[Dawn25]

Does anyone have an experience with children who have spina bifida?

We are considering submitting for a four year old girl that does. She is able to walk and thats pretty much all I know right now.

[momraine]

My son's good friend at school has it and my son has some symptoms. You will want to find out about her bladder and bowel control and what other issues she may have with her legs. How well she can walk, can she walk long distances, does she need crutches or a walker, how much feeling does she have in legs, etc.

[Nevada Jen]

Also find out if she has any learning disabilities. Both kids who I know with SB have learning diabilities (but normal intelligence) that they have been able to work through and get past but the early grade school years were difficult. One of their parents told me the learning disabilities are very common in SB kids. Most lead very normal lives is my understanding. My recollection in that both kids required a number of back and leg surgeries as they grew up. Both kids I knew walked with crutches (one used a wheel chair a lot of the time) and would not have done well in a two story house. Houses with a lot of step up and step downs are worse on someone in a walker or wheel chair that a plain two story house though. (Learned that one from an expensive experience).

Also do not forget to look into other issues she may have as a result of what brought her into foster case and what may have happened to her during her time in foster care. Don't let your concern about SB blind you to other issues.

[cjhawk38]

I have 2 daughters with spina bifida. Do you know what type of SB she has? If this is a domestic placement she most likely has myelo. All kids with myelo type no matter where the lesion is have bowel and bladder problems. Bladder is managed by self cathing and bowels can be managed with high volume enemas.

Oldest daughter has learning issues but talks a good talk so most people think she is very smart. However at 20 she is still receiving special ed services in our state. Youngest daughter is in regular ed but does have problems with math.

About 90% also are shunted for hydrocephalus (water on the brain). My girls have never had a problem with their shunts but some kids do.

Cindy

[myForeverkids3]

My FAVORITE child in my preschool class (I know I shouldn't have a fav. but I do!) has SB. He walks and runs and is on target for his age (4). He is very smart but takes forever to do things (maybe just his personality?) He has some fine motor issues which he gets OT for. He cuts with scissors and writes his name, but it takes him a long time to do it.

He has zero bowel and bladder control so his parents catheterize him and give him and enema before he comes to school and in the bathroom before he leaves school. He wears a pull up but rarely do I have to change it. They have the potty thing under control now and he will start kindergarten this fall in a reg. ed. classroom.

As with any disability, every person achieves a different level of success. I would get some real specifics about this little girl so that you have a very good idea if you can give her the care that she needs.

We just said no to a 14 month old blind child (other issues too) because I honestly cannot provide the level of care he needs right now. It would not be fair to him to have an overwhelmed, stressed out mommy who is clueless about his disabilities.

[memom2]

I would research as much as possible to learn all there is to learn to be able to meet the child's needs. There may be some classes that you will have to take to learn how to care for a medically fragile child. I am also interested in adopting a medically fragile child age 0-5. I am researching and reading as much as possible. I am also interested in attending classes to educate myself in meeting the child's needs.

[Dawn25]

Thanks for all the info!

We've inquired on this little girl but unfortunately haven't heard anything back yet, and we called and emailed over a month ago. So frustrating.

[Sbmi86]

I have spina bifida. I was born 4-22-86. I have Myelomeningocele. Level L5 S1. If you would like to chat don't hesitate to email me. Sbmi86@yahoo.com

[rileyx49]

Please remember that services for those with spina bifida dont have to end when the child ends school. the state dept of Rehabilitation works with disabled individuals who want to go to school or work -- they are able to provide help for those with limitation to achieve independence.