The Official Word

Yesterday when I picked Ceeya up at daycare, they told me she not only refused to eat her yogurt, but she had a complete meltdown about it. It feels like the range of foods she will eat is steadily shrinking.

Here’s the good news: I have a consultation with a nutritionist tomorrow. Cost: $175. That’s not so good.

But: we received our full evaluation from the occupational therapist. Verdict: Ceeya presents with an array of behaviors that indicate sensory processing difficulties, including:

Tactile defensiveness, which means her central nervous system has difficulty processing and modulating incoming touch sensations. She is averse to many textures including many different kinds of food. This has impacted her muscle development in her hands because she does not use them as effectively as she needs to manipulate and explore, so she is delayed in terms of grasp patterns and object manipulation.

Oral defensiveness, which makes her highly sensitive to tastes, textures and temperatures of food. She eats a very limited range of foods, primarily cheese, fruit, crackers, chips, and over time has actually decreased the foods she will eat, probably because she is bored from eating the same damn thing all the damn time. So now off the list are cottage cheese, yogurt (as of yesterday), applesauce, steamed green beans, broccoli and peas.

Poor modulation, which means she can’t self-regulate very well. She gets upset easily and can’t calm down, she has a hard time falling asleep, she is a restless sleeper and if she wakes up in the middle of the night she can’t put herself back to sleep. I am serious when I tell you that I have not had a good night’s sleep in over two years.

Over-responsiveness to sound, i.e. “kids’ birthday parties are my worst nightmare.”

Decreased vestibular processing, which means her awareness of where her body is in space is poor and unpredictable movement of her body freaks her out. This translates into her hatred of swings, not liking to tip her head back to get her hair washed, and an aversion to unsteady surfaces like a balance bridge or a large trampoline (she seemed to like the small trampoline at the OT center, which had a support bar she could hold with both hands while jumping).

So we clearly have some work to do. I am relieved that this is not just my imagination, or something she will grow out of on her own. I was really upset when I first read the report, mainly because of her fine motor delays, which I wasn’t even aware of. She has low muscle tone and decreased strength in her hands due to her tactile sensitivity. Rationally I know this is reversible, but it just hurt my heart to read it.

Recommendation: occupational therapy twice per week, as expected.

Current status: waiting for a phone call back from the head of the OT Center to discuss more realistic options.