Monday, February 22, 2016

Never judge a book


If you look at the Sonze what you will see is a baby.  If you look at her while she is in the newborn to 6 month music class, you would have no idea that she does not technically belong.  She is at least 6 months older than most of the kiddos yet she looks smaller than the majority of them.  She does not have a mouth filled with teeth; she is just now finally getting her first tooth.  She does not sit on her own or hold onto toys, and she hardly raises her head while on tummy time for more than 5 seconds.  When people look at Sonzee and then ask me how old my baby is, there is definitely a moment of silence and shock after my reply.  Based purely off looks and outward presentation, the bear can easily be misjudged.

I am guilty of falling for the misrepresentation myself.  I purposefully changed out all of her clothing to only have 12 month or 12-18 months so I would not keep "forgetting" she is not 6 months old.  I honestly do not care if the pants have to be rolled or if the shirt is falling off her shoulders...it is just easier for me mentally to see her in age appropriate clothing.  I can be thrown off when I lay her down and she just rolls over and immediately sucks her thumb.  We all know a typical one-year-old does so much more physically and expressively, that combined with her small stature it can make us all think there is nothing more than just a young baby in our presence.

However, we would be wrong.

Sonzee is unable to coordinate her muscle movements the way they need to be in order for her to achieve physical achievements.  She is also unable to coordinate her oral structures so they can produce sounds and words appropriately.  Her eyes have a similar deficit in the fact that they are unable to communicate appropriately with her brain in order for her to see objects appropriately.  To sound technical, Sonzee suffers from global apraxia.  This is not the only deficit she is dealing with, but it is one that negatively affects her significantly.  What can be confusing when children present with a form (or all forms) of apraxia, is that it can be assumed they do not understand.    

However, that would be wrong

Sonzee understands.  If I give her ample time, she responds to me in different ways.  She lets me know her likes and dislikes.  She lets me know when she is happy and sad.  She lets me know when she wants to do more of an activity or she wants to do less.  Trapped inside her little adorable body is a Sonzee Bear communicating with me and letting me know she understands.  I get so excited when she shows me that she is present, that she is awake inside.  When she closes her eyes before she is put underwater at swim.  When we tell her "clap, clap" and we see her try to move her hands together, even if there is no coordination and to a bystander it looks like she is not doing anything remotely looking like a clap.  When I say, "here is miss Holly", and we both do a double take because we could swear she tried to reach out for her.  When someone she loves enters a room and she hears his/her voice and she makes a sound or moves her body excitedly.  When she is lying down and we say "kick, aba", and she kicks Sam in the face multiple times.  Her little personality is adorable, it is shining, and it is there!    

It can be easy to be caught up in the moment and forget that my "baby" is capable than so much more than how she physically presents.  It is much easier to simply judge a book by its cover.  Although I am getting to the point where I really have to watch what I say around her; it would be really uncomfortable for us all if her first and only word ends up being a profanity.  However, that would be a really awesome conversational piece.   


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