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Holly
01-19-2008, 04:13 AM
Coping skills

News that a newborn child has a devastating condition such as spina bifida can naturally cause parents to feel grief, anger, frustration, fear and sadness. There's good reason to hope, however, because most people with spina bifida live active and productive lives.


Most children with spina bifida can walk for at least short distances, usually with the assistance of braces, canes or crutches, although they may require wheelchairs for longer distances. Using these devices can help a child compensate for his or her condition and gain more independence.


Many children with spina bifida have normal intelligence. But they may need early educational intervention for learning problems, and they may need extra help from teachers and counselors to adapt to school. A physical disability like spina bifida can also cause emotional and social problems. Children with spina bifida need encouragement to participate in activities with their peers and to lead independent lives, within their physical limitations and capabilities. It may be helpful to remember that these children have never known what's accepted as normal function and often adapt to their condition in remarkable ways.


Support groups
If your child has spina bifida, you may benefit from finding a support group of other parents who are dealing with the condition. Talking with others who understand the challenges — and rewards — of living with spina bifida can be helpful.



SOURCE (http://www.mayoclinic.com/health/spina-bifida/DS00417/DSECTION=10)

Dodger67
01-19-2008, 02:06 PM
One common mistake people make is to try to compare to people who have become disabled through injury or disease. There really is no comparison, someone with SB - or any other congenital condition for that matter - has not suffered a loss. That makes a huge difference.

lolathechecker
01-19-2008, 06:49 PM
this IS my support group! you guys and another thing has really helped me as a new mom. i found a bunch of links to videos of other babies with sb on youtube. i wanted to see these kids in action, but it's so rare that i dont know anyone who has it. seeing how "normal" the kids on the videos were showed me that i am bringing a perfect baby into the world, and i have learned that i like the term "differently-abled" and am deleting "dis-abled" from my vocabulary!

Spokie
01-21-2008, 06:02 AM
i like the term "differently-abled" and am deleting "dis-abled" from my vocabulary!


BEAUTIFUL!!!

Michelle
01-25-2008, 04:28 PM
Hi Lola! My name is Michelle & I just gave birth 3 weeks ago to Jack. He was born with SB and is doing great! I just wanted to let you know that I'm available if you have any questions since I'm in the early days of this where you will be soon. Jack had a 12 day NICU stay & has been home for a week & half & we are so happy! Take care!

lolathechecker
01-25-2008, 08:39 PM
wow! thanks! i have a ton of questions! the hospital stay is the one thing im freaking out over. im pretty much ok with everything else. i know my baby will have a great quality of life and will be taken care of once she comes home, but you're so out of control in the hospital! did you have a c-section? and did you know he had sb before you delivered? feel free to send me a personal message! its so nice to find some one who is just now going through what im about to go through!