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Demystifying Dyslexia for Parents
Dyslexia has no cure or quick fixes, but it can be overcome.
Private schools like Gow exist to provide dyslexics with the highly specialized instruction that they need. In public schools, parents of dyslexic children must work closely with teachers and principals to meet the educational needs of their children. The journey for families whose children struggle with dyslexia is a difficult one. It is essential that parents become advocates for their children. Even before school starts, parents and families must take action and address recognition of a learning difficulty.
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About the ShowImagine having to deal with each word you see as if you'd never seen it before.About one in ten of us suffer with the reading disorder known as dyslexia.As literacy becomes even more important in society, dyslexia is affecting a new generation.
Hosted by Olympic champion Bruce Jenner, Demystifying Dyslexia takes viewers on a journey of discovery about the challenges of living and learning with dyslexia. In his life, Bruce Jenner has achieved many things. He is an Olympian, an actor, author and entrepreneur and he has dyslexia.
Watch the entire program here: Demystifying Dyslexia “How well kids learn to read and how far behind they are is a public health issue because it affects everything that happens to them for the rest of their lives." Louisa Moats, Director of Professional Development and Research Initiatives with Sopris West Educational Services
This national documentary focuses on personal stories, educational best practices, and the latest scientific research. The program illuminates important contemporary issues surrounding dyslexia. In the program we visit The Gow School outside Buffalo, New York and Edgewood Elementary School in Baltimore, Maryland. We learn from professionals at Georgetown University, Jemicy School, and Jacksonville's Juvenile Courts. Demystifying Dyslexia allows us to meet inspiring individuals who confront the challenges of dyslexia every day.
Language is a complex code. To decipher words we must connect different combinations of letters to the sounds they make. A process that becomes automatic for most of us is muddled by dyslexia. How the neurons in our brains connect to one another is what gives us all different strengths and weaknesses. Some of us are simply not wired for reading and writing.
The International Dyslexia Association defines dyslexia in the following way:Dyslexia is a specific learning disability that is neurological in origin.
It is characterized by
These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction.
Secondary consequences may include:
"The difficulty with dyslexia is making the connection between letters and the sounds they make-- and being able to look at a letter and know what sound I should utter out of my mouth."Kathy Rose, Chairperson of the Reconstructive Language Department at The Gow School
The History of Dyslexia Just over a century ago, school boys in England and the United States exhibited the first evidence of dyslexia. The inability of these otherwise bright students puzzled doctors.
"...kids who couldn't learn to read were written off. They were diagnosed as 'feeble minded,' even though many of them had above average intelligence. Samuel Orton was one of the first doctors to realize that there was more to the story..."David Gow
A young physician named Samuel Orton took interest in the subject. He called the affliction "Strephosymbolia", meaning "twisted symbols." Dr. Orton's terminology did not last, but his name became synonymous with the study of dyslexia. The Orton-Gillingham method of instruction is one of the most widely used and proven methods to impact learning in the dyslexic student.
Program 3 - Caregiver Support
The third episode in this series takes a look at outside support available to home caregiving, taking care of the caregiver, effective communication with the healthcare system, and exploring caregiving options when you can no longer care for your loved one at home.
About the Guests
Dr. Robert Stall, GeriatricianDr. Stall's main professional mission is to create senior-friendly, senior-smart, and senior-competent communities using a collaborative, grassroots approach. In 2004, he coined the term Grassroots Geriatrics™, symbolizing the critical role older patients, caregivers, volunteer organizations, local businesses and educational institutions can play to improve the quality of health and living for seniors throughout the world.
Cheryl Thomas, CaregiverA 51 year old Buffalo native, mother of two and grandmother of three. Cheryl is a full time caregiver of her mother who is a three time stroke victim. Cheryl has been caring for her mother for almost seven years. Today, her life is filled with the responsibility of caring for her mother which has become her main priority. Being a caregiver has consumed most of her time, which has forced Ms. Thomas to learn how to accept these responsibilities and still be able to integrate a few outside hobbies. Cheryl credits her love of God and family for equipping her to have the strength and dedication needed to lead an eventful life full of fun and love.
Patricia Fernandes, Director of Social Services, Catholic Health System - Father Baker ManorPatricia is an advocate for patients and caregivers. She is there to be the one to find the best resources possible for the patient and caregiver. She says, "I need to have a good rapport to know what's best for them, what I can do to set up the best services they will need when they go home or wherever they happen to be going."
Respite Care and Home AssistanceThere are a number of respite care options for families in need of extra support. Resources shows that 50% of patients older than 65 years of age have three or more medical conditions. Prioritizing conditions is an important part of balancing care of the elderly. A focus should be on preservation of independence and function.
Support is available from:
Adult Day Centers Offer CAREGIVERS:
Adult Day Centers Offer PARTICIPANTS:
Respite Care and Home Help ResourcesAARP - Respite Care - A Break for the Caregiver
Finding and Choosing Respite Care Services
AARP - Hiring a Home Care Worker
What is Home Health Care?
Senior Medicare Patrol Project – SMPIt is estimated that each year one out of every ten dollars spent by the government on health care is lost to fraud, waste and abuse. To combat this drain on the Medicare and Medicaid system, hundreds of individuals across the nation have teamed up to volunteer for the Senior Medicare Patrol Project. This dedicated group of individuals provides education and training for seniors and their families on how to detect, prevent, and report suspected abuse and fraud.
For more information go to www.stopmedicarefraud.gov
Taking Care of the CaregiverStatement from Cheryl:"Caregivers are faced with challenges. This is a sacrificial job. And if you're not ready to take the sacrifice, then maybe you need to look at other options. But in my case, I have a wonderful daughter and son and an aunt who will assist me in whatever is needed to be done. The aides will assist me however needed. But yes, my mom told me that I needed to go on vacation."
Dr. Stall talks about the signs of caregiver burnout:"There is tremendous stress in caregiving. It's a hard job. And when I see a caregiver and a loved one in the office, things that tip me off, the caregiver looks tired. They might be depressed. You can see it on their face. They make you feel depressed. And then just general stress, irritability. You can see it in the interaction of the loved one with the caregiver."
Taking Care of the Caregiver ResourcesTips for Avoiding Caregiver BurnoutCaring Today – A Magazine for Caregivers
Program 2 - A Day in the Life of a Caregiver
Some caregivers refer to their day as the 36 hour day. Between balancing family life, sometimes another job, and caring for your loved one, the days can be long and stressful. This episode will follow a caregiving families through the day to day challenges they face. We will discuss proper nutrition, time management, moving and positioning, creating a safe environment, and taking time out for yourself.
Paula Pless, Director Safe Patient Handling and Movement- Kaleida HealthPaula has over 28 years of experience in Long-Term Care and over 5 years in Acute Care. She has developed, designed and implemented “Safe Patient Handling Programs” since 1996. She currently is working for the largest health care provider in Western NY, where she is implementing a SPHM program in all aspects of health care, which includes LTC, acute care and Kaleida's VNA Homecare Agency. She is GE Six Sigma trained, a CQI trainer and an Ergonomic Evaluation Specialist. She has assisted OSHA in developing the Nursing Home Ergonomic Guidelines and has authored several articles on the OSHA website concerning implementation of Zero-Lift programs and authored several articles in the HCPRO journal and recently in Caring for the Ages- “Understanding the Pivot Transfer”. She has provided expert witness testimony in the ergonomic case against, Beverly Enterprise.
Susan Moran, CDM,CFPPSusan started her career in food service at the age of 17, as a part time food service aide at Beechwood Residence in June of 1978. In 1979, Susan was promoted to full time cold food prep aide and in 1982 and was promoted to day shift cook. While working as a cook, I attended the Dietary Managers certification course at Erie Community College and in 1987 became a Certified Dietary Manager, Certified Food Protection Professional (CDM,CFPP). In 1988 she was promoted to Assistant Director of FNS and in 1996 promoted again to the Director of Food & Nutritional Services at Beechwood. In August of 2006 Susan was promoted to Neighborhood Director for the Beechwood Homes.
Jayme Smith, CaregiverAfter living in Georgia for over 16years, I returned to WNY five years ago. I was a first and second level manager with a Fortune 500 Communication and Cable company. My sister gave me a crash course in health care, and I'm still in training learning care giving skills. Helen, trained me on giving insulin shots, checking my moms blood sugar level, preping her meds, to giving her a proper bath. I will be enrolling into lifeskills classes with The American Red Cross soon.
Personal CareThe first episode of Life Journeys focused on preparing to be a caregiver. This episode is more specific. We're going to look at the challenges that caregivers face each day and provide some great solutions. We're going to address critical areas, if you are going to care for somebody in your home. Personal care, home safety, nutrition, and caring for the caregiver are addressed.
Some caregivers refer to their day as the 36 hour day. Between balancing family life, sometimes another job, and caring for your loved one, the days can be long and stressful. This episode will follow caregiving families through the day to day challenges they face.
What comes to mind when you hear a caregiving story?
Wendy Danna gave up her job to care for her mother who had a stroke and a fall. Feeding, washing and assisting 24 hours a day can be challenging. If you are not trained, it's easy to injure yourself or the person you are caring for.
Jayme's sister Helen (who is a nurse) created a tip sheet to keep track of their mothers daily activities:
When the doctor comes for house visits, everything is on the sheet.
Personal Care Resources
NutritionWhen preparing meals include daily amounts of protein, fiber, fluids, ands fats. Caregivers should plan in advance when preparing meals for themselves and/or for care recipients. Providing care can put demands on the caregivers' time. It is important that the caregiver select quick and easy recipes that will save time, steps and energy.
Susan Moran Meal Preparation Tips
The mechanics of eating
Other emotional and social aspects of healthy eating
How do you know if they are eating if they don't live with you?
Home SafetyMost people want to stay home, but their environment may need to be adapted as their abilities change or if you have just taken someone in, you may need to make some changes. When you go into the home, look at the rooms they need to have access points. The most dangerous rooms are the kitchen and the bathroom. The cause of falls occuring in the bathroom may be wet flooring and climbing into a tub. In the kitchen, the most common injuries are burns or cuts. You need to remove the safety risks that are in those rooms. Get rid of the throw rugs. And walk through that home. Paula says, when she does a home-safety assessment, she will go into the home with the person and walk through that home with them so she can see where they need to go and what they need to do. It's a good idea to encourage their independence by making their environment fit their abilities.
In all areas of the home check:
Home Safety Resources
Taking Care of the CaregiverA day in the life of a caregiver is full, to say the least. For most caregivers, there never seems to be enough hours in the day to get everything done. From early morning to late evening, a caregiver spends each day assisting with personal care, preparing healthy meals for special diets, giving medication and positioning and transferring while practicing health and safety techniques. Chances are, your daily schedule could benefit from time-saving tips that can help make caregiving responsibilities a little easier.
Time Saving Tips
Caregiver StressWithout taking proper care of yourself, the physical and emotional strain of these responsibilities can cause depression, anxiety or even illness. You may be too busy in your daily routine or are too caught doing for others that you ignore the signs of stress. Some caregivers don't pay attention to these signs until an emotional crisis or breakdown occurs. But, by recognizing these signs early, you can make changes that will help alleviate your stress and help you to stay physically and emotionally healthy.
Signs of stress:
These feelings are normal, but they are not healthy. They are warning signs that you need help.
Caregiver Stess Resources
Program 1 - Life Journeys - Solutions for Caregivers
In this first episode, we focus on the basics of caregiving. Topics of discussion include:
Susan and her guests conclude by sharing their best personal advice to new caregivers.
Miriam R. Callahan, Project Coordinator, Caregiver Resource Center, Erie County Senior ServicesMiriam's job is to help caregivers. Her work experience in the field of aging encompasses facility based health care, in-home health care and case management for the frail, homebound elderly.
Miriam's StoryI was an only child and my parent's only informal support. Shortly after dad died, my mom was hospitalized for about a month, and the discharge planner felt it was unsafe for her to return alone to her large, two-story home. She reluctantly moved in with me and my family. The thought that she would eventually be able to return to her own home and live independently kept mom somewhat content at my house. Her house was empty with all the utilities on the entire time she was with me. We watched mom's physical abilities gradually decline, though cognitively she did very well for someone in her late eighties. We had our challenges as mom needed more and more care but fought to do everything for herself. She had always been a very capable woman and was unrealistic about what she could still do for herself. I finally got her to agree to let me hire in-home help to assist us, which worked out very well. I depended heavily on my co-workers to listen to me vent and validate my caregiving efforts. Eventually, we acquired a hospital bed for mom's room (the former sun porch)and provided total care. Like many other caregivers, I was everything for my mother: nurse, social worker, hairdresser, chauffeur, cook, seamstress, bookkeeper, etc. I was thankful I had the training and background to do all this, but was also resentful at times that my entire life was changed by these caregiving responsibilities. I was always tired from being up every night with mom while still holding a full time job and keeping the household going. Mom was with me seven years before she quietly passed away at 93 years of age.
William (Bill) Wipfler, Ph.D., ReverendEpiscopal clergy for 51 years, Missionary for 12 years in the Dominican Republic with his wife Pauline, served as Latin America director and then human rights director for the National Council of Churches.
Bill's StoryI worked for the Presiding Bishop of the Episcopal Church in 1988 and for the Archbishop of Canterbury at the United Nations office of the Anglican Church in 1991. Pauline (my wife) was diagnosed with Alzheimer's disease in 1988 at the age of 56. I reduced my workload to half time to become her primary caregiver and retired fully in 1995. Pauline was a distinguished teacher of English as a second language. She was honored by PBS in Metropolitan New York as teacher of the year, and later honored by Newsweek Magazine as teacher of the year. As Pauline's disease progressed and caregiving was taking a physical toll on me, my four children encouraged me to move to Western New York to be near my two daughters. In memory of my wife, the Memory Walk is planned in Erie, Niagara, Cattaraugus, Chautauqua and Genesee counties. In 2006, more than $180,000 was raised! Thanks to all of our sponsors, walkers, volunteers and supporters for making last year's event a success! I also became involved with the local Alzheimer's Association as a member of their support groups and then joined as a member of the advocacy and public policy committee. I began speaking at churches with professionals on spirituality and caregiving issues. Several years ago, I was elected to the board of the Alzheimer's Association.
Bruce Reinoso, Attorney at LawPartner in the law firm of Magavern, Magavern & Grimm, L.L.P. He concentrates his practice in the areas of elder law, estates and trusts and health law.
Bruce's BioMr. Reinoso counsels and advises elder law clients regarding estate and long-term care planning, wills, trusts, real estate transfers, powers of attorney, health care proxies, living wills, guardians, long-term care insurance, Medicare, Medicaid, employer and retiree group health benefit plans and other health insurance. He works with clients and their financial advisers to develop wealth preservation plans integrating lifetime conservation and management of resources, deployment of retirement and deferred compensation assets, orderly wealth transfer to heirs and estate tax planning. He also helps elder law clients protect their interests when disputes arise and find solutions when there was too little planning too late. Mr. Reinoso is past president of the board of directors for the Network In Aging Of Western New York and vice president of the board for Legal Services for the Elderly, Disabled and Disadvantaged of Western New York, Inc. He is chair of the Elder Law Committee of the Erie County Bar Association. He is dean of the Erie Institute of Law. He regularly presents educational programs to state and local professionals, and their clients, regarding health and elder law.
Are You a Caregiver?
Everyone you talk to has a story.If it's not you, it's your best friend or your neighbor.
What are some of the first things we can do? In some ways, it depends on how your journey starts. It can be an immediate crisis that you are thrust into (tragic accident, stroke, etc.).
More often than not, it happens over time. People can identify themselves as caregivers earlier in the process and take the time to prepare themselves. Just checking in is the beginning of caregiving.
Ask yourself the following questions. Do you:
If you answered yes to these questions, you are a caregiver.
Once you realize someone in your family is going to need care, what should you do?
Have a family meeting especially if the family is geographically spread out. An open discussion about what is needed, and how responsibilities will be shared is a critical first step. When appropriate include the care recipient in these discussions. Designed to put issues and needs on the table and find solutions, it's a brainstorming session. It is also helpful to have a neutral third party present such as a case manager, clergy or respected friend of the family. Being able to communicate effectively is a caregiver's most significant tool. When communicating be clear, assertive and constructive.
Here are some tips:
Effective Communication Resources
One of the biggest parts of caregiving is making sure that financial and legal documents are in order for the immediate and long-term challenges you may face. This is an area where, if certain forms and documents aren't in order, the caregiver is put at a real disadvantage. It is stressful and time-consuming. Power of attorney, HIPAA (Health Insurance Portability and Accountability Act) and health care proxy are considered forms of advanced directives. This means that you decide ahead of time the kind of medical care you want to receive if you are faced with a serious injury or illness. If you are over 18, you can and should prepare an advance directive. Compile an inventory that which lists all assets and liabilities of the older person. The following items should be included: bank accounts, pass books, certificates of deposit, money market funds, stocks, bonds, precious metals, jewelry, real estate deeds, promissory notes, contracts, insurance policies, safety deposit boxes (including location of the key), and retirement or pension benefits, etc.
Elder law is a component of law pertaining to the elderly. These lawyers work with the elderly and their families to have a better understanding of the issues and limitations that the elderly have to face. Elder law attorneys specialize in a variety of areas including:
Be sure to ask if the attorney is a member of the National Academy of Elder Law Attorneys (NAELA).
Legal Issues Resources
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