Simmi truly is the sweetest thing in the world. As I sat with her today, we watched Alice in Wonderland and I couldn’t help but tear up as she started acting out a part of the movie. Alice was in the garden and the flowers were singing to her. Simone bursts out in song, waving and dancing…to me it was magical and so special. She loves that part of the movie more than anything else, and it is as if she is imagining herself right into the cartoon. I know that she is aware that her words are not correct, and I have learned not to make eye contact with her while she is singing so that she may freely express herself without feeling embarrassed.
Simmi has a deep and beautiful understanding of human emotion, and embarrassment does not escape her. As she grows and changes, verbally expressing herself is becoming increasingly difficult. She can say “eat”, but she can’t (yet) tell me what she would like to eat. Her vision is improving, and we are now able to put all her videos in the cabinet so that she can choose which video she would like to watch. She understands by viewing the picture on the cover of a video what movie it is, and while it may take her about a minute or longer for the picture to process in her brain, the light finally goes on and she either wants the video on or she will look at the next video cover. This will continue until she finds what she wants. It takes a bit of patience but I love her whole process and the fact that she is using her vision. She
doesn’t like to look at books still unless they are glittery or have simple bright colors, but we still take out her box of books anyway. I have also started bringing my own books to read into her room, so when she is watching one of her movies, she will see me reading and hopefully become more interested in picking up her books as well.
We do have a few behavior issues with her, but I do what is called a “reset” with her. There are things that I can do to help her be more at ease when she is cranky due to her skin or stomach problems and sensory issues. One of the things I have done is to put the TV back in her room so that she can watch Mary Poppins while she is drinking her bottle in the crib. Mary Poppins is a favorite of hers, and it is her most requested item from the crib. I don’t even have to ask her if she wants to watch Mary Poppins, because if I put anything else in, or show her the video cover of a different movie she will immediately say “NO!” The second thing that is a “reset” is to put the gate up in her room and keep the lights off. I don’t need the gate up, because she doesn’t want to leave her room, but I 
put it up anyway so that she will feel in control of her environment. If the gate doesn’t go up, she will push me out the door saying “Go! Go! Bye!” and smile as she tries to expel me from her dark haven. Why does she want me out of the room so bad you may ask? Well, she likes to do things in her room she isn’t typically allowed to do when I’m present. It is really the cutest thing ever, because I’ll peek in after about five minutes and I’ll catch her standing on top of her black leather chair trying to step onto her rocking chair. Is she allowed to stand on her chairs? Uh…no. But that doesn’t stop her from exploring her limits when I’m not in the room. What else does little Simmi enjoy doing when I’m not in the room? She likes to take ALL the wipes out of the box and use each one to clean her floor, the crib, the TV and anything else she feels is dirty…including herself. I usually will give her two wipes, but she wants all the wipes. We know that she understands she is doing something “naughty” because when one of us peeks into her room, she will become startled by the door opening and while she is caught red handed, she will quickly try to put away the thing she shouldn’t have or sit down on the chair she’s been climbing on.
I’ve noticed that when we take her somewhere for an extended period of time, the next day she is worn out
in the morning, her face is swollen and she is not feeling well. This morning was no different. Yesterday I took her for a walk and we were out for quite a while in the sun. When I woke up this morning I could hear her moaning in her crib and not moving around. I went in to see what was going on, and she was just laying there limp on her side, moaning and petting her favorite stuffed dog as she held it tight. She cried when I moved her to change her diaper and she wouldn’t get up afterwords. We’ve taken her out a total of four times in the last month and each time she has had this type of reaction the morning that follows. I’m not sure if the sun is a problem for her still, even though she seems to tolerate it well now when we go out, or if it has to do with the pollen count from the pine. Simone also has low muscle tone, and being very active wanting to walk around and discover things could be making her achy the next day as well. We are unsure at the moment exactly what the cause of this is, but we are hoping that it isn’t leading to a new rounds of seizures. She hasn’t had any seizures at night for about a month. We are usually awakened to a very loud thumping sound that lasts between one and five minutes and will usually happen two more times after that. When this happens, she actually becomes energized and will start laughing and giggling and jabbering up a storm. Sometimes she is up all night after one of these events and she doesn’t fall back to sleep until morning. We don’t get to sleep either, since we are up counting the amount of minutes her seizures last and how many she has after that. There seems to be a cycle to when they come, but we haven’t quite figured out the exact cycle. In the days leading up to her seizures, we do notice that she will become less active, more tired and cranky, clingy and she doesn’t want to walk or jump as much. After the seizures happen, her language always improves and new words come out clearly. The vocabulary she has right now I believe is due to seizures she has had in the past. With each event, new words come out…some stay and others slip away after a week or two. We try to get her to repeat those words as often as possible and to build on the core words she has now, but I can see how frustrated she gets when she gets stuck trying to say a word that just the day before she could say and now she can’t. During times when she knows a word but says it wrong, she has resorted to closing her mouth completely and makes sounds with her lips shut tight. I’m unsure whether she is doing this on purpose, or if its a part of having Apaxia, but my heart breaks each time she tries, because I can see the frustration in her eyes.
Tags: Apraxia of Speech, behavior problems, childhood development, seizures, sensory integration disorder, toddlers
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