Thursday, January 9, 2014

5 in 5 years

Today we celebrate 5 years of hearing for Lucas. FIVE YEARS. Here are five things I've learned in five years of life with Lucas and his cochlear implants.


1. The cochlear implant is now only a part of who he is and of who I am. He is more importantly a boy in Kindergarten who loves life, practices Taekwondo, loves to play Wii and is super loyal to his friends. I am no longer the mom with the deaf son. I am the working mom of two children, one of whom is deaf. Five years has provided me with distance and perspective. Early on I was completely consumed with hearing loss and cochlear implants. I don't regret it for a moment; it was part of the grieving/acceptance process and also what has gotten us to where we are. I devoted an incredible amount of time figuring out how to ensure Lucas had the very best outcome. We are there.

2. Advocacy continues to be a top priority and is never ceasing. Right now (unfortunately) we are battling for his deaf education services to be carried out appropriately. It is because I am constantly advocating for him that I even know what's occurring and what's not occurring. I'm not entrusting the school to take charge of his education. I am taking charge of his education. Knowledge is power.

3. Lucas's future is clearer, but new challenges continue to emerge. I believe that the first two years of Lucas's life were the toughest because of the unknown. When he was first diagnosed we had no idea if he would ever hear. When he was first implanted we had no idea if it would ever work. It was at about two years of age, when Lucas had caught up with his hearing peers and began to develop language exponentially, that I knew everything would be alright. Like I posted when Lucas started Kindergarten a few months ago, our first long term goal has been met - Lucas attends Kindergarten at our neighborhood school in a mainstream setting. New challenges seem simple in comparison to the beginning, but present their own difficulties. Responding to statements like "I wish I didn't have these CIs" is not easy for this mommy.

4. Support is so important, both forwards and backwards. I was SO alone in the beginning. I couldn't read much about kids with hearing loss before Lucas was six months old, and I never met anyone with a cochlear implant before he received his first. I did have wonderful support from fellow blogger mommies. We still keep in touch on Facebook, even if we don't all blog that much anymore. I vowed to change that for other families, so I started a support group. I have had the fortune of mentoring new families and also learning from other families that are further along in their journey. Support is so key to well-being.

5. I continue to feel incredible amounts of gratitude and I want Lucas to grow up feeling the same way. I feel like Lucas was born into the right family, in the right country, in the right decade. Not a day goes by that I don't stop and think about how fortunate we are, how lucky he is. When he starts to lament his hearing loss and need for CIs (which I believe he is entitled to... and it truly doesn't happen often), I first acknowledge his pain and frustration, and then I try to help him see the positive. We try to show our gratitude in other tangible ways too, like through fundraisers for Schreiber (where Lucas continues to get speech & physical therapy) and CHOP. I don't ever want this miracle become mundane or to start taking it for granted.

2009
 
2014
 
Happy 5th hearing birthday, Lucas. We are incredibly proud of you. 

Sunday, August 25, 2013

Ode to Kindergarten

Tomorrow Lucas starts Kindergarten. I've been doing a lot of reflecting in the past few weeks leading up to this day. 5 1/2 years ago, I never would have dreamed that Lucas would be attending our neighborhood elementary school like a typical kid.

I have a busy week ahead, starting my own school year and making sure that his begins successfully. On Tuesday, I will be in-servicing all of the supporting teachers he will work with (gym, art, music, library, speech, etc.). On Thursday, I will be reading Let's Hear It For Almigal to his class. I'm really looking forward to both times to help make his transition smooth.


At the beginning of August Nate and I attended the PA Low Incidence Conference in State College. We attended some great workshops, networked with other parents, and both kids got to attend a "camp." During that time, I was able to reflect a lot on our almost 6 year journey of being Lucas's parents. As I have some attention issues, I decided to write my own "'Twas the night before Kindergarten" to sum things up and bridge the next stage of Lucas's life.

Enjoy!


Ode to Lucas on the Night Before Kindergarten

‘Twas the night before Kindergarten,

And as I think back, over 5 ½ years have already passed.

Those first few days, months & weeks were uncertain and uneasy,

But everyone hoped and kept on believing.

Hours of therapy, thousands of miles,

Schreiber, JTC, CHOP, Clarke, EI.

Philadelphia, Lancaster, even Los Angeles:

Over time it became clear success was evident.

Advocacy, support groups, Facebook & Blogger:

New friends in our backyard and even the whole world.

NICU, MRIs, even 6 surgeries,

All before you were too big to get upset and worry.

Tomorrow you head to your neighborhood school,

Although you might rather be swimming in a pool.

You'll use your voice, your smile, and your FM system

And all of those self-advocacy skills you’ve been practicing.

Your first long term goal is about to be met,

And now there are new ones that need to be set.

Doctor? Teacher? CI Audiologist?

First deaf president of the United States?

Cochlear implants have forever changed your future

And now we can’t wait to start some new adventures.

 © Jennifer R. Campbell                      6 August 2013

Saturday, January 5, 2013

Check out this new(er) blog!

Please welcome my dear friend, Jillian, to the CI-mama blogosphere! Both her husband and her son are implanted, and she has a lot of great things to write about. Check out her blog!

Tuesday, January 1, 2013

Happy New Year!

On this, the first day of 2013, I find myself looking ahead to the new year and wondering what it will bring for our family. Hopefully more blogging.


Lucas just celebrated his 5th birthday. The weekend of his birthday fell exactly the way it did at his birth, so I did a lot of reflecting - the crazy blur that was his birth 5 weeks too early, and of course, all the health issues in the days and weeks to follow. If only I knew then what I know now, I could have saved myself so much heartache. The only word I can use to describe my feeling of understanding is perspective. Five years have brought me a lot of perspective when it comes to parenting and hearing loss.

I was home to celebrate with him on his big day (because it was on a Sunday!), and celebrate we did. We spent the afternoon at Dutch Winter Wonderland, with our dear friends who live down the street.


Nora is 14 months and is a really sweet little girl. I'm having so much fun watching her grow! Her natural language milestones are also incredibly fascinating to me, along with her acquisition of Spanish. We're teaching her ASL signs with Spanish, and she uses quite a few already: milk, water, cheese, grapes, eat, daddy, cat, more, bath, sleep, all done, please and monkey. She doesn't talk much, but says mama, dada, "ga" (for gato = cat), up, hi, uh-oh and tickle. She growls for a lion, and quacks like a duck. She waves hi and bye, likes to give butzers (raspberries), LOVES to read books, and is obsessed with our cats. She just started walking (as her chosen means of getting around) at Christmas, although she's been knee walking for about 2 months. Check it out... it's pretty amusing:


We had family portraits taken at the end of October. Here she is at 12 months:


Lucas celebrates his 4th hearing birthday in just 8 short days. I haven't decided what we're going to do yet, but something fun. I don't know why, but I'm even more excited for his hearing birthday than his real birthday. It makes me almost giddy just thinking about it. Lucas continues to progress beautifully. He was tested this fall and is scoring at and above age appropriate levels in all areas of language. He will start Kindergarten in the fall at our local elementary school, and will be completely mainstreamed. This is what we've been aiming for for the past 5 years. 

I would really like to blog more this year, and I'm going to try and find time to do so. I want to chronicle Nora's bilingual journey, as it is almost as fascinating as Lucas's hearing journey. Lucas is learning Spanish too, just not the same as Nora. In the middle of the night the other night, he asked me for "más agua" (more water). 

May your new year be blessed with new experiences!


Thursday, April 12, 2012

advocacy

dyeing Easter eggs!

Wow, it's been a long time. There are no excuses, but several explanations for my blog hiatus. Although I have SIGNIFICANTLY more time on my hands than if I were working, having two kids is keeping me very busy! Mostly though, Lucas's hearing loss journey has slowed down. It has peeked and plateaued. We are right where we'd like to be.

Despite the missing processor that we are still desperately searching for, Lucas continues to progress remarkably well, and especially thrive in his mainstream setting. He continues to take swimming lessons and has started playing soccer. He has lots of friends with whom he communicates brilliantly. He is doing everything that I would expect of a typical 4-year-old boy.

Our biggest buzz word around here lately is advocacy... in several different contexts. I like to believe that I moved into advocacy mode when I stopped grieving his hearing loss when Lucas was 6 months old and I began this blog. Before that, I couldn't read about other children with hearing loss, because it was just too painful. Thank goodness I got over that quickly and began advocating for my child. I believe that this advocacy mode will last for a long time to come, at least until he goes to college and I now longer have much input. He will then have to fully advocate for himself. And those are the skills that we have begun to work on... NOW.

Prior to re-writing his IEP this year, Lucas received services at home from a teacher of the deaf once a week for 3 out of 4 weeks a month, with the 4th visit being at preschool. She now pushes in to his classroom every other week, with her goal being to teach him self-advocacy skills. He is learning to speak up when he doesn't hear, to ask others to repeat themselves, to position himself strategically in the best location in the classroom (away from loud objects such as radiators or music, as close as possible to the teacher). These skills are important LIFE skills, and will be most important when he enters grade school.

Although we're teaching him self-advocacy, I'm still advocating for him from the sidelines. I have mastered the 1-minute here's-what-you-need-to-know-about-his-ears-and-his-needs speech. This has been helpful for swim lessons, soccer practice and church. It goes something like this:

"Hi, my son's name is Lucas and he's deaf. (pause and let it sink in)... But, he hears and speaks really well with his cochlear implants (pause longer this time for the processing of an illogical concept)... I have two tips for you... get his attention before you speak to him, and be as close to him as possible when you do. Don't worry if one of the magnets falls off, because he can put it back on himself, but if the processor falls off, he may need some help positioning it back on his ear. Okay, thanks, bye... and good luck."

I'm also advocating for our local children with hearing loss. By starting a support group, we are helping each other advocate, informing each other about how to give our children the care and services they need and deserve, every step of the way.

Recently I visited my local state senator to speak to him personally about supporting oral deaf education in Pennsylvania. The idea was not all my own, but it made me feel incredibly empowered, like I could truly make a difference on a broader level. What was really cool, is that I took Lucas with me, so he could speak for himself. He certainly left a lasting impression on the senator, who was thoroughly impressed at Lucas's ability to express himself. I got to do some educating on cochlear implants (one of my favorite things to do), and the senator gave me a 100% commitment to writing a letter of support, which was my request. I also encouraged him to continue to support Medicaid in PA, without which Lucas may not have one and would certainly not have two cochlear implants. We would be paying for that first surgery for the next 50 years, and would probably both have 2 additional part-time jobs. He agreed that it was worth every penny the state spent.

Life is good, and we are immensely blessed by this hearing loss journey. It has opened many new doors and experiences, and we've met so many people whose paths we never would have crossed.

"Alone we can do so little; together we can do so much." ~ Helen Keller

Monday, January 9, 2012

three years


Happy 3rd Hearing Birthday, Lucas!

It's been three years since Lucas's hearing journey began. We were told that day to keep our hopes high and our expectations low, but we learned quickly that he would far exceed our expectations. We did, however, have no idea that we'd be where we are today... with a little boy who never stops talking, who is ahead of his hearing peers in terms of language, who very successfully attends a mainstream preschool, who is very social and makes friends easily, and who is just a typical kid. 

Life is so normal, and easy (ok, minus the newborn...) right now, that sometimes I forget how far we've come. Today I sat down with Lucas and watched all of his youtube videos from his first year of life. I'm so thankful that I chronicled his listening/speaking/communicating milestones in this way, because I forget about the baby steps and the joy in the little things that first hearing year. Lucas got a kick out of the videos, and I cried a lot. He kept wanting to know why I was crying. My response? "It's complicated." It's tough to explain to a 4-year-old the sorrow, joy and relief that those videos evoked. 

I forget sometimes that he went from beeps and buzzes to coherent receptive language in less than 3 months... that by 6 months he had 11 words/approximations... that by 12 months he was caught up to his hearing peers. I forget sometimes how incredibly hard we worked that year. The messy house you see in all of his videos? Totally worth it in exchange for more mommy therapy. That 7 month hiatus I took from my job to teach Lucas to listen and speak? It was worth every moment spent and every penny lost. 

We have been incredibly blessed by this journey. We are forever grateful to Graeme Clark, the inventor of the cochlear implant, Dr. K. for his skillful implantation, and all of his therapists, who have helped teach him to listen and speak. We can't wait to see what this next year will bring for him. Enjoy the video from his activation day!

Saturday, December 24, 2011

moments

It's moments like this that I'd like to freeze in time...


...my two beautiful children on Christmas Eve, all dressed up for church and festivities. Next year, Nora will be well on her way to being a little person, leaving her babyhood.

It's moments like this that made my heart melt... 


...as I watched my little boy turn four, and beamed with pride at all the obstacles he's overcome in his short life.

It's moments like this afternoon at church, when I first noticed the sign language interpreter beautifully interpret the Christmas hymns, and froze for a moment, imagining how our lives might have been... not bad, not sad, just different. 

It's moments like that, when I marvel at modern medical miracles like the cochlear implant that allow the deaf to hear, that allow my son to enjoy the sounds of Christmas, just like me, just like his baby sister.

Without this technology, we wouldn't have heard Lucas ask us where the camel was in the Christmas sermon play, we wouldn't have reminded him that he needed to whisper during the service, and we wouldn't have heard him attempt to *sing* along to the hymns.

It's moments like right now, Christmas Eve, when I sit  her with immense gratitude to Graeme Clark and Dr. K, for giving this gift of sound to my son, and many other deaf children around the world, changing the way they experience Christmas, interact with their family, and take on the world. 

It's moments like those at church this afternoon that will never get old, that we will never take for granted. 

Merry Christmas! Wishing you peace, love and joy!