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Updates on Maggie

On Wednesday morning, I had Maggie’s IEP meeting with the school district. We reviewed in detailed the numerous evaluations from all of her providers. To bottom-line it: Maggie more than qualifies for special education services. The numbers are a little staggering on some of the assessments like she’s at the 1% level compared to her peers on numerous skills. Seeing reports that classify her abilities as “Very Poor” throughout is true, intellectually I know she’s that far behind, but emotionally, it can be a little disheartening. Still, there’s work to do and lots of it.

Three high priority areas of concern are communication, safety, and functional play skills.

Maggie is making progress in utilizing her Picture Exchange Communication Systems (P.E.C.S.) folder for basic communication, but she still has a ways to go. We discussed an electronic talker, which is a possibility in the future, but Maggie isn’t ready for that. We also talked about increasing the complexity of her communication system in the future. In time, I would hope that Maggie expresses more meaning than thirst and hunger. Speech therapy is definitely included in her upcoming IEP. The priority with speech is getting her to associate meaning with something. Verbal people use words to express meaning. Non-verbal methods include using pictures and sign language.

Safety is a high concern because Maggie does not recognize dangers. She’ll decide that she wants to climb up something with no regard to potential falls or whether that object, like a bookshelf, is safe for climbing. At home, we have furniture safety attachments firmly drilled into the walls to avoid her knocking down furniture. She wears her helmet and her pillowed backpack to protect her from seizure falls, but it also protects her from clumsy falls, too. It’s not the clumsy falls that concern us, meaning the adults including myself who have watched Maggie buzz into a new room and immediately find objects to mouth and furniture to climb. Maggie requires constant supervision, so she doesn’t have opportunities to get into danger; however, teaching her that there are dangers in some of her behaviors like climbing and mouthing will go a long way in future behaviors. Maggie knows she’s not supposed to do these things and stops as soon as I call her out, but she’s also sneaky and will try to covertly climb when she thinks I’m not looking.

With respect to functional play skills, children learn skills both basic and complex skills through play. Functional play includes toys like a ring sorter, a shape sorter, building blocks, and puzzles. These types of toys help build dexterity in the hands. Maggie struggles with functional because her attention span is nil. If left to her devices, she plays like a pollinating bee, buzzing from toy to toy without truly engaging in any of it. Her attention span is problematic because if she can’t sit still for longer than a minute at an activity, how much will she actually learn? This requires movement-based strategies to burn off excess energy while still incorporating learning skills. In other words, it requires a great deal of creativity, ingenuity, and patience from all of Maggie’s teachers, including myself.

Maggie’s strengths are problem-solving and cause-and-effect. Maggie may disregard safety concerns, but she will come up with ingenious ways to get what she wants when it is strategically placed out of reach. She will examine the toys and objects in the room, test them for balance and durability before standing or stacking in order to reach whatever object was placed out of her reach. Watching her experiment with toys and other objects for this purpose is fascinating. She is also very motivated by sounds. If she does an action and it causes a sound, either from a toy or a natural response, she is motivated to continue that action. For example, a toy piggy bank with large disks for coins that sings when “coins” are properly inserted is more motivating than a wooden Melissa and Doug style toy that doesn’t sing. Maggie definitely prefers Fisher-Price singing plastic toys over Melissa and Doug's silent wooden toys. Anyways, her interest in cause and effect can certainly be used as motivation to further develop other skills.

Our next step is reviewing the final I.E.P., which will be in December. COVID, of course, complicates her being able to receive speech and other services from the school. As of now, our local district is virtual and will remain so for the foreseeable future. This means virtual services that are complicated by the inclusion of Hazel. My biggest concern is logistics. Andy’s schedule will be changing next semester so he wouldn’t be available to watch Hazel when I’m supposed to work with Maggie during virtual school. Hazel is a very loud, disruptive distraction for Maggie’s success in virtual learning, so I may need to hire a sitter or consider other child care options for Hazel if that’s the case because Maggie will not get the full benefits with Hazel trying to photobomb the lesson or throwing a screaming tantrum because Hazel wants whatever toy we’re using during therapy. She’ll continue receiving ABA Therapy at Turning Point, but her schedule will need to change once we know her virtual school schedule. I think I’m more overwhelmed by the logistics than the work we’ll need to do once everything gets started, but it’ll fall into place.

There’s a TED Talk video I watched for one of my grad school classes. The speaker was a principal from a very low performing urban in a violent community. She heard all the stories, looked at all the data. It looked abysmal. This principal’s response was “So what? Now what?” That woman’s voice repeating that phrase was my mental refrain during that meeting. “So what? Now what?” She repeated to her staff, to her students, to the community, at the next disheartening report. That motto drove her and the entire school community. She led one of the greatest turnarounds in school improvements.

I say that now: “So what? Now what?” I’m ready to roll up my sleeves and do whatever we need to do to help Maggie turnaround.


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