Monday, January 18, 2010

it will not hold him back...

It's been a very eventful day, and I have lots to say!

Being a public school teacher awarded me the day off to celebrate Martin Luther King, Jr.'s birthday. Somehow, although Lucas's "struggles" are not race related, today was a very fitting day for two amazing hearing journey firsts.

Inspired by the success that Mari has had in music therapy, I decided to sign Lucas up for a music class. I found the class through a local rec center. With 4 other 2-year olds, Lucas danced, "sang" and dabbled with 15 or so odd toddler-friendly musical instruments this morning. I find a certain amount of irony in a deaf kid taking a music class, but it was one of those proud CI momma moments.

We were the first to arrive (kind of purposefully), so I was able to explain everything to his instructor. It's kind of hard to explain that he's totally deaf, but he can hear at the same time. She asked me if he could hear and understand us talk, so I decided to show her. I said "Lucas, say hi to Miss ____". He turned, waved and said hi. Point made. I think she needed to see it to really believe it. I can't blame her, because it still amazes me every day too. She was really sweet and told the class up front that "Lucas might not hear everything like everyone else." It was perfect, and really accurate too. I can't wait for the next 11 weeks of class. Although Oma will get to mostly participate in this one too, I have 3 more Mondays off before the class is over. I'm looking forward to it.

There are mixed reviews on music appreciation with the cochlear implant. Technology is improving that link all the time, but I'm under the impression that "busy" music is what's difficult - music with lots of different instruments, singing, etc. So, I believe that isolated music - just singing, just drums, just bells, etc. should be just fine for him. In fact, I think it will be GREAT for him, especially for improving his sound discrimination. His hearing loss will not hold him back from participating in a music class.

I also got to accompany him to aquatic therapy today. Boy was he in for a surprise! He had SOUND in the POOL! Since we've been contemplating private swimming lessons in this kid-friendly pool, I've concluded that his sessions will be more valuable to him if he can hear instructions. So, for his hearing birthday, I ordered a 5"x4" Aloksak bag and a lycra swimming cap from Amazon, and I took an expensive chance. It worked like a charm. It was so funny though, because when I was getting him changed, I kept trying to re-attach his ear, and he kept pulling it off, because he knows he can't have it in the pool, and he was so intent on going swimming. I had to have a heart-to-heart with him, and ask him if he wanted to hear while he swam. Once he understood, he was thrilled. He was able to follow simple instructions in the pool today, like "kick", "push", "blow bubbles", "get the ring" and best of all, "don't splash!". It makes me cry just thinking about it. His hearing loss will not hold him back from hearing while he swims.

the set up

hearing in the pool!

Lastly, while at aquatic therapy today, I picked up some free magazines from our area that advertise kid-related events. The one is specifically geared toward special needs kids. When I got home, I found a short article on a deaf teenager. Although I found her story inspiring, I read that she attends a residential deaf school, and when she graduates she may attend a vocational school that specializes in training adults who are deaf and hard of hearing. I'm sure she is happy and thriving, and she will lead a fulfilling life. There's absolutely nothing wrong with attending a vocational school either. But, I can't help but think about how Lucas will not need specialized training like that. And we will never have to send him away to a residential school, unless he asks to go. His hearing loss will not hold him back educationally.

All of these little miracles would not be possible without Lucas's cochlear implant. It's plain and simple. We would love him just the same. We would still see to it that he met his full potential. We would work hard to provide him with enriching experiences. But he would never hear music, he would never have the opportunity to hear in the pool, and he would not have an array of educational options to choose from. No one can deny that. I am a very happy momma today.

Enjoy Lucas in the pool!!!!!!!!!

Sunday, January 17, 2010

how many words?

I have been estimating how many expressive words Lucas has for the past few months. I stopped counting when Lucas had around 50 words, mostly because I went back to work and could no longer keep up with it since my time at home with him decreased so significantly. Since it's almost time for his yearly IFSP review, and all of his therapists are busy doing their assessments, I thought I would do my own.

Yesterday I followed Lucas around all day long with pen and paper, and wrote down every.single.word he uttered. Just to clarify, I only wrote down different words, so I didn't write "no" 100 times, for instance. I also didn't count words that he only repeated when prompted. I only counted spontaneous words. It kind of reminded me of my days in grad school, in my educational research class. At least that knowledge is being put to use!

And the results are in... 106. Now, that number is not comprehensive for all the words he knows, but gives me a pretty decent indication of where the number falls. I had been estimating 150, and I think that's pretty accurate! I would now say 150-200, because I can think of about 50 more words that he knows that he just didn't say. I know he can identify various food items, body parts, outdoor vocabulary, etc., but the opportunity never arose yesterday, and I didn't do any extra prompting. I wanted the results to be as objective and unbiased as possible.

The results of my homemade assessment really just excite me. His language abilities are measuring at an age appropriate level, and I'm just so proud of him! I can't wait until the "official" results are in!

Saturday, January 16, 2010

why they stare

It's getting easier, but it still often makes me want to cry. Anytime we go into public with Lucas, we get lots of stares. I've come to my own personal conclusion about these stares. People look and stare for various reasons. First, because they're curious. I'll admit that I'm guilty of this sometimes too. Second, because they don't know what the heck it is that they see on his head, and they want to know. Most people have never heard of a cochlear implant, let alone seen one. They're trying to figure out what it is, what it does, and why it's there. I understand that this is not unique to Lucas or hearing loss, but to anyone who looks a little different.

The hard part is when kids ask questions and their parents just shush them. The adults don't have an answer, because they themselves just don't know. For instance, if you see a person in a wheelchair, you can explain that he can't walk. If you see a person with glasses, you can explain that she can't see. And although people probably assume that a CI has something to do with hearing, they just don't know. Here are a couple of encounters we've had...

1. One time, Oma and I were out to breakfast with Lucas, and the server came up to him and asked him whether he was making contact with outer space with that "thing". If I hadn't been so utterly shocked, I might have been able to devise a great comeback.

2. When we visited Dutch Wonderland over Thanksgiving break, Lucas was playing with some other kids in an area with big blocks that were supposed to resemble ice cubes. One little boy kept coming up to Lucas and asking "what's wrong with your ear?" Lucas just looked at him, because he was too young to answer. The way that question was worded was just heartbreaking. It wasn't just a curiosity about what it was, but the fact that he identified it as there being something "wrong".

3. On Christmas Eve, one of the kids here, who was 4, walked up to Lucas and carefully examined his ear. Then he pulled the coil off and put it back on, to figure out how it worked. Lucas didn't seem bothered. He kept asking "what's that on your ear?" in a polite and curious way. Then he ran off to his mom and told her it was cool and that he wanted one. If he only really knew what that would entail, he might not find it to be so cool anymore. But this encounter was so sweet and innocent!

4. At Sesame Street Live last week, the little girl in front of us kept pointing and asking her grandmother what it was, and why it was blinking. (The blinking was especially obvious in the dark.) She just shushed her, to be "polite", and they turned around again.

I realize that these are examples of times when I should have spoken up, but I just couldn't figure out the right thing to say until 5 minutes too late. If I intentionally meet a person for the first time, I can easily talk about it. I can write to my heart's content on this blog. I can talk to a family member, a friend or an acquaintance about it for hours. But during casual encounters, I just kind of freeze and smile.

I look forward to when Lucas can answer for himself, just like Gage and Brook do oh sooooo well. For now, I will just smile back. I hope someday to find that voice.

Wednesday, January 13, 2010

an exciting day for Lucas

Lucas went to his first day of "school" today! What a fun day for him! I took the day off to experience this fun milestone.

We have been VERY fortunate to be working with Clarke PA (auditory/oral school for the deaf) since early September. I haven't posted much about it, but it's been a phenomenal experience. By some luck of the draw, Early Intervention in our county decided to start contracting with them, and they now provide Lucas's weekly hearing therapy session. Over the summer, we visited the school to learn about their early childhood programs, and shortly thereafter, Lucas started benefiting from their services AT OUR HOME. Um yeah, we're very fortunate.

When I first searched for auditory/oral programs in the vicinity over a year ago, I concluded that the commute would not be worth it. I thought we would make do with what is available to us locally. Things have changed, and here we are.

The drive is 80 miles each way. We're talking 3 hours in the car round-trip, without traffic. It's a good thing that Lucas likes to go "bye-bye" a lot! Lucas is also very lucky that his Oma is as committed to his educational success as his mommy and daddy are, or else he would have no way of getting there.

Right now, the "early toddler" program meets just once a week. That's one of the reasons we feel that the commute is doable. The next age group goes twice a week, and the preschool-aged kids attend up to 5 days a week. Our goal is to mainstream him locally at 3, and we hope that this program will give him the language boost he needs to make that possible. Who knows where we'll be in a year though!

There were 7 toddlers in the group today. It was really a introductory day, but Lucas enjoyed free play, circle time, a gross motor activity, a snack and then more free play. He interacted well with the other kids, and even sat well for circle time. I can't wait to see how he grows through the spring. I just wish I could be there to see it each week. It breaks my heart just thinking about missing it.

It's a state of the art facility, keeping in mind every detail for creating an ideal listening and learning environment for hearing impaired children. It's seriously impressive! The staff is just amazingly friendly too. I already feel very welcome there.

Here are a few pictures from today (Oma came in extra handy):

coloring fun

engaged during circle time

up, up, up goes the balloon

snack time

free play fun on the trampoline

Another big plus to the day was that Lucas got to visit his cousin Ryan, who lives pretty close to Clarke! These boys are going to be trouble together someday soon. Just wait...

I never imagined sending my 2-year-old to "school" already. But, I'm so excited for the experiences this program will provide for him and I think it's going to be well worth it!

Saturday, January 9, 2010

Happy 1st Birthday to Lucas's ear!

Dear Lucas,

One year ago today we turned on your ear. You loved and embraced your bionic ear starting on that very first day. Now you get very upset when you don't have it. You will never remember that day, but Mommy and Daddy sure will, and we have some video for you to watch too.

This past year has been nothing short of miraculous. You began that first day just hearing beeps and buzzes. A few weeks later you started turning to your name, then to "meow". Shortly thereafter you started babbling and even said "mama". You were stuck on the same 10 words for a few months, although you seemed to understand everything we said. Then, when your hearing age was about 9 months, your expressive language just took off. You now consistently put 2 words together, have at least a 150 word spoken vocabulary and there's little we say that you don't seem to hear or understand, as far as a 2-year-old goes! You have caught up to your hearing peers in terms of age appropriate language milestones. The challenging part of the coming years will be keeping it that way.

We never fathomed that you'd hear this well. Never ever ever. Sometimes, when Mommy's trying to put you to bed, a truck drives by and you yell "uck". You're always the first to hear airplanes in the sky too. Today you heard someone say the word "baby" across a restaurant and you repeated it (because you have a slight obsession with babies). We definitely have to be careful about what we say, and we often spell things around you too, or just speak Spanish. Yeah, your bionic ear works REALLY well.

Today we really wanted to celebrate, so we took you to see Sesame Street Live. What joy it brought to us to watch you listen and DANCE to Elmo, as you clapped your hands excitedly and yelled "elmo". Everyone around us commented on how precious a site it was to see your excitement. And they had no idea how exciting a day it really was either. Mommy cried way too much during the show, but she was just happy for you and couldn't help herself.

Tonight we sang to you and got you a first hearing birthday cake. You will probably now ask to eat cake every day for the next month, like you have since your birthday. I promise, we don't always have cake in our house, contrary to popular belief.

Although you are technically bimodal, you have no interest in wearing your hearing aid. You made that very clear a few weeks ago, when you threw it in the trash can. Maybe we will explore getting you a second cochlear implant this year. Mommy can't make you any promises, but maybe the surgeons have changed their minds. That new N5 looks pretty exciting.

We can't wait to see what the next year of your hearing journey will bring. We are certain that it will be filled with many memorable experiences. We continue to have so much hope and many high aspirations for you! We are so incredibly proud of you!

Love, Mommy & Daddy

p.s. What do you want to do next year for your hearing birthday? You will be able to milk this one for many years to come.

Friday, January 8, 2010

Lucas, how are you?

Daddy's been hard at work teaching Lucas to answer the question, "how are you?" Apparently, he's just fine!

Tuesday, January 5, 2010

a unique experience

Like many other kids whose hearing loss is associated with LVAS, Lucas has had gross motor delays since birth. He couldn't hold his head up until 6 months, he didn't sit on his own until almost 12 months, was unable to crawl with his belly off the floor until 12 months, and didn't walk until 21 months. He's doing remarkably well right now, although he's still a bit behind. I attribute his most recent gains to a unique opportunity he has had: aquatic therapy.

Our area is very lucky to be served by a premiere children's rehabilitation facility, the Schreiber Pediatric Rehab Center. Through this wonderful organization, Lucas receives both weekly speech therapy and biweekly physical therapy at home through Early Intervention. His PT recommended last August that we pursue aquatic therapy at the center to improve Lucas's balance deficiencies, and he has had weekly sessions since mid-September. His balance has improved and his comfort level in the water has increased immensely. The pool is designed for children, so the shallow end is only 1 foot deep. This means that Lucas can stand and walk there! Oma has been the one to accompany him to therapy, but I've gotten to go with him twice when we've had off school.

His therapist just adores him, and she keeps mentioning that he's ready for swim lessons. He always wants to put his face in the water, he doesn't want her to be constantly spotting him, and he just has no fear! So, we're looking into private swim lessons in that pool because of the depth, and I think it will be a much richer experience for him if he can HEAR. So, I'm heeding some advice that I got from cicircle over the summer, and I'm going to rig his processor so he can wear it in the water, using an Aloksak bag and a Lycra swim cap. I'm excited to try it out, and nervous at the same time. We'll see! I predict it will be well worth it!

I've pieced together some video clips from therapy that capture his incredibly contagious laugh, his complete lack of fear for the water and his ability to stand in the pool. Enjoy!

Monday, January 4, 2010

Would you believe?

On New Year's Eve, one of Lucas's processors just stopped working. I was wondering why he kept trying to adjust it, and then I noticed that the light had stopped blinking. I tried to trouble shoot in various ways, but I had no success getting it to turn on again. Luckily, he has a back-up processor, so it wasn't really that big of a deal.

So, I called Cochlear today, since today is the first business day since it stopped working. Last time I called (over the summer), they found his name in a jiffy. Tonight the rep kept asking me further questions, like which implant center he uses. She then explained that there is someone else with the same name in our state! Who would have imagined! I mean, there are only 188,000 cochlear implants in the world. But someone very close to home shares the same first and last name as Lucas AND also has a Cochlear brand cochlear implant. Somehow I think that's pretty unbelievable.

I guess I didn't do a good enough job of giving him a less common name... hehehe! Wouldn't it be fun for Lucas to meet this person someday?