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.