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Maggie’s 1st OT Session

Maggie had her first Occupational Therapy (OT) session this morning. Needless to say, we have a lot of work ahead of us.

When you have a special needs child, whatever the condition, there is a lot of hurry up and wait. Hurry up to land an appointment and then wait months for the appointment. This was the evaluation and given Maggie’s skill set, the recommendation is weekly OT, but now we are on the waitlist until a therapist is available. Tomorrow, Maggie has her evaluation for ABA Therapy, and based on those results, we’ll have a recommendation for frequency and duration of sessions. Fridays, we have a weekly virtual Behavioral Therapy session where our first goal is working on strategies to get Maggie to stop putting everything in her mouth. All of these sessions are complicated by Maggie being nonverbal and until we have the audiologist evaluate her hearing and initiate speech therapy in October, it’s hard to know how much or how well she hears. She had ear tube surgery three times after frequent ear infections. We had an initial meeting with the local school district, and a follow up meeting scheduled for next month. It is a slog, the logistical hoops with insurance, providers, and oh so much paperwork asking detailed questions that would be impossible to answer without combing through journal entries for the exact age and date that she began to reach a particular milestone.

Maggie’s diagnosis of Lennox-Gastaut Syndrome has a pretty damning prognosis. From intellectual disability to SUDEP, all of the things that can go wrong give me nightmares and I try not to focus on those potential outcomes. If I do, it’s paralyzing. Her seizures are improving tremendously with the ketogenic diet, but she’s cognitively an 18 month old. When she was diagnosed with epilepsy, I thought the fight was against seizures. We need to control the seizures, whatever the cost. Uncontrollable seizures lead to brain damage. Now, I realize that the long war isn’t about seizures. Controlling them is important, certainly, but the war is to give Maggie her best possible chance at a “normal” life. What does that mean? I don’t know if she could ever swim in a pool or drive a car, but I damn well know I’m going to do everything in my power to give her the best possible chance to do whatever she wants to do. I want her to find independence, to be curious about the world, to develop friendships and deepen relationships with others like her sister. If Maggie wants to be the next American Ninja Warrior, I want to be that mom in the sidelines cheering her on, so incredibly proud of how far she’s come.

At the OT evaluation, Maggie ran around the room, climbing on every surface she could reach, putting every manipulative in her mouth, gripping the table and waving her head like she’s grooving to a playlist in her mind. Some of the session allowed free play and some required seat work. That was the struggle.

OT focuses on fine motor skills, basically learning how to use your hands to do work. We tried to get her to stack blocks, color with a crayon, pull beads out of a cup, and a myriad of other tasks. Maggie didn’t perform many of them. To my frustration and annoyance, Maggie was more interested in playing the great escape and figuring out how to get out of her seat, which she successfully did on several occasions. What was frustrating is knowing that many of those things are things I know she can do, because I’ve seen her do it in other contexts. She has eaten Cheerios out of a cup using a pincer grip. She has found crayons and other writing utensils and colored on walls or the furniture. She hasn’t really stacked blocks, but she’s definitely motivated to knock them down.

She struggles to stay in her seat and perform a task. This reminds me of the special education students, my inclusion kiddos, that I’ve had in my classroom over the years. Many special education students tend to have behavior issues in class, and the reason is obvious. Generally speaking, it is hard to sit in a chair and do something you don’t want to do. Over the years, I have found different strategies that work for different kids, but the fundamental truth is this: if someone doesn’t want to do something, no amount of coaxing will get them to do it, whatever it may be. To be successful, that person needs to want to work for it.

I need to figure out how to best motivate my daughter to stay in a seat and do a task. I’m happy to have her do some task for a minute and run around dancing to “Baby Shark” for the next five, but I can’t seem to get her to understand the compromise. Instead, she vigorously shakes her head no (which is a HUGE improvement, because before she didn’t communicate no in any form) and tries evasive strategies to avoid whatever it is I want her to do.

The silver lining right now is for all of her troubles with communication, fine motor skills, and compulsive behaviors like mouthing and climbing, Maggie sure knows how to solve a problem if that’s what she wants to do. Child safety maneuvers are puzzles to her and if she’s motivated to get out of something, she’ll figure out a way.

My problem is figuring out how to motivate her to solve my problem. I can only hope that time, patience, perseverance, and consistently putting her bottom on the chair will result in her catching up to other kids her age. I can only hope and do my part to get her to all of her appointments and reinforce skills at home.


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