It’s past midnight and “Amanda”can’t fall asleep. She’s focused on her meeting the next morning at the school where her son is struggling in a program not suited to his unique needs. As she mentally rehearses her appeal for better support for him, she’s also bracing herself for the response she expects: polite “no’s” and placating looks from those around the table. She feels as if she is going to trial, facing a tribunal that she reluctantly trusts to protect her child.
One of the most difficult parts of my job as a clinical psychologist is witnessing how parents like Amanda are treated by the organizations and systems that are supposed to help them. Insurance companies deny payment even after parents have submitted the necessary paperwork—three times. School administrators suggest behind closed doors that parents are asking for too much, or being too anxious, or are in denial.
I have been on both sides of that closed door, as a consultant to both schools and to parents. What I hear is often troubling.
I don’t doubt that my educator colleagues have good intentions or care deeply about the children in their care. And of course, many school districts and IEP teams across the country value parents as equal partners on their child’s team. However, in my experience, this doesn’t appear to be the norm.
Unfortunately, our educational systems haven’t caught up with the wisdom of relational neuroscience, which has come to the public’s attention over the past two decades. Children’s brains develop best in the context of solid, trusting relationships with parents and caregivers. And since relationships build brains, we must value parents as the most profound influence in their child’s life. That doesn’t necessarily mean agreeing with everything a parent says or granting all they request. It’s more fundamental: parents need to be respected and heard, especially when it comes to their child’s emotional health.
Too many educators view parents as people to be managed, not as individuals struggling in their roles as protectors and advocates for children with additional needs. We need to understand that when a parent worries that a team doesn’t have her child’s best interests in mind, it causes him or her needless suffering. I believe that one reason parents of children with special needs experience such high rates of stress and anxiety is that they are forced to fight so many systems, including the educational system.
Colleagues often speak about parents in front of me because they assume that I agree that the parents are miscalculating their own child’s needs. They may mean to be supportive, but their attitudes reflect an outdated medical model that focuses on labels and often sees parents as either coddling their child, or being in denial about the severity of a child’s challenges.
My belief is that parents know their children best. Where some see denial, I see parents holding on to hope and not accepting that a label means a specific outcome for their child. I see an innate, protective, and heroic instinct to ensure that one’s child thrives and to protect one’s child from harm. And in my decades of experience, they are usually correct about what their child needs.
So if you’re a parent, don’t lose hope. There are many professionals out there who believe in you and understand the pressures you face. Here are a few things to keep in mind:
* Find your seat at the table as the expert on your child’s emotional regulation, which is essential to his or her ability to learn and study. You may not be an educator or a speech therapist,but you are the expert who knows whether your child is feeling safe. This matters. A child’s perception of emotional safety at school is the bedrock of his ability to learn. Understand that viewing parents as partners may not be a part of the culture of the education system you are a part of, so be patient yet visible.
*Use brain science and the science of psychological resilience in your child’s favor. A team will have a hard time arguing about a child’s need for supportive, engaged teachers and individualized accommodations when you show them the brain science of safety in relationships.
*Stay strong, and know that you have a perspective like no one else’s. Do things to protect yourself from the stress of standing up for your child. Research shows that parents of children with additional needs benefit from exercise, mindfulness programs, and other self-care activities.
*Finally, know you are not alone. Join the leagues of parents finding support through social media and programs designed for collaboration such as Lives in the Balance, and the Profectum Foundation’s free resources for parents about how to build a strong team for your child.
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