Sunday, August 14, 2016

The Adventure Begins...

 Ellie is starting kindergarten, so I made a book to help the other kids get to know her.


     For parents it may help to know the full story, though it probably involves more info than your kids can digest. Ellie has a genetic condition called Tibial Aplasia Ectrodactyly, which is a dominant trait with variable penetrance (it's possible to have the gene without the gene getting physically expressed in the body) and she actually has a half brother with it (he lives with his birth mom.)
     When Ellie was born, her lower legs did not have the large bone (tibia,) and this caused the knee and ankle joints to be non-functional, and the feet to be very clubbed. The typical treatment for this is a knee disarticulation (amputation through the joint) and fitting with prosthetic legs, and Ellie had this done just before she turned a year old (as did her half brother.) She doesn't seem to have pain in her legs, and she can weight bear on the ends, often walking right on the bare nubs at home.
      Ectrodactyly is the word that refers to the missing fingers and cleft palm that she has. She has not ever had surgery on her hands, they are exactly as they were when she was born.

Question/Comment and Answer Section 

Below I have included some typical questions and comments that we encounter, and some answers that you can use to help your child understand Ellie's differences.

Q: Why does she only have 7 fingers?
A: Usually with children I say, "because she only needs 7 to do all the things we do with 10." 

Q: Why doesn't she have feet?
A: I used to explain "because the feet she was born with didn't work and she couldn't walk with them, so the doctors took them off and gave her robot legs to walk with" but this seemed to be more info than kids could digest, because many came right back with the exact same question again. We have actually taken to just saying "she was born that way; every body gets made a little differently" and most kids seem pretty satisfied with this answer. 

C: Aww, I feel so sad for her.
A: Don't feel sad, she doesn't! She can do all the things she wants to do.

C: Oh, that's [scary/gross/weird]
A: No, it's just different. Different is not the same as [scary/gross/weird]

Q: Are you sure it's ok for her to do that? (typically asked while she climbs something on a playground)
A: Yep, she's a great climber cause she's so strong.

Q: Can she [walk/run/jump/climb/write/use scissors/etc] 
A: Yep! 

Q: Does she need help?
A: Probably not, she can usually do it on her own. If she needs help, she will ask.

One thing that would be helpful for your children to understand is that Ellie herself prefers not to answer questions, so when they need something about her clarified, it would be best if they talk to you about it at home. I am happy to answer further questions anytime, but Ellie herself would rather play than try to navigate questions.

Further questions can be left in the comments section here, or emailed to me at