I was in my ninth year as a parent at the school. Parent club president, chair of the auction, a constant volunteer, truly part of the fabric of the school. But for the first time, I found myself dreading arriving at school to pick up my kindergartner. I knew I would be met with sideways glances from other parents and tight-lipped reports from the teacher and his classmates about my child’s transgressions. You don’t know parent shaming until a 5-year-old sternly tells you that your child had a bad day.
Terms like “behavior problem” and “likely autistic” began to be tossed around.
Mine was the child who could not make it through a day without a meltdown, who refused to move on to the next task, who cried inconsolably when recess ended. All my professional knowledge as a social worker seemed to go completely out the window when it came to my own child. I would have advised any other parent to get curious instead of frustrated. I would have asked them to view the behavior as information rather than defiance. I had said those exact words to other families, more than once, and meant them.
But sitting in the pickup line, as the teacher made eye contact and nodded toward the “park and let’s talk” lane, none of that language was within reach. I felt embarrassed, frustrated, shamed and quite frankly angry. As insane as it sounds (and felt at the time), I was angry and frustrated with him for not making it through the day.
A sentence that changed me
By the time summer finally came, we were exhausted. We knew he would have to repeat kindergarten, but it was over for now. One day I was chatting with a dear friend about my growing concerns and what it might take for my son to successfully complete kindergarten at the school.
She patiently listened, then said, “Niki. Stop trying to fix him — he’s not broken! Most of the education system is one-size-fits-all, and that’s just not reality. He is amazing, creative, kind and imaginative. He is not broken; the system is.”
I’ve thought about that sentence a hundred times since — not just as his mom, but in every session I’ve had with a parent since. It is so much easier to offer another parent that grace than to offer it to yourself. My friend’s assessment marked the moment when I realized the typical path in the education system she described would not be ours. My child didn’t fit in that system.
There was grief with the realization. I understood that I’d be losing the ease and comfort of following the same education road as my older boys, and that was painful. My youngest child would not graduate from the same school as his brothers. I would leave my community and comfort zone, in search of support and options that were a better fit for him, rather than another normative box for him to squeeze into. All of that grief, frustration, anger and worry was very real.
Grief gives way to action
But hope eventually followed and with it new energy for action. We decided we must take teachers’ feedback and trust our own observations rather than guess at a label. We sought an evaluation with a neuropsychologist.
Even that road was tricky. We had to find someone who could work with our insurance. We had to sit out the doctor’s waiting list. I spent a lot of time working through the school district’s special education assessment process only to be told that my child was “not far enough behind” for intervention.
We kept pushing. If you are in that waiting-list purgatory right now, I want you to hear this from someone who has sat exactly where you’re sitting: struggling looks different in every child. Don’t let a school’s threshold be the only measure of whether your child needs support. Keep pushing, keep tracking what you’re observing at home and trust your gut.
Tips for the assessment waiting game
- Get on the waiting list with more than one neuropsychologist, and seek assessment through your school district at the same time. Both avenues take time to navigate and have waiting lists. There are groups that accept insurance for these services.
- Let yourself feel all the feelings. It is okay to be angry, embarrassed, frustrated. Statistics show that nearly 20% of the population is neurodiverse—you’re not alone. As soon as I began talking about the struggle we were navigating, others shared their stories and resources.
- Start focusing on your child’s strengths. Neurodiversity is the mother of many amazing inventions, creative works, and ideas. Our son’s ability to build and visually manipulate shapes in 3-D was (and still is) astounding. No, he couldn’t tell you what sound a “b” made, but he walked out of 1st grade one day with a 3-D rendering of the Space Needle made entirely from paper and tape. It included a movable elevator!
- Seek support early. Even before you have a clear diagnosis, there is support to be found! Platforms like Facebook will have groups where you will find community and information. Decoding Dyslexia WA was a game changer for me.
- If you don’t receive the diagnosis you expected, still use the available resources! You may be sure, in your heart of hearts, that your child will have an ADHD diagnosis, only to be told they don’t quite qualify. The same organizational tools and steps to improve executive function still work, diagnosed or not.
A child’s resilience
In time, answers came. And when we finally had them, my child’s and my experience began to shift. He has three different learning disabilities. It turned out that he needed glasses. Of course, he’d been a little testy! The more we learned, the more amazing our by-then-7-year-old boy became. Our understanding of him moved from “Why can’t you make it through a day?” to “How did you EVER make it through a day?!”
And it is that question which completely changed how I parent and how I work with kids and parents in my care.
Today that little boy who had me dreading kindergarten pickup is 14 years old and in 8th grade. While reading and writing will always be more difficult for him, he now reads at grade level and, more importantly, self-identifies as a “great reader.” He has discovered that using talk-to-text or typing makes writing more accessible to him. He attends a private school where the smaller class size has proven to be helpful. He uses accommodations through a 504 plan and is learning to self-advocate. Above all, he is happy, ambitious, funny, creative, and perhaps the most resilient person I’ve ever met.
What I know
So let me tell you something I know is true: Somewhere underneath so many “behavior problems” is a kid working harder than anyone realizes — and a parent who needs someone to say, gently but firmly: he is not broken.
