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

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!