Archive for December 30, 2013
- process of change: a process or period in which something undergoes a change and passes from one state, stage, form, or activity to another.
As parents of any child we go through transitions as our children graduate to different stages in their own life. I am finding myself in that category right now as my baby just turned 5 (yikes! No more babies!!), and my oldest is about to turn 9 (that sounds so old!). Obviously as they gain more independence so do I which is incredible (and timely!!)
There is also a level of angst in this next phase of our life. My girls have been nicely wrapped up in the arms of a great private school for the last 7 years. By the end of this month we will know if they have been accepted at one of the mainstream schools we’ve applied for next fall. Why leave such a wonderful school that has taught my girls so well and has held and supported me in the early, tenuous years? Well, it’s time. The thought of leaving our school makes me incredibly sad, but I know that with transition and change come so many incredible opportunities.
The other part of my angst is that as the girls get older there are so many more things to teach them! Just the other day at the grocery store I mentioned needing to go back to the ‘produce’ department. Neither girl knew what I meant. “The produce department”, I said. They both looked at me vacantly. Immediately I went into panic mode. “I haven’t taught them about the departments in a grocery store and soon enough I am going to have teach about some really important things about life! I am terrible at this! I am clearly NOT ready!” I screamed internally at myself.
I remember listening to some of Hands & Voices colleagues and fellow parents talk about the grief they re-entered as their child grew up and transitioned into pre-school, middle school and college. I know these changes are tough on any parent, and I think for us as parents of deaf/hard of hearing children there is a deeper layer of grief, and release that we experience. When Ashlin moved from Early Intervention into pre-school I encountered so much anxiety. I had such a strong, personal relationship with our Early Intervention provider who took care of me as much as she did my daughter. Who was going to fill that void for me? There was also physical space created as I no longer had weekly Early Intervention appointments. What would I do with that time? Actually work?! That particular transition, just like the one I am currently entering, gave me space and time to focus on myself. I am currently finding that to be an uncomfortable place to be in.
For the last 7 years (Ashlin was identified at 18 months as deaf), I have fought insurance companies, got a legislative bill passed, learned and learned some more, gone to countless appointments, learned how to teach my girls language…. And, thankfully, I also walked into my role with Hands &Voices. And now with this new transition a space has been created so that I can really grow and succeed in my own life.
Last year’s theme at the Hands & Voices Leadership conference was about creating balance. I was interpreting that as taking time to go for a run and maybe have a girl’s night out every so often. Almost a year later (okay, so I can be a slow learner!!), I think the message was really about remembering who we are at our core; feeding our core being so that as we encounter these transitions with our children we aren’t so lost. In the beginning of this journey it is definitely challenging, but I encourage you to try. Do something each day or each week that feeds your core being.
And yes, the girls now know all the departments in a grocery store. They learned that same day! The other shoppers likely thought I was crazy (well, I did have a crazed panic look on my face!), but I feel better as a mother!
My oldest daughter Ashlin was identified with profound hearing loss when she was 18 months old. The news knocked us off our feet. It was completely unexpected. No one in our family has a hearing loss, nor did anyone we knew. Until I became involved with Hands & Voices, I carefully used the term ‘hearing loss’ when it came to both my girls. My involvement with Hands & Voices meant opening my vocabulary to include such words as “deaf.”
In my opening comments at our first statewide conference this past spring, I admitted for the first time how difficult it was for me to use the word “deaf” when it came to my girls. I was personally surprised by how emotional and meaningful that one little word was to me as I admitted out loud to a roomful of strangers, and for the first time, that I didn’t like saying “deaf.” Deaf. For some, it’s just a word. For many it’s who they are. For hearing parents, this one little word can be scary: not just new to their vocabulary, but a reminder that their child is different from them. The word brings us face to face with the unknown. My saying “hearing loss” felt less foreign to me, easier to my heart and I find that when I use the word “deaf” in public I get a more pitied look from the person I am talking to. Deaf to me meant a world I didn’t know, a community that might not accept our choices.
Deaf. Both of my girls are deaf. They are also smart, funny, silly, caring, generous, snuggly. Oh, and they have cute little girl butts! Deaf. Why is it that this part of them stands out the most? Why is it that this one word raises so much controversy, so much angst? And if I really want to talk about controversy, then I just need to mention the words “cochlear implant!” The use of hearing aids amongst hard of hearing individuals doesn’t seem to entice such controversy. Why is that? But cochlear implants can bring hostility—the eviction of someone from the Deaf community.
At the conference, former H&V board member Janet Johanson stated that her bilateral cochlear implants are a “tool,” similar to using the myriad of other technological tools available to deaf/hard of hearing individuals. As a parent, I have always looked at cochlear implants as a communication tool that can help my daughters be with and part of the greater community. They are still deaf. They just have this incredible technology that let’s them talk and sing and hear birds sing. Blind people don’t seem to have such an exclusive culture or so much emotion put into their sensory loss; why does deafness cause so much emotion?
I wonder how my girls will feel about deafness, the Deaf culture and community in the future. Will they feel like they are part of the deaf world or hearing world? Or, because they were implanted at young ages, and attend school with hearing kids and kids with hearing loss and are part of the H&V community, will that line become blurred for them? Will it matter? No one can tell me what life will be like for my kids since only in the last few years have children been getting implanted so early.
Question: Should they define their life as being deaf or hearing? Or should they define their life by the type of women they are going to be, the role they will play in our community, and in the world? Call me naïve (and I very well might be when it comes to this!) but as their parent I want their lives to be defined by the human beings they will grow up to be. I want them to do amazing things with their lives. I want them to make a difference. I want them to be happy, to believe, to have depth in their character. My girls get to experience the beauty of quiet and of sound which I think can give them a unique perspective on things, and I think it will make them better women, and will make them more attuned to the world.
I know their deafness has made me a better person and I thank them for that. I have been able to meet really incredible people from around the world because of them.
My girls are deaf. I am grateful. They are healthy, they are smart, they are fun to be with. As some incredible deaf adults have told me, I am making too much of this. Maybe I am. But as I meet more parents and deaf individuals, I come up with more questions. My experience with deafness is limited; I have more to learn and I am grateful that I get to learn more.
Deaf. I no longer feel threatened by this one word.
In October 2000, the film “Sound and Fury” was released and shown in film festivals around the United States . The story of two brothers in an extended third generation deaf family was a raw and poignant look inside the choices that families of deaf children face. The choices initially tore the families apart.
The movie focused on the Artinian family: Peter and Chris Artinian are brothers, sons of hearing parents. Peter and his wife, Nita, are both deaf. They have three deaf children, Heather, Timothy and C.J. Chris is hearing and is married to a hearing woman, Mari, whose parents are deaf and use American Sign Language to communicate. Chris and Mari are the parents of Emily, Christopher and Peter (twins), and Joey and Nicholas (also twins). Their son Peter (named after Chris’ brother and grandfather, so Peter is Peter III) is also deaf. “Sound and Fury” followed both families as they explored choices for their children, with one set of parents choosing the implant option( Chris and Mari) and the other opted not to (Peter and Nita.)
Six years later, another documentary featured 12-year-old Heather and a glimpse of her day-to-day life.
Karen Putz from Hands & Voices did a follow up with the families: Sound and Fury: A Family Comes Together Again.
Today, Heather is a junior at Georgetown University and she recently did a TED Talk there:
Bianca Birdsey, from South Africa, recently connected with Hands & Voices. Bianca and her husband are four months into the journey of raising three deaf daughters. In her new blog, Bianca shares her experiences and daily life with her daughters:
It has been a crazy 4 months, so much has changed, and so much has been explored! There have been moments emotionally lower than I thought possible, but there have certainly been rays of sunshine peeking through our cracked lives and fractured dreams. I’ve been catapulted about as far out of my comfort zone than I could ever imagine, into the deaf world. A world that I had never given a second thought to. Initially that was terrifying; change and the forced exploration of the unknown is seldom comfortable. But in the last two months I have had some life changing discoveries. I’ve realized that my attitude in spite of circumstances AND feelings is always a choice. That has been an empowering realization! I’ve learned to give pride the backseat and ask for help, and to embrace my own weakness and grief. I’ve found that it has been the “allowing myself to feel” experience as well as acknowledging that there’s actually no way possible that I can do this on my own, that has ironically, given me strength.
I’m nearing the end of my parenting season. My kids are on the cusp of adulthood (or so, they think.) At 20, 18, and 16, they’re at the point where they are deep into their own lives. I’ve heard it said you never end your journey as a parent, so I’ve segmented this into seasons instead. I would say the school years were one long winter season! Fortunately, I like snow skiing, so there were lots of times when we just skied through it. Other times, the school years felt like being stuck on a chairlift for hours with the wind and snow blowing through my bones. Yeah, parenting is like that!
Here are some random things that popped into my mind this morning as I reflected back:
Finding Support is a Blessing
In the early years of raising three deaf and hard of hearing kids, the most crucial piece for me was the support of other families with deaf and hard of hearing children. They say it takes a village to raise a child and you’ll have to create that village for your kid. I stayed open to meeting as many different families as possible. I didn’t care about the communication modes or methods, that wasn’t important to me. I wanted to connect over the common bond of raising our deaf and hard of hearing kids and getting through the occasional challenges. I found families everywhere– in my town, state, across the U.S. and thanks to the Internet, literally everywhere. I set up play groups in my home, at the mall, in the parks, and at the pool. We’ve lost touch with some of the families who we connected with during the early years and have formed second families with others. Each one of them had an impact on my kids while they were growing up. There’s that human need for connection and I just wanted to fill it on every level. We sometimes drove for hours to attend an event with other families. There were some days I questioned the purpose of stuffing three screaming, cranky kids into the car for a short event, but in every case it was always worth it.
Kids Need Kids
Which leads me to the next random thought: the important of peers. When I was growing up, I was the only kid with a hearing aid in my school–until I met my first hard of hearing friend, Shawn, in high school. Just seeing the hearing aids perched on Shawn’s ears wasn’t enough to get me to connect with her. If anything, I didn’t want to be reminded of my hearing status. Shawn and I were as different as night and day. Without the common bond of hearing aids, we likely would have never connected but a stubborn itinerant teacher insisted we spend time together. Shawn was a rebel, a “rough around the edges” gal. I was a Goody Two Shoes. She introduced me to brass knuckles and numchucks. I taught her the value of paying attention in class. We are still friends today.
At the time, I didn’t realize how important it was for me to connect with another person who also struggled to understand day-to-day conversation and understood the loneliness of being left out. So when my deaf and hard of hearing kids were growing up, I connected them with as many other deaf and hard of hearing kids as I could. And again, I didn’t care about how much or how little hearing they had, whether they had hearing aids, implants, or none, or how they communicated. My kids grew up with kids who cued, signed, spoke, or combined–you name it.
Deaf and Hard of Hearing Adults are Essential
I can’t stress this part enough. Connect your kids with deaf and hard of hearing adults while they’re growing up. If your kid wants to be a fireman, doctor, lawyer, pilot, pharmacist, engineer, janitor, entrepreneur, nurse, counselor, teacher, author, professional athlete, or Nobel Prize winner–go find a deaf/hard of hearing adult living that dream and connect your child to them. Deaf and hard of hearing adults are out there in all walks of life just like everyone else, but it’s essential for deaf and hard of hearing kids to know them, see them, and connect with them in some way. If you can’t find someone on the path your child wants to take, then perhaps your deaf/hard of hearing kid is going to be the one to blaze a new path. Someone has to be the first down a path that hasn’t been taken before–perhaps it’s going to be your child.
Last, but Not Least
For years, I tried hard to blend in, fit in, and fly under the radar while growing up hard of hearing. After I became deaf as a teen, I changed my attitude and embraced the journey. There’s a line from the movie, “What a Girl Wants” and this line is something I’ve been telling my kids for a long time:
“Why are you trying so hard to fit in when you were born to stand out?”
Our kids were born to stand out. Let ’em shine!
Director of Deaf and Hard of Hearing Infusion
Hands & Voices Board Member