR.  Johnny rode in the wagon with his Batman pillow.  Then we got to the doors and left Johnny with the doctors and went back to the waiting room.

Erica was the first to coback when Johnny was waking up.  She said that his face was really swollen, and when she got back there he was rolled up in a ball in his bed crying.  I was glad it was her and not me.  It was hard when I saw him.  He had the dressing wrapped around his head covering his wound and he was out of it.  It was really hard to see him like that, and to know it was my choice to have him here and to get this procedure done.  I knew before that the cochlear implant would op

en doors for Johnny and enable him to have as many communication tools as possible in his life.  I knew that, but it was hard to think about it as a good thin when he was laying in my arms.  He never looked mad or sad, just tired. 

We brought him home later that day, and it was hard to watch him all day.  He was not himself.  He just laid on the couch and slept.  When he was awake he would just lay there and watch TV.  For those of you who know Johnny, you know how out of character that is for him.  Later I was up with him and he signed football to me.  I gave him a football, and he threw it and began to laugh a little , and it was the first time I saw a glimpse of my Johnny that day.  Over the next couple of days, we saw more and more of him come out.  Now he is back being himself, except he still can't quite walk straight, so we try to limit his mobility, and he is just bored to tears and wants to get out of the house.  

Watching him go through all of this, I realized that my son is a super hero.  He is so tough.  He has cried and whined so little through all of this.  I know this will be a good thing for him, but it does not make me excited for the next one we'll have to go through with Eliza.