Wednesday, June 18, 2014
Wednesday, June 4, 2014
"The Epilepsy Association of Utah is pleased to announce that we have been gifted 16 tickets to conference. If you wanted to attend, but the cost was restrictive, please email email@example.com letting us know you are interested by giving us your name and your guests' name (if needed). Limit of 2 free tickets per household. See you Saturday!"June 7th, 2014
8am to 4pm
500 S Main St
Salt Lake City, UT
Press Release with additional information below:
For Immediate Release
Epilepsy Association of Utah Announces
“Seizure Smart” Education Conference
SALT LAKE CITY – Monday, May 19, 2014
The Epilepsy Association of Utah (EAU) announces its annual “Get Seizure Smart!” Epilepsy Education Conference, presenting the latest in epilepsy science and treatment options, as well as tools and resources for those affected by epilepsy. The “Seizure Smart” conference will be held Saturday, June 7, 2014 from 8 a.m. to 4 p.m. at Little America Hotel, 500 South Main Street, Salt Lake City. Individuals with epilepsy, families of those affected, medical personnel, educators, and first responders, as well as the general public, are invited to attend.
Dr. Ian Miller, pediatric neurologist at Miami Children’s Hospital, international expert in treating Dravet syndrome and member of the Dravet Syndrome Foundation’s Professional Advisory Board, will be the keynote speaker and special guest. He is scheduled to discuss the discovery of genetics in epilepsy and the push for research into CBD-based treatment options.
The conference will feature breakout sessions with renowned experts presenting on topics including the complexities of epilepsy, genetics of epilepsy, latest treatment options, alternative therapies, coping and advocacy, managing behaviors and sibling behaviors, mental health, trusts and living wills and patient resources. Several organizations and vendors will be in attendance with tables providing helpful information, a few of which include the Division of Services for People with Disabilities, Hope 4 Children With Epilepsy, Utah Kids, Utah Parent Center, Autism Council of Utah and Brain Balance Centers.
With the recent passage of HB105 “Charlee’s Law” allowing for the possession of high-CBD/low-THC cannabis oil for the treatment of intractable epilepsy in adults and children, the EAU will present the specifics of the new Hemp Extract Registration Program and the safe and effective use of the therapy. Jennifer May, co-founder of Hope 4 Children With Epilepsy, the EAU’s parent advocacy group who lobbied in favor of the bill, will be walking patients through the details of the law and the processes required to gain access to approved extracts for treatment. As the leading provider of high-CBD/low-THC cannabis oil, Realm of Caring’s own Heather Jackson will present information about the oil as a treatment for intractable epilepsy. Realm of Caring is a non-profit organization in Colorado who oversees the cultivation of the Charlotte’s Web plant and its processing and distribution as Alepsia, a non-psychoactive extract infused in oil.
“Our goal with the Seizure Smart Epilepsy Conference is to provide those affected by epilepsy with the tools needed to educate themselves, as well as those around them, and obtain the best treatments possible, whether they be mainstream or alternative,” said April Sintz, EAU Conference Chairperson and H4CE leadership member. “We want to empower people by giving them choices and resources that are available to all of us here in the state of Utah,” Sintz stated.
Cost for the conference is $30 for the public ($15 for EAU members) if registered in advance; an additional $10 charge will apply for those registering at the door. A light breakfast, a catered lunch, and a “loot bag” will be provided for each attendee. Registration is open on the EAU website at
ABOUT THE EPILEPSY ASSOCIATION OF UTAH
Founded in 1973, the Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life
for all individuals living with epilepsy and seizure disorders. One in 26 people will develop epilepsy at some time in
their lives, totaling over 100,000 people in Utah alone. Epilepsy is the fourth most common neurological disorder
in the US, after migraine, stroke and Alzheimer’s. The Epilepsy Association of Utah offers a public education
program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits,
educational conferences, summer camp and more. Visit http://epilepsyut.org for additional information.
Media Contact: Jennifer Hardy May
Thursday, April 17, 2014
Friend to FriendJulie Bouck, a PCMC physical therapist in Ogden, teaches a dance class to children with special needs. One of our former parent partners, Kim Schneider, who immensely contributed to the support of our super kids, danced with Julie for fifteen years. The class is free to all children, ages three to fifteen that have a disability.
Information contributed by Kim Schneider:
"The class is at the Centerpoint Legacy Theater in Centerville on Fridays from 4:15 to 5. There is no limit to the disability either. She has had kids in wheelchairs that teachers or other kids help move the wheelchair to the beat of the music and they love it."
Thursday, March 27, 2014
Salt Lake City, UT 84101
Toll-Free in Utah: 1.800.468.1160
PCMC Neurobehavioral Clinic
PCMC provides diagnostic evaluations, neuropsychological assessment, home programs, behavior management, and medication consultations
Thursday, March 6, 2014
Family Partner, Northern Utah Pediatrics
Medical Home Project
EagleEyes, offered by The Opportunity Foundation of America, is an eye controlled technology and program that acts as a mouse for adults and children with disabilities. By taping electrodes to the user's temples and connecting the electrodes to the technology box, an individual can control their computer screen.
Wow. So many times, I have thought, "I know my kid is in there. She just can't control her hands or speak." One of the only things in her environment she controls is when she finds a string and plays with it. I want more for her.
I have not had my daughter try EagleEyes, yet I intend to do so very soon. Just imagine my daughter, a twelve year old who is non-verbal and has limited motor function, playing a game on a computer screen with her eyes. She would be able to look at a small area of the screen for a moment which results in a mouse click. My daughter would not even need to hold her head still. Awesome feature, especially since she sways back and forth. She could even use her head movement to control the device to play with many computer programs or the internet.
Through a grant, EagleEyes is available for only $800 during 2014. The Opportunity Foundation of America, a non-profit, only asks for a donation to cover the cost of the system and training. That is pretty amazing considering that it is normally $1200, considering the start up cost for the company as well as the development of the technology. There is even a possibility that Utah DSPD through Medicaid could cover the cost. Let's hope. I am convinced that the makers, INOVAR, Inc. want to help people improve their quality of life.
To obtain EagleEyes, schedule a free evaluation.
Saturday, March 1, 2014
Many individuals with disabilities, individuals with brain injury, or people with mental illness can benefit from activities which improve brain placicity. Activity improves brain placicity. This applies to cognitive function, emotional function, and motor function.
The most effective way to learn a task is to practice it on a daily basis in the home and in a community setting. The individual needs to practice a lot, yet with rest periods. Start with simple tasks that are variable. For instance, if a child is learning to walk, using a walker is good as long as that is not the constant. The child needs to practice a sitting position to standing position, practice walking fast, and practice walking slowly.
Use positive reinforcement. Brain placicity changes when using objects that stimulate. When a child is learning motor function in feeding themselves, they will most likely perform at a higher level if they are eating a bowl of ice cream! Find some motivators that your child loves, for example - toys, TV, or hugs. Motivators work the best when there is a highly desired object reserved for a specific task. For instance, if a child needs to learn to have eye contact and wants to work for obtaining a favorite toy car, the toy car is rewarded only in that situation, rather than at random requests throughout the day. This way, the child will learn that if they want their favorite toy car, they must have good eye contact.
Daily interactions are the most important therapy to improving brain placicity. A parent doesn't have to spend three hours doing therapy for their child. Two minutes can make a significant difference. Have them put dishes in the dishwasher, listen to music, or throw a bunch of balls in the backyard and have your child pick them up. Take your child for a jog in a specialized stroller, read to them, or have them help you cook. Any stimulation helps. Use what you normally do as daily activities in your home.
Sometimes the goal is about maintaining function, depending on the abilities of the child. Choose your battles. Pick realistic goals and realize that although variation is important to build brain placicity, it is also important to have some constants so that the child can remember what they have learned. Come back to learned motor skills in order to master them.
Look to resources in your area. Swimming is an excellent way to improve motor function and brain placicity, especially if the exercises change. Have your child try adaptive skiing or adaptive bicycling. Check with your school, state services, or medicaid to see if your child qualifies for occupational therapy. Keep your child engaged and moving on a schedule each day.
Wasatch Adaptive Sports
National Ability Center
The one thing you can count on with individuals with dual diagnosis is that there will be constant change. When a change in health or behavior happens, be thorough. The new issue may be due to an underlying issue. It could be a stressor from school, a UTI, a change in thyroid levels, an ear infection, sensory processing difficulties, etc. Look at the antecedents to what is happening. Often the issues are due to a change in routine or a change to their environment. Did your family move a month before it started? Did the child's diet recently change?
The next step is to look at changing behavior by working with a social worker or behavioralist. Look at motivators, preferably non food motivators. Take one behavior at a time. One method is to give the child a sticker on a chart for doing the behavior correctly. Once the child gets a certain number of stickers, they can receive a reward or positive reinforcement. Try to filter stimulants that distract the child.
If caregivers are working with medications, try one at a time and take brief notes of how they react. Give each med at least two weeks. "Start low, go slow." Sometimes a child on multiple meds even needs to peel back meds with help from their doctor. Some children do not need the meds they are taking if the symptom being treated is not being manifested anymore. Pay attention to side effects. Notice if the meds effect the child's mood, gate, energy level, or awareness. Be sure you are going to the right doctor and that they know how all of the medications interact.
In the end, communication with your team matters. Remember that you are the expert on your child.
Wednesday, February 5, 2014
Friday, February 28, 2014, 5:30 p.m. – 9:00 p.m.Cost: Dinner & Keynote on Friday $20
Cost: Keynote Only on Friday $10
Saturday, March 1, 2014, 8:00 a.m. – 4:00 p.m.Cost: Saturday Only $20 (Lunch Included in Price)
Location: Murray High School (5440 South State Street, Murray, Utah)Cost: Friday and Saturday $35 (Discount Price)
Conferencia de Conexiones Familiares 2014
Haga click aqui para registrarse!
Sabado, 12 de Abril 2014Hora: 8:00 a.m. – 3:00 p.m.Lugar: Murray High School (5400 Sur State St. Murray, Utah)
Costo: $5.00 (Incluye Almuerzo)
‘Enfermedades Mentales y Conductas Desafiantes’Orador Principal Dra. Alicia Hoerner
En esta conferencia se presentarántalleres a donde a los padres puedan escoger de acuerdo a sus necesidades tales como:
- Necesidades Especificas de Aprendizaje
- Habilidades Sociales
- Plasticidad Cerebral
- Disciplina y Comportamiento
- Sección 504, la otra opción de la ley
- Dual Diagnosis como
- Enfermedades Mentales
- Educación Primero
También tendremos una amplia feria de exposiciones de recursos en la comunidad.
Regístrese lo más pronto posible llamando a los teléfonos (801)272-1051, (801)272-1067, o Araceli (801)949-6442
Saturday, December 14, 2013
Tuesday, October 22, 2013
Thursday, September 26, 2013
Thursday, September 26, 6:30-8:30
Davis Vista Education Center
Primarily for ages 17+
Did you know that if you have a child with special needs that you may need to become their legal guardian either prior to or when they turn 18 years old? Find out why and when this is a good move. Fill out paperwork to become your own lawyer. A representative from a law firm will be present, offering information about representing children with disabilities.
SIBS DAY - A Workshop for Super Important Brothers and SistersSaturday, November 16, 2013
Wednesday, August 28, 2013
Grandin's passionate sentiments and experiences in empowering young people with autism were obvious as she spoke to attendants at the conference. She spoke about how her mother taught her rules through chores, games and turn taking. Her mother would give her a choice to go work on a farm for the summer or to go for a couple of weeks. There was no option not to work, so Grandin learned to make a choice and accept responsibilities.
Emphatic that young people with autism need to be stretched, Grandin suggested many types of work opportunities comparable to a paper route. She said that getting a small, regular job early (about age thirteen) would teach a child to work, to be on time, and to communicate. There are many local opportunities, Grandin noted, such as walking a neighbor's dog, washing dishes in a restaurant kitchen, or cleaning a few rooms in a building. "Don't hold them back," Grandin emphasized. She said that she is seeing too many autistic young adults staying in their rooms, playing video games. Ways to prepare autistic young adults for the workforce can be done one small project at a time and by building a portfolio. She said to target the portfolio and get it into the right hands to mitigate the interview process, which is exactly what she did in her own career.
As one of Grandin's favorite examples of a young autistic entrepreneur, she shared a new business venture her nephew launched in New York City. The product...the poop briefcase. Grandin could hardly contain her laughter as she explained the product. She said that with the high rises in New York, many dog owners don't want to take their dogs all the way down to street level to let them do their business, so her nephew marketed training the dogs to go in a briefcase in the apartment, so that it could later be taken discretely down the elevator and disposed of later. Grandin continued giggling as she questioned why people didn't just use the Times and dump it down the shoot, while expressing how this creative business helped her nephew excel.
Acknowledging that many autistic children have a difficult time with sensory issues, Grandin cautioned parents and caregivers to be careful to not overwhelm them. The point is to stretch them, not to push them past their threshold, but to "stretch" them just beyond their comfort levels. Grandin pointed out that many autistic children have mild to severe sensory issues which must be addressed in order to acclimate to life's situations. She said that with sensory neurological problems, accommodations are essential and that sensory issues are neurological. The brain is processing something physiological, not just behavioral. The behavior is a manifestation of the physiological issue. There may be hidden painful medical problems for the nonverbal. In many individuals with autism, Grandin explained that the amygdala (fear center) of the brain is three times larger. Some of her suggestions included using pressure or weighted vests to help the nervous system, slow swinging to stimulate speech, singing-rather than talking, or trying one medication at a time to see what works best.
If a child has auditory detail or auditory processing disorder, there may be a greater ability to hear hard consonants. Her suggestion is to slow down. Emphasize and clearly dictate all of the hard consonants, so that the child can process them more easily. She also said that if a child has attention shifting slowness where they have a difficult time looking up and looking down between facial cues and body movement, social interactions may need to be taught. Grandin suggested that the best way to teach social "stuff" is to give the instruction, rather than saying no. "Say what the kid should be doing," Grandin instructed. Children with attention shifting slowness often experience visual images breaking up and fragmenting. Words on a page may vibrate. In this situation, she said to experiment with different backgrounds in the classroom or tinted glasses.
Along with sensory issues, Grandin said that learning styles need to be considered. She specified a few types of "thinkers" such as the photo realistic thinker, the pattern/music/math thinker, and the verbal thinker. She voiced concern that verbal thinkers are taking over the school system. Hands-on learning in the classroom teaches resourcefulness and problem solving, she said. Grandin said that the autistic mind sees the details and encouraged listeners to "fill up their minds with variety."
The audience had a chance to see first-hand how Grandin can be affected by auditory processing disorder as she was interviewed following her speech. As she answered questions about her childhood, her inventions, and gave additional tips to parents, staff at the conference attempted to move the podium so that it would not block the view of part of the attendants. Each time they shifted the podium back, the microphone was jostled and Grandin would turn her head to look over her shoulder. It must have happened six times, when finally, an exasperated Grandin inquired, "What are they doing?" After the situation was explained, she responded, "Well, why don't we just move our chairs forward instead?" The amused audience chuckled at her most logical response, while identifying with her perspective. Grandin, most definitely, shared her quick wit, her empowering ideas, and a reminder to look at life through a different lens.
Resources recommended by Temple Grandin:
Article Written by Jeanette Pascoe
Family Partner, Northern Utah Pediatrics
Families of Super Kids
Mother of a child with autism, epilepsy, and multiple disabilities
Thursday, August 22, 2013
Wednesdays 10 am-12 noon at Arrivals Birth Suite
Contact: Karin Hardman, IBCLC, RLC firstname.lastname@example.org 801.980.1129 $20 per session/$5 with Medicaid card
Monday, July 29, 2013