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Glass Half Empty, Glass Half Full


Progress is rarely linear. It’s easier to think of progress as a gradual increase in improvements, and in some cases, like compound interest, progress indeed works in that linear manner. But progress concerning improvements in a special needs child requires a different level of understanding. A glass partially filled with water could be considered glass half empty or glass half full, and both statements would be factually correct, but both statements are shaded in connotations and implications.


Yesterday, I had my monthly parent check-in meeting with Maggie’s ABA case managers. The meeting reviews Maggie’s current goals, her progress, and we discuss ways to improve and reinforce learning at home. The data collection on Maggie’s behaviors is simply impressive. For instance, mouthing is a negative behavior that we have been addressing for several months. Many children with special needs require sensory stimulation and mouthing objects tends to pacify something internally. I don’t fully understand it, except based on my observations of my daughter, if she gets frustrated or otherwise upset, she feels better if she puts something in her mouth. Our solution is chewies that are designed for kids with sensory processing issues attached to her pillowed backpack so they’re always within her reach. The introduction of this solution resulted in a dramatic decrease in mouthing behaviors, but she’ll still mouth unfamiliar objects. She may be almost four, but developmentally, she is still very much a baby and if left to her devises will get to know an object first orally before examining it with her eyes or hands.


Another area that we are working hard to make gains is in the area of potty training. Maggie is outgrowing diapers. The largest-sized pull-ups are too small. We have found that Pampers Easy Ups are a better fit, but with her recent growth spurts, she may outgrow those as well within the next few weeks or months. I have to mentally eliminate any thought that kids her age and size are typically potty trained by now. Like most everything, Maggie does not fall under any typical categorization. We’ve had some success, like her peeing in her potty first thing in the morning, but the rest of the day can be hit or miss. We’ll be trying a new strategy, having her wear big girl panties underneath her Easy Ups so she develops a greater awareness of accidents. Hopefully, this will work. Today is her first day with a backpack full of back-up panties. The problem goes beyond the logistics of finding diaper solutions for a growing child. We want her to develop the autonomy to use the potty without needing to rely on others to help her take care of toileting issues.


Her biggest goal is in the area of communication. We’re using P.E.C.S. (Picture Exchange Communication System) to get her to express her needs and wants. At school, she seems to be doing pretty well. At home, it’s not going well. She’ll rip off a picture and hand it to me haphazardly, not necessarily intending or requesting whatever is depicted in the picture. She is also still in a high chair at home because it’s so important that she eats every last bite and not try to snatch foods from others because of the strictness of the keto diet. After that meeting, we made a change to our dining room to address Maggie’s P.E.C.S. goals and upgrade her eating habits. We pushed our table up against the wall and Maggie will be seated next to the wall and me. This gives her the option of getting up to run around if she needs to. She struggles to stay still, even for meals, let alone for any sort of academic table work. Her P.E.C.S. folder will be right in front of her at the table. The open page will only show three pictures: food, drink, and blank (meaning “no, thank you”). When she hands me the food picture, I give her a bite. Repeat until the meal has been consumed. We tried it for dinner yesterday and except for Hazel whining “I want! I want!” referring to Maggie’s P.E.C.S. folder, it went perfectly well. I think she jumped up twice, but she ate everything and preferred to not be restrained in the high chair. She was happier with this arrangement.


Her case manager commented about how Maggie is making more noises. She’ll say long vowel sounds, this clicky noise, and she’ll hum familiar tunes. “This Old Man” is her favorite, but she’ll also hum “Twinkle Twinkle Little Star.” Even better, they are humming back and repeating sounds that Maggie starts, and Maggie will hum back. This call and response is a huge win for developing other skills.


Recounting the conversation with Andy, he took a glass half empty attitude about her developments. “She used to do that, all of that before the seizures started.”


“I know. And she stopped, but she’s doing that again. This is good.”


If I allow myself to get lost in what she could do before the seizures started, the skills she lost, the idea of where she should be based on chronological age, I could just about lose my mind. To me, that train of thought is not helpful. It’s counterproductive.


He means well. And yes, that’s technically true. The glass is half empty.


But it’s also half full.


Maggie’s progress is more like square dancing: two steps forward, three steps back, promenade forward a step or two, slide to the right, slide to the left, skip along, fall back hard, spin in a circle, where were we? Here we are. Two steps forward. Which way is forward? Here we are. One step back. On and on it goes, with so much movement but little progress if you consider a linear perspective.


I don’t consider a linear perspective. I consider the convoluted path under her feet, even those backward or to the side, a mark of growth and progress. Maggie may be different from other kids, but I see how much she’s come along, even if she’s been in this place before. Yes, she used to say words, like “Mama” and “Dada.” I pray that I’ll hear her call me “Mama” again as she did at age one. She hasn’t said words since the seizures started at one and a half. Yet, look how far she’s come, how high she’s climbed, from where she fell back from when the seizures first started!


Yesterday, she had three total seizures. Tomorrow, she could have ten. I don’t know. I never know. What can I say is yesterday was a good day. She only had three. She laughed and played. She successfully used P.E.C.S. at the dinner table. She peed in the potty twice. Her gains may not seem like much, but for her, for me, they’re huge. I have to take her progress one day at a time.


The cup is half full and we’re off-roading the linear path.


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