Independence

When Gracie was little, we couldn’t imagine how she would manage school without someone right by her side helping her get through the days. We ended up accepting a placement for her at the preschool in our district with the most support—a 4-1 adult to child ratio. The preschool is the only inclusive part of a non-inclusive school in the district, a K-12 school for children with disabilities requiring intensive support. The preschool offers class sizes of 20 children, 10 of whom are on IEPs and 10 of whom are “typical” kids.

Her preschool was fabulous, and the staff quickly recognized how special Gracie is. They loved her for being unique, spunky, adaptable, and brilliant. And they also set her up for success at our neighborhood school by working to give her all the supports she needed, including a list of accommodations a mile long and a one-on-one helper or ISP. When the head preschool teacher was advocating for Grace to get an ISP, she warned us that the district does not like to provide ISPs for children because they do not want to take away from the child’s independence by having a support person right there. The district does not want to teach the child helplessness. The preschool teacher assured us that in Grace’s case the ISP would be necessary for safety reasons, and quelled our fears about possibly sending our amazing child to a big unfamiliar school without the necessary supports to get her through the day.

Gracie’s first ISP was absolutely amazing. Miss K. was Gracie’s helper throughout kindergarten and first grade, and will be a lifelong family friend. However, she moved out of state, and last year we had to deal with a new helper. Gracie’s 2nd Grade helper had a strong personality and was not a good fit for our family. We worked with the school to find a new helper for this year, and now Grace has Miss T.

Grace is in 3rd Grade now, and she’s becoming much more independent. When she started kindergarten, she used her walker most of the time, she needed help on the playground, she frequently tripped over other kids, and we did not know how much help she would need with academic work. By 1st Grade, her ISP was not allowed to help her academically because Gracie was at grade level with everything except reading. That has been a part of her IEP every year since—Grace does not require academic support and her ISP is only allowed to help her with things that she can’t see clearly.

Grace’s home physical therapist has also been working with Grace at our local playground, and she no longer needs support or assistance to use any of the playground apparatus. She can even do the monkey bars, much to my dismay (I have visions of her falling and breaking bones). She does not need help at school at recess. And today, for the first time, I sent her to school without her walker. She doesn’t really need it for walking anymore; she only uses it at school because the school is huge and she tends to turn her ankles when she gets tired. But she’s older now, and stronger, and she doesn’t really need the walker. Grace and I agreed to only send it on gym days.

Grace doesn’t really need an ISP anymore. And now, the words of her preschool teacher ring true—Grace is learning helplessness because there is always someone there to help her, even when she doesn’t really need it. This weekend, she threw two epic tantrums because I wouldn’t help her. She wanted to go outside and I didn’t really want her to—it was cold and she has a lot of wounds on her fingers that I didn’t want to get dirty—so I refused to help her put her socks and shoes on. After several minutes of screaming and crying, she eventually tried to do it herself and immediately succeeded. She got to go outside anyway; I wasn’t going to take that from her after she worked so hard for it. Later, it was time to do homework. She had some multiplication puzzles to work out. I re-wrote the numbers that were hard to see in Sharpie and explained how the puzzles worked (which she probably already knew, since she had them on her homework last week too). She would not complete the puzzles. “But MOOOMMMM! I need help! I need you to tell me what to multiply and where the answer goes.” Again, I refused to help her—this time, only because I knew she could do it—and again, she was able to do it herself as soon as she stopped tantruming.

We also have been having trouble getting Grace to stop biting her fingers. I believe this is related to the learned helplessness. Because someone else is always there to be responsible for Grace’s fingers, she has stopped trying to care for her own body. She has no incentive to be responsible for herself. I believe that if we take away some of the help she’s getting in other areas, we may encourage Grace to become responsible for herself—after all, it feels good to accomplish things, and the more hard-earned they are, the more the sense of accomplishment. I do believe she is old enough and smart enough to stop biting her fingers, no matter how ingrained the habit is.

When Grace was a baby, we used to put her in elbow restraints called “no-nos” to keep her from biting her fingers. She could not get her fingers to her mouth, so she could not bite them. However, she also couldn’t get her pacifier to her mouth with the no-nos on. But that didn’t stop her. She would take her pacifier, put it directly in front of her on the floor, then move her arms straight out to the sides and bend at the waist, grabbing the pacifier with her mouth. She used to be the queen of adaptability.

We will get there again. In the words of Spiderman’s uncle, with great independence comes great adaptability. Or something like that.

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