Differently-able: Using Utensils

by Dani

Because Dragonfly was not only born without usable thumbs but also with wrists that turn in, learning to eat using utensils has been a bit of a challenge. We're still working on using a spoon for thin liquids (she's fine with medium thick things like applesauce and yogurt) but she's got the fork thing down! Check out her grip on the fork in the pictures below! Differently-able! :)


by Dani

Recently on one of the online groups I am part of the topic came up of our children with radial aplasia/dysplasia being referred to as handicapped. To be honest, I really, really dislike the term. It's not that it is a bad word or degrading or a slur or anything like that in and of itself.  I just don't see the word as applying to my children. And, what's more, that I don't want THEM to see it as applying.

I fell pretty much the same about the term "disabled". Again, it doesn't fit Lil'Bug at all. Not at all. There is NOTHING this child can not do with his two hands that any "normal" handed child could do. There is no "dis" about him. I suppose a case could be made that Dragonfly fits the definition of disabled as there are some things she can not yet do as a result of her congenital issues and perhaps she will never be able to do those things.  But who am I to limit her?

So in that spirit, I would like to propose a new term that I will refer to them as... not "dis"-able but differently-able. I plan on sharing on this blog regularly things they are able to do but maybe doing it differently. I say it a lot in real life and I'm going to say it now here...

My kiddos have hands that look different, but there is nothing "wrong" with them. They can do anything anyone else can; they just might do it differently.

Occupational Therapy for Dragonfly

by Dani

Occupational Therapy (OT) is one of the main treatments for radial dysplasis/aplasia. Some doctors don't seem to want to recommend it, but OT can really help a lot with stretching the hand/wrist to get the greatest motion range possible.

We began the process to get Dragonfly into OT as soon as we got home, but due to some bureaucratic paperwork type issues, it didn't happen until Aug. Since then, she has been getting OT twice a week to help with strenght, flexibility, and fine motor activity.

One activity designed to help with strenght is to give her some play-doh with a lego inside and made her get it out. We also have her push the lego into the play-doh as well as pat down the play-doh.

Puzzles and lacing beads are great over all fine motor activities. Dragonfly has the least issue in this area and can easily manipulate very small things with her fingers.

For flexibility, we primarily rely on the braces we had made at Shriner's. Some children wear these type of braces all the time, but we only put them on at night so that Dragonfly can use her arms and hands freely during the day.

So this is a glimpse as to how OT can be used to benefit a child with Radial dysplasia/aplasia. OT is definitely a big part of the treatment puzzle.