NC ELSSP-VI Newsletter

December 2017

Each child will be honored, respected, and empowered to achieve success in school and life.

North Carolina Early Learning Sensory Support Program for Children with Visual Impairments

NC Department of Public Instruction

Office of Early Learning

December's Quote

It is not what you do for your children, but what you have taught them to do for themselves, that will make them successful human beings.

-Ann Landers

Contents

Professional Development Submitted by Lin Causey

Emma & Parker: Their Story Submitted by Becky Lowrey & Heather Bradford

Deaf Blind Workshop Submitted by Heather Lister

Staff Birthdays for December

Photo/Video Credits

Professional Development Opportunities

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Save the Date

The NC Conference on Visual Impairment and Blindness is scheduled for

April 19 and 20, 2018 at the Sheraton Chapel Hill.


There will be 5 tracks: Pre-School, K-12, Vocational Rehabilitation, Orientation and Mobility

and Pre-Employment Transition Services.


ZERO TO THREE’s next Virtual Event Series: Building Social-Emotional Skills! Visit the series webpage to learn more!

Free to ZERO TO THREE members. $30 per session fee for non-members.


January

· Session 3 - Tackling the Tough Stuff: Addressing Social-Emotional Issues with At-Risk Families
Presented by Angie Tomlin, Ph.D., HSPP, and Stephan Viehweg, ACSW, LCSW

Thursday, January 18, 2018, 2:00 pm EST

Click Here to Register!


Overview: When working with at-risk families of young children, home visitors need to know how to address complex issues with skill and sensitivity. In this webinar, you’ll learn how to intervene effectively with families facing one of the most common issues: social-emotional challenges.


The Tackling Tough Stuff virtual event gives you a complete introduction to the to the problem-solving PAUSE (Perceive, Ask, Understand, Strategize, Evaluate) framework. Developed by the webinar presenters, this framework provides relationship-based practices and reflective skills you can use in everyday interactions with children and families. In just one hour, you’ll learn how to apply the PAUSE framework when helping families address key issues related to social-emotional development, including:

· challenging behaviors

· emotional regulation skills

· separation issues

You’ll come away with practical information you can apply right away to improve your interactions with at-risk families and ensure better outcomes for children.


February

· Session 4 - Behavior Strategies for Children with Autism: Supporting Social-Emotional Skills
Presented by Merle Crawford, M.S., OTR/L, and Barbara Weber, M.S., CCC-SLP

Tuesday, February 20, 2018, 2:00 pm EST

Click Here to Register!


Overview: Perfect for parents and early intervention providers, this one-hour virtual event gives you the practical guidance you need to support positive behavior in young children who have a diagnosis of autism (or signs that they may be on the autism spectrum). Two expert presenters will explain the core deficits of autism and discuss how behavior and social-emotional skills are affected by challenges in specific areas, from flexibility to social communication. Useful tips and strategies to build social-emotional skills and make positive behavior changes will be highlighted.

After the webinar, you’ll be able to:

· describe the presenters’ model of the core deficits of autism

· understand the relationship between Making Sense of Self, Others, and the Environment; Flexibility; Social Communication; and Regulation

· identify ways to foster social-emotional skills by embedding skill development into young children’s daily routines

· use strategies to prevent and manage challenging behaviors in young children who have autism or red flags for being on the autism spectrum

Monthly Webinars: Partnering with YOU through Visual Impairment information sharing

From the North Carolina Department of Publlc Instruction


Monthly Webinars 3:30-4:30 PM



December 4th

Everything You Ever Wanted to Know About APH Quota Funds

Webinar Registration Link


January 11th

Testing Accommodations for Students with Visual Impairment

Webinar Registration Link



February 15th

Secondary Transition for Students with Visual Impairment

Webinar Registration Link


April 12th

Practical Strategies for Preparing Students with VI for State Testing

Webinar Registration Link



May 3rd

Transitioning Students From One Level to the Next:

Preschool through High School

Webinar Registration Link



Emma and Parker: Their Story

KCNQ2 Encephalopathy (KCNQ2E) is a rare epileptic genetic disorder that involves the KCNQ2 family of ion channel genes. These channels in the cell membranes allow charged atoms or ions to flow in and out of the cells and are key in the cells’ role of generating and transmitting electrical signals. With KCNQ2 Encephalopathy, a potassium (K) channel (CN) within the brain has been altered. Specifically, it is the long arm (Q) of chromosome 20 which has the mutation. As stated, the syndrome is very rare and was at first lumped together within another related disorder known as Benign Familial Neonatal Seizures (BFNS), which was first described by Rett and Teubel in 1964. In 1998, the gene KCNQ2 was identified, but it was not until the release of an initial paper in 2011 that the epileptic syndromes due to mutations of KCNQ2 came to light. Since that time, it has been estimated that approximately 500 individuals with the KCNQ2 mutation have been diagnosed according to the KCNQ2 Cure Alliance.


As with any syndrome, there are variations that present with KCNQ2. Seizures begin happening within the first week after birth, and usually involve several seizures a day. For some individuals, the seizures may resolve after months or years, but most children will have developmental delays within some or all developmental areas, which range from mild to severe. The syndrome affects females and males equally, and often the cases are undiagnosed or misdiagnosed, which has made it difficult to determine the actual number of individuals affected by KCNQ2. Though KCNQ2E is considered an autosomal dominant disorder, i.e., the mutation is inherited from one parent from a mutation on one of the first 22 or non-sex chromosomes, most cases of KCNQ2E happen because it is a new genetic mutation or “de novo”. This means that the disorder was not inherited.


Within North Carolina, there are two children with a diagnosis of KCNQ2, as it is known by the families who have formed a network of support all over the world. Emma Talley, student of Becky Lowrey and Parker Price, student of Heather Bradford, live about an hour away from each other. Indeed, even these two little ones have different versions of the syndrome. Parker has a mutation, which affects a loss of function within the potassium channel in about 90% of children diagnosed with KCNQ2. Emma has the much rarer form, which affects the gain of function in the potassium channel in about 10% of the KCNQ2 population. Besides the diagnosis of KCNQ2, both children have been diagnosed with cortical visual impairment.

Emma is a beautiful five-year old with long luxurious curls. Emma loves pink and purple clothes, particularly if they have some “bling” or spangles, and she helps picks out her clothes in the morning through eye gaze. Though her preferred color when she was younger was red, she has obviously branched out to other colors. Indeed, Minnie Mouse is her favorite toy and cartoon. As any good, Disney fan would know, Minnie’s trademark fashion design always includes a good helping of pink. Emma first met Ms. Becky when she was about 5 months old in 2013, and at the time, her family was searching for answers to Emma’s seizures. Emma was diagnosed with KCNQ2 just before her first birthday. With Emma, the syndrome has caused developmental delays, but she also has difficulty alerting and staying awake at times. However, she let’s Ms. Becky and her other providers know what she likes with a look, a big smile, and a reach when given an arm lift. She, also, let’s them know what she doesn’t like by vocalizing with a frown or by hitting a switch to stop an obnoxious song she’d rather not hear. Over the past few years, combinations of medication have been tried, and her seizures are now under control. This past year, Emma began to take part in a study conducted by Pairnomix, a genetics evaluation company doing research on the KCNQ2 genetic mutations. Pairnomix built an exact cell model of Emma’s specific mutation and tried 1300 different compounds on the model to see which one might help Emma. The drug Paxil was the winner, and Emma began taking Paxil this past July, but has several more months before she is at the optimal dose. Her parents are optimistic, as they have seen some positive changes with Emma since beginning the medication, though her mother stated that they also know some changes may have occurred due to Emma becoming older. Emma’s parents have been very active in the KCNQ2 network and have attended the annual conferences over the past few years in Colorado, Washington D.C., and most recently in Boston. They keep in contact with families all over the world, including Parker’s family with whom they have been able to visit. Emma’s mother, Danielle, is very thankful for the KCNQ2 family and all the support they have received and have given. (Emma is 5 years old in this picture)

Parker is a dapper, soon to be three year old, full of curiosity. He loves the color yellow and he, too, favors a little bling now and then. Parker’s favorite toys include a yellow crocheted bumblebee that his great mother made for him, as well as his illuminated, dancing Beatsbo. He finds great pride in using a toggle switch to turn his light box on and off. He has become quite skilled at hooking his arm around the switch for best leverage. Parker enjoys watching and listening to his buddy, Rosco, the family dog, swinging on his super cool swing that his family erected in the downstairs of his home as well as playing the “light game” with Daddy. Daddy and Parker get into the dark closet and Daddy counts to three, turning on the lights on the count of three. Parker can’t stop giggling when they play this game. Parker began vision services when he was 2 months old and he met Ms. Heather close to his first birthday. Parker was diagnosed with KCNQ2 soon after birth due to hypotonia and seizures. With Parker, the syndrome has caused developmental delays, but also significant periods of discontentment. The discontentment is a result of the loss of function within the potassium channels preventing charged ions from entering the cells. These ions have a calming effect on the brain. Parker has difficulty sleeping, riding in a stroller or car and being independent of being held most of the time. Parker responds to feeling discontented by arching his back and crying although the periods of discontentment are becoming less and as a result he has been able to attend to the sights, sounds, and sensations around him.



Various combinations of medication have been tried to control Parker’s seizure activity as well. He has had as many as 90-100 seizures a day. Early on, the seizures were fewer but longer in duration. They then changed to more frequent but shorter in length. Parker experienced the most success with the drug Potiga. Potiga opened the potassium channels and enabled the flow of ions thus resulting in less seizure activity and a calming effect. Unfortunately Potiga was taken off the market due to hazardous side effects, especially within the visual system. The search for a comparable drug continues. Parker’s parents have been very active in the KCNQ2 network and have been appreciative of the support they have found in other families including Emma’s family. Not only have they been part of a moral support exchange, but also ideas, current research, strategies, and materials for which they are extremely grateful.

Deaf Blind Workshop

On November 2nd several teachers from ELSSP-VI attended a Deaf Blind Workshop sponsored by the North Carolina Department of Public Instruction and East Carolina University. The presenter, Mark Capanos, provided information on "How we all learn" using our brain, our body and communication and focused on how this applies to learners with deaf blindness (and other low incidence disabilities). The presentation was informative and useful. In the picture to the right and the pictures below, participants were directed to have their blindfolded partners complete a task (participants could not talk to nor use sign language to communicate with their partners). It was a fun filled day of learning.

December Staff Birthdays

December 24th Heather Lister

December 29th Nancy Kirby-Sauls

Photo/Video Credits

NC ELSSP-VI Staff