Anyone adopt a special needs with spina bifida? Care to comment?

[samba2006]

I'm real interested in hearing from those who have adopted a special needs child with spinal bifida...as well as those who considered but decided against doing so....

Samba in Sac

[awbaby]

DH and I are doing special needs adoption right now. I am sorry but I don't have much info on spinal bifida. I think you will be blessed with whatever you decide to do. Thats what I try to remind myself. While these children might not be the same as there peers they may have more love to offer than you have ever imagined. I would definatley look into it and make sure it is a need you are comfortable dealing with.
good luck
angie

[allysonmur]

i had twins 5 months ago and my daughter was born with spina bifida. you will be very blessed if you decide to continue adopting a child with spina bifida. These children are so special and have so much to offer. SHe is as special as her twin brother!!!

[Mom2sbdaughters]

I have 2 adopted spina bifida girls ages 8 and 16. Ask away!

[mommy2girls]

I am currently considering and praying about an adoption of a little boy with SB. Could anyone give me any advice? All I know and all the agency will tell me is that he has SB and he cannot walk and has a feeding tube. He is considered "medically fragile". I do not know what this means in terms of SB.
Do children with SB have typical mental development? (Do two-year-old's with SB talk, count, sing, learn at the same rate as other two-year-olds?)
I have a friend with a daughter with SB, but she didn't know why a child with SB would need a feeding tube...her daughter didn't need one, and she didn't know of any other kids with SB in her SB support circle that had to have one. Can you explain this?
Do kids in state custody get the proper PT/OT while in state custody?

[trumboks]

I found this message when doing a google search on "adopting a child with SB". My husband and I are just in the beginning phases of thinking about adoption but we are extremely interested in adopting a child with SB. We currently have a 2 y/o son with SB and a 8 month old son without SB. We have always wanted 3 children and after my last child I can no longer have children so we want to adopt. We are strongly considering adopting a child with SB because we feel we would be very well equipped to care for such a child and because our son is such a joy!

But I am not sure how to go inquire about adopting a child with a specific special need like SB. We are not opposed to international or domestic adoption. I notice that some of you have adopted or considered adopting children specifically with SB. If you would like you may email me directly at trumboks@yahoo.com. Thanks for any advice you may offer.

[Wrenae]

There are varying degrees of SB. A child can grow up with such a mild SB that it isn't even detected, and doesn't impair the child to any significant degree. A child described as “medically fragile” would be at the other end of the spectrum.

With any special needs adoption it is essential to find out everything you can about the child and the conditions they have. You are “interested” in adopting a child with special needs. The SW is not in a position to give you a lot of info specific to the child until you get quite serious about that child. In the meantime.... research!

What does “medically fragile” mean?
(best definition I could find is on page 2 of:
http://www.ddc.wa.gov/Policies/109%2...ndividuals.pdf

What is Spina Bifida?
What is meningomylocele?
(the most severe form of SB... a medically fragile child probably has MMC. Learn all you can)
What does tube feeding involve?
(A lot! You would have to commit it!)

If you are truly interested in pursuing this adoption, you need to know all this stuff up front and know what degree of care and medical risk you are comfortable with. Then the SW will be able to release more and more bits of information for you to process and learn more. Once an adoption comes to the point that they will approve the match you will be able to access medical records and so on... but you have enough information now to go ahead and learn a lot so that you gain confidence in whether or not this is a child for you!

Once you do some brief research, go ahead and ask the SW what form of SB this child has, so that you can learn all you can about that type. You could also ask other specific questions that come up in your reading (ie – does he have hydrocephalus?) If you know enough about the conditions, and are serious about going forward with this adoption, the SW should be able to answer at least some basic specific questions that you bring. This will impress the SW that you are doing the homework!

All the best to you in creating your wonderful special family!!!

Keep us informed!

Renee

I am currently considering and praying about an adoption of a little boy with SB. Could anyone give me any advice? All I know and all the agency will tell me is that he has SB and he cannot walk and has a feeding tube. He is considered "medically fragile". I do not know what this means in terms of SB.
Do children with SB have typical mental development? (Do two-year-old's with SB talk, count, sing, learn at the same rate as other two-year-olds?)
I have a friend with a daughter with SB, but she didn't know why a child with SB would need a feeding tube...her daughter didn't need one, and she didn't know of any other kids with SB in her SB support circle that had to have one. Can you explain this?
Do kids in state custody get the proper PT/OT while in state custody?

[Wrenae]

Oh yes the PT / OT question... a child in state custody BETTER be getting proper services! There is certainly provision for this! The foster parents would be responsible to follow through. The SW would be responsible to ensure it is happening. Again you will get this specific info on this child when you are getting closer to a match.

Also regarding mental development... that really will vary with the child. Most people with SB have "typical" intelligence. Many will have some degree of learning challenges. (this is not an intelligence issue) Children with hydrocephalus would have some degree of intellectual impairment. You will find more about all of this as you research.

No matter who the child is who is blessed by joining your family, once you get closer to a match ask EVERYthing that you can of the SW and doctors and foster parents and anyone else who knows anything about the child! When we fostered we were told by our agency to ask the SW every question you can think of before accepting a placement... otherwise certain info may be "accidentally omitted" Same with adoption. The degree of omission will depend on the state you are in and the SW you work with and all kinds of things. That is not fair to the child but as a prospective parent.... you can do something about it...ask every possible question!

All the best!

Renee

Do kids in state custody get the proper PT/OT while in state custody?

[Wrenae]

I just realized that the questions I was posting a response to were from 2 years ago! Wonder if they adopted that boy. Well Trumbuks ... I hope my answers to the other prospective parent might provide you with some wisdom in pursuing your family!

Renee

[TeresaQ]

hi, just wanted to pass along, that my agency ccai has several waiting children with SB. They have several file they will be sending back soon. Just pm me if you would like more info.
TeresaQ