Friday, March 30, 2012

Just a Typical Kid

I'm pretty sure any parent who has ever had a special needs child can relate to that feeling of just hoping and praying that their child will fit in somewhere and have friends and be loved.  I'm no different than any other parent in that sense.  Having my boys fit in and make friends is something that has always weighed on my mind.

What if kids make fun of the way he talks?  What if he doesn't talk at all?  What if others are afraid he's contagious or scary so they run from him?  What if they tease him relentlessly?  What if he ends up being that one kid that always eats alone in the cafeteria and never has a friend on the playground?  What if?

It's a constant worry that just nags at a parent's heart strings.  Last year, CJ was that kid playing alone on the playground mostly because he doesn't have the gross motor skills to keep up with the other little boys. This year, he's playing better. I think.  Still, I have often found myself wondering "Will he ever get to be just a typical kid? Will he ever have friends that can see past the implants and love him just the way he is?"

Last night was second grade dad's night, so CJ and Byron went to his school instead of to CJ's cub scout pack meeting. I went to pack meeting because it was disability awareness night and I'd said I would come and help teach the boys sign language.  There were several stations set up and the boys were broken down into groups of two or three to go around the tables.  In total, I'd guess there were about two dozen boys between the ages of eight and ten.  Maybe less than that actually.

As each pair would come to my table, I'd start by asking the same question: "Do you happen to know anyone who is Deaf or hard of hearing?".  NONE of the boys could think of anyone they knew who had a hearing loss.  Not one. Some of them thought really hard and said something like, "Doesn't your littlest boy have a hearing aid or something?".  No one pointed out to me that CJ is deaf.

On the surface, this seems like a no big deal kind of thing. In my heart, though, I was rejoicing.  In the minds of these boys with whom CJ spends a pretty good portion of his time, CJ is just another kid.  He might be the kid who talks a lot or maybe the kid always has some weird tidbit of information to share or maybe even the kid who gets really excited about everything.  But, he is NOT the Deaf kid with the weird things stuck to his head.  He's just plain old CJ.  It almost pained me a little to inform these boys that their friend is actually very deaf and can't hear anything without his processors attached, but I was pleased to see that they took it as if I were saying he had brown hair. It's no big deal to him.  Why?  Because they are his friends. True friends.

Awesome Audiology Update on Liam!!!

I was sitting at Liam's school killing some time this morning as his audiologist passed through.  She stopped off to talk to me about his most recent sound booth testing.  He is tested almost monthly to see how he is adapting to his cochlear implant. We're now three months out, so we should be seeing some progress.

In the first month, he got 3-4 correct out of 12 on the easy part of the test, which was basically deciphering syllables.  He got about the same on the part of the test where he had to decipher 2-3 syllable words. He couldn't be tested on monosyllabic words that started with the same letter and ended with a different letter. (ex: book, bus, bat, ball).

In the second month, he got 7/12 on the easiest part, and the same with the second part. He got 3/12 on the monosyllabic portion of the test. Progress, but still slow.

This month, he got 12/12 on the first two sections and NINE OUT OF TWELVE on the monosyllabic part!!! GO LIAM!!  It seems he's figured out what the processor is doing for him and how to use it. It's as if his little light bulb has come on.

She also said it's clear that he's really leaning on his processor for his sound input and not so much on his hearing aid. Since he's to that point, we can now go forward with pursuing implantation of his left ear.  As soon as we're ready and the doctor feels ready, it will be done.  Way to go, Liam!!

IEP Complete

About a week ago, we had CJ's IEP meeting at his school.  Each year, things just get better and better. This year was probably one of his best IEP's yet.  

We cut his Deaf Ed./AVT services in half because he's mastered his new processor. Yay!!!  We discontinued his interpreter, who was only coming once or twice a week anyway to teach him sign. He's just so oral that he really doesn't need it.  His OT has been moved to just observation and consultation, so that's even less time he'll be out of the classroom.  Next year, he'll be pulled for speech three times a week and deaf ed. twice a week.  So, it comes down to basically once a day.  That leaves him in the classroom about 93% of the time. WAHOOOOO!!!

We discussed his behavior and all agreed that it's improved quite a bit.  There is little or no concern over his academic progress and only a little concern about his socialization skills. He's finally getting there.

After all these years and all this worry, it's so nice to start to truly see our efforts coming full circle for him.

Sunday, March 18, 2012

I Want Ketchup

I found myself so wrapped up in the protesters outside Liam's school and researching their agenda over the past week that I forgot to pay attention to some of the amazing strides Liam has been making.  To most people, they probably aren't much.  To us, they're huge.  Luckily, last night I was brought back to planet earth again.

We had some friends in from out of town and took our kids and them to one of our favorite restaurants.  Liam is a little bit of a picky eater so we pretty much always order him the same things.  Macaroni and cheese with a side of french fries always leads to 100% customer satisfaction with him.  As he's gotten older, he's wanted more and more to go with those things, though.  While we were sitting at the table, Liam very clearly stated, "I want ketchup".  Instinctively, I passed him the bottle of ketchup and he happily drowned his fries in it.

It took me a second, but I suddenly realized what a moment that was.  Liam was able to tell me with words what he wanted and I understood him on the first try!  Even more, he knows the sign to tell me "I want ketchup", but he CHOSE to voice it and did so beautifully.

This is such a different scenario from just six months ago. I remember clearly on CJ's birthday going out to eat and Liam crying inconsolably for something that we simply couldn't understand. We'd given him every single thing on the table, but nothing satisfied him. He was frustrated. I was frustrated. I imagine those dining around us were even frustrated.  We were almost ready to haul him out of the restaurant, but I knew that would only lead to an even greater feeling of defeat for him. He wasn't being naughty. He was trying to tell us what he wanted, but we didn't understand. Finally, after a good fifteen minutes and even me being on the verge of tears, we figured out that he wanted an icee.  An icee!!! Something so simple led to so much frustration for him, and I don't know of any signs for that word that he would have been able to use to tell us.

The great blessing in having children who are different from typically-abled children is that we get to truly rejoice in the little things rather than just taking them for granted.  Who knew something as simple as asking for ketchup could ever be such a milestone?

Tuesday, March 6, 2012

The Deaf vs. deaf Debate Comes to a Head

There was an EHDI (Early Hearing Detection and Intervention) conference in our area recently.  It was picketed by the Deaf community. A few days later, an oral school in the area was picketed by these same people.  Today, Liam's school was picketed.  I don't care who you are or what your agenda is. Picketing a school where children are is the WRONG way to get your point across. That said, let me share my thoughts on a few things. Not all of my readers will agree with me. That's what the comment section is for. Feel free to use it.  (Please note that I moderate all comments and will not permit profanity, threats, name calling, or other similar offenses. Keep it PG please.)

The people picketing claimed to not be against the parents who chose to give their children oral education, but instead the system that brainwashed us all.  I think I'd rather have you picket me as a parent than insinuate that I'm so stupid and ignorant that I could be hoodwinked by oralist specialists.  Byron and I made our decisions for our boys after a great deal of research, thought, consideration, and full understanding of the implications of our actions.  Not that I'm asking to be harassed by a bunch of people who don't even know my life or my choices, but I do want to be clear that I was by no means brainwashed. I maintained control of my mind and actions the entire time I was making decisions on behalf of my children.  

To clarify, the people protesting these oral school are members of the Deaf community.  For those who are unfamiliar, Deaf with a capital D is suggestive of living within and embracing the Deaf culture, community, and language.  With the growing popularity of cochlear implants and vast improvements in hearing aid technology, the Deaf community is shrinking. This is understandably of great concern to Deaf people who wish to preserve their culture and language. I get that. I still don't see how picketing a school full of young children is going to help preserve the culture, but whatever. That's another blog post, isn't it?

Most all of my readers know our story, but let me just summarize for those who are just catching up.  CJ was our first child to be born with hearing loss. We were devastated, but did our research. We decided that total communication was the best choice for him.  We got him hearing aids, taught him sign language, and did everything we could to communicate in every way possible with him.  We wanted him to choose for himself what he wanted.  His hearing grew progressively worse, and he'd bring us his aids and tell us they were broken. Well, they weren't broken. His hearing was too far gone to benefit from hearing aids anymore.  He cried and cried because he wanted more sound.  That was what decided it for us.  Eight days after he turned three, we implanted him for the first time.  While we maintained his sign language, he wanted to speak. He was so desperate to find his voice and tell us all the amazing fantastical things that were happening in his little head.  He now has perfect speech and is fully mainstreamed.  He can tell us what he thinks, feels, or needs without the assistance of an interpreter.  He doesn't need another person to speak for him because he can do it for himself.  He knows he's deaf. He knows that, without his processors, he needs sign language and lip reading to express himself or understand others. That will never change. It's a piece of who he is.  We aren't ashamed of that or trying to change that. We're merely trying to give him every opportunity possible.  Is there really any shame in that??

With Liam, we did things almost exactly the same way.  We started out with sign language and hearing aids. We gave him all the input we could find for him, and let him guide us. Liam was actually more interested in signing, but was still trying to speak. It's just been harder for him. Since his implant, he has finally begun to find his voice and speak. He can tell us what he wants or needs. He still falls back on sign language and I'm fine with that.  Admittedly, he is the only child at his school who signs, but it's an oral school so that isn't at all surprising to us.

There are a few things that the Deaf community (as I understand it) wants to address. The first is that we should understand that our children are Deaf and are therefore part of their culture, which should include sign language.  Physiology does NOT define culture.  It is a piece of who a person is, but it doesn't define them.  9 out of 10 deaf children are born to two hearing parents.  The language those parents speak in the home is what helps define a child's culture, not his physical ability to hear.  My husband grew up in a Spanish speaking home because his mother is from South America. That is his culture, although he obviously also spoke the English his father was raised with.  Just as Deaf parents want their children to know and understand sign language, hearing parents want their deaf children to understand their language. It's not a matter of parents being too lazy to learn to sign or not wanting to or whatever the excuse may be. It's a matter of a natural born desire for a parent to share his or her own language with the child s/he brought into the world and loves so deeply.  

Some of the protesters argue that the cochlear implant companies should give half of their earnings to the Deaf community.  Why???  Those monies are going toward improving the quality of hearing devices that will potentially give recipients opportunities they could never have without some mode of hearing.  Opportunities for Deaf individuals to excel in their communities means more and more people learning about who the Deaf are and what their talents are.  While these picketers are worrying about all they stand to lose, they're missing the boat on all that they stand to gain.

It's an interesting situation to me.  If my child had been born visually impaired and I'd chosen eye glasses or surgery, that would be considered fine.  If my child were born with a heart defect and I had it surgically repaired, that would be fine too.  If my child were born with only one leg, and I got her a prosthetic limb and taught her to walk, that would also be acceptable.  My child happened to be born with hearing loss.  I, after a great deal of learning and time and consideration and prayer, chose to implant them.  I am now virtually the devil in the eyes of some in the Deaf community.

Help me understand this.  From what I've observed, Deaf individuals are dependent on interpreters to be their voice and ears in medical situations, legal circumstances, and even in their education. They have to hope that the interpreter is adequately skilled and can do more than finger spell.  Most of the time, interpreters are VERY skilled at what they do and that is a blessing. Sometimes, though, that's not the case. I'm not okay with my children being at the mercy of someone else to communicate for them.  If there is a way around that, I want to give it to them.

Often, those who only sign rather than speak are incredibly limited in their employment opportunities.  Statistically speaking, they have a lower success rate with school and a significantly decreased percentage of Deaf children vs. oral children go on to higher levels of learning.  Typically (though not always) their reading and writing levels are also decreased.  It's not that I think these are bad things. It's just that I want more for my boys if I can give it to them.  I want them to have every opportunity out there for them in this world.

I'll be honest about one more thing. As a parent who was trying desperately to find the right answers for my children, it was very hard to even get into the Deaf community. We had one pair of friends who were Deaf and have a hearing daughter CJ's age. They were wonderful to us and sort of helped guide us through what we were doing. They helped us get into the Deaf community in our area and make friends for CJ. We wanted him to have Deaf adult mentors.  

The overall feeling from the Deaf community as a whole was that implanting children was barbaric, cruel, damaging to their brains, forcing them into something they weren't meant for, etc.  As parents we sometimes wanted to turn and run from that as fast as we could. Who wants to be told that helping their child the best way they know how is barbaric?  Here's a hint:  if you want people to listen to you and change the way they see things, try approaching it a bit more mildly than, say, picketing at their children's school.  

It's so interesting to me because I have yet to see one single parent of an oral child picketing a Deaf school.  I don't see oralist parents forcing hearing aids and cochlear implants onto Deaf children.  Why is that?  Why is okay for Deaf individuals to treat oralists this way, but not the other way around?  We are people. We have feelings. We LOVE OUR CHILDREN and most of us go to the ends of the earth trying our damndest to do the right thing for these beloved little people that have been entrusted to us.  Before you protest outside our children's schools, put yourselves in our shoes.  THINK!  

Here's what it comes down to:
1. Byron and I are the parents here. We have made our choices on behalf of our children and we pray to God every day that it was the right choice.  For us and our family, this is what works.  We have no regrets and would do it again. Every ounce of blood, sweat, and tears that has gone into raising these boys to all that they can be has been worth it.  

2.  While I don't expect everyone to agree with our choices, I do hope they'll respect them.  At the very least, consider the Golden Rule and do unto others as you would have done unto you.

3.  Parents who choose oralism or total communication for their children are no more barbaric than a parent who chooses one religion over another.

There is so much more I could say about this, but it would be beating a dead horse and would probably fall on deaf ears (pun intended). I'll leave at this for now.  

Sunday, March 4, 2012

Three Little Words

There are so many things going on in the average person's life that something like three little words shouldn't really mean too much.  I suppose that, in the grand scheme of things, maybe they wouldn't mean much.  But, today in this moment, they do.

Language acquisition was challenging for CJ, but not like it is for Liam.  Liam has to really WORK for it. He has to hear the same thing over and over and over before he can utter it into something remotely recognizable.  Often he'll try hard to tell me what he wants or needs or where it hurts only to finally walk away frustrated because I have no clue what he's saying and the sign he's trying to use for it isn't the right one.  Or maybe he doesn't know the sign for it at all.  I remember back in September on the day of CJ's baptism, we took the kids out to eat at a buffet restaurant and Liam was in a full-blown meltdown because he wanted something and we couldn't understand what it was.  We offered him every item in sight to no avail.  Finally, after a good fifteen minutes and with a completely frustrated and sobbing Liam, we figured out that he wanted a slushie.

It's with all that mind that three little words would seem trivial.  There are so many bigger words he could learn. He could be learning words to tell me about the seasons, about his theories on how things go or how bugs grow.  He could talk about a book he's ready or tell me all about his days in school.  So many words are out there, and yet none seem to begin to stack up to his ability to say three tiny little words.

I love you.  Liam can say I love you.  That means he must also understand I love you.  When he says it, he says it with great gusto usually followed by a hug.  They're such small words, but they carry so much meaning.  They tell me more than any novel ever could.  And hopefully, when he hears me say it to him, it carries as much weight for him as it does for me.

I love you.

I love you too, Liam.

Friday, March 2, 2012

Fun Little Updates

I have become quite the lazy blogger, I suppose. I apologize about that.  The nice thing is that Facebook has rolled out its timeline, so I can go back and find the really great stuff that I've been meaning to share, but haven't had the chance.  I like to expound on things and think I'll come back to it, but then get sidetracked and never come back to really do so.  Instead, here are some highlights of fun things straight from my facebook page:

January 17th:
I don't want to freak anyone out or have people thinking the world is coming to an end, but Liam just put poop in the toilet instead of on the walls. IN THE TOILET, people!!! Could it be that we're nearing potty training and finally an end to the constant poocasso moments?!?!

February 2nd:
Rachel has her big hearing test today (the one we missed a month ago due to snow). Hopefully we get really good, clear results and are able to come up with a good plan as to whether to aid her or leave her as she is. Worst case scenario: I have to get used to her having adorable little pink aids with purple ear molds. There are worse things in life, right? (She still has a high frequency lost, but nothing too bad.)

February 5th:
I love that our Primary calls me every now and then to let me know what they're doing so that I can help them find ways to include Liam even with his limitations.

February 14th:
Liam got off the bus today and promptly sang about three verses of Wheel on the Bus AND WE UNDERSTOOD HIM!! He added the /p/ sound at the end of beep and carried the tune. This was about the best Valentine we could ever have asked for. For a kid who just a couple months ago could say about 4 understandable words, this is really big. Little miracles happen each day.

February 15th:
I just found a letter in CJ's bag that a piece of his artwork was chosen to represent his school in a county-wide showing in Saint Charles and will be on display for the next month. Holy cow! The kid didn't even mention it to us.

February 21st:
Fun Little Liam Update: He took me by the hand and walked to the refrigerator and said, "I want open". I opened it and he said "I want cheese". He was delighted that I understood and gave it to him. Then he said "Open please", which I gladly did for him. His speech is still mushy and a little hard to understand, but those are complete sentences, people! Complete sentences from the child who could barely put two sounds together to form a word six months ago. Never doubt miracles, my friends.

March 2nd:
I was on the phone with my friend, Taffi, bragging about how well behaved Liam has been all afternoon. He's been cute and helpful and stayed out of trouble. As I was mid-conversation, I realized I had no idea where Liam actually was. Turns out he was in my room breaking a brand new bottle of nail polish all over the floor while painting his face with 24 hour lipstick that won't come off until at least tomorrow morning. Figures.

So, you see, there's lots of things I could expound upon, but I think you've gotten the gist of it all. Things are going well.  Liam is making so much progress in school!  We are just beyond words thrilled with how well the little bugger is doing.  He impresses me every single day with how smart he really is. He's also very compliant with wearing his hearing aid and processor now. We still need to work on in the car, but that's really it.  

I got an e-mail from CJ's teacher today wanting to change his IEP so he's only pulled out half as often as he is now. He's doing so well that his whole team (including me!) agrees that he doesn't need it as much anymore.

I really am setting a goal to post more regularly.  Really.  Let's see what happens.