So, who had “less than three months” in the pool as to when I would end up in the principal’s office at Jewel’s middle school? You win!
I’ve been in dozens of meetings with school officials over the years advocating for my autistic daughter. Some of these have been a breeze, one I remember storming out of in anger; most do not include tears.
The ideal school meetings are ones in which everyone agrees on Jewel’s areas of need, we see eye to eye when it comes to the accommodations and modifications that are needed to achieve clear and measurable goals, and small areas of conflict are solved with mutual respect and trust.
What did I do this time to prompt the call to the principal’s office? I emailed Jewel’s math teacher and special-ed program director to say Jewel had talked nonstop from school pickup to bedtime, falling asleep in tears, about her math teacher’s “bad mood” and the kids all agreeing and that she yells and “needs a spa day.” I said in the email that I know I only get Jewel’s side of things, and the sensory profile we provided to all teachers addresses this very issue, stating ” … Ask her to tell you her story. It will be her version, which might not be reality, but she needs to get it out. She often self-corrects when she is totally back to receptive mode.”
My email did not go over well, to say the least. The teacher looped in the principal and assistant principal in her response. She took umbrage, saying she isn’t in a bad mood and doesn’t yell. She also said in her email: “There seems to be a theme here when [Jewel] doesn’t get her way. She automatically sees it as she is being victimized, when she isn’t.”
The intent of my original email was obviously lost. It wasn’t about bad moods and yelling and spa days, it was about Jewel’s fretting for hours about math class and falling asleep crying. I was reporting exactly what Jewel said to me as her advocate, not because I thought it was reality, but because it is Jewel’s reality, and it needs to be addressed.
That said, the response to my email revealed something troubling … the teacher’s untrue, negative mind-set. Jewel is nonneurotypical, so this isn’t about neurotypical willfulness or playing the victim; teachers and others at the school need to understand, acknowledge and accept this. Her executive functioning challenges, difficulty reading context, emotional regulation issues and lack of flexible thinking make any such battle of wills over who is “getting their way” counterproductive. Jewel’s rigidity means the teacher cannot be rigid, it only causes friction when two “rocks” are rubbed together. Teachers can inspire Jewel, or they can be the ones she survives, based on their willingness to understand her perspective.
In discussing all this, someone from the school referred to me as a “mama bear.” It isn’t the first time and won’t be the last I get called that. I am Jewel’s voice until she can advocate on her own, and I take that seriously, educating myself, learning from the past, trying to see all points of view, and most important, discussing with Jewel what’s working and what isn’t to determine the whys and what can be done. There’s a reason that parents are part of the IEP team; it’s called institutional memory.
So, how did the meeting the principal’s office go?
When I tried to make the case that Jewel is responding to negative, rigid teaching, I was told, well, life is like that, she needs to be exposed to all types of people.
When the emphasis is put on her alone having to change, I get frustrated. Sometimes I lash out. This time, taking a cue from Jewel’s own reaction, Mama Bear cried, with the realization that again the onus was on Jewel and Jewel alone to adapt, instead of a shared responsibility.
It isn’t about accommodations, it’s about approach. And by basically saying Jewel has to get used to the fact there are mean people in the world, it gives teachers a pass. We ask Jewel to adapt time and again. Her IEP calls for teachers to “place demands on hold.” Logic tells me we are the adults in the room and have to adapt and accept her differences. I am not a patient person, but I’ve had to learn to be more patient because of Jewel. Teachers and others who come in daily contact with her need to fully understand there is too much and too narrowed focus on the outside, and that we always must look at what is happening inside Jewel. Her behavior is a symptom of the problem, not the problem itself.
These issues weren’t fully resolved. We left cordially, agreeing we all had to work together. But I failed in the advocacy department because I let my emotions overtake my responsibilities to Jewel.
As an advocating parent, I go into these meetings with notes, copies of Jewel’s most IEPs and any other supporting documents, a recording device and a clear sense of what Jewel needs to succeed. I also go in with an open mind and knowledge of what is up for compromise and what the absolutes are. Even with all that preparation, sometimes I fall short of my goal.
And so I learn from this, and forge ahead, and promise to do better by her the next time. I want to be the Mama Bear running through the ocean with her cub on her back, protective and free and joyful, not the one crying oceans of tears with her in frustration.
And I deal with it all by keeping my sense of humor. Jewel was quick to point out something about this latest episode. “Mom, you got called to the principal’s office before I did at middle school!” Thanks, dear, for the reminder.