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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