by Brenda Mullins – 3/12/2021

Bella was born February 5, 2017 – a normal pregnancy, C Section had been planned and scheduled, but Bella had her own plan with an emergency C-Section the week before. The delivery went normally except that the delivery nurse said Bella was not breathing well with no major concern. Bella’s nurse swaddled her and took her out of the room. When Mom was in recovery, the pediatrician disclosed that Bella was being flown to Louisville and he was unsure what was going on with her. In his explanation, he said she had an enlarged spleen and liver while covered in a “blueberry rash” or bruises. Her blood platelets were extremely low and she had been taken to the Neonatal Intensive Care Unit (NICU).

Bella’s mother did not see her again until the morning of Day 3 after some blood work. Two hours later, Bella was given the diagnosis of Cytomegalovirus (CMV), a virus caught during pregnancy. Her mother had not been sick except for a 24-hour bug – she had been without fever so the information left mom wondering when she could have caught something so detrimental to her unborn child. Bella showed signs of congenital CMV with enlarged and poorly functioning liver, purple skin splotches, abnormally small head, enlarged spleen and seizures. She had brain calcifications, so a “herd” of specialists began to roll in, one after another. The undoing of her parents’ patience was the “slices of her brain” pictures by the neurologist revealing her brain had extra folds causing more space between the brain and skull. The family was told Bella was at a high risk for seizures and developmental delay. It would affect her verbal ability to communicate so each milestone of her growth and development would be examined closely. She was given seizure medications as a precaution which led to gastric issues immediately. Finally, when Bella was 1 year old, the doctors began explaining in detail that she was not meeting any of her milestones. Mom told all medical personnel that she did not want them to ask, “what Bella was not meeting on that chart”, but instead, to focus on HER and what was happening in her daily life.

“Our home life totally changed as Bella was a complex needs girl”. Even teething was an issue as her immune system rejected the added pain so Bella often experienced hospital stays. Dad was able to take extra time off from work as needed, and Mom became the expert in her child’s care. In the NICU, a referral to First Steps had been made. The process took forever – it seemed like no one knew what CMV was. Mom became Bella’s case worker and drove the process. At 3 months of age, the parents were told that Bella could not hear. That was a rude awakening for all the family.

Because of a friend’s recommendation, a wonderful blessing entered their lives – an audiologist named Shelly Moates. Bella was pronounced Profoundly Deaf in both ears leaving the family in a stage of unbelief, as Bella had seemed to respond to sound. Shelly arranged for Bella to have a sedated hearing exam. This happened in a total of 7 days so with the right help, anything is possible. Shelly became a lifelong friend and resource for Bella. The validated diagnosis of Profound Deafness in both ears put her on the track for cochlear implants and hearing aids. A cochlear implant uses a sound processor that is worn behind the ear. A transmitter sends sound signals to a receiver and stimulator implanted under the skin, which simulates the auditory nerve with electrodes that have been threaded into the cochlea. After fighting insurance for several months, this one-year-old was ready to go. Cincinnati Children’s agreed to do the cochlear implants in both ears only if a panel of 6 (with various disciplines) agreed that was her only shot at hearing. After 8 hours of surgery, Bella’s life was about to change.

Ever hear of young children who would not keep their hearing aides on? Headbands were made to keep Bella’s hearing aids on, and she was passionate about wearing them! The family had to wait at bedtime until she was asleep to remove them. If one of the batteries was not working, Bella would let you know with her eye gaze (a stare). If that did not work, then the grunts would begin. Now, if absolutely no one was meeting her need, the wailing would start. She loved the stimulator (activated on her first birthday). The most loved memory is Bella on the way home – she was so fussy and when she heard music playing – she got very still and had the biggest smile.

During this period of time,  Bella was bowing up and becoming rigid in her positioning. These muscle contractures led to diagnosis of Cerebral Palsy which is a congenital disorder affecting body movement and muscle coordination. Cerebral palsy is due to abnormal brain development, often before birth. Bella’s home was soon invaded by speech (SP), physical (PT), and occupational therapists (OT). It was hard finding the knowledge needed to support Bella, and service providers did not discuss Bella so one hand had no idea what the other was doing. Bella needed a specialized wheelchair, and it was believed that a stroller was what she needed. After many calls and applications to different programs, Bella was fitted for the chair that could best accommodate the positioning she required.  The parents were told many times that they did not have a specialist to work with Bella. “Families need to know that they must become the strongest advocate for their child”, said Bella’s mom. “Don’t take no for an answer”!

Bella’s family, brothers and extended family were very involved with Bella. She was happiest when her brothers and sister were around – all six of them! In the beginning, all the siblings were somewhat scared of her because they had never been around a medically fragile child. As time went on, more and more equipment and machines were added. Bella’s care was so time consuming, the parents pondered on their lack of attention to the needs of all their children. There just never seemed to be enough hours in the day.

Bella was hospitalized at 2 years old because of her seizures. The physicians had hoped to control her seizure activity, but as she aged, they increased both in intensity and number. For 6 months out of her 2nd year of age, Bella was in and out of the hospital. “We didn’t realize she would get to this point so quickly”, said her mom. During one of those stays, they were visited by an Epilepsy Neurologist. According to Norton Neuroscience Institute, epilepsy is a neurological disorder in which abnormal brain activity causes repeated seizures which significantly impact the quality of life. At this level, Bella required specialists to collaborate and develop a multidisciplinary approach to her individualized care. When seizures are not controlled by medication, it is called Refractory Epilepsy, so a comprehensive treatment program was developed for Bella. A g-tube was inserted to give the medicine – the goal now was to get the meds and food into Bella for sustenance. Bella thrived with the g-tube.

A Vegus Nerve Stimulation (VNS)port to the vagus nerve was placed in hopes of controlling the seizures. The vagus nerve carries an extensive range of signals from the digestive system and organs to the brain and vice versa. It is the 10th cranial nerve, extending from its origin in the brainstem through the neck and the thorax down to the abdomen. By stimulating the vagus nerve, a message could be sent to Bella’s body that it’s time to relax and de-stress, which would have led to long-term improvements. However, Bella did not see any significant improvements. Bella was not a candidate for brain surgery, because of the shape of her brain and the nature of her seizure activity. After that 6 months, there would be no more surgeries or challenging medications. The family was on the last leg of Bella’s life journey.

God gave a miraculous gift to Bella and her family that summer. Bella loved to be outdoors and going camping. There were many nights spent under the stars and beside the lake. She went to Disney with all her family including both sets of grandparents.  Bella got to see the ocean! Because of the seizures, long trips were hard and the grandparents were such a help. They took Bella’s brothers and sister home with them, and the parents were able to take extra time on the way home with a stop over at the Gulf Coast. Bella had a monumental sense of smell, so with the Red Tide coming in, the family made a quick get-a-way from the Gulf Coast.

Joy filled the hours with Bella for her family. Bella not only loved the water, but she also insisted on being in it! If looks could kill, many would have gone by the wayside trying to get her out of the tub, pool, or ocean. “How dare you!”, thinks Bella. By her expressions, you would know that to float suspended in water was the best feeling in the whole world.

Make a Wish Foundation wanted to send Bella to Florida again, but she was too sick to fly in a plane. So, they sent the entire family to Gatlinburg. Bella experienced the Waterpark, the Hatfield’s and McCoy’s Musical, Dolly Parton’s Dixie Stampede, and the Aquarium. Since it was Christmas time, Bella was mesmerized by all the lights. Dollywood gave the entire family one day at the park with all their lights, and Bella’s favorite of all time was the Musical Christmas Tree. What a magical experience for Bella and her family.

The Kentucky DeafBlind Project (KDBP) entered Bella’s journey just before her 2nd birthday. Kim, the Family Engagement Specialist, called Mom as she was driving to Louisville between appointments and visited the family at home before COVID-19 restrictions. The project linked Bella with a vision therapist before she turned two. Donna, Kim, and Peggy with KDBP helped register Bella for preschool the spring before she died in April and provided the family with other helpful recommendations. If only the family could have known about the Kentucky DeafBlind Project earlier, it could have made a difference in the struggle of finding resources specific to deaf blindness.

Bella loved any vibrating toy with Tickle Me Elmo being one of her all-time favorite toys. Pocoyo was her favorite cartoon, and where Bella was, so was Pocoyo – it played constantly. Bella was a great teaser. She loved to give “slobbery kisses” and she was very picky about who she kissed. She would lay in Dad’s arms and kiss him as Mom says, “don’t you give him my kisses”! Bella was her own little person – looking at mom with mischief in her eyes and of course, giving those kisses away to dad. Bella went out of this world the same way she came in – on her own terms. What can be said to other families who have a Bella in their life? “Community is the key. It will always be difficult, and some friends will not know what to say so they stay away. But the ones who walk beside you help you get through it” shared Bella’s mom. Family, service providers, caring medical personnel and other special needs parents can make all the difference to a family in crisis. “These parents become your best friends”, stated mom. “There is a scenario of a parent falling in a hole. The school sent down a bucket (resources), a doctor sent down medications, and a family throws a rope down for you to climb out. But – a special needs parent goes down the rope into the hole with you and both of you climb out together”. After Bella died, Mom has been determined to spread information about CMV, connecting with many families and telling their stories of this unusual condition that plagues children. Her journey has led to connection with many professionals, parents, and others who want to see change happen. “Bella’s Bill” is currently in legislative development and will champion CMV Awareness. The bill includes Universal Screening for CMV at birth and education for expectant parents about CMV.

For more information about Bella’s Bill, go to:

• website for Bella’s Bill: https://www.bellasbill4cmv.com/
• KY CMV Family Stories: https://www.bellasbill4cmv.com/parent-stories
• Senate Bill 91 – Bella’s Bill: https://apps.legislature.ky.gov/record/21rs/sb91.html

For more information about the Make a Wish Foundation go to: http://www.wish.org

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by Brenda Mullins – 5/18/2020

The Kentucky Developmental Disability Network has created two documents for people with disabilities for the COVID-19 pandemic.  Know Your Rights is a one-page document that explains what a persons rights are during a pandemic, if they are admitted into the hospital.  The other document is helpful for medical professionals in the event you are admitted into the hospital during this pandemic.  It includes information about a person’s medical history, medications, and communication preferences.  If you have questions about these documents or your rights during a pandemic, please call Kentucky P&A at 1-800-372-2988. 

COVID – Fillable

Know Your Rights – COVID 19 (2)

by Brenda Mullins – 11/22/2019

Theo’s Family Journey

 

Theo entered this world 18 weeks early as a preemie.  Health issues kept him in the Neonatal Intensive Care Unit (NICU) for 18 long weeks.  During that time, he became very ill with lung issues which kept him on a ventilator for 11 weeks.  The transition to breathing on his own and the use of oxygen called a loss of vision and the required medications to heal the infections and keep Theo alive contributed to damage of his high frequency hearing.  As Theo’s parents, we had endured two miscarriages so the choice to give the medication with its possible adverse effects versus loss of life was a “no brainer”.  Within the 18 weeks in NICU, Retinopathy of Prematurity (ROP) was diagnosed.  ROP is an eye disease that can happen in premature babies.  It causes abnormal blood vessels to grow in the retina, and can lead to blindness.  Theo had a detached retina on his left side.  He also had problems with his lungs so he came home with all the lung supports to monitor his condition 24/7.

We had been home for 2 weeks when Theo had a detached retina in his right eye. It was recommended that we take him to Detroit for further treatment.  My husband and I were very quickly having to become the experts in decision making for our son.  Our job was to look at Theo holistically rather than depend on the recommendation of a specialized physician.  Our decision was to stay put rather than transport a medically fragile baby to Detroit and if it resulted in blindness, so be it.  At least we would still have our son.  It was 5 ½ years before that decision would haunt us.  Theo’s glaucoma resulted in the bulging right eye so his eye was removed and we did not realize how much pain Theo had been in until the eye was removed.  He seemed much more relaxed and recovered very quickly.   

Theo started preschool at age 3.  Since he was not on target in his growth and development, the struggle for teachers was obvious.  One of the teachers specialized in Autism and recommended that Theo be tested for autism.   The school district did the first testing.  After he started to KSB it was suggested we take him to Weisskopf Center in Louisville for evaluation of his sensory issues. That diagnosis directed our path toward the Michelle P Waiver and other resources. 

We began to explore transition options when Theo reached  5 years old.    We decided Kentucky School for the Blind (KSB) would be the right placement and we worked with the local school district to make it a reality.  The Admission and Release Committee (ARC) wanted him to stay at KSB during the week.  I asked “If this was your 5-year-old, would you send him away to school for five days out of the seven?”  After our refusal to send Theo to KSB as a boarding student, the DOSE suggested the day program at KSB with transportation daily to and from school.  We were not comfortable with him riding the bus for over an hour without one of us being with him.  So, thirteen years ago I became the paid bus monitor for those students who are visually impaired and going to KSB.  That has been a wonderful experience that allows me to keep students safe and also keep up with the needs of Theo at school.  It has been the best of both worlds.  I will always be grateful to that DOSE who looked at my son as a little boy who could learn and recognized the need for a specialized program.  

Theo is nonverbal and uses a dedicated speech device.  He acknowledges friends and likes to sit with them.  He is a “jokester” and has a joke page on his Talker.  He loves to sit around and share jokes to his friends, especially at birthday parties!  One of his favorites jokes is “Why did the gum cross the road?  Because it was stuck to the chicken’s foot! “  Now, if Theo tells you that joke, just laugh – you did not hear it from me.

His absolute favorite activity is music and his favorite singer is Adele but likes all kinds of music, like Billy Joel, Cher, Celine Dion and Michael Buble’.   We already have tickets to the Michael Buble’ in March and Elton John in April.  Theo has been to several concerts and just loves them.  Our family has season tickets to Broadway shows in Louisville – Theo has seen Phantom of the Opera, Chicago, and Lion King twice!  He went to see the Lion King last time with all his friends.  I ask him if he wanted to go and of course he did!  His teacher said he was a perfect gentleman – no behavior issues, and he turned his talker off when the show started.  How many young men do you know who loves the arts like Theo?

Theo is 18 years old now, and will have at least one more year of high school.  He has been in the World of Work Program for about a year, and works at Lynn’s Café.  The Café manager is actually visually impaired too.  She has been really good for Theo telling him she “did not put up with any nonsense.”  He has worked for about a year – the first 6 months he had to wipe down tables.  Theo didn’t like wiping tables, but he did it with some prompts. Our approach regarding his work was “Look, every job will have things you don’t like and things you have to do.  You have to do the pieces you don’t like in a job to get to the parts you like.  That’s how it is I the real world.”  For any work situation, I ask – “can you do the work”?  If he can, we have used something he loves (music) as an incentive.  With the sensory issues, his job coach and I look at where he will be doing the work and determine how we can help him succeed.  Last year, he worked 2 days a week for 1 hour, then increased his time 2 days for 2 hours, so he works 4 days a week.  This past summer, he worked at Kentucky Kingdom 5 hours, 5 days a week.  He put together the souvenir cups.  He carefully placed the handle on the lid; lid on the cup; then the straw in the lid.  He also assembled the boats that food was served in.  He would lay down the paper, then add a boat – independently stacking them using that pattern.  In order to continue doing these jobs, I provided supplies for all the kids in his class at school so they could have the same experience and Theo became the mentor.  Another job is filling the forks/knives/spoons containers and taking out the trash.  Sometimes his coach has him try jobs (like the trash) to see what he can do.  The trash was ruled out due to the lack of upper body strength to lift the heavy bags. Theo had four different coaches last summer and adapted quickly to each one.  That is one of his strong points.  During Theo’s work for J Gumbo, he bussed tables, with the goal of running the dishwasher after wiping the tables.  One of his favorite incentives there was their lemonade!  That would have been mine too.

 Our dreams for Theo match his dreams.  “Do you want your own place”, his father and I ask.  Theo’s reply – “NO, don’t want to move out, staying with Mom.”  As his parents, we just want him to be happy and have a purpose.  He wants a job that he loves.  I accompanied Theo when he toured LC Industries 3 times and he was thoroughly engaged.  The best part of working there is that LC Industries hires persons with vision impairments.  Employees are taught a job skill, and work 40 hours a week with benefits.  In preparation for working there, I bought safety goggles and told Theo he would have to wear them to work.  When he experienced the job and was told in order to do the job he must wear safety goggles – Theo said “I can do that!”  He never wanted to wear his glasses, but after he determined he could not do the job without them – no more problem.  Every time he goes out the door to work – he puts on the safety goggles.  This learning was applied for his personal care habits he had struggled with.  “When you work, you must put your coat and cane in the locker on arrival so you can work.”  Theo replies, “I can work AND I can do that!”  As Theo’s mom, I can read Theo so well in new situations.  He is currently working at J Gumbo Restaurant bussing tables 4 days a week.  His goal is to “run the dishwasher” so he buses the tables to do other things like “drink lemonade.” 

In preparation for getting a job, Theo has gone through the interview process with 3 interviews to date.  Common questions which usually occur during an interview were pre-loaded into the Talker.  Theo needed some assistance and/or prompts in finding the response at times which frustrated him.  Preloaded answers can be hard to find in a stressful situation as everyone has experienced within the interview process.

The greatest challenge for our family has changed with the years and the age of Theo.  For many years, we were trying to keep him alive; as his health stabilized, the challenge become working with individual school systems.  We saw a boy with great potential; some saw Theo as a boy that was non –verbal and non-responsive.  It took time for the collaboration of parent/district to bring about training, find a speech therapist who understood Theo’s unique needs, and find the right speech devise.  We experienced even professionals at supporting agencies often did not have a clue as how to work with him.  It took time to establish a healthy respect between family and professionals.  Families need teachers and others to “ask for help” when they need it.  Some seemed to think “they knew it all” and from a parent perspective, I would rather someone could work with me to identify the problem and then together we can figure out how to fix it.  I was at the school a lot, both subbing and as a monitor.  I read Theo so well.  A good example of problem solving happened once as I observed the interaction between a teacher and him at his locker.  He stood dead still as the teacher continued to tell him to “go now!”  This went on for about 5 minutes.  I talked with the teacher later and pointed out how just standing and berating him did not work (he just shuts down), so next time, give Theo the information he needs simply – in one sentence (e.g. it’s time for lunch, let’s go) and walk away from him.  He will need about 45 seconds to process the instructions, then he will come on.  That is now on his Individual Education Program (IEP) – wait time.

This past summer, Theo and I had the privilege of attending the Extended Core Curriculum (ECC) week with the Kentucky Deaf-Blind Project (KyDBP).  It was wonderful for me – I had freedom, like a vacation!  I also brought my puppy who is in training to become a Service Dog.  During this time, I had an AhHa moment!   Theo was given an IPad the first day and he does better if he knows what is coming next.  Since he carries a phone for music, an app was installed for a “talking calendar”.  Since it was tied to Google, I could actually monitor the movements, set up the calendar for the next day – Theo received the alert, then the 2^nd time it repeated the action on the schedule.  Theo knew what was coming up and it made such a difference.  As a result of this parent/professional collaboration, we had a successful outcome for Theo.  It went with him to school this fall.  It has his complete schedule (e.g. its 7:52 and you go to breakfast to 8:15 – in three minutes, you need to put your coat in locker; then repeats).  The alarm gets Theo up; an alarm gets him on the bus; and the alarm tells him to get off bus.  If any changes happen during the day, the teacher relates it to me – I go to his Google account, make the change, and it translates to Theo’s phone.  Is that amazing or what?!  We can set it up for the teacher and para to make the changes using Google, and it will let me know as well as alert Theo.

During ECC Week, Theo participated in horseback riding, learning about farm to table (from the dairy farm to the garden to picking vegetables), and managing money – just to name a few.  I was fascinated by the other students and parents.  I learned some things too – have you heard of HAPTCS? It is that subsystem of non-language communication which conveys meaning through physical contact.  It allowed Theo to have a better understanding of his environment with touch on his backing.  Since Theo has some hearing with a high frequency hearing loss and processing issues, I never learned sign language. I realized that it was yet another different world.  The interactions between adults/students and peer to peer was so interesting. I found myself trying to figure out what was being said too! I was not eavesdropping, I promise.

I have a final reveal for anyone who works with or will work with Theo.  Many times I go into his classroom and see him doing nothing.  I also observed him at pulling the same behavior at ECC doing nothing.  I find out he has told his teacher or therapist “I can’t.” My response to Theo is “Why do you play people?”.  I had to call Theo out on this one. He looked at me and smiles “I don’t have to work as hard.”  After all, you need to remember he is an 18-year-old boy – he will get away with what you let him.  Sounds like a typical 18-year-old to me!

 

 

 

by Brenda Mullins – 9/27/2019

Positive Eye Events

 

The Kentucky Deaf Blind Project (KYDBP), part of the Early Childhood/Special Education/Rehab Counseling dept,  was honored to have Gwyn McCormack from the United Kingdom here on campus to present on a range of teaching and learning approaches appropriate for all children which are inclusive of those with special educational needs. Gwyn is founder and director of Positive Eye www.positiveeye.co.uk  which is the leader of educational consultancy and training for professionals working with children and young people with vision loss and special educational needs.  Positive Eye travels worldwide.

Gwyn started her 12 day adventure in Louisville with parents and professionals for a three day training.  She introduced the weekend with a performance of her children’s story book of Marvin’s Market Adventure and Grandma’s Special Birthday Picnic.  Marvin’s story is a multi-sensory experience and Grandma’s Special Birthday Picnic.  Marvin’s story is a multi-sensory experience in literacy. Gwyn spoke of building concepts through teaching the critical features using the notion of the “ness” of people, places, activities, shape, form, and color that need to be taught to children while developing their auditory language, fine motor, tactile,  vision, book and story skills.  Families and professionals created object story bags, shoe box models, and tactile books based on two well-known storybooks.  

Gwyn spoke of building concepts through teaching the critical features using the notion of the “ness” of people, places, activities, shape, form, and color that need to be taught to children while developing their auditory language, fine motor, tactile, vision, and book and story skills.  Families and professionals created object story bags, shoe box models, and tactile books based on two well-known storybooks.  Families shared: “this was a great experience!  Thank you so much for sharing your passion and experience for us” “Such an amazing experience!  The biggest thank you to all who made this training in literacy experience possible”. Stephanie McSpadden, a student of the Visual Impairment Program here at the University of Kentucky attended last the Louisville presentation and said, “Thanks for all you do to help teachers be the best they can be for all students.”  We wish Gwyn the best and thank her for all her energy!

Gwyn’s next stop was the University of Kentucky for three full days of training and presenting to classes in the Visual Impairment Program, Early Childhood Education Program and Special Education Program.

Gwyn first covered the essential early life experiences which underpin the development of literacy and communication.  She went on to speak about her award winning program that is used across special schools in the United Kingdom called Positive Looking.  Positive Looking is a program which supports the development of visual skills in children with vision impairment.  She had time to stop by the Early Childhood Lab to perform the story of Marvin to the children.  The interactive story was enjoyed by everybody.  She completed her visit to UK with a presentation about Step-back.  Step-back is a whole school approach to support the learning and teaching of all children and young people with additional learning needs to become independent learners.  Step-back is a partnership with South East Wales.

Knoxville was the final destination for a multi-state collaborative event.  The Kentucky Deaf Blind Project partnered with the Tennessee Deaf Blind Project and the South Carolina Deaf blind Project to bring together families and professionals working with children and youth who are deaf/blind.  Gwyn again shared Marvin’s story and the multi-sensory experience showing parents how they can support learning at home.  We were so excited to make the story resources and models available to support parents’ understanding of the essential literacy skills their children can benefit from.  Gwyn – you can come back to Kentucky and Tennessee anytime!

 

 

 

 

 

 

 

 

 

 

 

 

by Brenda Mullins – 9/8/2019

 

 

 

The inspiring story of Sara as told by her grandmother…

My daughter Dara was born with Charge Syndrome.  My husband and I did not even know what Charge was, but we did our  best raising her.  We loved Dara, taught her boundaries; and she just adored her dad.  When he died, it simply devastated Dara.  She married the man who would become Sara’s father in 1998.  They had Sara and with both of them being deaf, every day was a challenge for them.  Dara was divorced from Sara’s father 8 years later, and shared custody with him.

I did not have contact with my daughter during those early years.  I knew Sara received services from the Commission for Children with Special Health Care Needs (CCSHCN).  She was in the Danville School for the Deaf for a period of time.  My daughter lost her partial custody to Sara’s father around 2010.  Sara and her dad moved often, which did not provide the kind of stability she needed.  Sara missed school way too much and failed 3^rd grade.

During that time, I was hoping to get custody of Sara, and finally convinced Sara’s parents to allow me to raise her.  My only stipulation was they had to give me legal custody.  When she came to live with me, she was wearing hearing aides and glasses.  Her general health was good except for needing dental work. With the help of the Shriners and the CCSHCN, she had spine surgery to place rods in her back.  We worked hard on her self-help skills and establishing a routine.  She adapted quickly to the transition.  We lived a rather isolated life in the country, but Sara had friends at school.

We were on our way!

Sara came to live with me at 8 years old, and she is 16 now.  Time is slipping away.  I am a 69-year-old widow trying to make decisions that will impact her for the rest of her life.  She also lives a life of challenges, but takes them on “one at a time”.  Showering is a real struggle for her due to balance issues.  She has some sight in one eye, and no vision in the other.  However, Sara remains happy, and is a social butterfly.  She loves school, especially history.   And of course, she could not do without her iPad.  Her teacher limits the use of it at times based on her behavior.  Sara has an phone and listens to music constantly.  She received BaHa implants which have added to her quality of life.  I really appreciate the iPad she received at KY Deaf Blind ECC Week with all the apps selected to meet Sara’s individual needs.

My goals for Sara are 1) a good education, 2) have lots of friends, and 3) live a life of inclusion out in the community. With her infectious laugh, I have no doubt she will make many friends through the coming years.   She loves to be outside and we walk often together.  She has been in Special Olympics for several years and is looking forward to competing in Track next year, which will be a new experience for her.  Maybe all that walking will finally pay off.

With the sole responsibility of Sara, I have recently started thinking  “what will happen to Sara when I am gone?”  I want her to live independently as much as possible, so I know I need to start exploring the possibilities for her future.  Many years ago when Diane Haynes, the director of the Deaf Project at that time, began to talk to me about “Futures Planning” for my daughter Dara, I didn’t think much about it.  But now that I am older, I know I must plan for Sara.

This week with the Deaf Blind staff, therapists, interveners and other families of students who are deaf blind opened my eyes.  It made me realize that students with even more difficult challenges than Sara were participating, learning, and getting out in the community.  I am amazed at the parents who work so diligently to make sure their child takes every opportunity for continued growth and development.

As I told my story to one of the Kentucky Deaf Blind staff, I can hear the distinctive laughter of my grandchild, and the speeding wheel chair of one of her friends.  I hear the encouraging language of coaching used by the therapists, mentors and others.   They are providing instruction, determining the right adaptive equipment for each student, and assessing skills as they go.  My Sara decided what she wanted to cook, made a grocery list, and went to Kroger to purchase what she needed with money in her purse.  And then she cooked!  The encouragement of everyone was amazing – they didn’t do everything for her but encouraged her and had high expectations, which made all the difference.  Sara went out with the group into the community and explored the Aviation Museum, learned how the airport process would work when she chooses to fly.  She loved the experience of making music with her friends!  The week with the Kentucky Deaf Blind Project, UKs Technology and mobility specialist, therapist, and graduate students taught me as much as they taught Sara.  There is hope out there for Sara, and that is what I had been looking for.   

by Brenda Mullins – 7/28/2019

MAX – the World Traveler

As parents, we dream of new babies with great anticipation. On day two of Max’s life, Dr. Brian identified Max with a syndrome. Dr. Brian had accumulated data (about 200 pages) of different life problems related to the syndrome for professionals and families. It was broken down informally into chapters. Max remained in ICU for what seemed like a lifetime, so I devoured that document. I took a chapter a day and my husband and I would process the information. It allowed me to read about the possibilities for future medical issues, which I should be watchful for down the road (i.e. detached retina).   Dr. Brian would still run tests, but he was confident we were looking at Charge Syndrome. So, we got out the pencil and paper to take notes as he continued talking– cranial nerves, deaf, blind, mentally retarded…My husband and I were devastated! We had gotten our pills all at once and it was hard to swallow. Through shock and tears, we returned that day to the Ronald McDonald house and our journey began.

One of the best things we did early on was attend the International Charge Conference. It happens every two years, and we pounced on it. There were approximately 120-160 families and professionals in attendance who were dealing with Charge Syndrome. We met lots of families and their children who were just like us – it changed our lives. No judgments, just acceptance. The conference introduced possibilities, answered questions, provided information we had not seen; and we took off running! One of the best take-a-ways was to establish a communication system for Max. We would not be where we are with Max today without that.

The Kentucky Deaf Blind Project (KYDBP) was instrumental in the transfer of knowledge and making communication with Max the main focus. KyDBP staff met us when Max was 3 months old. From the entire team, we learned to always alert Max before we touched him, changed diapers, and any activity.   We learned to tackle today’s issues, not future “problems” which may or may not come. We just did what KyDBP told us to do. Most importantly, we learned to enjoy Max and create that emotional bond that comes with being parents.

Max is 18 years old now. He has worsened considerably. He is totally blind but has some light perception.   Max is totally deaf with sensory issues. Our intentional decision to find a way to communicate with Max when he was very young has greatly impacted today. Communicating with him laid the groundwork for the rest of his life – and ours.

KyDBP staff went with us to ARC meetings when Max entered school. They provided information about how to teach Max, fought for him at times, and helped the educational system learn how to work with Max. Without the project pushing communication and signing partners for Max, he would not have been able to tell others his wants and needs. I can only imagine Max sitting in a corner, unable to communicate – locked in his own little world without interaction with others. This would have led to frustration, which has a direct link to behavior issues. Instead, Max trusts the adults around him and will negotiate with others when he feels a loving relationship.

KyDBP helped us give Max a soul – yes he was born with one but he was a medical basket case too. Society would have viewed him as different with defects and disabilities. Instead, Max is a world traveler. He has been to France, England, the Caribbean, and went to the Olympics in Japan. He loves swimming and since he has ear issues, we often negotiate the kitchen sink for his enjoyment. He pushes the cart at Sam’s Club, helps select items on the shelf, and knows he has to pay for it by swiping the card. Max needs a structured environment, in which he is physically engaged. He has friends and goes for ice cream. We have a routine at bedtime. He brushes his teeth, gets in the bed, reads a book with one of us, says his prayers, and lights out at 11:00. Max can predict what is next because of structure and routines.

My husband and I went to Belize for the Olympics and we left Max at home because of ISIS making threats. I thought, “what if something happens to us? What will happen to Max”? I admit that the future scares me. For him to hold down a job it would take several support people and what business would be able to afford that? “Who will take care of Max?” I see him in some kind of long-term care. We do not want our daughter to assume the role of caregiver but instead to oversee his care. We have been on the Supports for Community Living (SCL) waiting list for 3 years. We have a Michelle P waiver and I hear that there is something ahead that is like the Michelle P on steroids! We have students from Spalding who change every two years. To introduce these students to how they can interact with Max, we made some videos and posted them online about how to interact with him. This has been very useful, not only for the students but also teachers, and educational staff to visually demonstrate what Max is capable of. It also established a baseline for him to continue learning. I never want to hear “he can’t do anything.” Some have used it as an excuse to do nothing. I want to hear “Look at this – he can!” Whatever the future holds, Max will need purpose. He has purpose now – people tell us all the time how unbelievable and inspirational he is. At church, he signs the songs. What a blessing! He also does really well with daily living tasks. He goes to restaurants, community activities, and when he goes to the restroom, he turns off the water (which is incredible considering how much he loves water). Max has friends.

KyDBP helped us be proactive along our journey, and we will forever be indebted to them.

 

 

 

Max on Vacation

by Brenda Mullins – 11/3/2016

Danielle Burton has received a $5,000 scholarship from “Guiding Eyes.” The scholarship will assist with paying for her upcoming junior year in college. Congratulations Danielle!

NEWS ARTICLE FROM THE HELEN KELLER NATIONAL CENTER

HKNC Is Virtual Training Right For Me?   HKNC Virtual CVRP Overview VRC   VIRTUAL COMPREHENSIVE VOCATIONAL REHABILITATION PROGRAM (CVRP–V)HKNC is a leader in the field of virtual vocational rehabilitation services for and among individuals who are deaf-blind.HKNC offers virtual opportunities for assessment and training based on interests, schedule and goals of each consumer. In a time when virtual learning ensures safety, HKNC has adapted its Comprehensive Vocational Rehabilitation Program (CVRP) to an accessible virtual format. Participants still have the opportunity to engage with and learn from other deaf-blind individuals and experienced instructors.Assessment in the core areas of employment services, adaptive technology, communication, independent living and mobility with the clinical areas of audiology, low vision and mental health counseling are offered, virtually. Creative strategies are used to collect information during the four (4) week assessment and support is offered to connect to classes remotely. The assessment and training is tailored to IPE goals and interests with a focus on practical application in the individual’s life. The individual’s home and when available, the community are the natural training environments where beneficial strategies are discovered and utilized. An individualized training program is co-created with full participation of VR, the consumer and the HKNC transdisciplinary team of instructors. We invite each individual with their vocational rehabilitation counselor to explore the array of training options available.Prior to the beginning of the program, HKNC staff will assess technology available to the individual to determine the best instruction modality that would insure full access to information and instruction. Instruction may be provided by telephone, iPhone, iPad, email, computer, videophone, FaceTime, Zoom and/or Google classroom among other virtual options.Employment Services – The HKNC employment services address a range of areas dedicated to preparing each individual for success with a job that is commensurate with a person’s abilities, talents, interests and aspirations. VOCATIONAL ASSESSMENT This virtual assessment will provide opportunities to identify specific goals to strengthen skills and knowledge and become work ready. Learning opportunities will guide in building a reference point for work and to enhance work skills and strategies for success. Strategies include learning adaptations for an individual’s determined job to maximize job performance. The assessment process outcomes are varied. The creation of a work portfolio with personalized information about work skills, strengths, accessibility needs and adaptations for the specific tasks, related experiences and work objectives is developed.

Questions: Contact Kathy Richards via e-mail at kathryn.richards@nulluc.edu

______________________________________________________________________________________________________________

JOB EXPLORATION
Each individual will begin identifying their interests by completing interest inventories which could include but are not limited to: verbal or pictorial editions; O*Net Interest profiles; mynextmove program, https://www.mynextmove.org/ or assessments included in the virtualjobshadow program https://www.virtualjobshadow.com/.

Learning about jobs currently in demand, employers’ expectations and financial considerations of employment, workplace etiquette and culture are involved.

HKNC uses the virtualjobshadow program, a resource that provides opportunities for job shadowing and comprehensive career exploration. The program offers videos where an individual can job shadow professionals and get an understanding of the day-to-day life in a particular job. The section on job exploration offers a multitude of interest inventories that link to a full description of the career cluster chosen and a future look at employment opportunities. Each participant can also identify colleges in the home state that offer programs related to vocational interests. In addition, videos are provided to discuss soft skills. The program offers closed captioning and is accessible with JAWS. Assessment and training are provided utilizing the virtualjobshadow.com platform in combination with instruction by the HKNC transdisciplinary team.

WORK READINESS

HKNC provides opportunities to gain work readiness skills through participation in collaborative peer learning groups. These groups offer opportunities to learn from others to build a reference for work and enhance one’s knowledge of work skills including soft skills and strategies for success. Topics for work readiness include strategies for accessibility and understanding the principles of the Americans with Disabilities Act (ADA); practicing applications both paper and online; developing interviewing skills; developing a resume; and acquiring skill in self-advocacy, time management, problem-solving skills and soft skills.

A transition plan is the key to successfully securing employment. HKNC’s deaf-blind specialists are located throughout the country and, if available in your state, have a major role in assisting with job search. In addition, HKNC’s national employment & business relations specialist focuses on developing relationships with national companies. The specialist will work closely with each consumer and their VR counselor to provide job leads and introductions to companies. The specialist is also a resource for developing and providing sensitivity and orientation training with the prospective employer.

JOB SEEKING SKILLS

Exploring the job market in relation to each individual’s identified career interests, engaging in informational interviews, preparing a resume, experiencing mock or real time job interviews and gaining skills to utilize a variety of strategies and resources for job seeking are all included.

TRANSDISCIPLINARY APPROACH

Orientation and mobility skills, skills of independent living, communication skills training, adaptive technology, audiology and low vision are incorporated into each individualized training plan. In addition, a technology instructor will work with each individual to assess adaptive technology skills prior to the beginning of assessment.

COMMUNICATIONS SKILLS TRAINING

Communication methods in the work environment for face-to-face communication including communication cards, apps, text messaging and how to access group interpreting is provided. This includes accessing ASL interpreting and captioning during group meetings and accessing group video platforms such as Zoom. Instruction on banking and budgeting, time management, college exploration, sign language, fingerspelling and academics provide opportunities to develop and enhance communication skills for optimal participation at work, home, college and in your community. Distance braille classes are offered to anyone from beginners to someone who is interested in further refining skills and/or continuing to gain proficiency.

ADAPTIVE TECHNOLOGY SKILLS TRAINING

Training is provided in assistive technology related to screen magnifiers, screen readers, braille displays, text to speech, braille note takers, Dolphin Guide Connect, OCR software/hardware, digital book services, relay services and accessible keyboards. Training in technology for the Apple iPhone, Apple iPad, and iOS apps such as Object Recognition, GPS, and Proloquo2go, face-to-face communication, Zoom Meeting and social media is the gateway for accessible, effective and efficient communication in all domains of life. Computer and related skills including e-mail, internet, word processing, spreadsheets, presentations, Google docs, typing, operating systems, webcams/camera, scanners, drawing, readers, removable storage devices and video editing are areas of training available to match your individual’s needs for work, home, school and in the community. Remote programs such as JAWS Tandem and TeamViewer are used to access your individual’s computer for troubleshooting support if needed.

INDEPENDENT LIVING SKILLS TRAINING

The independent living remote assessment is completed through a combination of interview, self-report and video observation. The independent living assessment questionnaire is incorporated to cover areas of the independent living curriculum. The assessment may also include assignments to be completed and discussed with the evaluator. When possible, equipment will be demonstrated through video. Based on assessment in the areas listed below, appropriate training and equipment recommendations will be made. Independent Living training focuses on food preparation for simple and advanced meals which incorporates menu planning, following recipes, food shopping and safe tactile cooking techniques for the stove, oven, alternate cooking equipment and adaptive appliances.

Training on organization, labeling, wardrobe management, personal care, alerting devices and housekeeping skills provide the foundation for success at work, school, in the community and at home. Instructional modalities include using iPhones, iPads, videophones, FaceTime, laptops and braille devices using the platforms of Zoom and Google docs.

ORIENTATION AND MOBILITY SKILLS TRAINING

When performing a virtual orientation and mobility (O&M) assessment certified orientation and mobility specialists (COMS) will collect data in a variety of formats with each individual to determine training goals that will benefit their unique abilities and home travel environments. Data will be collected via a consumer interview, video submission, and information provided (if needed) by virtual assistants, which may include blind rehabilitation professionals (COMS, CVRT and/or TVI) and/or family and friends. Throughout this entire assessment, you as vocational rehabilitation counselor and the consumer will ultimately drive determined training goals. HKNC instructors will focus on specific attention to associated risk for all categories of assessment. The orientation and mobility services include assessment and training through discussion on orientation to indoor and outdoor environments, human guide skills, protective techniques, recovering dropped objects, cane knowledge and techniques, stair travel, indoor and outdoor travel, communication when traveling, street crossings, public transportation, night travel, preparedness for community travel and dog guides.

LOW VISION TRAINING

works with each participant to learn about current vision capabilities and functional visual difficulties using interviews and by reviewing vision reports. Assistive tools such as distance and near magnifiers, telescopes, and Artificial Intelligence (wearable device) may be discussed with a focus on exploring the benefits and concerns for each low vision tool. Corresponding implications based on shared visual diagnosis will be discussed to bring clarity and understanding on how to maximize each consumer’s current functional vision.

AUDIOLOGY SERVICES

The audiologist provides information regarding hearing loss, hearing function and what options are for managing the hearing loss. Whether a person would do best with in-the-ear, behind-the-ear or receiver-in-the-ear hearing aids and what assistive listening devices would work with those hearing aids are some of the topics that can be covered in a virtual consultation with the HKNC audiologist. Other considerations may include the use of cochlear implants or the BAHA Hearing Implant System and identifying situations where a consumer may still struggle with communication. Perhaps the addition of a remote microphone is needed. Is an FM system needed or will a remote microphone system be sufficient? Would Bluetooth connectivity be sufficient or would your individual also need direct audio input to access some of their auditory devices such as talking book players?

Knowing the options and understanding listening needs is critical to making an informed decision. The audiologist can provide personalized consultations to assist each individual with navigating the options.

MENTAL HEALTH SERVICES

Helen Keller National Center recognizes the need for emotional support as an integral part of every individual’s journey through the transitional stage of life regarding vocational rehabilitation training. At present, HKNC continues to offer mental health services remotely in the form of individual supportive counseling and support groups. These services are being provided by a certified licensed clinical social worker. The supports provided vary from psychotherapy to confidence building and self-advocacy. Mental health counseling plays a crucial role in a successful rehabilitation journey for individuals who may struggle with isolation, depression, anxiety, grief and loss. Presently remote supportive individual counseling is being provided. In addition, there are several support groups being facilitated. These groups meet the needs of individuals who are deaf-blind with various needs. Groups currently facilitated are Usher syndrome I, Usher syndrome II and hard of hearing support groups. The groups are eight (8) weeks each and provide a safe forum where an individual may obtain a clear understanding of the loss of both vision and hearing and begin to explore emotional adjustment strategies in regards to self and the impact it has had on their family and environment. With the support of the facilitators and the other members of the group, coping mechanisms and barriers will be explored and identified and advocacy issues will be addressed. The group focus is to support each individual with working through adjustment in anticipation to bringing them closer to adapting to everyday life with a combined vision and hearing loss. The process can facilitate more productive training experiences and in addition can help to build coping skills for the future. A peer collaborative group also provides connection opportunities with others, and affords a way to renew friendships and/or develop new ones. Groups will continue to evolve based on the need and feedback received from participants.

For more information, please contact your:
HKNC Regional Representative, https://www.helenkeller.org/hknc/nationwide-services or HKNC Admissions Coordinator, Dora Carney dora.carney@nullhknc.org

 

Extended Core Curriculum (ECC) Week 2019

https://youtu.be/rHimxqtd8O

                         

Looking Back

Extended Core Curriculum (ECC) Week 2018

 

Friends just hanging
Reception for everyone

 

 

Student and Family Stories –  

Click on Posts   

But first, meet Max –

Max and his mother talk about how he communicates.

FCC Designates ‘988’ As 3-Digit Number For National Suicide Prevention Hotline

 

The Federal Communications Commission adopted rules to establish 988 as the new, nationwide, 3-digit phone number for Americans in crisis to connect with suicide prevention and mental health crisis counselors.   The rules require all phone service providers to direct all 988 calls to the existing National Suicide Prevention Lifeline by July 16, 2022.   During the transition to 988, Americans who need help should continue to contact the National Suicide Prevention Lifeline by calling 1-800-273-8255 (1-800-273-TALK) and through online chats.   Veterans and Service members may reach the Veterans Crisis Line by pressing 1 after dialing, chatting online at www.veteranscrisisline.net, or texting 838255.

 

 

UK teaches Expanded Core Curriculum, Independence to Students who are DeafBlind

By Whitney Harder June 26, 2017

LEXINGTON, Ky. (June 26, 2017) — After a week spent at the University of Kentucky for the Deaf-Blind Project’s Expanded Core Curriculum(ECC) Camp, 17-year-old Max Cawthon accomplished things his mother never knew he was capable of.

Max, from Louisville, Kentucky, has CHARGE syndrome, a complex genetic syndrome that often includes vision and hearing loss. He was one of several teenagers from across Kentucky who participated in a camp for students who are deaf-blind last week at UK. The camp’s activities focused on life skills and establishing independence.

On Thursday, students took a trip to Kroger on Euclid Avenue, where they created their own shopping lists, found the items and paid cashiers.

“He picked up both gallons of ice cream and put them in the cart,” Cawthon said. “You could just see the pride, pushing this cart and standing a little straighter.”

Following the shopping trip, the group returned to The Food Connection on campus where they learned food preparation and safety skills, and cooked their own tacos and desserts.

“We’re very fortunate for the resources we have here, like the Food Connection and Kroger down the road,” said Donna Snyder, the state coordinator for the Deaf-Blind Project, which is based in the UK College of Education and serves the entire state.

The rest of the week consisted of a reception for the families in attendance, a music therapy session at the UK College of Fine Arts and visits to the Aviation Museum and Blue Grass Airport to learn about future career opportunities.

Graduate students in the UK Visual Impairment Program served as camp teachers, with support from an occupational therapist and mobility specialist, who gave lessons on traveling on escalators with canes and using human guides.

“All students have the core curriculum (reading, writing, math) – so what we do is teach the expanded core: assistive technology, compensatory skills like Braille and sign language, rec-leisure and independence skills,” said Gerald Abner, a clinical instructor in the Department of Early Childhood, Special Education and Rehabilitation Counseling.

Funded by the Office for the Blind in collaboration with the UK Visual Impairment Program and the Kentucky Deaf-Blind Project, which is based in the UK College of Education and serves the entire state, the camp is free and hosted annually at UK.

UK is the University for Kentucky. At UK, we are educating more students, treating more patients with complex illnesses and conducting more research and service than at any time in our 150-year history. To read more about the UK story and how you can support continued investment in your university and the Commonwealth, go to: uky.edu/uk4ky. #uk4ky #seeblue

The following news article was obtained from the Wildcat Monthly 2017, Wendy Strode, Outreach Consultant

At the January 18 Professional Learning Community (PLC) in the GRREC region, Donna Snyder and Kim Ziegler spoke to the group regarding the Deaf-Blind Project at the University of Kentucky. Donna and Kim were able to share many beneficial strategies and suggestions.

The group also welcomed Michelle Elkins, Director of the Kelly Autism Center at Western Kentucky University. She shared information about the programs that center offers.

As of  1.3.17:  The Equal Employment Opportunity Commission (EEOC) issued Regulations on the Federal Government’s Obligation to Engage in Affirmative Action for People with Disabilities New Rule Implementation Section 501 of the Rehabilitation Act Sets Employment Goals for Federal Agencies:  These final regulations reaffirm the federal government’s commitment to being a model employer of people with disabilities.  The rule consolidates existing requirements from a variety of sources, such as the existing one that federal agencies have written reasonable accommodation procedures and seek out qualified job applicants with disabilities.  The regulations also include new representation goals for employees with disabilities in the federal workforce and enhanced support requirements that will enable more persons with disabilities to seek federal employment.  The regulations set goals for federal agency workforces of 12 percent representation for individuals with disabilities and 2 percent for individuals with “targeted” disabilities.  Targeted disabilities are those emphasized in hiring because they pose the greatest barriers to employment, such as blindness, deafness, paralysis, convulsive disorders, and mental illnesses, among others. “Increasing employment rates for individuals with disabilities is a national priority for the federal government,” said EEOC Chair Jenny Yang.  “These new regulations provide concrete steps and accountability mechanisms to promote employment and advancement opportunities for people with disabilities in the government.”

Pictured from left to right: Donna Snyder, Deaf-Blind Project; Laura Daugherty, Ohio County, Melissa Dauby, Hancock County; Christina Law, Allen, Bowling Green City, and Monroe Counties; Natalie Hatfield, Larue County; Amber Durbin, Grayson County; Angela Powell, Larue and Caverna Independent; Charlotte Roach, Metcalfe County; Annie Wolf, Elizabethtown Independent; Valerie Lobb, Green County; Amber Durbin, Clinton County; Sondra Reece, Barren County; Amanda Herron, OFB; Lucindy Atwell, Hart County; Kim Zeigler, Deaf-Blind Project; and Wendy Strode, Outreach Consultant.

Concerned about all the hours children spend starting at screens?

Global Epidemic of Blindness on the Horizon – read to find out why