Juvenile-HD

HOME

INDEX Page
Tools For Viewing
10 The Most Commonly Asked Questions
Clinical Trials & Research
Huntington's Disease~WeMove Info
Advocacy/Donations/Press Info
Clinical Definition & Search
Facing HD~Family Handbook
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
Special Needs Camp - About

INDEX Page

You've done it - you've taken the plunge and decided to send your child to camp this summer. There are many types of camps to choose from, including camps intended just for your child's special needs to mainstream camps where your child will be with kids who have no special needs. You've done your research, and now that you and your child have made up your minds, what can you do to get ready?

Preparing Your Child - and Yourself
If you and your child haven't had the opportunity to visit the camp, make sure you get as much literature about the camp as possible, including a description of the layout and a video if they have one. You and your child should go over these materials together. Tell her that you'll be checking in regularly with the camp staff to make sure that she has everything she needs and stress that she can always let the staff know if her needs aren't being met.

Talk to your child about her feelings. Find out if she has any concerns, and do your best to reassure her that you and the camp staff will take every precaution to make sure she stays safe. You might find it helpful to talk about why she's attending camp and what some of her goals might be, such as to try a new sport, to make new friends, or to just enjoy a break from therapy sessions.

If your child is intimidated by the thought of attending a residential camp or an inclusionary camp, you might consider starting her off in a day camp or a sports team for kids with special needs. This step can give your child the skills and confidence she needs to feel comfortable about going to a residential camp. "Start with regular sports activities and day camp. Then use a special-needs camp to get a child used to being away before sending your child to an inclusionary camp," advises Ann Dolloff, extension specialist for the New Hampshire 4-H Camps.

Another option you might consider is sending your child to camp with a friend or a sibling. If your child is attending an inclusionary or mainstream camp, the buddy doesn't have to have a special need. "Going with a friend is a huge stress reduction for both child and family - they'll be looking out for each other," Dolloff says.

Sharing Information With Camp Staff
Some parents are reluctant to share too much information with camp staff for fear it will have negative repercussions for their child. "Many parents struggle with this," Dolloff says. "They think, 'If I tell everything, will they still take my kid? Or am I setting my kid up for failure?' The fact is, good camps will operate from the perspective that 'the more info we have, the better.' Most staff who truly care about kids will tell you that."

You can help educate the staff by spending time with them and answering and asking questions before you drop off your child. This can be critical. For example, 15-year-old Christina Myers recently spent a week at a mainstream camp where she was the only child with a disability (Christina has cerebral palsy). On her initial tour through the camp on the day of Christina's arrival, Jean Myers (Christina's mother) discovered that even though the camp staff had tried to accommodate Christina, they hadn't been completely successful. "They made a larger shower and thought it was accessible, but there was nothing to hold onto," Myers says. "What I did when I got there was give them one of those beach chairs, and we stuck that right inside the shower for Christina to sit on."

Many camps have paperwork you can fill out to share information as well, including information about dietary and medical needs. And regardless of whether your child is going to a day or residential camp, you should give the staff a list of emergency phone numbers and email addresses, and make sure they know how to reach you at all times during your child's camp stay. If your child takes any medication, include the phone number of your child's doctor, in the event the prescription is lost and needs to be refilled by camp staff. Check whether the camp infirmary stocks your child's medication, too. If it doesn't, make sure you send extra medicine with your child in case of an emergency.

Consult with your child's doctor and other specialists, such as a physical therapist, to make sure you provide the camp director and staff with all necessary information, and check with the camp staff to make sure they know everything they need to.

What to Pack
Try to limit the special equipment your child needs to bring, especially if it's expensive or breakable. If your child is attending a mainstream camp, she's likely to want to be like all the other kids, so do what you can to accommodate that desire. And mark or label everything with your child's name to make it easier for her to keep track of her belongings - that goes for everything from her crutches to her retainer case.

If the camp hasn't sent you one, you should call ahead for a list of recommended items. Every camp has different requirements.

You also have the option to provide any support staff your child needs. If your child needs a therapist, you can have that person come in on a predetermined basis to provide care for your child. Or maybe your child needs more intensive, round-the-clock care - ask the camp director what you can do to accommodate these special needs. "We have one child who comes to camp with an aide to make sure that his experience in our camp is successful," Dolloff says. "We don't charge room or board for that person to live in camp. It's very collaborative."

Remember, however, that you may want to let your child have a vacation from therapy or other treatments. Myers says that although she initially made sure Christina had regular physical therapy at camp, she now lets her have a few weeks off. "Children do regress a bit without therapy, but she's learned so much more, and the growing independence is what we focus on," Myers says. Before you decide to postpone any treatments, though, you should consult with your child's doctor.

Dealing With Anxiety and Homesickness
Many camps don't allow direct contact between parent and child while the camp is in session - they do this to help the children stay focused on their activities. This can be a daunting prospect for parents of children with special needs, which is why it's important that you figure out ahead of time how you will get regular information about your child's status.

"We tell parents they can call every day, every hour, and speak to the supervisor and camp staff regarding their child's performance," Dolloff says. "And camps that operate well will also call parents to keep them aware of how things are going."

You can also write to your child and remind her that she's loved and that you can't wait for her to come home and tell you her stories.

"I think it's important to know when to back off - kids don't want their parents there," Myers says. Just like any other child, your kid probably won't want you to cramp her style while she's away at camp. The best thing you can do is respect her need for freedom and independence while she's in a safe camp environment.

Reviewed by: Steve Bachrach, MD
Date reviewed: January 2001

 
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/