In the fall of 2007, I answered a call from our adoption agency. After the birth of one daughter and adopting two more from South Korea, we were waiting to add a special-needs toddler boy to our family.

“There’s a little catch,” the social worker said. “She’s a baby girl.”

That baby was a 27-week twin born weighing just under two pounds. She came home at 13 months of age, entered Early Intervention right away, and has always been followed by a skilled team of doctors. Her Korean mom gave her a name meaning “Joy.” 15 years later, Joy’s name still suits her. She is sunny, optimistic, funny, and curious despite living with quadriplegic cerebral palsy from birth. And despite living in undiagnosed DeafBlindness for nine years.

When Joy was eight and a half, a hospital-based therapist noticed Joy was distracted by sunlight rhythmically flashing off cars whizzing by the window. The OT asked if Joy had been evaluated for Cortical Visual Impairment (CVI). I was a consulting historian at the time; I had never heard of CVI.

A few months later, after collecting the opinions of a confusing number of specialists, Joy’s neurologist diagnosed her with this brain-based form of blindness. Although Joy passed eye exams every year, she was functionally blind. Sedated tests showed mild-moderate bilateral hearing loss that had also gone undetected. Joy was nine years old when DeafBlind became her primary educational category.

It was a lonely, confusing time for me. After a twenty-year marriage, I had just begun a process that ended in divorce. Negotiating everything that meant for my children, my career, and our support system was overwhelming.

Despite this, Joy’s diagnosis struck me as good news. Her development had slowed to a creep after she began school. Teachers gently readjusted my expectations about her cognitive development, norming it to some outcomes in Cerebral Palsy. But we were wrong. Joy did not just have CP; she was also DeafBlind. At school-age, Joy began disappearing. Undiagnosed multi-sensory impairment drove her inside herself to escape the onslaught of sighted and hearing education.

The year Joy was diagnosed, Cortical Visual Impairment was not yet counted as an etiology in DeafBlindness. Now we know that CVI is the most common source of visual impairment in the developed world. In 2020, the most recent National Child Count of Children and Youth who are DeafBlind indicates that 31% of DeafBlind children in Minnesota are diagnosed as being cortically visually impaired. Like Joy, 85% have multiple disabilities.

That places Joy in a double majority (CVI; complex needs) within a very low-incidence minority (DeafBlind). And while appropriate interventions for deafblindness, like school Interveners, are now common, only two TVI preparation programs in the U.S. offer CVI credentials. Children with CVI living in the Upper Midwest are significantly underserved even though IDEA mandates FAPE for them, too.

I have enjoyed Joy’s teachers and other school specialists as people and appreciate their partnership. I admire their dedication to Special Education so much that I am joining that profession. Some have even sought additional training to better serve students who are DeafBlind with CVI.

Read the rest of Joy's story here.

Our goal is to feature one child with deafblindness and their family in each newsletter. We have found that when families can hear similar joys and struggles that other families have gone through, it builds a sense of community and connection. It helps families to feel that they are not alone in this unique journey.

I will help you share your story in the way that works best for you; you can write or type the story up yourself, or we can do a phone call or video call, where I take notes and write it up. If you are open to sharing your story, please email brandy.johanson.sebera@metroecsu.org to get started!

"A repeatable series of events that provides a predictable structure to one's life."

-Chris Montgomery

Why are routines important?

• Routines increase predictability while reducing stress and anxiety.

• Routines provide access to information and learning.

• Routines give structure and meaning to actions and events.

• Routines help children compensate for missing environmental information and support "meaning making".

• Routines provide opportunity for positive interactions.

• Routines are a framework for building communication.

How to get started:

• Think of a few daily routines that your child has (e.g. bathroom routine, meal time, getting ready for school, bedtime routine, etc.)
• It may work best to start with a routine that is enjoyable for the child.
• Consider how you will communicate that this routine will begin. This will vary depending on your child's access to hearing and vision and their preferred Communication Methods.
• Outline the routine with a clear beginning, middle, and end.
• A routine planning form can help you:
• break down the steps of the routine and consider what the child can do independently and what they may need support with.
• include the materials needed.
• consider any modifications or adaptations needed.
• Implement the routine in the same way each time.
• Continue to evaluate the steps of the routine and make changes as the child gains skills and communication.

As families, you are very likely already using and implementing many routines into your day with your child.

With the support of the MN DeafBlind Project, we can look at those routines and help you document what you are doing and look for any areas where you might be able to increase access to vision and hearing as well as additional opportunities for increased communication.

Check out these great resources for more details about developing routines:

Routines Page from the Texas School for the Blind and Visually Impaired

Getting Started with Routines from Texas School for the Blind and Visually Impaired

Routine-Based Learning from Washington Sensory Disabilities Services (videos)

Open Hands, Open Access Modules: Routines from the National Center on Deaf-Blindness

Open Hands, Open Access (OHOA) Intervener Training Modules; Routines for Participation and Learning

National Center on Deaf-Blindness (NCDB) Routines

Texas School for the Blind and Visually Impaired; Communication/Routines

The contents of this newsletter were developed under a grant from the US Department of Education, #H326T180020. However, those contents do not necessarily represent the policy of the US Department of Education, and you should not assume endorsement by the Federal Government. Project Officer: Rebecca Sheffield