Archive for the ‘Parent Information’ Category

A New Book for Families with Deaf and Hard of Hearing Children

April 11, 2017

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Maria Renninger recalls seeing the word “refer” flash on the screen after her baby girl’s hearing screening hours after birth, and wondered what it meant. “Refer to what? The operating manual?” She found herself wishing for an operating manual many times during her early years as a new mom and on her unexpected journey raising a child who is deaf or hard of hearing.

This is just one of the 26 personal reflections shared in a new book by Hands & Voices, We Are Hands & Voices: Stories for Families Raising Children Who Are Deaf/Hard of Hearing, from moms and dads raising children who are deaf or hard of hearing, with a few insights from young people finding their way, and six gems from women who are Deaf or hard of hearing themselves.

“It wasn’t cheating, it was playing fair,” notes Stephanie Olson, when her sister and brother signaled her how to get to home base during nighttime games in her neighborhood, in the darkness only imaginable far from city lights. Over time, hearing parents learn much from their children and from adults who have hearing differences that begin to shed light on what daily life is like, and CAN be like, when we begin to experience the world as our children do. Playing fair means understanding access and appreciating differences.

Knowing that there is no better way to connect than the art of story, four experienced moms (Karen Putz,  Stephanie Olson, Janet Des Georges and Sara Kennedy) put this book together to shed light on the journey and to celebrate our children, who teach us again and again that “the little things are not little at all,” just as author and mom Bianca Birdsey says about raising her daughters who are deaf in South Africa in her story.

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Here is what others are saying about the book:

“I was overwhelmed when our daughter was diagnosed as deaf, and I searched for the stories of other parents who had helped their children navigate through a hearing world and lead productive, fulfilling lives.  It was these connections, like the ones detailed in “We Are Hands & Voices,” that allowed me to understand that I was part of a larger, welcoming community.  The powerful insights and wisdom you will find in this book will inspire you.  I wish it had been around 16 years ago!”

– Lee Woodruff, parent and best-selling author

 

“Positive parental supports is an integral part of a child’s life.  Having the support of other families who have walked a similar path, well, that’s priceless.”

 – Andrea Marwah, parent and Illinois Hands & Voices, President

 

“One of the best outcomes of a book of stories is that it illustrates the varying experiences, individual characteristics, and often unpredictable paths taken by individuals and families. Stories break down walls. In this book you will find that it is not hearing status that defines who these people are; rather it is their life experiences that shape who they become.”

– Cheryl Johnson, parent and advocate, Co-Founder of Hands & Voices

 

“These deaf kids may have a hearing loss, but their hearing loss doesn’t necessary mean that it has, controls, operates or owns them. This book has great and incredible insight on how our hearing loss doesn’t necessarily define us, but that we define who we really are.”

– Justin Osmond, member of the world-renowned Osmond Family, motivational speaker and author

The digital copy is available on Amazon: HV Stories for Families

To order hard copies or bulk orders:

We are Hands & Voices 2017 order form (1)

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Karla Giese: My Life in Full Circle

March 22, 2017

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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.

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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!

 

 

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Veditz: Online Classes for Families with Deaf and Hard of Hearing Children

March 6, 2017

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Born in the City of New York – The Bronx.

I was born hearing and had an ear infection that triggered hearing loss and raised in the city of The Bronx in one-bedroom apartment with just my mother–that has always been my story. I’ve always seen and knew how half of us as New York City residents struggle economically, make ends meet just barely, if at all, and most of us always feel this sharp uncertainty about the future, at least, it was for me growing up. For one, I was born to Deaf parents who moved to America from Puerto Rico. Both families were poor as my father’s side works as the landlord of a project apartment in the South area of the Bronx. My mother’s side is from the military.  Both of my deaf parents met each other at an oral school called “P.S. 47” public school in Manhattan. Both of my parents’ families speak Spanish. Come to think of this… imagine all of the communication, language barrier and not to mention, different cultures all combined in one family when both of my parents married each other. But, after turning one-year-old and my older sister, Jasmine, who is also deaf, at age five, both of my parents separated then eventually divorced. 

 

Life as of the Hard-of-Hearing Child and How I Unconsciously Code-Switch Two Languages and Modalities.

When I lost my hearing at 18 months old due to an ear infection. I had residual hearing that wearing a hearing aid, for me, is like from hearing completely nothing – no sounds to hearing absolutely everything! I embraced hearing and speaking. I loved going to speech classes during my school days. I’d sing like how I recorded my own voice signing in the speech classroom all by myself, now imagine those who really heard me singing across the elementary hallway!

But, when I didn’t want to hear… it was always my advantage, to have the choice to turn off my hearing aid, hear no sound, be completely deaf.  

 

What resource I had growing up as a city young girl, I could call my parents through the Telecommunication Relay Service (TRS), which is actually through the relay operator who would voice and translate in English for my parents via TTY. Also, I remember how almost all the time, I would be called to interpret for my older sister and parents at appointments, restaurants, movie theatres, many more. I also remember how my parents always said the youngest child “hard-of-hearing” and “very, very smart who can speak very well” when introducing me and my older sister to other people (poor my sister of having to grow up being compared to my abilities). So, all my growing years, I have always talked with my voice and sign but little did I know it is what we call “code switching”. I now understand why using both language at the same time is always a challenge because both language have different grammatical functions and rules. Therefore, the influence of speaking values that my deaf parents from their spilled over to how they raised me and my sister. Looking back, it is, indeed quite interesting that I do not see this life experience of an interesting mix of values in both worlds – hearing and deaf, as a bad thing but has become a resource for me in what I can use every day, especially, with my four CODA children and, of course, my love for music, always!

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Love for Music & Discovering ASL/Deaf Culture – Understanding & Navigating Both Worlds.

Since I mentioned my love for music. For me, music has always hold a connection to sound because I can hear, appreciate the sound of music, which grew that inner value for sound the of music. I love to listen to music (over many times), read lyrics to make connections and sign the words without realizing what it means to translate into a conceptually accurate in ASL. I also love to dance!

I knew many songs that were back in 80’s and 90’s, which were songs that are easier to follow compared to our music nowadays. The more I learn about ASL as its own language, I realized it a challenge to translate the actual meaning when signing a song because there are many different ways that depend on meaning. Then, we have to consider how words are interpreted and expressed in order to successfully deliver the same way from one language to another.

During college, I studied to be a Social Worker and the more I learned about my identity, who I really am and how I discovered ASL and Deaf culture through courses and workshops I attended. That alone, opened my eyes to the world of a human being I am. Many cultural and language conflicts in terms of how we use of ASL became a clear structure of how two languages that I equally value has stronger influence with how we bend both cultures into our way of life and because that’s how we all learn to evolve to be who we all are as individuals.  

                        

Professional Journey as a Deaf Educator and Leader.

As soon as I graduated Gallaudet University with my Bachelors in Social Work. I went back to New York City for one year working as the Deaf Service Coordinator at the Bronx Independent Services. I also had a part-time job as a G.E.D. instructor for LaGuardia Community College. That’s when I found my love for teaching, which then I went back to school, studied and received my Masters in Deaf Education. I was also working night shifts as a residential counselor for high school deaf students.  After having my 3 boys in two years as I had a set of twins after my first born being at 20 months old.

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I accepted a position as the Co-Director/ASL Lead Faculty of the ASL/Interpreting Preparation Program in Denver, Colorado. There, I learned so much more about the culture, language, history of our community and how we, the deaf people, are outsiders of the hearing society. I also learned how we all are raised with different backgrounds and education experience that brings the uniqueness even more in the Deaf community that’s within the larger community in the hearing world.

 

During my 5 years living in Texas, I was employed as parent infant program teacher at Texas School for the Deaf in Austin before I landed a Director position with the Gallaudet University Regional Center – Southwest when it first opened and based in Austin Community College. Five years later, I was offered the K-12 Principal position at Colorado School for the Deaf and the Blind in Colorado Springs. After years of teaching and administrating in the education field and do an extensive outreach work at the center, I knew there is still a serious huge gap in the connection of our people, our community and the resources that we must access to but I didn’t have any answer to this huge issue that deeply impacts every deaf individual.

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  Three years ago, during the National Academic Bowl at Gallaudet University, I sat next to Karen Putz. I brought up my concerns about deaf and hard of hearing students who were showing severe delays with language and learning. During our conversation, I remember vividly how Karen was very straightforward about lack of centralized information and resources for parents with deaf children. Karen also mentioned how serious of a problem that is if we (Deaf and Hard of Hearing adults) continue to not be connected to those hearing parents with deaf children, we will continue to have challenges now that 98% of deaf children have hearing parents.

 

In other terms, we must change how we do things. That conversation never left my mind because I already knew and believed that as a huge and serious gap, which impacts many, many deaf children and how they live life and ultimately, become a productive adult that may come to question. It’s the connection. Fast forward. Three years has passed. Karen and I reunited at the Hands and Voice Leadership Conference in Estes Park, Colorado discussing about Veditz, a solution I created for deaf and hard of hearing children and their families! Veditz is the first online, mobile, on-demand and live interactive video chat tutoring platform for the deaf and hearing who wants to learn ASL or are simply visual learners regardless of where they are or what device they’re using – PC, Mac, Chromebook, or Apple iOS or Android smartphone or tablet devices! Deaf students, including, deaf and hearing people can now get tutoring in many subjects (math, science, ASL, and more!) with tutoring delivered in ASL online in your home! Teachers, professionals, students, parents and their children can use Veditz for FREE to find ASL practice partners and then meet up online on Veditz’ secured platform and conduct live video peer-to-peer ASL practice with each other.

 

Also, when a child needs help in Algebra, English writing, ASL or something else, Veditz and our hundreds of tutors are at your service. Since our tutors tutor in ASL, it saves costs on having to hire a tutor and interpreter, plus it maximizes quality of tutoring time. Also, come and learn more about our vision on building a Khan-Academy-like for the Deaf similar to our ASL Math Academy is currently featured on our website for free! When Deaf students want an answer in ASL not just English? Our FREE ASL Math Academy has dozens of videos signed in ASL with English CC on Arithmetic, Pre-Algebra, Algebra, Geometry and more!

 

Embracing Life as a Deaf Mother Raising 4 CODAs

In between my career journey after having my baby boy, Caleb, I was hired as the High School Social Studies teacher at Florida School for the Deaf and Blind in St. Augustine, Florida. I learned the value of student connection as a teacher and implement visual learning instructions. After the double “oops” surprise came on the day of 18-week sonogram, I was told that I was carrying twins! In 2005, we had fraternal twins, Tristan and Sebastian, when Caleb was only 20-month-old where many thought I had triplets! Certainly, at age 25, I was shocked but I embraced raising twins. I have learned so much raising my own twins. Evidently, I had my hands full that I decided to stayed home temporarily to raise 3 young boys before I went back to work.

                                                

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The Impact of Co-Founding Veditz

Leaving the principal job at Colorado School for the Deaf and the Blind was not an easy decision yet best decision as the decision has blindly led me to co-founding Veditz! Like I mentioned, I always knew there is a way to fill such a severe gap of “connecting with others”. I never knew how or what it takes to develop such product because I knew it starts with a person with technology expertise to build a platform.

 

Veditz is going to create an opportunity to break the communication barriers that are often created between the parents and the deaf child. There is no comprehensive program available for learning how to communicate with their deaf child. Veditz is going to provide parents and their deaf children integrated and interactive learning product where is self-paced with practical lessons and activities parents can use as they develop other competences.

 As I briefly shared the evolving human identity that I am today as a deaf, woman, Puerto Rican, single mother of four children. I am fortunate that I have been given through different professional opportunities, to be a counselor, a service provider, a coordinator, a classroom teacher, a program administrator, a school administrator, an outreach/ambassador for a University where I will always use as resources and tools to continue navigate in the hearing world. Now that technology is here and sign language is a visual language, putting both together is what validated my deep desire, passion and understanding what it takes to happen for such product to connect, educate, and empower the world’s deaf community.

 

I am going to be who I am and I will use all tools and resources to live and merge in the hearing world as a deaf adult. My identity has evolved as I was once called “hard-of-hearing” child to simply being deaf. I have and will continue to embrace what it means to be deaf in this world. Most certainly, I will also embrace the gift of being a mother and raising four beautiful hearing children (CODAs).

 

          

 

 

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Pieces of the Puzzle: Jaden’s Story

October 7, 2016

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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.

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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.

 

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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.

 

Wendy Roback

 

 

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Helen Mackay: Turning the Tables

August 1, 2016

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I cried today.

I went to a Deaf community meeting. No interpreter available for signing impaired people like me. I went anyway, keen to know about the new voting options for the local Deaf Society and new club room plans. I took my kids. One hearing. One deaf.

Today. The. Tables. Turned.

For just a few hours I experienced a little of what it must be like for my deaf daughter in a ‘hearing’ world. I think I understood about 30-40% of what was being signed. Enough, I think, to fill in the blanks with context. Perhaps as much as my deaf daughter picks up when reliant on lipreading when people don’t sign to her or caption TV. I will never know if I did understand so there’s a nagging doubt I missed something, but I think I’m OK.

But it was hard. My head hurt so much it is throbbing, still, even as I write this.

I concentrated intently on the signing in front of me, unable to be distracted by kids tapping on my shoulder for me to do something. I simply couldn’t multi-task, I had to focus on the people right in front of me. The note pad in front of me, rendered redundant as I couldn’t take my eyes off the ‘speaker’. The distant but loud noise of a builder banging felt out of sync with what my brain was trying to do visually. I had to close the door to help drown out the background interference. My daughter tells me sometimes she just has to take her hearing aids off at school as she cannot focus with them on “mummy they don’t help, its just noise”. Perhaps this is what I was experiencing inside my brain in reverse.

I felt compelled to get up and ‘sign’ to the community about something I felt strongly about. I was nervous. As a sign language beginner, with every sign I made, I was conscious that it was far from perfect and desperate that people would understand me. Perhaps this is the same experience my daughter has when she has to stand up and speak without hearing her own voice. Without knowing whether her words sound right and looking for reassurance from her friends to let her know she has been understood or turning to me for assistance with a word she struggles with – just as I had to fingerspell words I could not sign. I looked to the crowd who supported me by signing the word I was stumbling on. But I was vulnerable. The emotion of it all – the subject I was signing about and the way I felt, the tears dripped!

When it came time to leave, my eldest daughter wanted to stay. She was at home.

This is not the first time this year I’ve cried at a Deaf community event. A few months ago, it happened twice in a week at events held to celebrateDeaf Aotearoa New Zealand Sign Language week.

The first, was a solo outing for me. No kids, no husband. Just me. A special screening of the British Deaf Association film the “Power in Our Hands” hosted by Terry Riley, visiting from England to attend the World Federation of the Deaf – Official Board meeting.

It’s a powerful film, complete with captions so people like me can follow. It tells the true story of suppression / oppression of the British Deaf community and the gradual recognition of British Sign Language and deaf culture in British society. The film had captions and the signed introduction by Terry was interpreted. I was challenged by the film but linguistically I was still in my comfort zone. My needs were “accommodated”.

However the message of the film was so incredibly powerful it cut me to the core that this might happen to MY daughter. I felt ever so grateful for people like Terry who has been instrumental in the UK to make the deaf voice “heard”. He has been instrumental to the British Sign Language Broadcasting Trust who produce wonderful video directly relevant to the Deaf community (and accessible to people like me with subtitles). I resolved, as I powered down the pavement away from the event, that the “power” was indeed “in my hands”. As a parent I have a responsibility to ensure I do everything to make my daughters’ lives full, and free from discrimination. And to learn more sign. (My daughter is fluent receptively already and has a full time interpreter in her mainstream school where she is the only Deaf child in a roll of 400+. Our family are all learning to sign).

Me and my Deaf daughter

In another event that same week, we went to ‘listen’ to Drisana Levitzke-Gray speak – or should I say sign, to a Deaf community event, about her experiences as Young Australian of the Year. There was an interpreter. Again I was moved to tears and compelled to stand up as she shared her experiences of mainstream schooling, rising above the challenges of isolation and her advocacy for children like my daughter. Her message resonated with me, and both my daughters. Again, I strengthened my resolve to be a ‘hearing’ ally. A partner for good.

But today with no captions, no interpreter, no ‘signing aid’ and no voice, I had no “accommodation”.

I knew there wouldn’t be any, but I choose to go anyway, just as my daughter has had to do every day this week to her wonderful school (her educational interpreter has been away). Except that she doesn’t have a choice, she must go to school regardless, like tonnes of other deaf & hard of hearing kids that don’t have their needs met either. Perhaps they are Cochlear Implant users, denied teaching assistance as they are “cured”, or with an inability to access sign language lessons because the kids are oral and not on the priority list for sign classes. Perhaps they are hearing aid users who are not ‘quite’ deaf enough, but struggle to piece it all together using a combination of lip-reading and technology.

Today, it was just me. Laid bare, in a room of people about the same size as my daughters year 6 class. I felt vulnerable, scared and exhausted as I concentrated to understand and then be understood.

The tables turned, on me, today. But you know what, that’s no bad thing.

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My daughter is deaf. Like many deaf children she was born into a family of hearing parents. Being deafened post-lingually she talks. But she is most at ‘home’ with her deaf friends. They get her. Many many times since she went deaf, I have fought to be sure she has full access and treated equally in society.

Today, I cried because I realize how much load this ten year old carries, just to get through the day with a smile, let alone understand and be understood.

I’ve done deafness ‘simulations’ before and I thought I ‘got’ it.

But today, I really got it. You know the best thing? When I cried, no-one judged me. No-one stopped me and said (or signed) “you can’t do it. I was welcomed, appreciated supported and encouraged. For that, I am truly blessed.

You see, regardless of whether some form of ‘technology’ may help my Daughter now or in the future, she is Deaf. She speaks, she signs, she has choice. She’s Deaf and proud, and I am thankful she is growing in her own Deaf confidence.

I am sure some people will say that I shouldn’t cry about this stuff, and definitely not in front of my kids. But they hugged me tonight and as I signed “I love you” to my Deaf daughter she said “I love you” back. My hearing daughter did the same. I need to be able to switch in the moment, just as they do daily. To see me struggle too helps them both know, life ain’t easy, but it sure is what you make of it.

As I write this, again I cry. But tonight, they are happy tears. I know that my daughter has a community of support who get it much more than me. I too value the friendship and welcome. My hearing daughter also gets to see and play with other children who too have deaf brothers and sisters and that’s cool too.

To everyone that hesitates to get involved in the “Deaf” community, I offer these words of encouragement. Do it! Let your kids have choice.

I know we are all stronger together – Deaf & Hearing. For that, tonight, I give thanks. “Hands wave”.

In case you are wondering, I’ve also made a note to myself. I must NOT cry at the next event!

Helen Mackay

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Marsha Peterson: No One was Dancing in the Delivery Room, Except Me

October 6, 2014

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“Well, it looks like he has Down syndrome”, said a medical professional I hadn’t met before. With Apgar scores of 2 then 5, no one was dancing in the delivery room. Well except for me, in my mind anyway.

When I attended my first support group for babies born with Down syndrome, I was told “at least we have a diagnosis from birth that we can work with”. Really? Little did I know that autism, silent aspirator, hypotonia and hard of hearing would all follow as his little life began.

At a year old, Chad’s special education teacher suggested we learn sign language. I remember her teaching him the sign for ‘more’ using a musical top. He learned the sign after three or four introductions because it meant more spinning and music from the toy. The teacher didn’t provide any further sign language lessons or instructions. My sister had a book on signs tucked away with her old college textbooks. She pulled it out and as best I could, we began learning ASL on our own.

Where to start? I thought since kids like animals, I’d start with that. My son would learn five to six signs every weekend – not bad since as a single parent, I was working 40 hours per week. He remembered the signs and before long, he was relying on them for his main mode of communication. This began to present a problem however. I noticed that if someone didn’t have signing skills, he wanted nothing to do with them. This brought about horrible behaviors if he wanted to communicate something and wasn’t understood. I suffered two black eyes, a bloody lip, holes in the walls, a broken window, etc, too numerous to mention. I was learning how important communication for a non-verbal baby is!

I started asking for caregivers with ASL skills and found one or two between personal care attendants and educators. Whenever I could match him with someone he could communicate with, behaviors went away. But not many people knew the language. I decided to go back to school and finish my bachelor’s degree. With a sales background, I thought I would get my degree in marketing. As the bachelor program was coming to completion, I was struggling with my son’s school to give him language. It was nine months of regular meetings, I developed an ulcer and I am sure I wasn’t the only person who fell ill that year. The school suggested a communication device or using Picture Exchange Communication (PEC) system. For the most part, Chad rejected these and preferred the spontaneity of ASL. My frustration was so great that I decided I didn’t want any parent to go through what I did with language development. I wanted to give parents a tool they could use starting at birth and would put them in charge of language learning. I decided to somehow use this as my marketing project for my degree. After a lot of research on babies, literacy and language, I created Talking with Baby and the first book, Come Sign with Us, the Adventures of Potts and Friends was written. (Potts was the nickname I had given my son) The book won a Mom’s Choice Award for educational products in 2010.

chad peterson

Despite a slow start, my son had 400 signs by 4th grade, learned another 200 before entering 7th grade. We know he has well over 1000 signs today. Learning ASL has given my son language and confidence.

Teachers asked me what I wanted for my son’s future. I always answered, “Give him a language!” What greater fulfillment in life than to interact with others. He started a day training program last summer

and I’ve never seen him so happy. We love ASL.

 

Website:  Talking with Baby

Marsha Peterson

Iowa

 

 

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More Than We Know ~ Bonnie Leiser (Grandmother)

January 15, 2014

Apple picking with Nana

“We will teach you all that we know. You will teach us more than we know.” I reread these lines from a welcoming prayer I had written to my first granddaughter for her birth, as I tucked in both of my precious little girls this past new year’s eve. We were tending to them that night so their mom and dad could go out on a date. As the year turned the final corner and a new one loomed ahead, I gave pause and thought about the true depth of what these words had come to mean for me.

Our first granddaughter, Ashlin, was born in a very successful water-birth, We had the honor of being present for that miracle. Both mama and baby were fine, healthy and robust. We even photographed the truly exceptional moment when Ashlin actually reached up towards her father’s face, as he leaned in to say hello to his new daughter. Our son, Walker, and his beautiful wife, Helen, had made us grandparents at long last! We were ecstatic!

Ashlin was such a sweet little baby, so happy, responsive, so loved. I remember bowing over her and talking to her and hearing hear laugh and smile up at me. As she grew, her sweet demeanor remained. Time went by and yet she hadn’t spoken a word. She was nearly two and not talking yet. My son and I were convinced she would speak up when she was good and ready to do it, on her own timeframe. I guess, looking back, we were in denial, however, my husband and Helen had some concerns. One day at her doctor’s appointment it was suggested that hearing tests be done. The result of the test told us that Ashlin was profoundly deaf. It was the most shocking and devastating news I had ever heard. There was no family history of deafness that we knew of, nothing to help us understand how this could be. We reeled with the news, passing through the stages of grief, loss, confusion like moving through heavy water. How would my beautiful granddaughter ever hear the rich beauty of music, so dear to my heart? How would she know the sounds of nature and life? How would she communicate with us? How could she ever hear the words “I love you”?

Then the family had to move into action to find out what we could do. This was a fact of life for us and we simply had to move ahead. Helen and Walker began a search into all of the options which might be pursued. We all learned so much. They told us about an incredible procedure called cochlear implants. I had never heard of this. It took me some time to come to accept it, as I was concerned about the potential dangers to Ashlin. Through the help of a friend, I found a family whose young son had been implanted. That family was gracious enough to meet with me and let me ask questions of the father and son. It really helped me to go down the path of cochlear implantation. I fully understood that I was just the Nana and it was not my decision to make, but I desperately wanted to believe it was the right thing to do.

The day came when Ashlin, just barely two years of age, got her first implant. It was so hard to see that little baby girl being carried off into the operating room. The family waited in agonizing tension for her return from surgery. I filler the air with my quiet prayers for her, asking that she come back to us; asking for her protection. At last she came out. The poor thing looked like she had been hit by a truck. But, after a while her little spirit awakened and she was with us again.

Our second beautiful granddaughter, Mikaylin, was born in another successful water-birth. We all held our breath wondering if she too would be deaf. This time testing was done early on. We awaited the results with stilled hearts. The answer came back that she was, indeed, deaf. How could this be? Again, we were thrown into sadness. And yet, this time we had more hope. We knew there was a way for her to hear; and she had an older sister who was thriving.

Mikaylin had her first implant surgery when she was 10 months old. I’ll tell you, it doesn’t get any easier to see a second baby girl carried off to the operating room. The prayers were every bit as strong for her. Even though we had been through this before, twice, it was still so hard. But, Mikaylin bounced back from her surgery very quickly and she was in full force very soon.

I think, honestly, that it is a blessing that both girls are deaf. Both now have bilateral cochlear implants. They share a bond that none of us can even fully fathom as hearing adults. They will always have this bond. Their relationship will always be strong and magical.

Both of our beautiful granddaughters are strong, healthy, and smart. They love to dance and sing. Their speech is clear and their diction as good as, or better than, hearing kids of the same age. They have been going to school since age three and had lots of special training from a wonderful school, They are now even learning sign language, which pleases me immensely. I hope that they will master several languages in their lives. The girls have bright futures with unlimited possibilities.

We thank these girls for being in our lives. They have and will continue to “teach us more than we know.”

 

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