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Maggie’s At-Home Therapy

As I write this on my phone, I am holding my daughter, Magnolia Martha the magnificent. I love her so much. When I stare into her eyes, I see my eyes in hers. Her complexion is my complexion. Her curls are my curls. Everything else, from her nose to the shape of her face and a myriad of other features, I see my husband. Her nose is Andy’s nose. Her face is his face. I study her features, the droopy eyelids clearly fighting sleep, and I whisper “I love you, Maggie,” into her ear. She smiles.

Her entire day, between activities, free play, and down time, embeds strategies from therapy. It forces me to check myself before I speak and act. I feel like it’s more parent training than child therapy.

“Maggie, no! Don’t [fill-in-the-blank]!” If I’m not careful, that could be my nearly constant refrain. “Maggie, no! Don’t put that toy/dirt/random anything in your mouth! Don’t climb on the child safety gate/the cubbies/the chairs/the table/whatever!” If left to her own devices, she’ll attempt one dangerous maneuver after another. More than anything, I want her to stop climbing and putting things in her mouth. I want her safe.

Instead, I rephrase my statements. I avoid using “Maggie, no! Maggie, don’t!” I’ll say “Maggie, toys stay in your hands,” “Maggie, dirt is not food,” “Maggie, feet on the ground,” or “Maggie, sit on your bottom.” I look for every and any opportunity to complement her actions. It is hard. When she does something she shouldn’t, “Maggie, no! Maggie, don’t!” is such a knee jerk response. Maggie doesn’t typically opt for the right and safe choice and it’s frustrating sometimes. The devil on her shoulder has more sway than the angel.

With both behavioral therapy and occupational therapy, the big goals right now are to stop her mouthing and climbing. It’s hard for her to manipulate toys or do anything with her hands if it all automatically goes to her mouth. Even for a “normal” kid, climbing on furniture and gates is dangerous. For her, it’s worse because of the possibility of a seizure.

Next week, Maggie tentatively starts ABA Therapy at 35 hours a week (provided there are no snags with insurance). It will be like her going to school full time, in-person. She’ll have one teacher working with her one-on-one. There are other children and they pod them in groups of three during certain times of the day so they can work on social skills. She’ll also have services from another institution, like behavior, occupational, speech, and physical. These are on top of the 35 hours ABA, much of it performed virtually through Google Meets or Zoom.

It sounds like a lot and it is. I worry if it’s too much, but I think she’s ready. Her seizures are down to two to three a day, she’s halfway through weaning one of her four epileptic meds, and the keto diet has worked incredibly well. As was explained to me, her diagnosis of Lennox-Gastaut Syndrome makes it highly unlikely that she will be truly seizure-free. The goal, in her case, is seizure reduction. Whether her progress is all attributed to keto, intentionality, prayer, or her own desire is not clear. As she comes out of the cognitive fog that I can’t help but attribute to her medications, it feels like we’re building up momentum. I want to take advantage of this momentum, strike while the iron is hot so to speak, and if the team of experts think this amount and combination of therapies will give her the best possible chance, we’re going for it.

She’s finally snoring gently in my arms. The angel won, finally.


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