Support and Encouragement

If you are a parent facing the prospect of raising a child with SB for the first time, it is natural for you to feel uninformed, disconnected and isolated. But things don't have to stay that way.

By FAR the absolute BEST source of information and encouragement to our family has come from other SB families. TRUST ME, these people know their stuff and they want to help.


Here are a few places you can get connected:

As you begin to connect with other SB families, you will find that many of them have family blogs in which they share their journey. My personal blog is HERE.

A Facebook group for adults with SB

Connecting people with spinal cord injury and their families is what we do. Through one-on-one pair ups or an event near you, BACKBONES makes it easy to meet others with similar background, injury and interests.

Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on.

A anonymous story illustrating how special our extraordinary children are.

We are mothers of daughters who experience social, sensory, cognitive, and physical differences. The organization was established in the summer of 2011. We are based in San Diego.

Our children are special and beautiful and sometimes what they have to go through is scary. They are our inspiration and our happiness. Their appointments and medical issues can be overwhelming, and although every child is different, we have a lot in common. Come and ease your mind at similar experiences shared by other Moms of these exceptional children.

A place to lament, vent, discuss, ask questions, post prayer requests and encourage one another in the Word as we travel on this road of raising children with SB. I chose the mountain looking icon because it seems to mimic the journey....up and down, up and down. Yet with friends by our side to encourage us along the adventure is that much sweeter and the difficult parts that much easier.

Another bulliten board where expectant parents as well as parents of young children with SB can go for parent-to-parent support, encouragement and information

This is a group for both the able body and disabled united with each other. Maybe if more people that are Able body knows more about the disabled and how we live our daily life,Were really no different,we want the same as the able body person,We all want to be respected,and be treated no different then any body else...and also to let you know,in time from some kind of accident or maybe have a child with a disability,You also maybe become disabled...

Disaboom is a website dedicated to connecting people with disabilities.

FacingDisability was specifically created to connect families who suddenly have to deal with a spinal cord injury with other people like them. Our website has more than 1,000 videos of family members answering real-life questions about how they cope with a spinal cord injury. It’s a first-of-its-kind Internet-based effort to collect life experiences surrounding spinal cord injuries and bring them to the world.

HeadNorth meets the transitional needs of SCI survivors, from recovery to rehabilitation to the reintegration back into an active lifestyle. HELP is provided through two core programs; financial assistance and peer mentoring. Through each program, resources, Peer Support and financial assistance helps the injured individual and their families as they face the daily challenges of living with a SCI and paralysis.

This is a Facebook Group for people who use wheelchairs

Hand to Hold, a 501(c) nonprofit, provides comprehensive navigation resources and support programs to parents of preemies, babies born with special health care needs and those who have experienced a loss due to these or other complications.

Facebook: Life After Spinal Cord Injury [SCI] is a motivational program for youth with disabilities, rehabilitation programs, medical education seminars and other community events. Please learn more at http://www.uromed.com/Company/BertsStory

Welcome to The Mobility Project — a new resource created especially for people who use wheelchairs and other assistive technology for mobility. The Mobility Project’s mission is to help re-educate people on what it’s really like to live with a disability while making it a little easier for you to get things done in the wheeled world.

This is a collection of inspirational poetry and quotes that have been collected on this website.

Europe’s largest organisation dedicated to supporting individuals and families as they face the challenges arising from spina bifida and hydrocephalus.

This is a section of this website where I have compiled articles from others as well as some thoughts of my own on how disability effects individuals as well as marriages.

The Spina Bifida Association of America is a national organization with local chapters throughout the US. Check their map to find the chapter in your area.

Spina Bifida Connection is an online forum centered around Spina Bifida

This is a Facebook group started by yours truly that is for fathers of children with SB.

This is a Facebook Group for those who have undergone fetal surgery for spina bifida, or are considering it... to offer support, answer questions, or just connect!

Spina Bifida Kids is a collaborative blog written by a group of mothers of children with SB.

SB Kids is a community of over 900 moms (and a handful of dads) on Babycenter.com. They can answer every question, relate to every emotion and want to celebrate your every triumph.

SB-List is a discussion list for parents of children with spina bifida. The list focuses on information sharing and support. Our children range in age from infants not yet born to 30 and 40 year olds. SB-List has been hosted by the Waisman Center since 1996. It was the first Internet discussion list specifically for parents of children with spina bifida.

This is a unique group for families/people with Spina Bifida and tracheostomies and/or ventilators. Please feel free to add members that might fit.

Facebook: Our page has been put together to show what is possible and what can be accomplished with the help of others that have dedicated their life to helping people with spinal injury achieve whatever their goals or dreams may be….

TTSB is a Facebook group dedicated to bragging about every milestone and victory our kiddos achieve.

This Facebook group not only has parents of children with SB but adults with SB as well.

This is a Facebook group of Christian SB parents supporting and encouraging one another.

"Welcome to Holland" is an essay, written in 1987 by Emily Perl Kingsley, about having a child with a disability:

There are many SB-related goups on Yahoo - just go to Yahoo Groups and type in "Spina Bifida" in the search bar. One of the main SB Groups is Spina Bifida Central.

No comments:

Post a Comment