Nobody ever enters the parenting journey with the thought, “Gosh, I hope I discover that my child has a special need that makes school and social interaction difficult for her.” We just don’t think like that when we’re expecting our first child, or preparing to adopt for the first time.
And yet, it happens, we grieve, we adjust our dreaming a bit, and accept our new normal. We stop being in love with the fantasy we had built in our mind, and fall in love with the reality of a precious baby girl or boy, who has a special need, but is not a mistake. That was our journey several years ago when we first discovered our oldest son, who came to us through adoption, had Alcohol-Related-Neurodevelopmental-Disorder, a disorder caused when his birth mother consumed drugs and alcohol during her pregnancy with him. We did grieve. A lot. We went through the myriad of emotions you feel when the doctor sits down and presents us with an official diagnosis: anger, frustration, sadness, worry, resentment, and fear. “What does this mean for our child? Will he be able to make it through school? Will he always wear a label everywhere he goes? Will other kids make fun of him? Will he ever find a genuine friend who doesn’t look down on him or judge him for a disorder he didn’t choose? Will our family see the same beautiful, precious little boy we see?”
And then there’s the anger toward his birth mom. For years we carried it. More like resentment mixed with anger, mixed with frustration, mixed with a whole lot of ‘how could you’s.’ One big cocktail of emotions. But we lived through it, and we certainly accepted our new normal. We became ultra-familiar with IEP (Individual Education Plans) meetings and non-mainstream class situations. We sharpened our verbiage for long conversations with coaches, teachers, Sunday School teachers, and neighbors who hosted play dates. We know more about our son’s disorder than most doctors do. We even lived through one of our younger sons diagnosis of the very same disorder. We didn’t have nearly the tough time accepting his diagnosis as we did our oldest son’s, simply because we’d been down this road already.
And then life went on. We adjusted to the new normal. We accepted fully the boundaries we had on our family, that other families simply did not need to have on theirs- bedtimes by 8pm everyday, even on the weekends; special diets that helped with focus and minimized the triggers with behaviors; limited play date times with families who didn’t understand in order to save face if everything went south. It was all part of our structure, our routine, our MO. The new normal became such a normal that we really didn’t know what actual normal felt like anymore. And that was okay. We loved our children no matter what and believed in their future, in-spite of what everything on paper said. We learned a balance with our other children, who didn’t have this disorder, or special need. Or so we thought.
The conversation felt like a punch in the gut. No, scratch that, a punch in the gut would have felt better. My youngest child’s teacher looked at us and asked the question that’s still ringing in my ear- “Have you thought of having him diagnosed?”
We hadn’t heard a question like that in many years. Our hearts sank the lowest bottom of our chests. We cried, we ached, we prayed it wasn’t true. We had seen some signs and wondered over the last few years, but nothing to prompt us to seek an official diagnosis. If I’m honest with myself, it was because I was in denial. While I had accepted my other two children’s disorders, it was extremely hard to deal with mentally and emotionally but also socially. ARND prompts lots of aggression, impulsion, and socially awkward behaviors, not to mention some serious judgey stigmas that are hurtful and unfair. I was in denial because I didn’t want to go through it all again. But there we were, once again seeking a diagnosis. I knew it would be good in terms of creating an IEP for my child’s education, but I feared the nasty comments or harsh looks, both at our family, and my precious son.
It was like standing graveside by a loved-one’s casket, and you snap out of the whirlwind you’ve been in for days since their passing, to the sudden realization that they’re gone. It hits you like a ton of bricks. The emotions flow. Same thing for me when I realized that another one of my kids had this awful disorder.
But then I realized something else, something more powerful than the loss of normal. I realized that this, this disorder, this diagnosis, did not mean the end of my child’s story. Not even close. It was just a different chapter than I thought we would turn to. You see, the graveside I felt I was standing next to, was not the grave of my son’s future, or the hope I still believe in for him. No. It was the graveside of the expectation I had built in my mind. It was the so-called return to normal I had ventured over to after years of getting used to the disorder. And that, my friends, is a graveside we all must stand by at one time or another. Life just doesn’t turn out the way we think it will, and that’s not a bad thing. Why? Because it leaves us open to accept new possibilities. The truth about my child, and the latest diagnosis we are facing, is not game-over, story-over, life-over. Not in the least. There’s still a bigger story unfolding for him. You may ask how I know. Because when I was his age, there was still a bigger story to unfold for me. Same for you. When you were his age, the story wasn’t over. It was just beginning to unfold.
So, I sit here before you today, a man who has gone through the grief over the normalcy we thought we were going to have, but don’t. And I’m at peace with that. I don’t resent our life, or my precious child one bit. In fact, I love him more than ever. This is the new normal. I’ve lowered expectations into their grave, thrown dirt over them, and peered into the future. I can see my a lot of brightness around our family. For that, I’m embracing the new normal.