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Myths about Hydranencephaly

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Dear Doctor Letter

Sensory Stimulation
Links and Resources

Although most Drs will tell you that there is really nothing you can do or no teaching that will help your child with Hydranencephaly, that’s not entirely true. Yes, there is no cure for hydranencephaly and it’s highly unlikely that your child will learn to read and write. But, there are many things that can be done to maximize their potential and ways to enrich their lives. In this chapter I present a few of these programs and ideas. I am not promoting any idea or program but merely offering information. As with anything mentioned in this book, always check with your child’s health care provider before trying anything.


On this page are links to sites with information that was included in the book "Caring For Your Child with Hydranencephaly".  Some of the information on these sites won't be applicable to children with Hydranencephaly but they are a good starting point in helping you see what CAN be done for our children.

Early Stimulation and Development Activities
http://www.dinf.ne.jp/doc/english/global/david/dwe002/dwe00237.htm#part1chap35

Developmental Aids (an over view. Please see section on Physical care of a child with Hydranencephaly for more detailed positioning suggestions)
http://www.dinf.ne.jp/doc/english/global/david/dwe002/dwe00264.htm#571 

The following are some programs that are available and have been used by some of the families to stimulate their child and promote learning. I am including them for information purposes. I am not promoting them in any way.

Active Learning and Little Rooms


Brain Gym
http://www.brainwise.co.uk/index.html

Who is Brain Gym for?
http://www.brainwise.co.uk/applications/index.html

Obviously, children with Hydranencephaly aren’t going to learn to read and write as addressed in these articles. But this sort of stimulation might just help promote awareness of their surroundings.

One child’s experience with Brain Gym:
Rachel, age 9 ½, Scotland: She listens to vibrations, tracking sound and light with bells, likes materials against her face and on nose very still when bell ball held against her face, sponge painting, responding to tickling feel of bear, tracking bells and sound toys using vision to track movement without sound, alert when in an upright chair, responds well to touch, voice and sensation, hand washing with help from teacher, operating fan for response.

Structural Cognitive Modifiability

Other pages in this section:
Sensory Stimulation Experiences
Sensory Stimulation Activities
Choosing a Toy
Active Learning
Structural Cognitive Modifiability
 

 



 

 


 


 

 

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca