For years, I was an undercover agent in the world of special needs. Along with our therapist, we had decided that the best thing for our family was to eschew the formal diagnosis for a few years.  At her suggestion, we began our special needs journey knowing that our son had certain tendencies, but agreeing to allow him to grow and mature. He needed some time to work out the kinks before we indelibly marked him with words that could impact his future. For his sake, and for ours, we wanted to see what was possible with therapy and direction.

 Even without the official label attached to our son, we still had all the typical special needs bits and pieces to deal with-therapies, accommodations, and frustrating behaviors, to name a few. All the elements were there, and even though we operated with a “diagnosis that shall not be named” attitude, they were still trying years in the trenches.  Two steps forward. One step back. 

We rocked along like this for years, but as my son inched closer to puberty, it was obvious that we needed to switch our focus slightly. He had certainly matured over the six years since his non-diagnosis, and even made enough progress to “outgrow” his OCD tendencies, but many of the global delays were still present. In the interest of full disclosure, I never really expected that my son would outgrow his potential diagnosis. I just wanted to give him a chance to prove what he could do before we saddled him with a list of what he supposedly couldn’t do. I knew a time would come when we would need the power of that official diagnosis. This was that time. 

Our choice to fully embrace the diagnosis was driven by a variety of forces. At the age of 11, my son had made enough progress that he was able to enjoy classes and activities along with his typically developing peers. His experience was still not typical for his age, though, and he often had struggles that left his instructors baffled. An official diagnosis was a neat and tidy way to help everyone understand that he would need some extra support.  This was particularly important because on the exterior, he appeared perfectly “normal.” The diagnosis shifted the attention from “bad kid” to “needs extra help.”

Looking towards the future also had a big impact on our relationship with the diagnosis. Again, with maturity, we could see higher education as a real possibility for our son, but we knew he would need help to be successful. Talking with other parents who had been there before us helped us to realize that accommodations were available in higher education for kids who had diagnosed special needs. Time and again we heard parents lamenting that they wished they had pursued a diagnosis sooner, so that accommodations would be available for their older students.  We definitely did not want to be left behind with a diagnosis in our back pocket. Our goals were changing as our son grew, and we needed to evolve along with them in the way that benefited him most. 

The most important impetus for embracing the diagnosis was my son’s self esteem. For many years, his developmental understanding kept him blissfully unaware of his differences.  As he matured, he reached a point where he could see that he was different and he wanted to know why. Helping him to know that there was a reason for his struggles, and showing him that there were other people like him who had been successful boosted his self esteem. Hearing the diagnosis for the first time was like a turning point for him. Not only did we, as adults, embrace the diagnosis, but he embraced his own diagnosis. Had we told him earlier, he would have been bogged down by the weight of it in his emotional immaturity. Had we waited any later, he could have become depressed by incongruous understanding of his place in the world. The time was right when he began to have questions about himself.

Embracing the diagnosis was a freeing experience, just as freeing as the experience of delaying the diagnosis.  Both decisions were the right one at the time for our family in our situation. If being a special needs parent had taught me anything it was to be flexible and change things if they aren’t working. 

Embracing the diagnosis was uncharted territory for us, and it was scary. I worried that the balance we had worked to achieve would be upset.  Would we be able to accept the diagnosis? Would people still accept us? Would my son be able to accept himself? 

All of these worries quickly faded as we began to really see the benefit behind the official diagnosis. Friends who I worried would reject us, came out of the woodwork and offered their support. Teachers and coaches went out of their way to meet his accommodations. But most of all, my son blossomed with his new understanding of himself. As I watched him continue to struggle his way towards maturity, there was a confidence that this was exactly where we needed to be. This was the next step in helping him to reach his full potential.  With that in mind, we bear hugged the diagnosis we had avoided for so many years. It was the key to the next step and it opened doors to the future.

Perched on the edge of my chair, I furtively craned my neck in hopes catching a premature glimpse of the words on the paper-words that I would hear in a moment and would seal my fate.  Of course, I had a good idea of what the paper would reveal, but somehow seeing the results of the battery of diagnostic tests in black and white was like a door slamming shut. Once that diagnosis was read, I would forever officially be the parent of a special needs child.

The therapist smiled a comforting smile, one I am sure that she had perfected after years of greeting parents on the hot seat. She took a deep breath and I tried hard to swallow to ease my dry throat as I prepared for the verdict. 

She shared that the test results indicated some deficiencies in my four year old son, and those deficiencies could globally indicated a series of diagnoses. I waited to hear the letters and words-letters like ADD, Autism, OCD- that I had feared. But instead, what she said next shocked me. “Right now, my recommendation would be to ignore any official labels and focus on what’s possible over time.” Because we had chosen to homeschool, a decision we made before we ever thought of seeking a diagnosis, she indicated that there was no educational benefit gained from making it official. More than that, she saw any diagnosis at this age as much of a drawback as it was an advantage.

I felt myself getting angry. I had come-and paid for- a diagnosis and I wanted to hear the diagnosis. As she spoke, though, my current anger and my former fear began to melt. She began to hand me sheets of papers that, ironically, had diagnoses written in bold letters at the top. Treating me like the patient, the therapist definitively marked a line through each diagnosis and directed my attention to the list of characteristics that accompanied each diagnosis. She spoke in a soft “come down from the ledge” tone that lulled me into a place where I could really listen to her words. That’s when she hit me with the money quote. “This list of characteristics is your task list for the coming years. Consider each one of these a challenge to be met and see how many you can conquer with your child.”

With those words, I formally became the parent of a special needs child, but unlike the dark and restricted path I expected, I felt free. She cautioned me that there could come a time, like if he were to enter the school system or have a need for services, that a diagnosis would be a benefit. When, and if that time came, she was willing and able to make the list of characteristics an official diagnosis. Until then, I was to operate just like every other parent. Along with teaching the ABCs and counting by tens, we would also be working on empathy and eye contact. The list was slightly different from the typically developing child, but the goal was the same. I was to see what my child needed to learn and do my best to help him learn it. 

Unfettered from the diagnosis, I embraced the list of characteristics like someone had thrown down the gauntlet. Rather than see the list as an inescapable life sentence, I saw it as a grudge list of tasks that I could throw my entire energy behind. The anti-diagnosis that I had expected to gut me was exactly the impetus I needed to start down the special needs path with confidence. Should we need that official diagnosis in the future, I was fully ready to embrace it, but for the time being, I was too busy marking tasks off my list.