There are a few things that I have to share before I get to the meat of this post:

My child read this entire post and gave me permission to share this publicly.
I am normally a very private person when it comes to my personal and family life (especially anything involving my children), which makes this a very vulnerable post.
I feel very passionate about this topic, so this is a lengthy post. But, if it can open one person’s eyes and make even one child feel validated, then it was worth all the words. :)

A WILD RIDE

Last week my 15 year old son built a roller coaster in our backyard, and I couldn’t help but marvel in its engineering excellence, the thought and processing that was involved to make sure the seat stayed on the the track, and the excitement that he had in sharing it with neighborhood kids so that they could have their turn in the fun.

And then the thoughts of the hurdles my son has had to jump to try to fit into an educational and social model that was designed for people who are different from him in many ways, people who easily fit into the “do what I say, learn only what I teach, and regurgitate in a way that I expect it” model creeped in. The irony of the push to keep children in a specific box to fit the “norm” when it is clear that progress and ingenuity flourish only when we think outside the box was not lost on me.

My son riding the roller coaster that he built last week.

You see, my son (and honestly the vast majority of my immediate and extended family) is neurodivergent. I will not get into the nitty gritty details of specific diagnoses because that is his story to tell. What I will say is that he has never fit the typical model well. From the time he was born my husband and I knew that he lived in the world in a way that was different from what the experts said was “typical.” We would read excerpts from a popular baby development book and throw out the question: whose baby does that because ours certainly doesn’t. I would attend group events with other parents and toddlers and notice that my child participated in a very different way from the other children.

When my son was in preschool he would spend hours digging on the sandy playground, creating tunnels with pipes from one part of the playground to the other. When other kids would jump right into a play scenario as the mood caught them, my child would spend 30 minutes or more first planning and building something to create the scene that he had in his mind before ever engaging in the expected play dynamic. (And he still does this to this day.) He has always made sense of the world around him by recreating things he observed in his environment using random parts from around our house. The joy and excitement that he would exude as a toddler and preschooler having the freedom to experience his world through free form creative mediums was palpable.

And then he started kindergarten. He went to a charter school whose mission was to teach to the whole child. They prided themselves on individuality and a multisensory educational model. He attended this school for two years, and while kindergarten was “ok,” first grade was a completely different story. He started to show increased anxiety, was refusing to finish assigned work, and was not learning to read as quickly as expected.

The school’s intentions were in the right place. However, it still missed the mark in many ways. (And, I do not fault the school entirely for that. It was a public school that was still required to adhere to specific state standards that are often based on standardized norms instead of individual needs. But more on that later…)

Six months into my child’s first grade year his teacher started our parent-teacher conference with, “Now we have to think about retention.” I had been working as a speech-language pathologist at the school for almost two years by this point, spoke to his teacher face to face at least once per week, and this was the very first time I was ever informed that she thought he would have to repeat a grade. And her reasoning was that his reading was not progressing as it should have been. (Another side note…I had been asking for him to receive reading intervention since the very start of the school year, and was pushed off because they had to go through all the levels of RTI first before they could ever consider evaluating him.) All I remember from that conference were the things that his teacher pointed out that he was not doing “typically” and how that would impact him from that moment forward in his educational career.

Recognizing that my child was miserable at school paired with our desire to honor who he was and not who others wanted him to be, my husband and I started our search for different educational options. Because the school had refused to evaluate him by this point, and we knew that the clock was ticking as we approached the end of the year, we had him evaluated with a well known local private educational psychologist. This evaluation was eye opening, not because we learned anything about our child that we didn’t already know, but because she had to see him SIX times to complete the evaluation, stating that he was a confusing mix of peaks and valleys, and she couldn’t figure him out. Even when the evaluation was complete, she handed us the final report and said, “this is the best I could do. I am not sure if this is even accurate.” She also said something that has stuck with me for the past seven years: “Now you need to decide if you want to change him to fit into the box or change the box that he is in.” In that one statement she clearly and succinctly explained how the system works, and the ball was now in our court to decide whether we wanted to continue playing the game of trying to conform to an outdated confining system.

For us it was a no-brainer: we always saw the beauty and strength in our son’s individuality. We knew without a shadow of a doubt that he was more than what the standard educational model saw. He was exactly who he was supposed to be, and trying to push him into a box that ignored his unique talents would crush his spirit and be a detriment to him and the world. This was (and still is) a child with BIG ideas, visions that can change the world, and in no way were we open to minimizing that just so that he could fit into a model that is based on what other people had deemed valuable. So we moved him to a different school, one that embraced who he was and loved him and supported him simply for being him.

NAVIGATING THE TWISTS AND TURNS

Watching my son and the other children on the ride that my son created in our backyard made me think of how life is like roller coasters. It is a series of wild rides full of twists and turns, slow climbs uphill, unexpected drops, fear, and excitement. Each moment of the journey can feel like a never ending adventure in and of itself, and then that moment passes. We can look back and remember the fear we felt before embarking on the adventure or while being in the moment. Sometimes we look back and think that we never want to get on that specific ride again. Or maybe we look back and think that the fear was unfounded because while the ride was wild, we realized that the overall experience was empowering or, dare I say, maybe even a little enjoyable.

And we are left with choices on which rides we are willing to embark on and which ones will we intentionally walk by without second thought. Which ones will we consider for a moment, perhaps even step on, only to reach for the emergency brake and jump off as fast as we can? Which ones will we endure for their entirety while looking back and thinking If I knew then what I know now, I would have foregone that ride. And, which ones will we ride with enthusiasm and joy, looking back and knowing deep within us that they propelled us and our children forward to a place that opened up an entire new amusement park to embrace?

You might be wondering how this relates to why we must rethink how we determine therapeutic and educational goals for our children. I would argue that the current model of using standardized assessments to determine what children should be doing at any specific point in their development is still used simply because it 1) has been done for so long, and it can be scary or weird to try something different and 2) because it gives educational and therapeutic systems an easy and clear way to “prove” that their methods work simply because scores will change over time. But, at what expense are we doing this?

*Photo by* *Jessica Lewis* on *Unsplash*

Standardized and normative assessments are designed intentionally to hone in on a specific skillset. They measure how a child is performing compared to a data set of same aged peers in one or a very limited number of specific skills. And so often goals are established in an attempt to build these skills, and therapists, teachers, and even parents are overjoyed as they see the children’s scores improving and these very limited skills developing. However, human nature is designed in such a way that when we focus on any one or few specific things, we easily and unintentionally miss the many other things that are occurring simultaneously that may or may not be related to the skill or goal being addressed. Do we have a right to limit a child’s potential in the areas they were naturally wired to shine in simply to meet goals established to be important by an arbitrary test or system?

ON THE TRACKS TO INDEPENDENCE

Proponents of the familiar system would argue that focusing on these goals will help a child to function more independently in society, but if we really think about it…how does a therapist’s or educator’s choosing goals for a child’s life INCREASE that child’s autonomy? What does it mean for a child to be independent? Is it possible that we have focused on independence from too narrow of a lens? What if we broadened our view a bit?

Let’s go back to my own son for a moment. He is now a teenager and is getting ready to enter high school. Because the school that he had been attending since second grade only goes through eighth grade we had to find a new setting for him for the upcoming year. For the past several years my husband, son, and I assumed that he would likely attend a local public magnet school that is based on a nontraditional educational philosophy. We did everything we were supposed to do for him to attend this school: attended an open house, completed the school’s application, submitted the application for the district’s magnet lottery, had his teachers write letters of recommendation, and completed the virtual family interview.

Now the full story of how this all played out is too long to share here, but in a nutshell the final result was that my son was marked ineligible to attend the school. I reached out to several people attempting to get a reason why he was deemed ineligible, and it took several months of waiting and contacting the superintendent of this school’s learning community to get an answer. Their reason? During my child’s interview he was asked how he organizes his home time to complete homework, and his response was that he doesn’t like to do homework and doesn’t do much of it. And from that ONE answer to that ONE question they decided that he was not independent enough for the school. (I will say that because of my bringing my son’s experience to their attention, they realized that their application process was seriously flawed, and they eventually did offer him a spot at the school. However, we opted out of that choice after what had happened.)

Now let’s think about the criteria they used to determine whether he was independent enough. Their idea of independence was that he would learn what they wanted him to learn and do the work they wanted him to do both on their time (i.e., school hours) and his time (i.e., at home). In their narrow view of independence, they believed that a child could only be successful in their model if that child did what was expected of him by others who decided what was important. And this was a nontraditional school whose philosophy was literally founded on the principles of individual development. If this happened at a school like this, just imagine what occurs at more traditional schools. Are they REALLY fostering independence? Is true independence REALLY the goal? Or is it the ability to do what the system deems important with minimal support?

*One of the many woodworking projects my son has made*

What if we expanded our definition of what it means to be independent and successful, even in an educational setting? You might be amazed at the roller coaster that my child built (as I am), but what I haven’t shared is that he also owns his own woodworking business and takes responsibility for initiating and completing the projects that his customers order. He is the same child who at nine years old figured out how to build a power plant out of popsicle sticks, wires, and a small motor to add power to my daughter’s dollhouse. He can clearly communicate to me when he feels overwhelmed and needs a break. He works part time at my husband’s company and is responsible for clocking in and out of work to keep track of his hours. He knows how to do laundry and is often my go-to handyperson at our house when things need fixing. He recently adjusted some doors at his grandmother’s home to make it more accessible for her post-surgery.

Yet, his independence was questioned because he stated that he does not do homework. Was this really an indication of true independence? And, is it possible that our sights are set on the wrong, narrow minded goals?

CREATING A NEW RIDE

You might be wondering where we go from here. If creating goals based on standardized and typical behaviors isn’t the best way, then what can we do?

Therapeutic and educational interventions should always center nervous system regulation paired with self-determination.

You see, almost all traditional therapy and education focus entirely on behavior. The goals outline what behavior is expected based on societal, developmental, and educational norms, and progress is measured by whether that particular behavior has either increased or decreased. With these goals in the forefront of the therapist’s, educator’s, or parent’s mind, the intervention often focuses on having the child practice the new behavior to make it a habit. But, that is not only inefficient, it doesn’t make any sense from a neurobiological standpoint and often ignores personal autonomy.

For learning to happen, the brain needs to feel safe. And a feeling of safety comes with a regulated nervous system and autonomy. If a child’s brain feels threatened (whether the threat is a real threat or a perceived threat), then the more reflexive parts of the brain take the wheel, and the thinking parts of the brain are moved to the back burner. It is virtually impossible for a child (or adult) to learn and retain a new skill when in a stressed state. Additionally, when a child’s personal goals, preferences, strengths, and talents are pushed to the wayside, and a therapist’s or educator’s ideas of what is important become the focus, the child not only feels threatened, their self worth is diminished. This alone can dysregulate a nervous system.

Therefore, as therapists and educators, instead of analyzing if a child is performing a specific skill correctly, we must prioritize recognizing whether the child feels safe, regulated, and in control first and foremost. We must approach all interactions with the children we support from our own regulated state. Rather than spending time with a child keeping tally of how frequently they perform a specific behavior, our energy should be put toward noticing how we can alter the environment and our own presence to help a child feel safer so that development can happen more naturally. It is our responsibility to recognize the signs of dysregulation and to lead with the notion that children are inherently wired for curiosity, learning, and growth. It is up to us to remember that when a child demonstrates a behavior that seems to negate that notion they are letting us know that their nervous system is dysregulated, and we must help bring them back to center, not judge their performance.

Of course goals are an important part of the therapeutic process, and it is time that we do a loop-the-loop, and flip them on their head. When establishing goals, put the old “must haves” to the back of your mind, and focus on following the child’s lead. What matters most to the child? Where do the child’s strengths lie? In lieu of putting an emphasis on what the child cannot yet do that we believe is essential for proper development, consider the child’s unique gifts that are often out-of-the-box talents that our world needs. How can you foster those? Honoring those talents as important and interesting helps the child to feel seen and worthy. And guess what happens when people feel seen and worthy??? They head on the path to nervous system regulation and inherent growth. .

Only when a child feels safe and is met with openness and compassion and trust in their innate knowing of what is best for them can the true magic happen.