Posts Tagged ‘newborn hearing screening’

The Legendary Marion Downs

November 19, 2014


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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.

shut up and live

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.

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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

marion sara yoel

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

About Marion Downs

Marion Downs Interview

In the Minds of Champions–Marion Downs

Marion Down’s 100th Birthday

Million Dollar Gift for Marion Downs Center

Marion Downs Passes Away



Taking the Scary Out of Transitions

June 4, 2014



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?


Prepare Yourself

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; or click here (hyperlink: to receive her free eBook, 5 Emotional Sticking Points of Parenting a Child with Hearing Loss.