It’s Been a Hard Day’s Night….

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 πŸ™‚

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 πŸ™‚

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 πŸ™‚ 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

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About Jessica

I am currently a stay at home mom to my two beautiful girls. B is 7, thoughtful, and has sensory challenges. C is 5, spirited, and keeps me on my toes. Before B, I was a special education teacher. She's taught me more in her 7 years than I learned in my 5.5 years in college and my seven years teaching combined :)
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4 Responses to It’s Been a Hard Day’s Night….

  1. Jen Novotony says:

    Jess, you are definitely blazing a trail for a lot of other parents. You’re doing a hard, hard thing and it’s okay sometimes to feel bad and sad about what’s not happening. It’s human. You’re human. And I know that you’ll do your due diligence (research) and determine the best next step. All with a positive attitude. I will keep you guys in my prayers.

  2. erin says:

    Sorry the tough patches lately are hitting you hard. I know when Elyse has behavioral issues that challenge me, those days and phases are particularly hard too (and I don’t have to wonder if its worth all the money to change it, like you do). The things I cope with with Elyse are only a small fraction of what you have to think about with B, but I know how hard even these smaller things can be. I will say that, as a behaviorist myself (completely biased ;), I think you should explore that route; the brain is organized so that the emotional (especially fear) processing areas are very closely connected with the eating/hunger/sensory areas. They have to be–its important for survival to make emotional memories about eating (positive and negative) and all of our sensory experiences. No surprise to me there. B just happens to have a more closely tied/sensitive system when it comes to food and anxiety. Behavioral therapies are some of the most effective ways of helping adults and children learn strategies to cope with emotional situations that overwhelm them. In adults, these types of therapies are very effective at helping people deal with fears and phobias. I will also say that I went and visited a behavioral therapy clinic for children when I was teaching a class on behavioral techniques. The director was fantastic, and let me and my entire class observe the therapy in action. It was phenomenal. I have never been that “moved” in my professional life. To see all of the fundamentals of behaviorism “alive” to help the kids learn all sorts of things (language, appropriate social play, dealing with intense emotion). It was really impressive. Takes a lot of time and cooperation from the parents (but you are already familiar with that ;), but it can be really positive and effective for all of you. If I can help at all with very rudimentary questions, let me know. After our kiddos are a bit bigger I am thinking about going back to school to get my certification to be a applied behavior analyst (right now I have a Ph.D. in Psych with an emphasis on neuro-behavior and pharmacology… all book-learning, not hands-on therapy training;) Anyway. I was impressed seeing first hand how the process goes. The kids I observed were very much enjoying their work with their therapists. I digress. Hang in there, Jessie. Anything I can do to help would be no problem, with the caveat that I have a great understanding of the scholarly principles of behavioral therapy, but not a lot of experience (other than what I have read) with the applied work. You will have tough patches and shining moments ahead no matter what route you choose, and I know you will make confident and informed choices about what your girls need through their entire futures. I admire how you strive to keep a great positive attitude for you girls πŸ™‚

  3. Donna says:

    You and Kevin are doing everything right. I am sure you will do your research and make an informed decision together on what the next step is for you and “B” to take. This is so hard for me to just stand by and not be able to help you out, but I know in my heart that God has a plan and he created “B” for something special. She is so loving and has the biggest heart…I am trusting God to provide whatever it is that “B” needs. You and Kevin are so strong and I know you will help each other get through this stuff! Your love for your girls is so evident and all that matters is you do what you feel is right and the best for “B” and your family. We are here for you, Kevin, “B” and “C”!

  4. Sybil says:

    Thank you so much for this post! I am learning so much from you and am grateful that God led me to you, and I truly believe that I would never have found you, half-way across this country, if not for divine intervention. Hang in there!!

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