What do you need to think about?

Momraine has 2 children with missing limbs so she'll be a great resource for you. I know she has a busy holiday weekend and might not see this til Tuesday, so you might want to post again on this thread on Tuesday if you don't have any responses from anyone.:)

I just have a sec and am checking in by cell phone. There is an organization called ican. It stands for international child amputee network. They are a great resource for parenting limb different kids. My daughter uses prosthetic legs. These are not well covered by our insurance. She is a dancer and needs high tech stuff. We use Scottish rite hospital in Dallas. The do not charge for thier services. Shriners hospitals are like that too. Most children born with upper limb differences choose to just do without prosthetics and figure out things with what they have. My son uses wheelchair but no prosthtics. Both of them get around in the house without prosthetics or wheelchairs even up stairs.

I am on my computer now where it's easier to type! There are so many levels to limb difference and so much that makes a difference. There are kids with just a few missing or short fingers, that really are not disabled by it all except maybe in playing preschool finger rymes! LOL, most kids missing a hand fingure out pretty much everything too. A single leg missing below the knee is not hard to deal with, but missing both or missing a knee or two is harder. It also changes things if both arms are involved. There are children missing all four limbs as well. Both of my children have three limbs involved. My dd has had surgery on her hand and on both legs. She likely will have more on her hand and on one leg. She has a wheelchair for back up and next year will have two pairs of prosthetic legs, one for regular walking and stuff and one for dancing on Pointe. Later she hopes to get running legs as well, one year when she was younger she had a pair of wading legs that could go in water. My son has no legs at all and no left arm at all. He will always need wheelchairs. Both children will someday live alone and be able to completely care for themselves. My son will need a wheelchair accesable home and things arranged for him and a very specialized car. My daughter may need some things special, but not nearly as much. Anyway, feel free to ask any questions!

I have a physically disabled DD. Over the years I have learned that having a house with lots of single step ups and step downs (like sunken living room, sunken family room) that you bought because it has a complete bedroom suite downstairs is actually a logistical nightmare and downright dangerous for my DD using a wheel chair or a walker. It was way easier for her to just crawl up a whole flight of stairs. ANother thing that you may want to think about is what kind of physical assistance your child will need. My DD is getting too big to be lifted into the car (and a wheel chair vans cost a ton), too big for me to easily get into the tub(even though she can safely bathe herself once she is in there, I can see a day in the not so distant future where I will not be able to take care of her very well myself simply because of physical strength issues. All of these things can be worked around and you do learn the work arounds but its something to think about. Also, when you combine physical disabilities with mental and emotional disabilities, life can be very limiting not only for the child but also for the family. I think what I miss the most is that we really can't do the heavy duty outdoors stuff like hiking anymore because there is simply no way to bring her along and I am not going to leave her behind while the rest of the family goes on vacation. Some things to think about.

The very best advice I get comes from other parents who have children with the same conditions. If you can find a support group that deals with those conditions that you are dealing with they can really help you a lot. In my case we have a couple of support groups for the missing limbs and a couple for the RAD. We do have a wheelchair van, we bought it used. My son has a power chair and so it can't be lifted into a car. We do have a ramp and we can get it into my son's pick up or into my minivan (if we fold down all the seats) but it's a royal pain. Right now he is in a manual while we wait for parts. While it's true we can't do hiking and stuff, we do find a lot of stuff to do together as a family. We did have to learn to call places ahead of time and research thier accesability.

Lorraine, too funny that you say that about the ramps. We have two cars that can fit the power wheelchair but the darn ramps won't fit in the car at the same time. I can't stand the power chair anyway, so no big loss. One of my friends with no legs says he actually prefers the manual chair to the power chair anyway because the power chair is just generally a pain to manuever. I totally agree that you find other family things to do and you just adjust your life to fit the circumstances but every once in a while you do look back and realize how much you have changed because of some very basic limits your child has. On the other hand, there are a lot of great things you would never experience with a typical child. We are all going to learn to ski because there is a resort with disabled skiing reasonably close. We have a certain amount of local fame because of my DD and get invited to fancy things with bigwigs that we would not otherwise be included in. Short (or no) lines at Disney for the whole family (which makes it easy to just go on a whim). ANd my husbands favorite. . .front row basketball seats where they would normally run 10K a season.

My son only has one arm so he prefers his power chair. He is tiny so it's hard for him to go up even a slight incline with his manual chair, but he can manuever it pretty well. My daughter has prosthetic legs and has surprised me with what she can do. When I first put her dance classes (because she begged) her ped. was very worried, and a year later, apologized to me for not being more encouraging. On my blog you can see pics of her dancing. The thing with limb differences is that it can encompace such a wide range. Children missing one hand or foot can have a very normal life, most kids born missing a hand don't even mess with prosthetics, they would rather be able to feel things. Oh and our ramp folds into four so it doesn't take up much room, but it sure is a pain to open it and use it.

I have read your blog before. I love seeing all that your kids can do. It gives me ideas for my DD. But you are right, "limb differences" spans a wide variety of conditions. I also think its important for folks considering adopting kids with limb differences is that they will also face all the normal potential adoption challenges such as RAD, disease etc. . . Most likely that limb difference is not what made them adoptable in the first place.

Yes my son has major limb differences, but the wheelchair and the one arm stuff and all that is way easier for me than his RAD.