DIASTROPHIC HELP


The purpose of this web site is to help the parents of children with diastrophic dysplasia (DDs for short) solve the very early questions of self-care and adjustments to the home and school environments. Diastrophic hands and the overall more limited range of motion pose special self-care challenges. These children learn to do everything well, but the early days can be confusing for parents, with each family trying to "reinvent the wheel". We hope to avoid some of that with the resources on this web site. We have attempted to put the hints in categories as much as possible, but there will be some overlap.

The ideas here are NOT the last word, just a starting point. Although DD children are alike in many ways, they are also very different in their abilities at various ages. Size, limb proportion, and range of motion make it impossible to have just one formula that works for everyone. It is our hope that some of the hints listed here will work perfectly the first time and, barring that, that the child will figure out his/her own ways of improving on and adapting these hints.

We have assumed the premise of using as few special gadgets as possible, and where gadgets are inevitable, an attempt has been made to have them be cheap, easily-made, and/or readily accessible for a lifetime. Some of the gadgets are shown here, while others can be found in medical supply catalogs.

For even more resource info, talk to other parents of DDs, as well as adult DDs - most importantly, follow the cues from your children. Our thanks to the many people (young and old) who contributed the information contained herein.  Very special thanks to Cathy Holland, Jenny Clark, and Mary Carten for their unflagging encouragement and support.

 

Diastrophic Dysplasia Booklet Booklet which contains medical information about DD. Reviewed by dwarfism specialists. Many photos! Also in PDF (850k)
Español: Diastrofia Displasia (PDF 850k)

 Just for Babies

Info on baby milestones, self-feeding, DD baby ear "bubbles" (cauliflower ear); a "must read" for parents of new DD babies. 

 Clothing and Self-Dressing

HARD work, but manageable even for a young child.

 Home Environment

Wonder how to make your home more user friendly for your DD child?

 Bathrooms

A category all its own!  Read this before the self-toileting section. Includes a link for ideas on how to install a low sink!

 Self-Toileting

Always a perplexing subject!  Get tips on how to get your child started.  Gadget suggestions!

 Schools

Getting ready for school?  Here are some tips for making the job easier for you and your child. 

Some of Our Favorite People
Great looking DD's of all ages!  Send us a photo of your favorite DD person!

(NEW) SSI Information
 

Looking for information about whether or not your DD child qualifies for SSI and how to apply? This PDF document was provided by the Social Security Disability Help Blog.

(NEW) See 5 year old Kai's ALS Ice Bucket Challenge -- the best challenger ever!

Personal Stories

The Halo for Children with Dwarfism 
   Ideas for living in a halo for families
   of children with dwarfism

Today's Achiever, Brad Clark 
   The Indianapolis Star

"The Horrible Truth" 
   Arlene Bradford

"A New Way to Run"
   Joshua Phillips, 9 years old



"You, Your Child, and Your HMO"

   Cliff and Rosa Kinney

"Queen of the Road"
   Lois Search

"Our Family Ski Trip to Colorado"
   Katie Queen, 9 years old

A Few Thoughts..."
   Matt Laffan, Sydney, Australia

"College Days"
   Vita Gagne

Recommended Reading:

A Life Without Labels   
Arlene Bradford
, mother of 3 sons with DD
 
(Also available in KINDLE version)

Being Different (Staring Countermeasures)
Frank Verpaelst


Ask A Mom!

Need info not found here?  Have any questions?  Contact us and we'll try to get an answer for you! 

 

We are always on the lookout for simple ideas that work well for DD children.  Contact us with your suggestions, please!
 

[Diastrophic Dysplasia (eMedicine)]
[Diastrophic Dysplasia (Nemours)]
[Parents of Little People 2 Yahoo Group]

Facebook Group:  Diastrophic Dysplasia Support


Last Updated by Vita Gagne, 08/24/2014

This Web site and all its contents, including this home page and all pages at this site that are linked to it, are copyright © 1997-2014 by Vita Gagne. In addition, all photographs on this Web site are the copyrighted property of the webmaster or the individuals pictured, and have been posted with their permission. All rights reserved. To obtain legal copies of these photographs for any purpose whatsoever, contact Vita Gagne.