It’s been awhile since I’ve had a down-in-the-dumps post. I try to be as positive, as it almost always lifts my spirits, but like everyone else I have my extra hard, extra bad days. The days when you ask yourself, “Why am I doing this again?” or “Is it ever going to get any better?” Today I threw a giant pity party complete with streamers, horns, and cake (but really only the frosting and NEVER chocolate) and just vanilla ice cream 🙂
Food school was a challenge this afternoon. “B” was especially interested in debating with her food school therapist today. When she was presented with a new food, she almost always made comments like, “But I’m not going to stick it in my mouth.” or “I’m not going to touch it.” B tends to use words as a source of comfort or escape. It’s her way of getting herself through an uncomfortable situation. She’s done this since she was an itty, bitty toddler. She 100% does this all the time at home. She will say things like, “You can put it on my learning plate, but I’m not still ready to learn about it.”
I fried up some mini turkey meatballs for food school today. B was a little uncertain when she looked at them here at home, but thought they were some type of hash brown so she didn’t put up too much of a fuss when I put them in the food school bag. When she got to food school, however, and found out they were meatballs…she went into immediate shut down mode. She refused to touch them or have any interaction with them whatsoever! When she did touch them during the clean up routine, she burst into tears (in spite of our awesome words of encouragement).
B’s therapist and I had a heart to heart after B went to play outside with her sister and friend. Here’s my heart on a plate for all of you to see: I feel like after 13 months of therapy she should be much further along than where she is. Don’t get me wrong; she’s made progress, but it’s been so limited. She eats five proteins, but they turn into three when packing her lunch for school this fall (peanut butter, yogurt, and smoothies). I’m so worried she’s going to burn out on her major source of protein…peanut butter. I know I burned out on spaghetti growing up after eating it EVERY Monday night 🙂
Here’s what I didn’t share with any of you. On Friday, B had her end of the year school picnic. Of course the picnic foods of choice were hot dogs, hamburgers, and brats. B’s least favorite food of all…meat (any kind). There were picnic tables outside, and B went off to sit by herself on the grass because she couldn’t handle the smell of the entrees. All her little friends wanted to come and sit by her, but she moved herself away. Breaks my heart 😦
It especially breaks my heart and throws me into a fit of rage when people still respond (they don’t really say it out loud as much as their body language suggests it) with the, “You just need to be a little stricter with her,” or “She definitely knows how to manipulate you two.” Do these people really think we like throwing thousands (yes thousands) of dollars out the window just because she’s manipulating? I know I’m not supposed to care what these people are saying, but I do (and thanks for letting me get if off my chest).
Today B’s therapist brought up the uncertain professional “Neuro-Behaviorist” (in the sensory world its very rare that a behaviorist understands how the sensory signals are part of emotional component of the brain). Her therapist and I know that B is an incredibly emotional creature. In fact, a lot of kids with sensory processing disorder tend to be more emotional than others. Her therapist believes that B response isn’t manipulative in nature, but more anxiety based. She feels her response is almost like a phobia related to food. Therefore, even if her body is prepped and ready (sensory-wise)…her brain isn’t. Her brain is still telling her she’s extremely afraid of food and can’t physically move on to the next step. In other words, she might need a behaviorist to help her move past the emotional response with food. B’s therapist actually does know of a behaviorist who is very familiar and works with many kids with sensory processing disorder. While that’s good news, I feel so incredibly torn with another possible therapy/therapist thrown our way, more money spent trying to figure things out, skeptical of the sensory/behavior approach used together…you get the picture.
Wow, what a vent! If you’ve made it this far thanks for hanging in there with me 🙂 While the future is uncertain, I also know I have some great support systems out there. I have God on my side, an awesome family, a great network of sensory mamas out there, and some terrific friends. One day at a time…
“I sought the LORD, and He heard me, And delivered me from all my fears.” Psalm 34:4