People often ask us how we communicate with Ella! How do you know when she is hungry? How do you know when she is tired? How can you tell what’s bothering her? These are just a few of the specific, and most frequent, questions we get asked.
I think the more important question should be, how does Ella communicate with us? I always want to compare it to someone who has limited, or no, use of one or more parts of their body parts. I have seen videos of kids with no arms use their feet to eat. Or adults with no legs, who scoop around on their butts. People with limitations are always finding ways to adapt, and Ella is no different.
Her four main ways of communication are her eyes, her hands, her mannerisms, and her voice. On any given day you can look into her gorgeous blue eyes and know the exact mood that she is in. Her eyebrows will sag a little if she is sad, and when she is happy her eyes will be open wide and bright. Usually a sad face will be accompanied by some sort of angry yell or scream, and a happy face will come with a smile. Not just any smile though. The kind of smile that naturally makes you smile too.
Of course there are those times where she falls in between. These are some of my greats memories with her. It’s during these moments when I take the time to sit, or lay, with her and just be. Sometimes I cry, sometimes I share stories of the day, and sometimes I tell her things that are bothering me. I know with every fiber of my being that she is listening and hearing what I am telling her. Truth be told, she is the best secret keeper I know.
Ella has an amazing way to pick up on my emotions. When I am crying she gently strokes my face, as if she is telling me that she’s ok, and everything else will be too. When I tell stories or vent, she will grab my hand, or clap her hands letting me know she hears what I am saying. She can always pick up on my mood, and if I am telling her a funny story about Jack or CJ, she will laugh. It’s during these private moments of quiet and peace that Ella is her most focused.
During moments of complete frustration and anger, Ella wants to make sure everyone knows she is struggling. Sometimes there are tears, but most times there is a lot of screaming and moving. Her arms and hands are constantly going, often times grabbing whatever she can reach, including body parts. If there is something for her to chew, she will find it, and she has been known to hit her chest repeatedly. If she is on her back a lot of times she will wiggle her butt back and forth while yelling at the top of her lungs.
It’s during this time, we have trouble figuring out what’s going on. After five years of her with us, we have gotten her on a pretty set schedule. We know when she is hungry, we can tell when she is thirsty, and most of the time it’s not hard to figure out when her tummy hurts. Sometimes it’s as simple as her wanting attention. Other times, we can try ten things to soothe her and none of them work. Ultimately some time in bed with a little Goldie and Bear, does the trick. It’s her happy place, and usually the last resort.
Today she has another rough morning. These mornings truly break my heart. I let her relax in bed for a little while alone, and when Jack when down for his nap, I went in to sit with her. I crawled into bed and the second she saw me, and smiled. She grabbed my hand, squeezed it, and then brushed my face. I knew it was her way of telling me that she was okay. Not to worry mom. After that she was laughing and smiling, and it was clear her mood had turned around.
A lot of times what we do when we are home is contingent upon Ella’s mood. Sometimes the boys and I (or Steve) will do things together, while Ella takes a break, or sometimes Ella will be just as involved as she can be. Other times we divide and conquer, because she does love her one-on-one time with whomever she can get it from. It makes those days Dani and Amanda are here that much easier as it provides an added piece of flexibility for all.
Ella may not be able to communicate a lot, but we have most of her basic needs covered. While she is a medically complex child, she still share the same wants and desires of other children her age and we are happy to do all that we can to make that happen.
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