Posts Tagged ‘Family Support’
At birth Jaden had a hearing test like all newborns in our state and he failed; two weeks later he had a repeat test and he passed (or so we were told). The next several months went by without incident but at about 9 months, I felt he was not developing the way he should. Jaden was making milestones but later than most kids do.
At Jaden’s one year check-up I brought up my concerns to his pediatrician. it was shortly after this that Jaden began Early Intervention services. Jaden began basic skills, physical and speech therapy. Closer to 2 years of age Jaden also began occupational therapy. Jaden’s days became filled with what I call “structured play”; every day of the week sometimes more than once a day, Jaden had one therapy or another.
It was by accepting the fact Jaden was not quite where he should be and by being willing to allow professionals into our home that we were able to start getting Jaden caught up. He went from a boy not walking to one who could take steps and eventually run.
With the help of his therapists Jadan was making progress in most areas but his speech had not shown significant improvement. Between 1 and 2 years of age, Jaden had 3 hearing tests all of which came back inconclusive. Just after his 2nd birthday Jaden had an ABR and that is when we found out about his hearing loss. Jaden has a severe to profound hearing loss in his right ear and a moderate hearing loss in his left ear. He was fitted for hearing aids the same day he was diagnosed. That day I was not upset; rather I felt relieved and almost vindicated. I knew there was an issue and now I had the answer; we could begin to help Jaden in ways that we had not helped him before. Finding out about Jaden’s hearing loss is what I call the first half of the puzzle that is Jaden. His hearing loss did not explain all of his quirks, such as low muscle tone and feeding issues, but it did explain why he was not talking.
Within a week or two of Jaden being diagnosed we were put in touch with a teacher of the deaf for infants; she was a blessing to our family. She began working with not just Jaden but our entire family once a week and what a difference it made! Jaden started picking up signs right and left; especially signs for his favorite things like milk and cookies. Now that Jaden had hearing aids, with the help of his speech therapist, his speech began to improve too. Okay, so he was not talking yet but he was babbling which is something he had not done before.
In January of 2010 Jaden started at Little Listeners Pre-K class at the NYS School for the Deaf in Rome; since then there has been no looking back. Sending our not yet 3 year old son on a bus to a school about 30 minutes away to attend a full day of school was an adjustment for the entire family but it has been one of the best choices we have ever made for him. Jaden was in a small Pre-K class with a wonderful teacher and teacher’s aide. At school Jaden also continued to get speech therapy from an amazing therapist every day of the week along with getting occupational and physical therapy both several times a week from great therapists.
It is with the help, knowledge and daily communication that our family had with his team that blessed us with a whole new little boy. During his pre-k years with the help of his teacher and speech therapist Jaden went from a boy whose number of words could be counted on one hand to one who talks and talks and talks. I never thought it was possible but there are days I crave silence; what a wonderful ‘problem’ to have!
When Jaden was almost 4 years old, he was diagnosed with a genetic condition called 22q Deletion Syndrome; this is the 2nd half of the puzzle that is Jaden. We are fortunate in that Jaden does not have many of the health issues that others with this condition do. Though this was not something I considered to be good news, it is something we are fortunate to know for it explains many of Jaden’s quirks; such as feeding issues which he no longer has and weak muscle tone and fine motor skills which we now know he will likely always have.
Over the past several years Jaden has blossomed into a funny, smart, confident and witty little boy in large part thanks to the knowledge that we have been fortunate enough to find out about him and being willing to accept the help and information that others could give us.
Today Jaden is 9 years old and in the 4th grade. Jaden’s newest adventure began in September of this year. Jaden has entered a mainstream school setting in our local school district (New York Mills). We are fortunate in that Jaden has many of people rooting for him. Our family has had and continues to have tons of support from individuals that have worked with Jaden in the past as well as those that are new to his team. Jaden seems to be settling in nicely to his new school and he’s even joined drama club and band. I’m sure there will be some bumps in the road as Jaden embarks on this new journey however, we have every expectation that Jaden will continue to thrive and excel at his new school.
I think Jaden’s story shows that the saying “Knowledge is Power” is so very true; accept the knowledge that others can give you about your child, embrace it and use it to help your child. For our family, it is the knowledge that we have been given about Jaden, both good and not so good, that has allowed us to help him become the wonderful boy he is today.
My name is David Cluff and I am deaf, and this is my story.
In March of 1993 I was born with a virus called Cytomegalovirus, which is known as CMV. This virus has many side effects and doctors thought I might not survive. I was born pre-mature and despite what doctors initially thought, I was born healthy. I was welcomed by loving parents and would eventually be the oldest of four children.
My childhood was not like most kids growing up. At age three I was diagnosed with hearing loss and fitted with my first set of hearing aids. At age six, I woke up one morning and any hearing I had the night before was completely gone. Just like that, something that I cherished so much was gone. My world had changed in a matter of moments. I felt broken, unsure, and I missed the way things used to be.
Shortly after losing all my hearing, I was given the option to receive a Cochlear Implant. After lots of prayers and help from family, friends and people I hardly knew, I got my first Cochlear Implant in October of 1999. Shortly after recovery, I got the Cochlear Implant turned on–and very quickly, my ability to hear my parents, my own footsteps and the water running was restored.
Did that magically make everything perfect again?
Rather, it was the beginning of a journey of faith as I re-learned to hear the world around me. It was like a matching game of “what sound goes with what.” As the years went by and after a major move to the great city of St. Louis, Missouri, I was given another opportunity to receive a second Cochlear Implant for my left ear. It was my dream to hear with two ears again. I was once again faced with the challenge of re-learning to hear. Hearing with two ears is not the same as hearing with one.
Back in 2007, I was working closely with my surgeon, Dr. Hullar, on a five-year research study. He became a good friend and a great mentor to me. During one of the meetings in his lab he overheard my parents and I brainstorming on what project I should do for my Eagle Scout rank in Boy Scouts (BSA). Dr. Hullar knew my background in computers and said, “Why not build a website for deaf teens like yourself?” It was like a huge light bulb went off and I found something to be passionate about. Before I could actually start the project I had to get it approved by the BSA board. I was nervous as I really wanted to do this project no matter what and being able to do it as my Eagle Scout Project would make it more meaningful. The board members approved the project.
Today, I am happily married to my best friend and a father to an energetic 8-month-old boy. Even as an adult, I am still learning to hear the world around me and cherish every moment I can. I have come to realize that life isn’t supposed to be perfect; rather, it is like a puzzle. When you get a puzzle in a box or bag you now have the choice to either put the puzzle together or let it sit on the shelf. My challenges came like a bag of puzzle pieces. So many pieces that it often felt like it would take years to put each one together to match the master photo. Yet, I had a choice. Am I going to let it sit on the shelf and let my challenges hold me back or am I going to do my best to put the puzzle together? Once completed you see the whole picture; but notice how there are lines going all over the place from each puzzle piece. It is not seamless at all, but it is also not broken. That is like life. We are given pieces of a puzzle and with time, we come to see the masterpiece.
My master puzzle is still in the works and I am seeing parts of it coming together–and that is when I know that everything is all right and that everything will work out.
Read more about David’s story, visit: www.davidbcluff.com
Thirteen years ago I was grieving the loss of having a child that could hear. My daughter had just been diagnosed with a permanent hearing loss. I was facing a lot of decisions to make about amplification, communication, doctors, and therapies. I left the audiologist’s office that day with a hundred emotions swirling inside. I realized my daughter had most likely never heard me say “I love you” or calling to her from the another room in the house to say, “It’s okay, Momma’s right here” while she was crying. I also realized that day, that her life was exactly the same as the day before. She was happy, smiling, still had her favorite foods, toys, books, and TV show. Most importantly, she knew she was loved and she knew how to love as well.
My life changed that day, not hers.
Shortly after that day, my husband and I were contacted by professionals to help us know what to do. We were provided guidance and information, but ultimately, we had to make choices for our daughter and our family. We were not aware of the conflict and controversies surrounding communication and amplification options for deaf or hard-of-hearing children. We simply made decisions that felt right to us for our family and our daughter.
We continued to make decisions that were right for our child and our family. We were lucky though, we knew we had options and choices. Part of this was because of our location, part because we worked with experienced and knowledgeable professionals, and part because we had support–family and friends were beside us to support our decisions.
A couple of years later I found myself working as a parent mentor. Somehow I had become the parent that others went to for advice and guidance. During those two years, the job brought me into a world of differences and really taught me how to support parents who have a different perspective and those who made different choices than I did. That shift in focus was hard for me. Some days I didn’t understand why parents made the choices they did for their child and family. When I took the time to listen, and I mean really listen and hear what parents were telling me, I realized we were not all that different. We had the same goals for child and family, the only difference was the path we chose to get there.
One of my job duties was to establish a support program for parents and families of deaf children. My job was to provide support without bias for families of all deaf children regardless of the choices they made. This is how I found Hands & Voices.
Hands & Voices was founded by parents who were tired of the communication wars. They quite simply wanted to support each other, because raising a deaf or hard of hearing child alone is hard. The parents involved wanted unbiased and unbridled emotional support. A group of parents guiding parents.
The first Hands & Voices conference I attended felt like home. In my life as “Reagan’s Mom,” I often found myself explaining the choices we made for our family and why, but when I attended the Hands & Voices conference, there was no need to explain myself. No one there judged us, disagreed with our choices, or disrespected our choices. Everyone had open arms and welcomed me and my family, because now we were all family.
Hands & Voices has shown me that it is okay to have my own opinion and personal belief system, but also how to set those aside and walk beside any parent of a child who is deaf or hard of hearing. Hands & Voices has a wonderful way of respectfully accepting individual differences, while focusing on our common goals to achieve success-individually and collectively. We do not let our differences separate us, but instead our differences bring us together.
Thirteen years on my path raising a deaf child and 11 years into my role supporting parents has made me realize two things; there is no fork in the road and we are all sharing the same path. We all want happy, well-adjusted kids. The path we walk is shared with parents, families, children, friends, Deaf adults, doctors, audiologists, speech-language pathologists, teachers, interpreters, and more. I urge you to take the time to talk to and listen to the people sharing your path and find the shared respect and support we all need.
There is room for everyone on our path.
As Board President of Hands & Voices Headquarters, I was honored to represent H & V through a Hear the World Foundation Grant, by joining U.S. educators and audiologists who have the common goal of sharing strategies on how to foster language development in children who are deaf and hard of hearing. Dr. Christine Yoshinaga-Itano, Audiologist, Teacher, and Researcher, periodically leads a group in conjunction with Soaring Hope Mission. This year, our team of US, Chinese and Taiwanese professionals traveled to Nanjing for a conference with China’s Newborn Screening Committee and then on to Yinchuan to directly work with 150 children, parents and staff in a regional Rehab Center. Phonak graciously donated hearing aids and local representatives to join us as well.
As the Director of MN Hands & Voices at Lifetrack for over 14 years, I have had the pleasure of working with the most inspiring parents. I’ve been bolstered by the wisdom and life experiences of adult role models. I have also been humbled by the passion and dedication of professionals in the field.
As a parent of a young adult who is deaf, my role on this trip was intended to be that of mentor and counsel, based on my personal and work experience. At Hands & Voices, we use the term “Guide By Your Side” to refer to our trained Parent Guides who help families navigate next steps. In China, however, I learned far more than I can ever could impart. In the end, it was I who was “Guided By China.”
A blog of the trip can be found here: Guided By China
During a break at a recent Hands & Voices staff and board meeting, I took a good look around the room. Some of the staff and board members were engaged in one-on-one conversations. Others were in groups.
Over the years, every single person on the board and staff came to Hands & Voices because of one thing: a passion for families with deaf and hard of hearing children.
Isn’t that so frou-frou? Passion? I mean, come on.
Dedication. Involvement. Contribution. Those are certainly words to describe people who serve at every level of Hands & Voices.
What’s the core of what we do at Hands & Voices? What are we about? Who are we about? What’s our mission? What are our values? What is the “why” of what we do?
To those who may not be deeply familiar for what we stand for and how we support families, there’s often the misconception that we’re all about choices for families. That it’s all about communication methods and modalities.
But it’s not that.
It’s all too easy to get hung up on trying to balance the dance of equality among the choices out there. When you do that, you never win. It’s never balanced. It can’t be. This whole journey with deaf and hard of hearing children can’t be summed up by communication alone. To do that is to compartmentalize the journey.
At Hands & Voices we are sometimes bombarded with finger-pointing by others who insist we must remain neutral, balanced, and equal on every level in our daily work.
Instead, our work goes deeper than that. It’s about the emotional ups and downs of being a parent and understanding this journey. It’s about reaching out so that no one has to journey alone. It’s about providing support during the rough times and celebrating the joys.
Call it frou-frou if you will. We call it passion. It’s the fuel that drives us to do this day in and day out–without always having the funding to do so.
Passion is what keeps us up at nights responding to a parent who is frantic about the next day’s IEP meeting.
Passion is what allows us to have the energy to drive three hours to host an event for parents and children.
Passion is what pushes us to share resources, knowledge, and encouragement so other parents can be empowered on their own journeys.
Mom to David, Lauren, & Steven
Co-Coordinator of Deaf and Hard of Hearing Infusion at Hands & Voices
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
I vividly remember the day we learned our son was deaf. New parents as we were, I remember being unsure of his future, feeling crushed by the decisions we faced, and feeling so incredibly alone. But what slowly built up our strength in those early months, throughout his life, and even today is the reassurance that we are, in fact, NOT alone. We learned that there are families all across Minnesota, all across the United States, and the world on the same journey. And when we come together and start to share our experiences, the differences between our geography, our cultures, our choices and paths…fall away. What is left is this common bond of loving our child so much and our need to reach out to each other for acceptance, wisdom, guidance, innovation, resilience, and even laughter. Hands & Voices means my family and most importantly, my son has a positive, up-lifting community who sees the gifts he brings and together, celebrates them.
Connect with Hands & Voices chapters around the world via Facebook:
We’re parents and families with children who are deaf or hard of hearing (DHH). Most of us are hearing ourselves (95% of us, according to the statistics) and our DHH child might be the first person with hearing loss we’ve ever met (not counting Great Aunt Louise).
Wherever you are in your parent journey with your child…whether you’re talking, signing, cueing or combining, or even if you have no idea yet what the best communication mode will be, you’re welcome here. Whether you’re child is newly identified with a hearing loss or a senior in high school, you’re welcome here.
This is Hands & Voices…we’re parents who are trying to make the best decisions we can for our children from birth until they leave the nest. It helps to share with each other so we started this blog.
If you want to know more about our organization, please visit the official website at www.handsandvoices.org
Welcome to this parent community. Please be nice. We’re all trying the best we can and would never hurt anybody’s feelings intentionally, so thank you for being sensitive with your remarks to the diverse perspectives shared on this blog. We reserve the right to moderate comments and will not publish anything that gives offense. If we have missed the mark for you, please let us know and we’ll try harder the next time.