If You Look for the Magic, You’ll Find It

Artwork by Siski Kalla from the Children’s book, Starlight written by Becky Hemsley

Today, I woke up with a heaviness in my heart that I couldn’t quite ignore. 

I dragged myself from my bed, took a few deep breaths, and made my way into the kitchen. I overheard Cam scripting animatedly in his bedroom and knocked on his door, taking yet another long breath to center myself. When he gave me permission to enter, I excitedly proclaimed, “Last day of school” in my best impression of Nemo. He laughed and reminded me that after today he will be an 8th grader. 

Y’all… It was all I could do not to cry. And not the bittersweet, “time moves too quickly” kind of cry. But, the kind that erupts when you’re not sure how to proceed. I’ve spent 16 years working in the middle school environment, and practically everything about this stage of development is entertaining, inspiring, and hilarious. And yet, witnessing it from Cam’s experiences has nearly broken my heart.

Advocacy is arduous work. What you may see as “success” in many areas has been hard fought, not only by me as his fierce advocate but even more so by Cam. Each day, he willingly returns to a day-long adventure in an environment that is in opposition to his beautifully neurodivergent brain. It is an assault on his sensory experiences and uses up every bit of social battery that he can muster, often with little to no reciprocation from his neurotypical peers. This year was the first one where he was able to tell us that he feels lonely and wants real friendships. I know that’s hard to read and may make you uncomfortable or sad, but if I get to carry the weight of that every single day, then you can handle it for a mere moment.

Middle school is hard enough, with every single child trying on various personas and establishing themselves in the social hierarchy. These kids are a different breed than I was growing up, because social media IS their social landscape. Meanness and cruelty often follow kids home and into their cell phones, continuing their reindeer games throughout the night without realizing the damage that they can wreak on another human, because they don’t yet possess the emotional intelligence that would prevent this sort of harm. As a former school counselor, I witnessed this behavior every single day, and it was honestly a privilege to intervene and provide a learning experience that would disrupt it. 

All of this is quite elusive to Cam, because he seems to be unaware of the cruelty that can come at the hands of a “friend.” So far… But it’s coming. I know it is. And if I’m being honest, I’ve already witnessed the cruelty in stories that he’s recounted about what his classmates once thought was funny. A few years ago, he was writing Valentine’s cards, and his “r” was a bit messy, so the young lady (Mariah) scolded him repeatedly, saying that her name was not “Mafia.” He was laughing to himself that evening, and when I asked him what was so funny, he told me. The reason that he laughed so hard was because she had gathered all of her friends at recess to laugh about it, and he so wanted to be a part of that connection, that he laughed too. He, lacking an understanding of their context, laughed with them, and they thought that was even funnier. When he explained the whole story, he still did not realize that they were being unkind. But there, in the pit of my stomach, were the cold echoes of the cruelty and loneliness of my own youth. It’s a feeling I wouldn’t wish on anyone. 

And yet, Cam still longs for friendships, and they remain out of his reach. 

I hope that no one reading this ever has to fight for their child to feel truly included, and to experience a sense of belonging. Sadly, I know many of you will relate to this.

I often think that people who do not have children with disabilities must imagine that advocacy looks like a parent donning armor, sword, and shield and going to battle once a year at the annual IEP meeting. Gosh, I certainly wish it were so.

This advocacy is sometimes an everyday battle. Sometimes, it’s an investigation into proactive solutions; other times, it's learning so much about a given topic that you turn around one day and realize that you’ve become the expert in the room. And then the next thing comes along, and you dive in all over again.

Some days, it means calling out errors that are so egregious that harm has been done. Others, it’s pursuing innovative ways to support your child and then sharing that information with your team. Some days, it’s leaning into your team because you don’t have the cognitive or emotional bandwidth to master another topic in order to train your team or your entire family about it. This is why it’s vital that you build a team of all of the various stakeholders in your child’s life, because you cannot manage it all on your own. If where you are currently lacks the capacity to truly collaborate with you, I suggest you become familiar with the laws pertaining to IDEA and start flipping tables. If you still can’t make it happen, figure out where you can and if it’s at all possible, get the hell out of there. 

I know that for many of you, this is not a part of your reality, so it may not make sense. But the part that I need you to take away from this is that this level of advocacy is depleting. Caregiver burnout is a real threat to every parent advocate who is pushing through obstacles to fight for their child’s rights. It wreaks havoc on physical and emotional health, and it can destroy marriages because parents often have nothing left to give their partners after the day’s battles have faded into the sunset. It is the loneliest place I have ever dwelled, and if not for my own support system, I would not be okay.

And allow me to be clear: a lot of parents are NOT okay. Turning away when our situations make you uncomfortable or assuming everything is fine because we aren’t complaining is not a wise card to play. Check on your people. I’m truly grateful that I have many people to turn to, but many people do not. They need the compassion and grace of others who get it.

If not for the team that we’ve worked so diligently to form, I don’t know what we would have done or where we would be. This level of advocacy is unsustainable without the love and support of a team willing to lean in hard and learn how to do better. And, my God, we have that team! Looking back, it’s a tremendous source of pride to see how many former teachers and professionals saw the magic within Cam and helped him to shine. He’s a complicated learner, no doubt! There are so many people who are no longer supporting him professionally but who are still wholeheartedly committed to seeing him become his best self. And for that, I am eternally grateful. 

Today, Cameron will return home as an 8th grader. 

And then, my sword and shield will be laid down, and I’ll breathe a little more easily knowing that there’s a reprieve before the next time I must armor up. 

Until then, I want to take an intentional pause to express my gratitude and hopefully inspire others to take action. 

If you have a child with a disability, know that you’re not alone in the arena. Find others who “get it,” and who will support you when you find yourself face down.

If you are a provider for students with disabilities, whether you’re a counselor, teacher, speech therapist, occupational therapist, etc., make an intention to look for their magic. See them for who they are, and help them to amplify their light.

If you are a parent of a non-disabled child, please encourage them to be kind to all of their classmates because they are deserving of kindness and connection—never as a form of charity or “because it’s nice.” Teach them to truly include their disabled peers, because they will gain so much from a truly inclusive social circle. 

If you are a family member of a caregiver who has a child with a disability, support them with more than words. Ask them what books you can explore to learn more and what resources you would benefit from utilizing, but don’t add to their burnout by expecting them to translate everything they’ve learned into Cliff’s Notes for you. Show them that you’re invested in their experience, too.

And, last but not ever least... If you’re a part of #TeamCam, please know that I could never find the adequate words to express just how grateful I am for everything you’ve done to contribute to our success. 

Thank you for seeing the magic in Cam.

“Starlight” by Becky Hemsley
from Talking to the Wild: The bedtime stories we never knew we needed