Juvenile-HD

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JHD Handbook-Chapter 1
JHD Info-Stanford Univ.
Physician's Guide To HD
Caring for People with HD
Physical & Occupational Therapy In HD
Understanding Behaviour in HD-Dr. Jane Paulsen
Understanding Behavioral-Dr. Edmond Chiu
Advanced Stages Caregivers Handbook
First Shift-Certified Nursing Assistants
Activities of Daily Living-HD
Unified HD Rating Scale (UHDRS) Motor Section
Westphal Variant
SECTION 1 - AT RISK
Age & Probability Chart
At Risk For HD-What Next?
At-Risk Checklist
Best Interest of Child?
Crystal Ball?
Food For Thought
Parent Hasn't Tested?
Q&A On Risk of Inheriting JHD
Testing Children
SECTION 2 - GENETIC TESTING
Genetic Disorders & Birth Defects
Genetic Testing for HD
Genetic Counseling-In General
Psychological Impact
Intro: Genetics/Genetic Testing
Prenatal & Preimplanation
Prenatal Testing-In General
o Genetic Testing Resources
o Personal Stories
SECTION 3 - JHD
Coping With The Early Years
Age of HD Appearance
Age of Onset-Historical
Family-HD Underestimated
Children of Parents With HD
Child~Parent Ill
Clinical Description JHD
HD - What Kids Are Saying
HD & Me
JHD-Duration of Illness
JHD-Clinical and Research
JHD Symptoms
Parenting With HD
Patients/Families Coping
Talking With Children About HD
5 Stages of HD
JHD Resources
SECTION 4 - SYMPTOM RECOGNITION
Parent Resources
8 Fears of A Chronic Illness
Anxiety/Apathy/Irritability~HD
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Ataxia
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Bradykinesia
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Chorea
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
Dehydration
Delirium
Denial of HD
Depression~Physician's Guide
Depression-Understanding It
Depression-How To Help
Depression - Treatment Resistant Patient
Depression-Other Resources
-Read If Your Child Is On Antidepressant
Disgust - Impaired Recognition in HD
Dissociative disorders
Driving - Physician's Guide
Dyslexia
Dyslexia Resources
Dystonia
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
Epilepsy-Seizures~PG
-Seizures ~Special Populations
Falling~Safety
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
Hallucinations/Psychosis~PGHD
Hand muscle reflexes in HD
Hypothalamus - A Personal Theory
Insomia ~Physician's Guide
Irritability~Temper Outburst Physician's Guide
Learning Disability
Mania/OCD~Physician's Guide
Mood Disorder Rate In HD
Myoclonus (Movements)
Nails-What To Look For
Night Terrors
Obsessive Compulsive OCD
Panic Disorder
Personality disorders
Pneumonia
Pneumonia-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Spasticity
Stress
Tremors
Why Certain Symptoms Occur
Symptom & Treatment Resources
SECTION 5 - COMMUNICATION
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
SECTION 6 - EATING/SWALLOWING/NUITRITION
Hints For Weight Loss in HD
HD & Diet~HSA Fact Sheet 7
Nutrients: Some Possible Deficiency Symptoms
Nutrition and HD~Anna Gaba (Recipes)
Nutrition Information In HD~Naomi Lundeen
Speech & Swallowing~Lynn Rhodes
Swallowing & Nutrition Physician's Guide To HD
Swallowing & Nuitrition Resources
Swallowing Warning Signs
5 Swallowing Problems
Taste changes in HD
Weight Gain
Resources-Drinks/Shakes
-Feeding Tubes~Advanced Stages of HD
-Feeding Tube~Jean Miller
-Feeding Tubes: One More Word ~Jean Miller
-Feeding Tubes & Baby Foods
-Feeding Tube~Dental Care
-Feeding Tube Instructions~Jean Miller
-Feeding Tube Resources
SECTION 7 - THERAPIES
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
Therapy Resources
SECTION 8 - MEDICATIONS
HD Treatments
Medications-Movement Disorders
Medication/Emergency Info Forms
Cutting Prescriptions
Drugs-Look 'Em Up
-Adolescents Under 25
-Antidepressant Adverse Effects
-Anti-psychotic
-Anxiety-Antidepressant
A-Z Mental Health Drugs
-Creatine
-EPA~Fish Oil
-Haldol/Haloperidol - Clinical Sheet
-Haldol~Clinician Description
-Haldol & HD
-Haldol/HD Patient Experiences
-Haldol~ Patient Handout
-Mood Stabilizers: ASK 3 Questions
-Neuroleptic Malignant Synd WARNING
-Olanzipine-Risperidone/blood tests
-Celexa/Luvox/Paxil/Prozac/Zoloft
-Psychiatric Drugs & Children
Sertraline ~Zoloft
-Spasticity Meds/Treatments
-SSRI Medications
-Tardive Dyskinesia WARNING
-Weight Gain Medications
-Sites/Help the Medicine Go Down
-Vitamin & Mineral Deficiencies
SECTION 9 - SURGERIES
Surgery-Movement Disorders
o Surgery Resources
SECTION 10 - PROCEDURES
Clinic Visits-How To Prepare
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
SECTION 11- ALCOHOL/DRUGS
Alcohol-Parent's Guide
Alcohol-Talking To Your Child
Drugs-What To Do?
Drugs-Talking To Your Child
Disciplining-Ages 0-13 & Up
SECTION 12- SUICIDE
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
SECTION 13 - DIVORCE
Divorce & Child Stress
Tips For Divorcing Parents
SECTION 14 - DISABILITY ISSUES
Guides To Disability Issues
Caring-Child & Medical Technology
Caring for a Seriously Ill Child
Child Long Term Illness
Disability-Special Education Plan
IFSP Early Intervention Process
Disability Resources
Financial Planning
Wishes Can Come True-Children's Wish Foundations
Special Needs Resources
Special Needs Camp - About
Special Needs Camp - Finding One
SECTION 15 - ASSISTIVE TECHNOLOGY
Child Assistive Technology
Adaptive Equipment Resources
Products
SECTION 16 - EMOTIONAL ISSUES
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
o Emotional Support Resources
SECTION 17 - GRIEF
Helping Child Deal With Death
o Grief Addtional Resources
SECTION 18 - ADD/ADHD
ADD & Teens
Conduct Disorders
FAQS & Related Info
Understanding AD/HD
What Is AD/HD?
Research Articles
Resources
SECTION 19 - HD SUPPORT GROUPS
HD Support Groups
National Youth Association
SECTION 20 - HD LINKS
HD Links
Related Resources
Tips For Friends
SECTION 21 - BENEFITS/INSURNACE
HD Disability
Benefits Check UP - See What You Can Get
Medical Insurance Bureau's Facts On You!
Medicare-Medicaid
Medicare Rights-Home Health & Hospice
Medicare Rights Center Resources
No Insurance? Try This!
Prescription Drug Cards Part I
Prescription Drug Cards Part II
Social Security-Children With Disabilities
SECTION 22 - ARTICLES/JHD
JHD and ADD
SECTION 23 - CAREGIVING
Articles-Resources
Caregiver Self-Assessment
Caregiver's Handbook
"First Shift With A Person With HD"
Getting Respite Care/Help At Home
Helpful Forms-Info
Home Emergency Preparations
Symptom Management
Ten Tips
Useful Tools
SECTION 24 - BIO
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
GUESTBOOK
Child Assistive Technology

INDEX Page

Technology is one of the buzzwords of the late 20th century, conjuring up images of computers that talk or televisions so thin they can be mounted on the wall like a picture. Technology isn't just a matter of high-tech solutions to simple problems, however. People with disabilities are now taking advantage of all kinds of technological advances to overcome barriers caused by their disability.

If you're a parent of a child with a disability of any kind (physical, mental, or learning) you've probably heard the term assistive technology used in reference to your child. But you may not know where to begin finding out about it or looking for help. What are these technologies and where can you find them? What technologies will work best for your child? Keep reading to find help in answering these questions and more.

What Is Assistive Technology?
We all use technology - phones, radios, computers - to help us in our day-to-day lives. Although all these technologies can be considered "assistive" in that they help us to better perform tasks or improve our quality of life, the term assistive technology has specific meanings according to United States law. The definition of assistive technology is broken down into two categories: devices and services.

An assistive technology device is "any item, piece of equipment, or product system, whether acquired commercially or off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities." These devices can include high-tech equipment like computers, but also simple magnifiers, splints, pointers, and ramps. The single most important characteristic of an assistive technology device, whether it is high- or low-tech, is its ability to meet the specific and individual needs of your child.

An assistive technology service is "any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device." Assistive technology services include:

  • evaluation of the needs of a child with a disability
  • purchase or leasing of assistive technology devices
  • selection, fit, customization, maintenance, repair, or replacement of a device
  • coordination of other therapies, interventions, or services
  • training or assistance of either the child who will use the device or individuals who will assist the child in using the device

These services are as critical as the devices themselves in ensuring that an assistive technology solution is effective. They often are an ongoing process (for example, training may not stop a few weeks after a product is purchased, but may continue for as long as the child uses the product).

Assistive technology helps kids with disabilities increase mobility, improve communication, accomplish daily tasks, and enhance learning both at home and in school. Assistive technology products can help a child overcome the barriers a disability creates.

When Should My Child Be Introduced to Assistive Technology?
Little girl using assistive tech "The younger children are when introduced to assistive technology, the better it is for them and their parents," says Richard Lytton, a clinical assistive technology services specialist. "Assistive technology should be introduced to a child as soon as a significant delay in functional skills or development is identified."

Childhood is when most of us learn the lessons and skills we need to function as adults. We learn these lessons through experimentation, exploration, trial and error, imitation, practice, and direct education. Your child may be limited in terms of his learning approaches because of some combination of a mental or physical barrier, caution on the part of adults around him, and isolation caused by his disability, but this is still the time when he needs to learn these lessons and skills.

Fortunately, even infants can use assistive devices, in the form of special toys or tools, that help overcome these barriers by allowing them to interact with and manipulate objects in their environment. A comprehensive evaluation for assistive technology needs should therefore be completed as soon after the diagnosis of a disability as possible.

The Importance of Evaluation
It is impossible to determine exactly what technology will work best for your child (or if any is even needed) without looking at his specific needs and challenges. Before any decisions are made regarding devices for your child, arrange a comprehensive, multidisciplinary evaluation through your child's doctor, school, or therapy team. You will need to look at what your child can and cannot accomplish and what functions he needs to perform. A formal assessment will help determine cognitive, motor, communication, self-care, sensory, and fine-motor abilities and limitations.

Collaboration is a key part of this process. You will want to assemble a team of appropriate professionals including, for example, special education teachers, rehabilitation professionals, speech and language therapists, physical or occupational therapists, your child's doctor, and any other adults who have a role in your child's care. The number of specific individuals involved will depend on your child's needs. You should also involve family members, friends, and anyone else who interacts with your child on a regular basis.

Your child should be involved in this process as much as possible. Children with disabilities are aware of many of their own needs and have their own opinions and preferences about how these needs should be met. "The child is crucial in helping the parent pick out the product," says Beth Mollica, director of the Delaware Assistive Technology Initiative in Wilmington, Delaware. If children are happy with the solution, they are more likely to participate fully in its implementation. Any assistive technology device is only as helpful as your child's willingness and ability to use it.

Whenever possible, evaluation should take place in the settings where your child will use the technology (usually at home and at school).

Characteristics of Appropriate Assistive Technology
Once you, your child, and your evaluative team have determined the exact nature of your child's needs, you can begin looking at the appropriate assistive technology devices and services. Among the questions to ask members of your team are the following:

  • Is there a low-tech device that will help meet my child's needs?
  • What types of high-tech devices might help my child?
  • Can the technology be used at school, home, and in any other situation, such as on the playground?
  • Is training required to use it?
  • Is the device being considered appropriate for my child's needs and abilities?
  • How reliable is this piece of technology?
  • How long will the solution be appropriate?

It is important to bear in mind that the best solution for your child may not be the most technologically advanced. The simplest, most appropriate device or solution is the one you will want to choose. An evaluation, with opportunities to try a range of products, will help you identify those items having features your child wants and needs.

Some of the terms you'll hear or read as you shop for assistive technology will be new, or even a little confusing. Don't hesitate to ask for more information about a product.

Try out any device before you purchase it. A tool that seems like the perfect answer may turn out to be difficult to use. Or it may break. Using the device for several weeks will give you and your child a chance to see how well it adapts to the various environments in which he will be using it.

Paying for Assistive Technology
When you are looking at the cost of device, consider any additional costs that may arise. For example, if you are purchasing a computer, do you have to buy a printer, monitor, and software? Are there a number of expensive adaptive devices you may want to purchase?

Consulting with some of the members of your child's evaluative team might give you some insight into potential future costs. Whether you pay for the device yourself, or get help from an outside source, it is important to have a clear budget to help you make decisions about what to purchase.

Costs are a major concern for parents buying assistive technology products. The price can range widely. Sometimes families pay for a device, or it may be covered through health insurance, purchased by a school district, or funded through a private foundation. Sources of funding include:

  • early intervention programs
  • Head Start
  • state programs
  • vocational rehabilitation programs
  • Medicaid
  • nonprofit disability associations
  • civic organizations

Follow Up
Once you have purchased an assistive technology device, you will need to make sure that it continues to meet your child's needs. Plans for monitoring your child's use of the device should be included in the evaluation you perform before purchasing it. Members of your child's evaluative team should periodically check to make sure the device is functioning properly, that no adjustments need to be made, and that it is effective and safe for your child as he grows.

Maintaining the device will be important, so before purchasing it you should find out what kinds of warranties it has and whether you can have it easily repaired at a location close to your home.

Communication with your child and with his teachers, therapists, and other caregivers is also important. The device may be functioning well, but if your child is not getting the help he needs to be properly integrated into his classroom or child-care setting, then the adults and children who interact with him may need more training and information. It is important for all of the people involved with your child to understand why and how he is using the device.

Assistive technology can have many positive benefits for your child, including less isolation, increased independence and self-esteem, and improved learning. Setting out to find the right technology for your child can seem intimidating, but remember, there are lots of organizations to help you and your child.

More Information

Access devices help children interact with computers. These aids help children use head, neck, or eye movements to operate equipment that allows them access to computers. Other devices included in this category are input devices such as switches, alternative keyboards, special mice, touch windows, speech recognition software, and infrared pointers. These tools allow children to enter or manipulate data.

Assistive-listening aids help students who have hearing problems or auditory processing problems. They include hearing aids, personal FM units, Phonic Ear, TDDs, or closed-captioned television.

Augmentative-communication devices and techniques supplement a child's natural speech and communication. These may be low-tech, such as communication notebooks and boards; high-tech, such as electronic communication devices or speech synthesizers; or no-tech, such as sign language.

Computer-based instruction can make possible independent participation in classroom activities. Software can teach the same lessons the rest of the students are receiving, while offering different ways for children to respond. Software can provide the tools for writing, spelling, calculation, reading, basic reasoning, and higher-level thinking skills.

Mobility aids are designed to help children whose impairments limit their mobility. These devices include self-propelled walkers, manual or powered wheelchairs, and powered vehicles such as bikes and scooters.

Positioning and seating aids help children achieve healthier and more functional positions in a variety of settings. Items may be simple, such as a footrest, or customized, such as lateral supports to assist with stable, upright trunk and head positions. Aids include standers and devices that assist children in maintaining a variety of positions.

Self-care devices allow children with disabilities to dress, clean, and feed themselves. They include electric feeders, adapted utensils, and specially designed showers and toilet seats.

Social interaction and recreation devices allow children with disabilities to have fun with their peers, and include drawing software, computer games and simulations, and adapted puzzles and games.

Visual aids help children who have vision problems. Devices include screen readers and enlargers, large-type books, taped books, Braillers, light boxes, high-contrast materials, synthesizers, and scanners.

Updated and reviewed by: Kim Rutherford, MD
Date reviewed: August 2001
Originally reviewed by:
Richard Lytton

Source:  KidsHealth www.KidsHealth.com is a project of The Nemours Foundation which is dedicated to improving the health and spirit of children. Today, as part of its continuing mission, the Foundation supports the operation of a number of renowned children's health facilities throughout the nation, including the Alfred I. duPont Hospital for Children in Wilmington, Delaware, and the Nemours Children's Clinics throughout Florida. Visit The Nemours Foundation to find out more about them and its health facilities for children http://www.nemours.org/no/