Archive for the ‘Early Intervention’ 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!
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
It is with sadness but celebration, that we hear of the passing of a true pioneer and the Grand Madame of pediatric audiology, Marion Downs. As she lived her life, she passed away with dignity and grace on November 13, 2014. At 100 years of age, she leaves a legacy that touches all of us; parents for her perseverance in the implementation of newborn hearing screening and advocacy for parent choice; children who have better outcomes and opportunities as a result of early diagnosis and intervention; professionals in audiology, medicine and deaf education who have had the benefit of her teaching, influence, and mentorship; and mankind for a woman who taught us all to “Shut Up and Live” with meaning, laughter, and pride.
I was fortunate to have Marion as a teacher when I was a graduate student and as a mentor throughout my career. As a parent, she helped me gain confidence in my own advocacy abilities for my daughter and for her education.
Marion will remain a role model and guiding light as we continue our advocacy work on behalf of parents and children who are deaf and hard of hearing. Her influence changed our world and inspired many. May her legacy be not only the grace, kindness, and patience with which she treated people, but also her optimism, determination, and fearlessness in living her life.
Cheryl Johnson, Past President, Hands & Voices
If you didn’t get a chance to meet her, she was a spitfire of a lady: grounded, interested in all of life, and just sparkling with energy and drive. She packed several lives into her century: skydiving and triathlons, research and authorship included. I got such a kick out of her story about why she chose audiology: that enrollment line in college was the shortest! We are glad you picked “our” line, Marion, but I do have the feeling that any field of study would have benefited from your closer look at how things are and how they might be. At Hands & Voices, we truly appreciate her respect and encouragement of families to truly have a place at the table in designing systems for hearing screening and follow up. Her friend and co-worker Dr. Jerry Northern introduced her at her 100th birthday party last January. He remembered something she often quoted: ‘Live for today…plan for tomorrow…but let’s party tonight!’” Work hard and play hard – it’s a good motto.
Sara Kennedy, Executive Director of Colorado Hands & Voices
I was fortunate to live in Colorado and be a part of the Marion Downs National Center as the parent consultant starting in 1996. It was there that I began to get to know Marion. My favorite memories of Marion include being in committee meetings with her when a group of us would be discussing a complex issue or situation, and begin to commiserate on why something couldn’t get down and/or why the system couldn’t change. At some point in the meeting, Marion would speak up and say, “Well, let’s just get it done”. And that was it. She never looked at why something couldn’t happen, but just to keep moving forward and MAKE things happen on behalf of families and kids who are Deaf/Hard of Hearing. I always thought Marion was just one of those ‘lucky’ older individuals that didn’t have to deal with what others had to deal with in old age. She was just one of the lucky ones for whom age didn’t really matter. It wasn’t until I read her book, “Shut Up and Live” that I realized that Marion was human after all, that she was subject to the same ailments and challenges of growing older – but there was a difference! In spite of those things, she kept busy, active, moving forward, jumping out of airplanes, contributing to her lifelong commitment in her career to improve the lives of children. The world was a better place with her in it! She will be missed.
Janet Des Georges
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
My son passed his Universal Newborn Hearing Screening at birth. Three years later he was diagnosed with moderate to severe hearing loss. Like so many other families, I had no idea what to expect or what to do. I had concerns about my son’s lack of speech and had asked our pediatrician for pretty close to a year if she thought the he might be delayed. She told me to stop worrying – he was a boy and a second child. He was just on his own path, I didn’t need to worry. Just before his 3rd birthday, his playschool teacher suggested that maybe it was time to take him for a hearing test. We had been talking about his speech over the course of the year, and the past few weeks, due to a bad cold, it seemed like he wasn’t hearing anything. We took him to an ENT, where his hearing test results were “abysmal”. We were told he had fluid in his ears, so tubes were put in and two weeks later we were to go back for further tests. But, while his hearing improved a little once the fluid was gone, we were told he would need to wear hearing aids to access what hearing he did have. We were stunned, and excited, and overwhelmed, and unsure, and about a million other emotions all at the same time.
We were fortunate, we found the resources and support we needed, and we are good now. Today, at the age of eight, he’s an energetic and athletic child, who loves to read Harry Potter books and play hockey. The sky is the limit and he is in no way defined solely by his hearing loss.
Here are some tips I’ve gathered to take the “scary” out of times of transition:
Taking the Scary out of Transition
Transitions seem magnified when you have a child who is deaf or hard of hearing. While transitions can be good or bad, planned or unexpected, in all cases as parents we are shifted out of our comfort zone and we must re-examine how we fit into the new situation.
The word transition often becomes intertwined with anxiety as your child moves through the education system and out into the world. There is so much to think about. Will therapy support remain the same? What will happen if we change schools or move to a different city? How will my child adjust to middle school? Our district has a new speech-language pathologist, will she understand my son? Just when it seems you have things set up the way you like, along comes a change.
What if there was a way to make transitions less about being scary and more about recognizing a growth opportunity?
One of the reasons transition are so scary is that we are afraid of the unknown. So, make the unknown, known. Stand back and take a moment to acknowledge your worry and how you are feeling. Then, when you are ready, figure out what it is you need to do prepare yourself for the transition. Read books, ask questions, join a support group, spend time walking around your new neighborhood, find real information (engaging in gossip and rumors doesn’t help). Do whatever it is you need to do to get your questions and concerns answered.
Prepare/involve your child
As a parent of a child with a special need it is easy to become engrossed in advocating for their needs and forgetting to include them in the process. Of course, how much you involve your child depends on their age, but even the youngest child can be involved in transitions. After all, they are the one most directly involved. Some ways in which you can do this area:
Have your child visit the new school.
Meet teachers/new team before the beginning of the school year.
Have your child either write down or tell you what they think their needs are.
Attend IEP or team meetings.
Nothing is written in stone
Despite your best intentions sometimes things do not work out the way you planned. Maybe moving your child from individual speech therapy to group sessions was a move backwards for their confidence; or the support services at the college your child chose to attend are not working out as promised. But, and this is where preparing yourself come into play, no matter what your original decision was, there is always an alternative way.
Give it Time
The world today is a place of instant gratification – on demand movies and same day shipping are the norm. But, change takes time to adjust to and it is important that you give both yourself and your child the time needed to adjust to the change. It is unrealistic to walk into a new school, or to adjust to a new therapy schedule in the first week or two. Try to be patient and see how your child grows into the change.
Develop a Support Network
“Change is the only constant in life,” said the Greek philosopher Heraclitus; so you might as well get used to it. Transitioning is one part of this journey that is called parenthood. So, find a group (or groups) that you can tag along for the ride with. There is always someone out there who has gone through the very same situation that you are facing. Post a question to a Face Book group. Look for someone in your community that has experienced a similar situation. Ask your child’s audiologist or SLP if they know a family that you can connect with. Find an organization that you can connect with. There is strength in numbers, and if you can enter a transition with others at your side that takes a whole lot of scary out of the change!
Krystyann Krywko is a hearing loss educator and writer who provides resources and support for families who are raising children who are deaf or hard of hearing. You can check out more of her work at www.kidswithhearingloss.org; or click here (hyperlink: www.kidswithhearingloss.org/go/welcome/) to receive her free eBook, 5 Emotional Sticking Points of Parenting a Child with Hearing Loss.