It’s been great not really doing anything at all over the last week, and as my time off comes to a close, I am preparing for the next room on my list…Simmi’s room. We’ve all ready painted her room and it has new carpeting, but her list of needs is great and I don’t want to wait any longer to get her room done.
Simmi has some special needs and getting her into a more comfortable environment will help her to thrive and learn. We’d be here all day if I were to go over everything that she has trouble with on a day to day basis, so I’ll keep this entry as short as possible.
The first and foremost issue we deal with on a daily basis is Simmi’s food allergies. She has multiple life threatening food allergies that include peanuts, milk, soy, wheat, eggs, tree nuts and dogs. Dishes must be washed well, and we must be very careful throughout the day with cross contamination. She has a neurological speech disorder called Childhood Apraxia of Speech, as well as having limb and global apraxia. Simmi isn’t like other three year old children…she is more like a two year old (this is not reflective of Apraxia but something uniquely her). This poses a very difficult problem for us as we think about her going to school someday. How do you send a child with life threatening food allergies to school when she has no concept what so ever about foods she can’t eat, and has the attention span of a one year old baby? She is completely clueless as to why she can’t eat what we eat. I wish it was as easy as just explaining it to her. Anyway, at this point we’ve resolved to give her the very best home environment we can with the hopes of someday soon being able to have playmates come over. If we can’t take her to the kids, well, the kids will have to come to her! LOL Setting up an environment where she is free to be herself and still be safe is a goal for us. I would love to see her go to school, have friends and enjoy being who she uniquely is, but for now it is a day by day, moment by moment existence that we live.
If I can sum up her issues with one sentence, I’d have to say this…
“Simone’s brain and body betrays her on a daily basis.”
Most of the time she can see, then she can’t, she has spectacular hearing which can disappear if she is viewing something, she will be walking and just collapse sometimes as her legs give out on her, she’s good with her hands and then all the sudden she can’t even bring herself to do a task. She has extremely high energy which is short lived. Its almost like she goes super nova. How frustrating for her, right? She can say some words now, but they seem to come and go. As I said before…her brain and body betrays her.
Many of the things we are doing in the house are for her benefit. From the colors we choose in the main parts of the house, to the little sparkling things we’ve added to help her with her sight. We’ve painted our hallway walls with a paint that has a sparkle to it, so that as she walks her brain will pick up the little glimmers. The stainless steel refrigerator, as well as other things that will be incorporated later are all for her visual needs. Controlling the light that streams into our house is another thing that we need to be mindful of.
Her room was painted white with a silver sparkle dust in it. When the light hits the walls its almost as if the walls are twinkling and moving. I’ve designed her room with play and therapy in mind, and I’m really excited to start this project. When we’re done with the complete design, we’ll explain what we’ve done and why. We’ll also be posting it on Simmi’s website.
Our other projects for Simmi will include a Sensory Garden and designing half the courtyard in the back for her needs. She loves being outside, but we don’t have the proper shading in back to help her visual needs. The result of not having proper shading is super sensitized child who can’t control her impulses.
We love her dearly as she is, and improving her quality of life will help her be at ease with the world around her and at the same time it fills our souls with satisfaction and delight to watch her grow and thrive. We love you Simmi girl!