There is a particular kind of exhaustion that comes with parenting a child whose needs are not easily accommodated by the world around her. It is the exhaustion of explaining things that should not need explaining, documenting things you wish weren't happening, preparing for meetings you never wanted to have, and learning systems you never intended to become an expert in. It is the exhaustion of knowing that the outcome of a conversation might determine whether your child is safe, supported, included, or understood. And lately, I have been thinking about how much harder all of that becomes when the people you are asking to help begin to see you as the problem.
For reasons I am not ready to share publicly, Eliza stopped feeling safe at school. Eventually, what began as concerns about her experience became something we could no longer simply work around or hope would improve. She ended up missing an entire month of school. A month of friendships, learning, new experiences, and the ordinary moments that make up childhood. No parent wants their child to reach a point where school no longer feels like a safe place to be. And no parent should have to navigate the complicated emotions of knowing that keeping their child home may be necessary while simultaneously worrying about everything that child is missing.
The hardest part has been watching her struggle. There is a particular heartbreak in seeing your child in pain, knowing something is wrong, and feeling powerless to make it better. You watch the changes in her, the frustration, the emotional toll, and the ways an environment that should be supporting her is instead becoming something she struggles to navigate. You bring those concerns to the people who have the ability to help, only to be told, in one way or another, that you need to wait. Wait until there is more evidence. Wait until things get worse. Wait until the situation becomes serious enough to warrant a change. But what are parents supposed to do with that? Are we supposed to stand by and watch our children deteriorate before someone decides their suffering is enough to act?
We have raised concerns about Eliza's placement, her access to academics, her opportunities to participate with peers, and whether the supports in place are actually meeting her needs. We have asked questions, requested documentation, sought explanations, and continued to push for a plan that recognizes Eliza as an individual rather than trying to fit her into whatever program happens to be available. We have not done these things because we enjoy conflict or believe we have all the answers. We know how difficult special education is. We know the staffing shortages, the limited resources, and the enormous responsibility carried by the people working in these buildings. We have spent years appreciating incredible teachers, therapists, aides, and school staff who have loved Eliza, believed in her, and worked hard to make school a place where she could belong.
But understanding the challenges within a system does not mean we can ignore what is happening to our child within it.
And that is the part I wish more people understood. Eliza cannot always come home and explain what happened during her school day. She cannot always tell us when she felt left out, when something frightened her, or when an opportunity was taken away. Sometimes we piece things together through behaviors, changes in her emotional regulation, things she says days later, or information we have to repeatedly request. We have to pay attention to the things that might otherwise go unnoticed. We have to ask the questions that might make other people uncomfortable because not asking them could mean missing something important.
So when advocacy is met with frustration, when a parent is characterized as exhausting, or when the persistence required to protect a child becomes an inconvenience to the people making decisions, it hurts in a way that is difficult to explain.
Because what does it mean to be exhausting in this context? Is it exhausting to ask why your child is not receiving the education outlined in her plan? Is it exhausting to question a placement that appears to be causing more harm than progress? Is it exhausting to ask for documentation, clarification, and accountability? Perhaps it is. Advocacy takes time. It requires meetings, emails, research, follow-up, and difficult conversations. It asks people to revisit decisions they may have already made. It is not always convenient, and it is rarely quiet.
But I wonder how often we consider the exhaustion on the other side of the table. The parent who goes home after a meeting and replays every conversation, wondering whether they said enough or whether they should have pushed harder. The parent who spends evenings reading regulations, researching educational approaches, and writing emails instead of doing the ordinary things families should be able to do. The parent who has to compartmentalize their fear and frustration so their child doesn't have to carry it too. The parent who is simultaneously trying to preserve their child's childhood while fighting to ensure that childhood includes the opportunities other children receive without anyone having to ask.
We are tired, too. So very tired.
And yet, we keep showing up. Not because we want to be difficult, but because the alternative is to become comfortable with circumstances we know are not right for our child. Eliza deserves an education that challenges her, relationships that nurture her, opportunities that allow her to participate, and a community that sees her potential rather than defining her by her limitations. She deserves to be a middle school student, with all the ordinary experiences, friendships, discoveries, and possibilities that should come with that season of life.
I think there is something particularly painful about realizing that the very qualities that make us effective advocates can be the qualities that make us unwelcome in the rooms where decisions are made. We are persistent because we have to be. We are detailed because details matter. We ask follow-up questions because the first answer doesn't always address the concern. We document because memories differ and conversations can be interpreted differently later. We push because sometimes the only way forward is to refuse to let a difficult situation become the accepted norm.
None of this means we don't make mistakes. We are human. We get emotional. We get frustrated. But our imperfections should not diminish the legitimacy of our concerns, and our persistence should not become a reason to dismiss them.
I keep thinking about the little girl who graduated from elementary school just a few months ago. The girl who had sweet classmates, teachers who knew her, and staff members who celebrated her progress. The girl who deserves to walk into middle school and be welcomed for who she is, not treated as a problem to be managed. I don't want her middle school years to be defined by meetings, complaints, paperwork, and conflict. I want to worry about homework, school pictures, friendships, electives, and what she wants to wear on the first day of school. I want to celebrate her milestones without simultaneously wondering whether the environment around her is meeting her needs.
We aren't asking for a perfect school or a perfect system. We are asking people to recognize that Eliza is a child with a right to an education, a right to safety, a right to dignity, and a right to belong. And we are asking that her pain be taken seriously before it gets worse, not after. If fighting for those things makes us exhausting, then I suppose we will have to learn to live with that description.
I hope Eliza grows up knowing that long before she could always find the words to fight for herself, there were people who were willing to keep showing up and fighting alongside her. Not because we wanted to be exhausting, but because we are her parents. And she is worth it.
