There is a particular kind of exhaustion that comes from constantly having to explain why your child needs something that, to you, seems incredibly obvious.
It is not always the big things. Sometimes it is the small things. The things that seem like they should be easy. The things that should not require multiple emails, phone calls, explanations, policy reviews, meetings, and follow ups. And yet somehow, they become another battle.
Lately, that battle has been about something as simple as monitoring Kay’s continuous glucose monitor while she is at school.
Kay has Type 1 diabetes. She wears a Dexcom G7 that continuously monitors her glucose levels and can alert us when her blood sugar is changing. Because Kay is five, has additional developmental needs, and does not recognize or communicate when her blood sugar is dropping, that information is incredibly important.
This is not about expecting someone to stare at a screen all day. It is about making sure the adults responsible for her during the school day have access to information that can tell them when something is changing, sometimes before Kay is even showing obvious symptoms. We know this system works because we have seen it happen.
Just recently, Kay’s blood sugar was in the 200s and began dropping rapidly. Within an hour Kay’s CGM showed 92 with double down arrows, meaning she was not simply sitting at 92. She was dropping quickly. I called because I could see what was happening in real time.
Had we waited until she actually reached a number considered low, we would have been waiting until the problem had already progressed.
That is the part that can be difficult for people to understand. Diabetes is not always about a single number. The direction matters. The rate of change matters. The context matters. When you are talking about a young child who may not recognize that something is wrong, those things matter even more.
So as a parent, I find myself asking, why is advocating for access to that information so difficult? Why does asking for a device to be available in the health office so that staff can see her glucose information feel like another uphill battle?
Why do I have to keep explaining that I am not asking the school to replace her medical care? I am asking them to have access to information that can help them recognize when something is changing and Kay may need attention.
Honestly, I am tired of feeling like I am asking for something unreasonable when what I am actually asking for is another layer of safety for my child.
This is the part of parenting a child with disabilities and complex medical needs that people do not always see. They see the appointments. They see the diagnoses. They see the equipment. They might see the advocacy posts or the occasional story about something we have had to fight for.
What they do not see is how often it happens behind the scenes.
There is always something. A plan that needs clarification. A staff member who needs training. A device someone does not understand. A policy that needs to be interpreted. A phone call that does not go the way you hoped. An email that needs to be followed up on. Another explanation of why your child’s needs are not exactly the same as another child’s needs.
And sometimes, it is simply having to explain again that equal treatment does not always mean treating every child exactly the same.
Sometimes your child needs something different because your child has different needs. That is okay. In fact, that is what individualized support is supposed to be about.
I do not advocate because I enjoy being “that parent.” I do not send emails because I want to make someone’s day harder. I do not ask questions because I assume everyone is incompetent. I advocate because I know my child better than anyone else does.
I know what her normal looks like. I know what her blood sugar patterns look like. I know what happens when she starts dropping quickly. I know that Kay may not hear her phone and won’t walk up to an adult and say, “My blood sugar is dropping.” She may be focused on something else. She may not recognize the feeling. She may not understand that she needs help.
I also know that when you are responsible for a child like Kay, sometimes having more information is not an inconvenience. It is a safety net. That is ultimately what I am trying to build around her. Safety nets.
Not because I expect something terrible to happen, but because if something does happen, I want as many people as possible to have the information they need to respond. That is what I wish people understood about parents who advocate relentlessly for their children.
We are not trying to make everyone’s lives difficult. We are trying to make our children’s lives possible.
We want them to go to school. We want them to participate. We want them to dance, play, learn, make friends, get distracted during recess, laugh with their classmates, and come home exhausted from a full day of being a kid.
But we also have to make sure they can safely do all of those things.
So yes, sometimes we are going to ask questions. Sometimes we are going to push back. Sometimes we are going to send another email. Sometimes we are going to say, “I am sorry, but I do not understand why this is a problem.”
Sometimes we are going to keep advocating even when we are exhausted. Because our children do not get to stop needing us just because we are tired.
I wish it did not always feel like an uphill battle. I wish parents did not have to become experts in policies, procedures, accommodations, medical devices, disability rights, school systems, and advocacy simply because their child needs something a little different.
I wish we could trust that when we say, “This is what my child needs to be safe,” the immediate response would be, “Okay. Let’s figure out how we can make that happen.” Maybe someday it will be.
Until then, I will keep showing up. I will keep asking questions. I will keep pushing when something does not make sense. I will keep learning. I will keep speaking up.
Because Kay deserves someone in her corner who will never stop making sure her needs are heard.
At the end of the day, I am not fighting against the school.
I am advocating for Kay. And there is a difference.