Thursday, August 26, 2010

Here.. We... GO!

Tomorrow is a big day. Tomorrow is the first meeting in preparation for Lucas's transition from Part C (early intervention) to Part B (school-age) of the federal government's IDEA law (Iindividuals with Disabilities Education Act), enacted in 2004.

The purpose of this meeting is to discuss the transition process, discuss a transition outcome, and develop a transition plan, which includes a Multi-Factored Evaluation (MFE) and an IEP meeting before Lucas turns three in December.

I am prepared with my (full) 3-inch binder, containing all of Lucas's reports and relevant information, and statements about our hopes/dreams, concerns, current supports, upcoming appointments, and plans for him when he turns 3, as requested, as per the agenda we were sent.

I'm a bit nervous, but I'm bringing a special someone along to be an extra set of ears. She's the best of the best. (Thanks, you-know-who)!!!

Here's what the front of my binder looks like.

I made the word splat using a web 2.0 application called Wordle. It's very user-friendly, so check it out, if you're interested!

I'm still working on my binders for everyone at the actual IEP meeting, which is still a few months away. I have lots of great ideas, thanks to JTC, Drew, and Nolan. That binder will be unveiled later this fall.

For now, wish me luck!

Monday, August 23, 2010

a matter of semantics

I did not take this one, for the record...

In the past when people have asked me what's on Lucas's ear, I usually would tell them that it's a cochlear implant and that it helps him to hear. I also typically use the word help with children, because it makes the most sense to them.

I've been thinking about it lately, and I don't believe that the word help does the cochlear implant nor profound hearing loss much justice. The cochlear implant doesn't just help Lucas to hear, it allows him to hear. Without it, he hears nothing. Period. There's no helping involved. Helping is like being half-way done and someone lending you a hand. Hearing with a cochlear implant is like going from zero to 95 with the attachment of a magnet. It's pure allowance.

So, today when the cashier at the coffee shop told Lucas she liked the flashy thing on his ear, then proceeded to ask me what it is, I told her it's a cochlear implant, which allows him to hear. She then asked me if he can hear without it. Nope. Then she asked me if he was deaf from birth, and commented on how amazing technology is these days (INDEED). She thanked me for sharing (which was nice). Conversation over and mission accomplished.

I guess it was a matter of semantics.

Sunday, August 22, 2010

the last days of summer...

We're soaking up the last few days of summer, and trying to fit in some last minute activities before we start the school year. On Friday, we visited the Please Touch Museum in Philadelphia, which was pretty phenomenal. Lucas thoroughly enjoyed himself, as did Oma and I. I scored a great deal on Living Social (daily deals @ up to 90% off) for tickets to the museum, and am so glad I did. Here are some pictures from our day!

Yesterday we joined our friends and visited Lake Tobias Wildlife Park. When we visited last year, Lucas wasn't even walking yet. Time has really flown! The highlight again this year was definitely the safari tour, but Lucas enjoyed all the animals. We saw lions, tigers, bears, monkeys galore, zebras, ostriches, alligators, capybaras, wallabies, prairie dogs, emus, llamas, and more! Check this place out if you're ever in Central PA!

we tried to warn him...

Monday, August 16, 2010

I hear crickets

my boy got a buzz

This week I've been thinking a lot about those first few weeks after Lucas was activated, and how we spent all of our waking moments connecting sounds with meaning. It was absolutely amazing to me to watch him make those connections, and I happily chronicled those moments on video and on this blog. Check one of my favorites out here. We're at a much different place now, watching his expanding expressive vocabulary each and every day. But, we haven't forgotten where it all started.

As we learned at JTC, there are 4 levels of auditory development: detection (presence/absence of sound), discrimination (difference between 2 sounds), identification (recognizing/labeling sound) and comprehension (understanding meaning of sound). Since Lucas is speaking in 4 & 5 word sentences, he has made his way through those 4 levels pretty well by now. But, we still always revert to identifying sounds, like any good AV parent. I still always point to my ear when I hear a new sound and say "I hear that". Lucas now points to his ear and says "I hear" when he hears something new too.

I do have a point here.......... Lucas detected, discriminated, identified and comprehended a new sound the other night, when he heard the little creaking of crickets outside on a balmy summer night. He laughed his giddy little giggle when I explained to him what he was hearing and that they were little bugs "singing" in the bushes. Then, when we were driving home from my parents house, Lucas asked to "hear crickets", so I paused just a little longer at a stop sign, put down the windows and just sat and listened to the crickets with him. In that minute I paused and let it sink in that Lucas can hear the crickets and he loves it. It makes it all worth it. It's the little things that we don't take for granted anymore.

We haven't forgotten where we've come from with Lucas, and we're oh so happy about where we're going. The journey to hearing with a cochlear implant is constantly changing, evolving, moving. It's never stagnant. And it's oh so exciting.

Monday, August 9, 2010

final thoughts on our JTC experience

at the beach in Santa Monica; photo courteous of Leah

Wow! Today marks 19 months that Lucas has been "hearing"! I just noticed at the top of the blog. It's been worth every moment.

I wanted to write down some final thoughts about our experience at the John Tracy Clinic this summer. First off, I can report that my crying episodes have just about stopped. I think after a week we are finally back into our home routine, and I am less sad for Lucas. It actually makes me smile when he mentions his friends & teachers, as opposed to cry. Big step. Lucas has taken almost an entire week to re-adjust to east coast time. I think next time we fly to the west coast we'll be taking the red eye back.

This past week I've had the opportunity to let our JTC adventure sink in. I've gotten to tell others about our magical 3 weeks in LA. I've also gotten to see others' reactions to Lucas's progress over the past month. I didn't really expect Lucas to make big gains in only 3 weeks... but, he did. Here's what I've noticed:

1. His sentences are coming out more complete, and now include many more verbs. He's using verbs like have, want, need, to express his needs. He's also using 4 & 5 word sentences consistently. I think our favorite sentence in LA was at the aquarium when he said, "Come back orange Nemo, please." We counted the number of words on our fingers right then and there, and wrote the phrase down because we were so excited.

2. His use of noun articles like the, a has increased. Where he used to only say "open door," he now says, "open the door."

3. His expressive vocabulary has increased tremendously. The deliberate exposure to vocabulary in the classroom coupled with some great outings to the beach, zoo, aquarium, children's museum, science center, etc., all really improved his vocabulary. We will continue to provide him with language-rich outings.

4. He sings all the time now! Before we left, he would "sing" itsy bitsy spider, happy birthday and that was about it. I would venture to say that he learned about 20 new songs/rhymes, and he just belts them out whenever. I'm glad that I learned them too, so I can help facilitate them. The song packets & CDs they sent home with us help a lot too. When I ask him what he wants to sing, he always answers "slippery fish." I think it's my favorite too.

5. His social skills have improved. I've always thought that Lucas had pretty good social skills, but after spending all day long for 3 weeks straight with the same 6 kids, he really learned how to interact with peers of his age. I see him initiate little "conversations" with his friends, and even random kids at the playground. Today I heard him tell a little girl "show me" and grab her hand to lead her where he wanted to. I was so thrilled with the age-appropriateness of his behavior. Social skills are often tough for kids with hearing loss, but he really seems to be thriving.

6. Lucas has transformed from a toddler to a preschooler right before our eyes. He made tremendous growth in 3 weeks in terms of separating from us. I believe it was a huge step for him, and will help him in the coming years with entering school. I believe that JTC taught us to interact with him more as a preschooler and less as a tot, which will in turn encourage more sophisticated language usage.

7. Lucas's use of spontaneous, creative responses to questions has appeared. His most amazing SLP asked him on Friday, "Where's your car?" She was referring to a little motorized bike we have inside. He thought about it for a moment and responded, "It's outside." She then asked, "What do you do with your car?" He paused and answered, "I drive it." Conversational exchanges are definitely emerging. When we first started to work on questions & answers with him, we taught him some rote phrases. Q: "How are you?" A: "I'm fine." Q: "What's your name?" A: "I'm Lucas." Q: "How old are you?" A: "I'm 2." Now he's answering questions spontaneously.

Besides getting Lucas a cochlear implant, I believe that spending 3 weeks at the John Tracy Clinic was the very best decision we have made for our family. It brought us closer together, and gave us a real sense of empowerment that we will be the biggest factor in Lucas's outcome. We have so many tools to use as a result of the program, and we've made many life-long friends from all over the world. We will be forever grateful to JTC, and their dedicated, professional, hard-working, very giving staff. It is a magical place there. I'd like to bottle it up and carry it with me everywhere. If you can make it happen for your family, do it. You will not be disappointed.

So much for an end to crying episodes.

Monday, August 2, 2010


Well, we're home. Yesterday was a long day of traveling, but we made it home to our beds by about midnight. Unfortunately, Lucas is still on west coast time. Last night he went to bed at 1 AM (10 PM), woke up at 10 AM (7 AM), napped from 3-5 PM (12-2 PM), and wouldn't got to bed until almost 11 PM (8 PM). The west coast times don't sound quite as ridiculous. Hopefully we can get his schedule situated soon!

I bet the halls of JTC were empty this morning without the pitter patter of little bionic kid feet and the coffee brewing for knowledge-hungry parents. Lucas still asks about his teachers & friends all the time, and it makes me cry. Tonight before bed he said bye-bye to everyone in his class. I think he gets it. But, it's hard for me not to be able to take him to see his friends.

We're trying to adjust to the super humid weather around here. I now understand why Southern California is so densely populated. The weather is just spectacular. I feel like I live in a tropical rain forest without the fun rain forest part here in the northeast.

I think it was easier adjusting to life there than re-adjusting to life here. I will admit that it was comforting to get back into our crossover at the airport and drive home; it was comfortable to sleep in our own bed; it was exciting to see our cats & family. But, it's back to reality. It's time to buy a house (since ours is sold). It's time to get ready to go back to work (that's school for us). It's time to seek another opinion about a 2nd implant for Lucas. It's time to get Lucas a new earmold for his hearing aid. It's time to reconnect with friends and family. It's time to prepare Lucas for preschool. AND... it's time to put everything we learned at JTC into practice. Since it's our goal to "integrate listening into our child's personality", we must now integrate our new skills into our daily routines. Like I said at support group one day. "We're not going to change what we do as a family, we're just going to change how we do it." Let's get this party started.