Monday, May 30, 2011

Daily tips for day to day living with Rett syndrome : Advice from the Internation Rett Syndrome Foundation Experts


If she does not sit without support, it may be hard to get her in and out of the tub and keep her stable and safe while you wash her.

There are a number of waterproof bath chairs available, ranging from mesh sling-back styles to rigid plastic benches and chairs.

A hand-held shower hose can be very useful in the tub, especially for hair washing.

Waterproof wheelchairs are available for use in roll-in showers.

A mesh table that hooks into the back of a roll-in shower provides a safe way to bathe without undue bending by the caregiver.

Lifting to Prevent Back Injuries

It is important to learn how to lift correctly, so that you place the least amount of strain on your body, particularly your back. It is a good idea to attend one of your daughter’s PT sessions to get suggestions for the best ways to care for her with the least lifting possible. The school district may even allow you to have special PT sessions for training purposes. Ask your school administrator or request it in her IEP. While good lifting techniques can prevent injuries, they will also make transfers safer and easier. A training session should include: transferring in and out of your car, in and out of the tub, in and out of sitting to stand position, placing the wheelchair in and out of the car, and any other situations which pull on your back. When lifting, widen the base of your stance and bend your legs while keeping your back straight. When transferring from bed to chair, lean your daughter forward into your shoulder. A sliding board is an inexpensive piece of equipment which can be used for safe transfers. If your daughter is able to learn to assist you, practice often so she can gain strength to help. There are a number of mechanical devices when lifting becomes too difficult. Ramps, platform lifts, stairway lifts, and elevators increase accessibility and decrease back strain. Bathtub and bedside lifts can be invaluable. When changing diapers, it is better to roll the girl on her side to place the diaper under her rather than to lift her hips. It may not seem like a lot of strain, but over time, lifting the wrong way can be harmful.

The general principles of lifting are:

* the force is against you
* lift from the waist
* add upper body weight
* watch your weight
* warm up before lifting

The causes of back injuries include:

* lifting from the waist, and twisting
* lifting overhead or away from you
* heavy, repetitive lifting
* awkward position
* unbalanced load
* sitting/standing in one position too long


Vacation and Travel For Families with Special Needs Children:

Most families with children choose to vacation and travel during the summer months, and it may take some planning to have a successful vacation. Even more so for families with children who have special needs. There are many things to consider when planning a vacation: destination, transportation, hotel or other overnight arrangements, activities, adaptations, and general accessibility, to name a few.

Tips for Air Travel:

* Contact the airline as early as possible for special assistance, or use a travel agent who is familiar with making special reservations.
* If possible, ask for a non-stop flight to avoid airport shuffle.
* If you use a car seat, make sure it is certified for air travel.
* Make sure to label all equipment with your name, address, and phone number.
* If your child’s wheel chair is checked, remind the flight attendant before landing so she can make a radio inquiry to make sure the chair is delivered promptly.
* Make arrangements for special meals in advance. Do take along some of your child’s favorite snacks and drinks.
* Take your child to the toilet or change her diaper before the flight.
* Invest in a Walkman or DVD player and a good set of barrettes to anchor the headset.
* Offer your child something to eat or drink during descent.

Additional Travel Tips:

* Make advanced arrangements with car rental services.
* Before you leave home, get a disabled parking placard that can be used everywhere.
* Check with your hotel to be sure your room and facilities are handicap accessible.
* The following is a list of Web sites, which addresses those considerations. They contain information about vacation travel through articles, books, Internet links, and other resources.

1. A wonderful Directory of Summer Camps for Children with Disabilities was compiled by the National Information Center for Children and Youth with Disabilities (NICHCY). It contains disability-specific as well as general camp resources.
2. The Global Access Disabled Travel Network is a Web site containing personal travel experiences, as well as information on travel books, specific destinations, tips on planning, hotels and resorts, etc.
3. Travel with Kids offers information and links to cruise ship accessibility, tour operators and travel agents specializing in special needs, outdoor vacations for people with disabilities, and much more.
4. The Parenting Special Needs Web site has a section on Accessible Summer Recreation. It includes accessible travel, camps for special children, recreation and sport, adaptive equipment, and also just for fun activities for children with special needs.
5. The Enabled RVer hosts articles on topics related to RV travel, such as accessible RVs, the Handicapped Travel Club (HTC), travel guides, campgrounds and specific destinations, resources, and adaptive equipment.
6. Access-Able Travel Source contains information on travel with disabilities, mature travel, disability magazines, access guides, wheelchair travel, scooter rental, accessible transportation, world destinations, lists of travel professionals, links, and tips for the traveler with disabilities.
7. The Project ACTION Accessible Travelers' Database was created to assist tourists with disabilities to access mass transit systems while traveling to other cities. The database includes information on hotel/motel shuttles, accessible taxis, private bus/tour companies, van rentals, public transit operators, and national 800 numbers.
8. The Disability Travel and Recreation Resources web site includes information and links on topics such as travel planning, destinations, transportation, air travel, children, and books.
9. Emerging Horizons is a magazine, available online and in print, about accessible travel for people with mobility disabilities. It includes access information, resources, news and travel tips.
10. The Society for Accessible Travel & Hospitality (SATH) actively promotes awareness, respect, accessibility, and employment for persons with disabilities in the tourism industry. SATH contains disability-specific 'How To Travel' articles, as well as an extensive list of resources for the traveler with disabilities.
11. Accessible Recreation on Federal Lands provides a listing of government resources that manage federal recreation sites in the United States. It also includes the Accessibility Data Management System (ADMS), an online resource containing accessibility information about many federal facilities.
12. The National Center on Physical Activity and Disability web site contains a virtual library with an extensive list of resource directories, fact sheets, bibliographies, and monographs. Topics range from adaptive equipment, adapting activities in recreation programs, camping, hiking, fishing, scuba, and much more.

Although the sources listed above seem extensive, it is just the tip of the iceberg. Explore what will best fit you and your needs as a family

Source: International Rett Syndrome Foundation (

No comments: