“The days are long, but the years are short” is a saying probably best reserved for those with grown children. My child is grown, although not yet a fully independent young adult. Even so, I can remember the late nights and early mornings, the colicky period, being spit up on, the tantrums that came out of nowhere, the child that refused to be put down or take a nap, my pleading for us both to rest for 5 to 10 minutes, or the myriad of times I was unable to finish a sentence, all the while desiring to have a “normal” conversation with any other adult.

If you were to think back on your own such experiences from early parenthood, imagine how you would handle that period in your life if it had lasted 25-50 percent longer, or more. Welcome to the world of neurodivergent (ND) parenting! It’s not that the parent of the ND child doesn’t want to celebrate and share in the achievements of your neurotypical (NT) child, they simply don’t want to do so at the expense of recognizing their own child’s successes. Once it becomes apparent that the ND child has a developmental delay, parents often find themselves left behind by their mainstream counterparts, as if continued association with the “other” child will somehow cause the NT child to experience a developmental delay themselves. Fortunately, developmental delays are not contagious! They are not the flu, pinkeye, Fifth Disease, or even headlice. They are purely neurological conditions.

Why is it, then, that so many behaviorally, emotionally and socially challenged children are left behind? Not just by NT children and their parents, but also by teachers, coaches, and, sadly, even healthcare professionals who are supposed to be there to help them?  Why are the challenges faced by ND children downplayed, disregarded and even scorned, while difficulties experienced by NT children in reading, writing and mathematics are approached more compassionately? Could it be that educators and healthcare professionals alike are simply not adequately trained to appropriately foster the development of ND children?  Could there be insufficient time to dedicate to helping ND children thrive?

Answers to these questions are not concealed within the depths of some mysterious vault. Rather, they involve compassion, lots of patience, dedicated time and, yes, financial resources. Finding an experienced pediatrician who is well-versed in both traditional and alternative treatment options is prudent, but finding one who also has personal experience with ND children is priceless! These practitioners have a breadth of knowledge, empathy and understanding that only personal experience brings. Sadly, it is an entirely different story inside our vast public/private educational machine which, despite varying levels of commitment to special accommodations, ultimately has exactly one solution for the ND child: fit the square peg in a round hole. As one elementary school principal told us regarding our own child, “we will make it fit.” Whether that “fit” was the best thing for our child, or not, was of secondary importance.

Faced with the seemingly impassive monolith of the educational-industrial complex, what are parents of ND children to do? First and foremost, arm yourself with knowledge. Visit the Individuals with Disabilities Education Act (IDEA) website. Gain an understanding of the laws and regulations specific to your state. Ascertain who at the school district level to contact for grievances or oversights at your local school. Seek out an advocate or special needs attorney to help guide and support you throughout your child’s educational ladder. One can easily feel overwhelmed by the process. As such, consider joining an in-person or online support group. These can be an invaluable resource for others who find themselves faced with similar challenges. If you are fortunate, you may locate networks in your local area, with members who have already navigated the process and may provide you with key insights.

It is also important to remember that “the squeaky wheel gets the grease.” Force the school into collaboration between you, your child, and the professionals (speech therapist, occupational therapist, psychologist, pediatrician, etc.) who interact with your child, especially if professional services are being paid for privately and are not school-district provided. You do have a say! Although many educators, on an individual basis, are no doubt genuinely invested in the welfare of the child, the assembly line must be kept rolling along. This means those educators are functioning in a system that is constantly at odds with their better motives, pushing them to seek the path of least resistance. All too often, when anything more than a superficial nod towards the needs of a ND child threatens to disrupt the assembly line, it creates the perfect environment for that child to be overlooked. In this vein, don’t settle for evasive comments such as, “You know I would if I could, but I can’t. I’m sorry.” Don’t allow the bar to be unnecessarily lowered – another tactic employed in pushing the path of least resistance – for your child. Be there as much as possible to advocate for your child. Find that one special person in the organization willing to go the extra mile, to help evaluate and decipher potential confounding factors that could be addressed to help all children, not just the ND ones. Don’t allow the school to gaslight you at Student Success Team (SST), 504 or Individualized Education Program (IEP) meetings. Sadly, this practice happens far more than one would expect.

Those blessed with a twice exceptional child – both intellectually gifted and having a disability, often face unique challenges. Some children are able to mask their disability (anxiety, autism spectrum disorder, sensory processing issue, etc.) to varying degrees, but at a significant cost to their social-emotional well-being. Many schools (K-12), have a difficult time providing an appropriate level of support while maintaining a challenging academic curriculum. When services offered are out of sync with the student’s needs, emotional dysregulation may result, manifesting as anxiety (or worsening of anxiety), lack of self-esteem, frustration, behavioral problems, etc. These students may benefit from cognitive behavioral therapy (CBT). However, although CBT may be mentioned in a gifted individualized education plan (GIEP) or 504 plan, the school, or district, may not have the resources to provide it. Furthermore, finding an affordable therapist may prove to be challenging, as more and more therapists appear to be opting out of health insurance plans altogether. So, where can one turn in such a situation? This may be where the assistance of a special needs advocate (typically for a fee), and/or online blogs and forums, together with the wealth of information, connections, and contacts they may provide, can start you on a productive path. This increases your ability to connect with others who are further along on the journey, and are willing to share their experience(s) with you. One such website, adayinourshoes.org, is run by Lisa Lightner, an IEP parent herself. She has a breadth of information on her site, and a corresponding forum for those seeking advice from other participants. She also offers online paid content in her “Don’t IEP Alone Academy,” for those seeking to “better understand and utilize [their] role as a parent/advocate.”

Another essential step in successfully maneuvering through the mighty educational complex is to not allow oneself, or educators, to focus solely on your child’s deficits. Rather to ensure that those areas needing support are balanced with your child’s strengths. Each ND child has their own personality, strengths, weaknesses, and idiosyncrasies. They are not identical square pegs needing to be forced into predetermined round holes. Therefore, each ND child’s educational program should be reflective of their uniqueness. Sadly, even though there is an “I” for individualized in IEP, it is amazing how standardized these plans often are. It is for this reason that some parents of ND children, especially twice-exceptional children, elect to not engage in a school’s 504/IEP process until absolutely necessary. Instead, they seek the appropriate services privately. Expensive? Yes. But sometimes, any scrimping and saving necessary to obtain them proves invaluable. 

If it takes a village to raise a child, it takes a determined, well-informed parent to trailblaze a path that not only leads their child to the village, but also sets them on a course, full of promise and potential, for the rest of their life.

Postscript: This post is based upon personal experiences, relationships with parents (themselves both neurodivergent and typical) of neurodivergent children and young adults, and associations with professionals who work with neurodivergent children and their families.