Archive for the ‘Family Support’ Category
For me, being deaf is a way of life. I was born hearing, and began losing my hearing as an infant. My parents couldn’t get a proper diagnosis until I was almost two and then I was fitted with hearing aids. My parents chose to raise me with an emphasis on spoken language, using speech therapy, hearing aids, and FM systems while being educated in the mainstream setting. My hearing became progressively worse and I became profoundly deaf by the time I was nine years old.
At that point, relying only on auditory information started becoming more and more difficult. By fifth grade, I began learning sign language and using an interpreter, which continued through high school and college. I went to college and earned my BA in Deaf Education, Elementary Education, and Special Education. I moved to the Chicago suburbs and began my teaching career working with deaf students who also had emotional & behavioral disorders and I learned a LOT about behavior management. At the same time, I began working in Early Intervention and became credentialed as a Developmental Therapist-Hearing (DTH). Over the years, I went back to school to get my Masters in Early Childhood Special Education and have taught in a variety of schools including residential, self-contained, resource room, and itinerant services. I had the opportunity to start moving into more administrative roles in the schools as a Curriculum Coordinator, Assistant to the Principal, and am now Director of Student Support Services in a Montessori School that has an embedded Cued Speech program. In addition, I am also the Coordinator of CHOICES for Parents, a statewide parent support program for families of deaf and hard of hearing children. Plus, I’m pursuing my doctorate degree in Special Education with a concentration in Deaf Education. I am very interested in parent support, early intervention, language acquisition and literacy.
I married a hearing man and together we have four beautiful children, all hearing. However, two of them have been involved in the early intervention system and have had IEPs in the mainstream setting. I feel like I’ve come full circle in my life in that I’ve experienced all educational settings and communication modalities, both professionally and personally. I also feel like I’ve been on all sides of the table at the IEP, as a student, parent, teacher, advocate, and administrator.
My personal and professional experiences lead me to the point that I most often emphasize when I work with families of deaf and hard of hearing children: when your needs change, your choices can change too! Too often, people get stuck on one way to do things. If something isn’t working, why not explore something new? If something is working, why not add something new? Because I can talk, sign, and cue, I have met so many different people and have had my life enriched in so many ways. I am able to be a part of the hearing world, Deaf community and Cued Speech community. There is no one size fits all. There never has been! What works for your family is what works for you and your child. Keep an open mind and be willing to explore Sign Language, ASL, spoken language, and Cued Speech options!
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
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
The blogs listed below are written by parents of deaf and hard of hearing children. The blogs are shared as a resource for families with deaf and hard of hearing children and do not indicate an endorsement by Hands & Voices.
When a child is diagnosed with a hearing loss, the first thing that tends to happen is the quick referrals for more tests and intervention for the child. This is all good and well, we need to support and help the child as best we can. BUT, what about the parents, what about the family? Are they not at the heart of that child’s world?
The more I talk to, and read about families raising deaf children and the more I reflect on my own experience, the clearer it becomes: isolation.
Deafness, often referred to as the silent disability, is not only silent for the child, but in a sense, this initial diagnoses creates an isolation, a silent vacuum for the parents and families.
Where do you begin when you learn that your child can’t hear? You are sent from test to test, a long list of professionals, therapies and referrals. All focused on the child.
Yet, sitting in the seat, is a parent facing a diagnoses of their shattered dreams. Their hopes crushed. Staring at a child, who just this morning, looked as if they could hear the sweet “I love you” of the parent’s voice…
Sitting in the seat, a parent detaching from the world around them, a parent preparing for auto-pilot, shutting down their needs, ignoring their fears, doing what is expected in a haste of the child’s immediate needs…building up the invisible barrier. A parent, insulated by the isolation and detachment.
Sitting here, reflecting on the parents met, discussions had, and personal articles read. The hints of isolation need not be there!
All we need is for someone to acknowledge the immense power of a diagnoses different to our dreams and realities. We need the humanity behind the diagnoses. A different approach, a way to bridge the gap that often results in the complete isolation a parent feels when their child is diagnosed with hearing loss.
Who do we turn to, who will understand the thoughts, fears, countless questions and emotions rushing through our every being? Where do we find “others” like us?
We need a consistent sensitivity towards the parents before rushing off for more tests and referrals. Acknowledge that any diagnoses, different to what we know to be perfectly healthy, is enough for us to shut down and go into auto-pilot…
We need to move towards holistic medical practices, where we no longer just see to the physical, but where we also acknowledge the psychological and emotional impact a diagnoses have on the parents, and the family.
What if it became standard practice for ALL pediatric facilities to have direct referrals to trained counselors/parent support groups who can guide and support families when their child is diagnosed with a disability/illness?
Is it not true that the parent’s well being is crucial to successful intervention and management of any diagnoses that impacts on a child’s health, development and growth? No parent should navigate their journey in isolation…silence can be deafening to a mother’s soul and a father’s heart!
The Internet is wonderful, but it can also be misleading for parents who are new on the journey. We need to connect with real people, people who can relate, families who are living what we are hearing for the first time. Isolated in their silent need, let us parents, who have traveled this journey, reach out and break the barriers of silence…
I found myself missing the child I once knew. The one I always referred to as “happy-go-lucky”, the one who loved my cuddles and giggled through my delightful butterfly kisses!
You see my son was diagnosed with delayed speech and language mid 2011 and then mild hearing loss at the end of 2011. The 6 months that followed his diagnoses were a roller coaster of fluctuating loss, pushing for intervention and finding support through online communities!
All this while my son spent the better part of 2012 not hearing his teacher. And me, yearning to connect with other parents.
All I found though were resources referring to profound hearing loss…believing that we did not fit the “category” of needing support since we were fluctuating between mild and moderate. Even our government hospital agreed that my son was not a “candidate” for intervention services.
It angered me that my son’s challenges and diagnoses could just be dismissed by the flick of the wrist. File closed. Move on. Come back in a year! Our system disappointed me, it failed us, and to this day, still continues to fail many families.
I made a decision to take ownership of my son’s challenges. My son’s worth was NOT going to be defined by his level of hearing loss!
I enrolled him at a school for the deaf, where he received the necessary intervention in 2013. He thrived! His language became more colorful and bright! Leaving home at 5:30am and arriving back after 6pm; a four hour journey everyday, was well worth the sacrifice.
Today, my son has a dedicated “Team Kai”, he attends mainstream school and still continues to receive intervention services privately. He wears bilateral hearing aids and uses his FM system in the classroom. His teachers are supportive and accommodating. He is the only deaf/hard of hearing child in a school of +/- 900 students!
So you may wonder, why do I miss the child I once knew, the “happy go lucky” boy? Sensory Processing Disorder (SPD)!
His hearing loss is no longer our biggest challenge. His SPD and behavioral responses is what’s got me “missing” the child I once knew…he has become my four seasons in a day…I never know what to expect when I get home.
Watching my child go from a loving happy go lucky boy to an angry, aggressive and intolerant child during a sensory meltdown is not easy; it is extremely unsettling. I am however encouraged when his teacher tells me how he advocates for himself at the age of 7. He asks to go for a walk where he can have some time to self regulate when the classroom environment becomes too noisy, or the tapping of a pencil on desk is making him feel “all funny inside” and sitting is becoming unbearable. He reminds his teacher to use the FM system when she forgets, and he works exceptionally hard!
Together we’ve been working on how to best “manage” his reactions to overwhelming sensory input. It’s our mom-son adventure!
His resilience has inspired me to reach out to other families. In 2014 I founded Decibels of Love, a parent-to-parent support group for families raising deaf/hard of hearing children. Together we grow. Together we empower. I believe that the smallest act of kindness CAN change someone’s world forever. All it takes is one family to advocate, educate and empower an entire community!
Early on in my own life journey I promised myself that I would always try to live my best life even in my weakest moments. It is this philosophy that’s allowed me to maintain my sanity, to draw myself closer to who I am and strive to be the best parent that I can be…
One would think that growing up with a hard of hearing father would have prepared me for this journey, but this could not be further from the truth. Through my son I realized that I also had a level of ignorance. It is only through my son’s diagnoses that I could truly understand my father’s world…a world of silence embraced by the knowledge that all things are possible if you believe and have the courage to be the change…
Last weekend my husband and I hosted a couple friends for dinner and an evening at our house. The wife in this couple is deaf and her husband is a sign language interpreter. As we sat down at the table to eat an ease fell over me. There was no need to feel like I needed to fake understanding with nods or smiles. I have a moderate severe hearing loss and I usually feel anxious before a meeting like this one. That night was wonderful we had something in common, lack of hearing and knowledge of lack of hearing.
We need to find where we belong. We need to find a community or a group where we all get each other. If that group is about sports, animals, children, or in this case hearing loss. Having a group or even a few individuals that understand is a comforting thing. It doesn’t turn into an embarrassment when you ask for something to be repeated or reworded. You don’t get the dreaded “never mind.”
I grew up in Minnesota in the metro area. I was a child with an ear infection every other day it seemed. Ear tubes put my ears more times than I care to count. I know I grew up with a hearing loss now that I think back on my childhood. I never understood how people could understand a whisper. Someone putting their mouth to my ear was just hot air I could feel. Was that how everyone experienced this? Being at a friend’s house and having them all talk at once or talk with music playing, none of this I could understand. I wondered why this seemed so easy for other people. Why did whispering between girlfriends seem fun not an anxiety filled moment. As I grew up and went to college (majored in Communicative Disorders) I realized more and more that yes I had a hearing loss. I just had to get to the point of acceptance.
The past couple years I have come out of my shell and embraced hearing loss as best I could. Hearing aids were purchased. My secret was out. I joined a couple groups that deal with hearing loss and being hard of hearing. I started to put my feelings on to paper or a computer in today’s vernacular. I started my blog Musings of a Momma. I started this blog as a stress reliever–writing in the evenings. When my hearing took another dive down, I decided to write more and focus more on being a hard of hearing mom. My writing got notice by the HearStrong Foundation where I was named a HearStrong Champion. This has to be one of my proudest days behind the birth of my children.
One thing I wanted for my children was to make sure their hearing is on track. I remembering taking my daughter to an audiologist and she tested around a -10db across the board. I guess she is hearing fine! My son came along five years later. He didn’t babble much or start talking till three years old. I had some people telling me autism and some telling me he couldn’t hear. We pursued both paths with him. He was found to be on the autism spectrum high functioning. When we went forward on his hearing we found out he had a mild conductive hearing loss. We continue to have his hearing checked every six months. It has dropped at times and we have done tubes, and adenoids and tonsils out. I just took him to the audiologist last week and his hearing has dropped another 10db. We are off to the doctor this week to see if something medically can be done. He has had no ear infections or fluid in his ears so I am stumped. Then we head back to the audiologist. Just a wait and see with him. He does use the FM system at school where he is in 1st grade.
A great resource we were told about was MN Hands and Voices. Our family attended a family event last spring. Our whole drive my husband and I wondered if we would fit in, our son only has a mild loss. What we found was open arms of acceptance and a wealth of information. We learned a mild loss is a loss and it does affect a child at school. We had some IEP questions answered and found some new friends in the process. It was like the dinner we had last weekend we found that place we belonged. We found a place that understands our questions, doesn’t get annoyed with the What?? If you didn’t hear something right away, they got it. I want my son to know there is a place that we belong and people that understand. MN hands and voices has been that place for our family with our son this past year.
Sara B Lundquist
Bridget Ferguson is the Project Manager for the Family Sign Language Facilitator Service. Her husband, Oliver, is a Visual Effects Technical Director and has worked on major films such as The Hobbit and Avatar. They are the parents of Zoe and Elijah and reside in New Zealand. Bridget shared her thoughts about parenting on her blog and gave permission to share it here:
I’ve been reflecting on what, if anything, I would do differently if I had my time again as a mum of a new born baby. I vividly remember that overwhelming sense of excitement, fear, joy and exhaustion! I remember the day that it hit me that this little life was utterly dependent on us.
Our first child, Zoe, was born in 2001, at that time Wellington did not have newborn hearing screening. In a sense I feel fortunate that we did not have to contend with the numerous professionals, appointments and conflicting advice that often follows the newborn hearing screening. We had 15 months of just bonding and growing together as a family. Language was acquired in a playful way in our home and in the wider community. Our two children were born into a bilingual/bimodal home. I am hearing and my husband, Oliver, is Deaf. We have two children, Zoe is Deaf and Elijah is hearing, NZSL is their first language and by the time Zoe was identified via an ABR, she was signing in sentences!
Prior to having children I had worked as a sign language interpreter and a teacher of the Deaf. But my most rewarding and challenging role has been as a mum. All the book knowledge and experience of working in schools and in the community didn’t prepare me for the parenting journey!
One of the struggles we had early on, when Zoe was very young, was finding a community of families, using NZSL. We struggled to find deaf or hearing children with whom our children could play, interact and sign with. We relocated to Sydney Australia and found an amazing community of parents and children who had sign langauge as a language in their homes! This made a world of difference. Both of our children attended a bilingual pre school. Zoe then went onto a bilingual primary school in Sydney.
Even when we returned to New Zealand and no longer had the option of a bilingual education setting for Zoe, the thing that has made the mainstream schools more accessible has been having Deaf professionals involved in the school in a variety of ways and having a community of users who have made the effort to learn NZSL.
When I reflect on Zoe’s primary school years, the biggest priority in the mainstream schools has been friendships and social acceptance. There was often a greater focus (by the professionals) on learning goals and academic learning, however we found very quickly that if Zoe was not happy and was having issues with friendships then her academic learning was taking a back seat anyway. So it made sense to us to put the effort and focus into ensuring Zoe felt confident and comfortable at school.
Her final two years of primary school have been amazing. She has been at a primary school that has adopted NZSL as the alternate langauge for the years 5-8 students. This has created an environment where sign language is a language seen throughout the school not ‘just for the deaf student ‘.
The notion of inclusion has been made more of a reality via the provision of a professional educational interpreter. This has enabled Zoe to relax and learn alongside her hearing peers. And with the peers also having the opportunity to acquire NZSL, it has enabled Zoe to develop real friendships.
In our home we want to raise our children to know that they can do what ever they put their minds to, and to instill in them a sense of confidence and pride in their bilingual/bicultural identities. Oliver and I work hard to ensure that both children have access to NZSL and English. Within our bilingual/bimodal house there are a number of things that we do that I believe brings us closer as a family unit and adds more clarity to our communication.
Signing at the dinner table- when seated around the table for dinner, NZSL is the language for conversations. This is because it is accessible to all of us and ensures that no-one is left out.
For families who are starting to develop NZSL in the home, this can be a great way of developing confidence and practice in the language. The conversation is often predictable and provides a safe setting for the family to all give it a go.
Storytime in sign- bedtime stories were always signed to Zoe. For Elijah he would choose particular stories to be read in spoken English and others he preferred to have signed to him. Again for a family starting out with developing NZSL, learning a particular story, rhyme or song, can be another way of developing confidence in the language and bonding with your children.
Signing around the child – I believe it is important that deaf children see conversations around them and that they are aware that there are many users of NZSL – both Deaf and hearing. It is important that parents take time daily to have conversations in sign language, not necassarily with the deaf child, but with hearing children and each other. This provides the deaf child the opportunity to ‘over hear’, ask questions and learn about the world around them. In the same way that hearing children pick up information incidently from conversations around them.
Seeking out Deaf examples- we are always exposing our children to Deaf examples in all walks of life. There are so many benefits to this: for Zoe it provides her more opportunities to have greater aspirations and a variety of role models. For Elijah it reiterates the validity of his first language and a sense of pride that he is connected to the Deaf world. For the teachers working with Zoe and the general hearing community, seeing successful Deaf people in a variety of roles broadens their understanding of what it means to be Deaf and raises their expectations of deaf children.
As parents there is nothing we want more than happy healthy children. We aim to have an environment that enables our children to communicate with us about anything. I love that Zoe and Elijah can sit with us at the end of a day and tell us about the highs and low of their day.
I am in awe of Zoe’s perseverance. As inclusive as her school is she is still faced daily with a predominantly hearing environment and it is exhausting at times. There are many days when she just wants to be in a Deaf environment and access information directly (not via an interpreter). Her experience this year attending the WFDYS children’s camp at Gallaudet University, was incredible. This was her first time staying away from us for that long. She found it challenging but again her perseverance and courage served her well. She has connected with deaf children from all over the world. She has met Deaf leaders and seen parts of the world that have so much meaning to her and have inspired her to strive to get back to Gallaudet University in the future.
For families who are beginning to develop NZSL I believe it is important that they feel connected and comfortable with the language. This happens by having a connection to a community of users of the language. Having access to Deaf adults, hearing signers, deaf and hearing children who use NZSL, means that families can relax and enjoy learning NZSL alongside their child. This also provides numerous opportunities to practice and refine their use of the language. Although Oliver and I were bilingual before having our children, it was having access to a community of signers at a variety of ages, that made a huge difference to how our children acquired the languages.
Our parenting journey over the past 13 years has been a roller coaster ride that has seen us relocate to different cities in NZ and even to Australia, in search of what we wanted for our children. I have no regrets and I am thankful for the lessons learned with each move we have made. This year we have entered the ‘teenage’ years I am again feeling that overwhelming sense of fear, joy and exhaustion…but most of all excitement about what the future holds for our bilingual/bimodal children!
Read the original post on Bridget’s site: Reflecting on Our Parenting Journey So Far
In July, 2014, Hands & Voices (H&V) was awarded a grant through the US-Russia Peer-to-Peer Program Grant administered through the U.S. Embassy. With over 240 applicants, Hands & Voices was one of only 26 selected. The grant was written in partnership with the St. Petersburg Early Intervention Institute (EII).
The goals of this project seek to expand the knowledge and experiences of parents of children who are deaf and hard of hearing as well as the professionals who support them, and to share cultural perspectives and recommended practices in early intervention and parent to parent support–with the aim of improving services and child outcomes. The Partnership is based upon cultivating a parent to parent organizational system that provides emotional support, information dissemination, and modeling. The partnership is focusing on three distinct activities: translation of materials, direct exchange of knowledge and fostering of relationships through on-site visitations, and online exchange of knowledge and experiences.
The study visit to the U.S. by the Russian parents and professionals included an opportunity to attend the Hands & Voices Leadership Conference in Savannah, Georgia from September 19-21st, 2014. An additional day of exchange to forge partnerships between the two groups was included immediately following the conference. While parents have the most expertise about the reality of raising a child who is deaf or hard of hearing, they are rarely given the opportunity to be trained to be meaningful participants in the systems which serve them, especially regarding the unique language, communication, emotional, and educational considerations associated with hearing loss. The 11th Annual H&V Leadership Conference is a two-day training that enables parents and professionals to increase their advocacy skills and understanding of the systems they seek to improve. Professionals and deaf/hard of hearing community members also attend to learn about parent-perspectives on the systems they represent. This conference was able to create a platform of training from which the Russian partners participated, interacted, and learned from the H&V leadership attending. They were also contributors and role models for the U.S. and Canadian participants in the work that this group is doing in Russia.
The participants from the U.S. then traveled to St. Petersburg to attend and present at the “Communication, Sound, and Light” conference, October 20th – 23rd, 2014, at the Pavlov Institute of Physiology, Russian Academy of Sciences. This Institute is dedicated to the memory of Ludmilla Chistovich, Valerij Kozhevnikov and Andrey Popov. The laboratories of Ludmilla Chistovich and Valerij Kozhevnikov specialized in speech perception. Beginning in 1960,they worked in close cooperation with researchers from the U.S. (e.g. MIT), Sweden (e.g., Kungliga Tekniska Högskolan, known as KTH or the Royal Institute of Technology), France, Germany, Japan, and the U.K. These connections and friendship helped to start early intervention programs in Leningrad/ St. Petersburg in the late 1980’s to early 1990’s.
A parent workshop was held in St. Petersburg with over 35 parents attending. The U.S. team shared insights into the parenting journey and the building blocks of establishing parent-to-parent support. Karen Putz, one of the members of the US Team, also was able to enjoy a dinner out with several deaf moms and an evening of performances at the St. Petersburg Deaf Cultural Center – bridging and building relationships among other Deaf adults. She discovered it was rather easy to pick up Russian signs and vice versa.
As the team shared a dinner together on the last night in St. Peterburg, spirits were high, and you could feel the good energy at the table. After the Russian team had been to the U.S., and now our U.S. team had just spent a week in St. Petersburg – we were familiar with one another and enjoyed sharing our hopes and dreams for our children who are Deaf/HH. We were celebrating our week of hard work and what was to come.
The waiter approached the table with a bottle of vodka. It had been sent over by four gentlemen who were sitting nearby. One of the men approached us and made this speech: “I can see that your group is working well together. I am so moved by this exchange and the feeling that you are working together between U.S. and Russia. I want you to remember when you go home, that the Russian people are very interested in collaborating with U.S. Do not believe everything you hear on TV. I honor and toast to what is happening at this table right now.“
He was very emotional as he gave this speech, and those of us at the table felt the impact of what this project was producing–not just for our organizations and for our mission of improving the lives of Deaf children and their families–but that the opportunity for us to work together is building bridges beyond this grant. That we as human beings must bridge the gaps wherever we go – to stay focused on our common themes and common experiences.
The Russian – American exchange of families who have children who are deaf and hard of hearing will continue their collaboration by on-going peer-to-peer discussions and support throughout the partnership via live webinars connecting families during the partnership.
By Janet DesGeorges, Molly Martzke, and Karen Putz