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. 

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

the Lucas card

I got this idea from a fellow blogger mom on the cicircle yahoo listserv. There was a string of discussion on how to deal with rude people and their stares/comments about CIs. She mentioned that she created a card that she gives out when people are being curious or rude. It reminded me of this post and my struggle also to deal with the stares. To give an update, I am finding my voice when it's appropriate, but I feel empowered by this idea of creating a card about Lucas's CI.

Being the bargain shopper that I am, I caught wind of this deal at Kodak Gallery for 50 free "mommy cards" (you still pay $3.99 shipping) and I decided to create my own Lucas card. I'll put one in my pocket when I go to the park, and I'll keep one in my toddler bag (no longer really a diaper bag). I'll let you know how it goes. I just got them in the mail on Friday and I think they look really great.

What do you think of my card?

you know your child has a cochlear implant when...

This post is dedicated to my fellow mommies and daddies of kiddos with cochlear implants. I've been thinking about this list for a while, and it's my way of expressing what has become our "normal". I know many of you will be able to relate, even with a special kid without a cochlear implant. Please add to my list in the comments section!

You know your child has a cochlear implant when...

...his hearing aids made better chew toys than amplification devices.

...you're on a first name basis with the employee at Sally Beauty Supply, because you buy so much wig tape.

...you momentarily wonder why anyone would try to teach the alphabet in the bathtub when your child can't hear in the bathtub, and then you remember...

...you worry about rough play, tumbles, jumping, etc. because his coil might fall off.

...you have a fear of plastic slides.

...you carry along static guard and dryer sheets when you go to the park.

...you find yourself pointing out every sound that you hear (while pointing to your ear), even all those lovely potty sounds.

...you pop his coil off once and a while and yell really loudly, to make sure that he really can't hear without it.

...you've ever gotten strange looks or questions while in public.

...you know what "ear gear" and "critter clips" are.

...you never leave home without extra batteries, a back-up processor, a remote control, or extra wig tape.

...you've discovered a contraption, like an aloksak or food saver bag, to allow your child to hear while swimming.

...children without cochlear implants start to look stranger than those with cochlear implants.

...you decorate your child's CI to make it look "cool".

...you've ever been driving and gotten hit in the back of the head with a flying processor.
...you've had to search high and low for a processor that your child has mysteriously hidden somewhere, maybe even having disassembled first.
...you know few, if any, other kids (or even adults) with cochlear implants. You've made most of your connections through the blogging world, or on facebook.
...you've traveled far and wide to meet up with other families of children with cochlear implants.

...you've taken the John Tracy Clinic correspondence course.

...you are a member of the Alexander Graham Bell Association for the Deaf and Hard of Hearing, Hand and Voices, or the American Society for Deaf Children.

...you've ever received or know of others who have received hateful comments from a member of the Deaf community.

...you check the Ling sounds every day, and get worried if your child doesn't respond.
...you refer to his processor as his "ear".
...your child takes off his "ear" because he's mad, frustrated, or doesn't want to hear you anymore.
...you spend at least 2 hours a week in formal therapy, but all playtime is unofficial therapy time, and you're always looking for a teachable moment.
...you narrate everything that you do, and even elicit strange looks at the grocery store from your repetitive comments like "up, up, up you go", "do you want a piece of cheese? hmmmm, cheese? I like cheese. Do you like cheese?"
...you marvel every day at how the simple act of attaching the magnet allows your child to go from 0 to 95 in an instant.
...you've adopted the "I love you" sign as your family symbol, even if you don't use sign language with your child.
...you can't imagine life for your child without it.

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.

sharing his story

My school district runs an extensive United Way campaign each year. I always sit and admire the strength of the presenter to share how this organization has impacted their life.

This year, I got to be that presenter.

Lucas has received services from 2 local agencies that are funded by the United Way. I've traveled to each of our district's building's faculty meetings to share Lucas's story and talk about how the early intervention services he has received have impacted his outcome immensely.

At the first meeting I attended, I couldn't hold it together. I cried almost the whole time. I don't know if that will ever change, although I've held it together much better at the other meetings so far. Lucas came along, and everyone got to see him in person. He was so great, and really helped my little presentation. Yesterday was my own building's faculty meeting, but Lucas was sleeping, so he couldn't come. Instead, I made the following video to share. I think it made just as much of an impact, if not more. It's a slightly different version from the one that I showed, for privacy sake. Enjoy!!!