Monday, June 29, 2009
I haven't vlogged in a while, so I thought I would give Brook something to watch! So, here are two videos, illustrating Lucas's 2 (albeit lonely) spoken approximations. I guess that's not entirely true... he also says "mama" and "dada" and has been saying "muh muh" for milk. Sometimes I think he's trying to say "up" and a /b/ sound for bubbles. He's trying though, and I'm proud of him!
Tuesday, June 23, 2009
I am currently excitedly working with our local deaf and hard of hearing agency to create a parent support group. You might remember that I started the Ears to Hear Club a few months ago, and although I've made a few connections, it hasn't gone very far. So I'm teaming with this agency to expand and provide educational opportunities for parents of d/hoh children.
We met this evening to plan our first meeting and talk about our ideas. One of the ideas is to create a brochure for hospitals, doctors, audiologists, etc. with local information for navigating the world of hearing loss. That's something that I never had at my disposal, but could have benefited from greatly. So I got to thinking... if I could have been given a brochure on the day Lucas was diagnosed, to help me get started on this journey, what would it have said?
First, there would have been an entire rack of brochures to choose from, categorized by the parent type, and I would have grabbed the one for cynical parents. It would have been in a step-by-step list format, and gone something like this:
*Please remember that this would have been the brochure for ME,
not necessarily you or him or her, just ME!*
So your kid is deaf, now what?
(please take the following information to heart,
but with a grain of salt... that's what you wanted, isn't it?)
1. Enjoy your baby. He will only be little once. And he WILL be okay. Really. I promise. Not joking. Take my word for it. The next few months/years will be difficult, but he will be just fine, really.
2. It could be worse. Hearing loss is lifestyle threatening, but not life threatening. However, only you are allowed to admit this. If anyone else tries to tell you this in a poor attempt at making you feel better, you have the right to smack them.
3. You are allowed to grieve. Take your time too. You did nothing wrong, really. You did not sign up for this. Find the poem "Welcome to Holland" and read it repeatedly with a box of tissues. It will make you feel better. Are you done? Great. Now start advocating for your child.
4. Severe-profound hearing loss is a fancy way of saying that your child is deaf... really deaf. deaf. deaf. deaf. Get used to it.
5. See a competent pediatric audiologist and get your son fitted with hearing aids ASAP. They may not work so well. You may never see him react. The feedback will drive you crazy. But, it's definitely worth a try.
6. Contact early intervention right away. They will come to your house for an initial evaluation with 10 people in tow, so don't be alarmed. Your son will qualify for services automatically because of his hearing loss, and it will be a great experience. Make sure you request speech therapy in addition to special instruction. They will try to avoid speech therapy, but your son deserves it.
7. Apply for medical assistance if you find out your private insurance won't pay for anything. And it probably won't. This may just be the most humbling experience of your life. Be extremely thankful for it.
8. Choose a communication method, but remember to stay flexible. What's right for your son when he's 3 months, 6 months, 12 months, 2 years, etc. may be entirely different. It could also be the same. Constantly re-evaluate and do what's best for him.
9. Navigate the wealth of knowledge online! You're not alone. There are lots of parents out there willing to help! Check out Deaf Village and join the yahoo group Listen-up, created for parents by parents. You don't ever have to comment, but you can silently read, read, and read more. You may learn more here than from the professionals. Other parents will be one of your best resources for knowledge. They've been there.
10. Journal your feelings. Or even better, start a blog. Share your joys, your sorrows, your son's successes, and his struggles. It will be a great online baby book.
11. Get involved with a support group. If you can't find one, start one. You will never regret finding a local friend going through the same exact thing you are.
12. Learn about the cochlear implant. It will not fix your son's hearing, he will always be deaf. Don't jump into this decision. But, if you want him to listen and hear, and he can't do so with his hearing aids, explore this option. You won't regret it. Go to the cicircle website for great information. Join their yahoo group too. Or, just read their blog.
13. Your son needs language. Learn some baby signs. Signing Time videos are amazing. Start out with the "First Signs" video. "Where's the Frog" is too advanced for you. You don't need to learn question words yet. You will be singing and signing in your sleep.
14. You will have umpteen appointments in the next year. Learn to pack well, travel light, and pump on the go. Sometimes, you might travel 80 miles to meet with a doctor for 10 minutes, and then drive home. Come with a list of questions each and every time. He will probably laugh at your list, but ask them anyway. Be an informed parent, and be proud of it.
15. Enjoy your son, he'll only be little once. Talk to him constantly and sing to him, even if you know he can't hear you. It's as much for you as it is for him. Oh yeah, and make sure you meet that 500-a-day kiss quota. He needs to know how much you love him. Oh yeah, and enjoy being able to make lots of noise while he sleeps. It may be very different with your next child.
Sunday, June 21, 2009
Sitting here alone on Father's Day feels like déjà vu. Last year, Nate was in Costa Rica. This year, he is in Peru, actually visiting Machu Picchu as we speak.
And where will he be next year? London, Paris, Florence, Rome, actually. And the next year? The Mediterranean. How and why, you might ask? Student trips. It's a great way to see the world and expose our students to life and culture beyond our little PA town. I also took students to Germany, Austria, Liechtenstein and Switzerland in 2007. But, I'm putting my traveling on hold for the next few years. I've even kind of lost the itch. I just have no interest in leaving Lucas. 5 days in California was almost too much.
Back to the subject at hand... Lucas is so lucky to have Nate as his daddy! And it's times like this, when he's far away, that make me realize even more how special and important he is to both of us. Lucas just adores his daddy. I've been trying not to say "daddy" while he's been gone, because I'm afraid he's going to get really upset that he can't find him.
A lot has happened in our lives in the past year. About this time a year ago, I think our raw grief really started to lift, and we changed completely to advocacy mode, and it hasn't stopped since. Nate has been there every step of the way, rejoicing with me in all of the many little strides Lucas has made. Nate just adores Lucas too. I love his comments about how much he loves him.
This year, we'll celebrate a week late. Maybe some year, Nate will be around for Father's Day. An even better idea is for me to express my gratitude to him for being such a great father every day.
Saturday, June 20, 2009
We just got home from a great week at the beach! Although the weather wasn't stellar, we pretended like it was and still had a great time. Here's a recap!
Lucas enjoyed sitting on the beach in a big boy chair...
splashed in the ocean...
ate sand from the sand toys...
splashed in the pool....
walked on the boardwalk...
went for wagon rides with Ryan...
rode a really cool horse on the carousel...
went for wagon rides with Ryan...
family beach pictures 2008 & 2009
Friday, June 12, 2009
Thursday, June 11, 2009
I participated in an Advanced Bionics Webinar (web seminar) today. The webinar was called Tools for Toddlers - Supporting Infants and Toddlers with Hearing Loss & a Cochlear Implant. What a great decision! It coincided perfectly with Lucas's nap, and I was able to sit right at my computer and participate!
The first interesting fact that I learned, is that hearing loss is the most frequently ocurring birth defect, and is the number one disability in the world. Wow, I really didn't know that.
I found lots of great resources on The Hearing Journey, such as the meal mats activity, and many downloadable songs, such as "High Chair."
If you're interested in this or future webinars, visit the eLearning Library at www.bionicear.com.
Did anyone else participate? Does anyone know whether Cochlear Corp. does this kind of event too?
Wednesday, June 10, 2009
This hair was so unruly (especially when he got sweaty!). So, I took him to my hairdresser, and Lucas got his first real haircut! He did pretty well too - a little wiggly (not surprising), but he generally sat really well (on my lap).
Tuesday, June 9, 2009
And Lucas is learning to drive? HA! No really, has it already been 5 months since Lucas was activated? I probably wouldn't have noticed, except that I glanced at the ticker at the top of the blog. I knew it would be good for something!
So far, the journey has been amazing... there's never a dull moment! I'm learning so much every day, and so is Lucas. And he never ceases to amaze me. He really understands a lot, so we keep feeding it to him. One of these days he'll belt out full sentences...
I'm so happy that I don't have to fight with him to keep his processor on. The only challenging time is in the car. He must get bored, and he always inevitably yanks it off and uses it as a chew toy. NO GOOD! And it's hard to drive and reach back and unclip it from his shirt and take it from him. I can't wait until that goes away. If that's as bad as it gets though, I can handle it!
As a wise CI mother once said, "it's a marathon, not a sprint!" It's the little things right now that count - like Lucas blowing kisses when I say, "blow mommy a kiss" (without modeling it). I can't wait to see what the next 5 months bring!
Sunday, June 7, 2009
Wow. I have an incredible experience that I'd like to share. We spent a lovely evening in the park with Lucas. There was a praise band and the weather was beautiful. On the way home, my mom informed us that Lucas wanted ice cream (hint, hint), so we decided to stop. While we were getting situated, a woman walked by us and was really excited about Lucas's implant, telling us that her daughter, in line, had bilateral CIs! We were so excited. They sat down next to us, and we proceeded to chat for the next hour.
It just so happens that they were at the same event in the park, and although they don't live in our area, they were visiting family that attend our church. They were even going to go to another ice cream place, but decided to go with their original plan. The mother has a degree in deaf ed, and her daughter is about to turn 14. They go to the same implant center, and even have the same surgeon as Lucas.
This girl was just so impressive, and really well spoken. I'm talking not only about how great her speech is, but also how poised and articulate she is. She was first implanted when she was 8, so she provided some very interesting first-hand perspective as to what it was like to be implanted, how the sound differs from her hearing aids, and the benefit of 1 versus 2 implants. She was a breath of fresh air. I asked her questions about swimming, music appreciation, what kind of a difference using the Dry and Store makes, and what kind of advice she had for me. She told me to keep signing and introduce him to other kids with hearing loss. She also told me about a hearing loss camp here in PA that she highly recommends. Lucas is still a bit young, but we'll definitely look into it when he's older.
Her mom was really great too, and I hope she reads Lucas's blog and is able to contact me. She told me that she just got her daughter a cell phone, and that she's able to talk to her on it, not just text. I burst into tears, and she gave me a big hug, telling me that she understands, and it brings her to tears also. She told me about how her daughter continues to see improvement in her hearing, and how we made a great choice (in her opinion) on our CI company!
Meeting them was an answer to prayer. This is the very first time that I've met an older child with a CI, and really only the 3rd or 4th time that I've met any other children with CIs. Sometimes it's so hard to keep long-term perspective. We're often caught up in all of the little challenges associated with having a baby with hearing loss, such as keeping the CI processor on or whether he's responding to all of the Ling sounds. I've read about many successful kids through this blog network, but somehow, this was just different. Meeting this very successful young lady in person was just so refreshing, and I don't think it was coincidental.
Thursday, June 4, 2009
I just want to express how thankful I am for baby signs right now! Our current communication method is the Lucas method - an oral approach, using AVT strategies and baby signs. I use the term "baby signs" because I don't sign every word that I say, just some nouns, and probably for not even 10% of what I say. But, Lucas is still picking these signs up! And, we're able to use them to check his spoken language only comprehension. It's wonderful and comes in very handy!
It's just a good fit for us right now. Lucas is just not going to be an early talker. Maybe he was just predisposed to talking late, like some kids. Maybe it's because he never heard a word until January 9 because of the ineffectiveness of his hearing aids, and still needs time, like an almost 5-month old (his equivalent hearing age). Whatever the reason, baby signs just make sense for him. For the first time, I almost feel like I have something in common with the mother of a hearing child who chooses to use baby signs with her child to bridge that communication gap, although it's still a completely different world.
Just this week, he learned two new signs - bed and bath. Tonight, when I said "night-night" he signed "bed" and when I said "it's bath time" he signed "bath." As simple as that, I knew that he understood what I was telling him. He's starting to approximate speaking and sign at the same time too, like with "down." The baby signs may fall by the wayside in the months to come, but for now, I am happy for the world that is being opened up for him.