We were given the news as we sat on a couch, with an evaluation that we had already read while waiting for the psychologist. She went over it page by page, and there it was: “He shows many features of Broad Spectrum Autism Disorder.” There was not any comfort or compassion offered with these words, just part of a diagnosis for a client, my 7-year-old son. Was I shocked? No, but hearing it is very different from suspecting it.
My husband and I left the office and went to lunch. We both sat completely quiet. I texted my best friend, “I need you” and tried to keep it together in the restaurant. That was exactly a year ago today. A year has passed and I’m not sure if it feels like an eternity or the blink of an eye. I am not the same woman sitting in that restaurant feeling like the bottom had just dropped out of her world.
It has been a year of learning, practicing, experimenting and change. My husband and I set out to learn everything we could about “being on the spectrum.” Our son goes to a counselor and to an occupational therapist who specializes in the sensory processing issues that he struggles with every day. He does music therapy and takes food medicine because his psychiatrist understands that we don’t want to medicate unless we absolutely have to. We bought a trampoline because they said he needed to jump and chewy sticks because he uses Legos like chewing gum in order to soothe himself. We cut out all food dyes and put him in a school that uses a Montessori curriculum so that he is free to learn his way on his schedule. But most of all, we have learned who he is and how to parent and love him as he is.
It has been an emotional year. I have cried out of fear and out of genuine heartbreak because he knows he is different. I’ve tried to hide him from himself, making his eccentricities, anxiety and epic tantrums seem almost normal because I didn’t want him to feel bad about himself. I don’t want him to know he’s on the spectrum.
It’s been a lonely year. My husband and I often feel like hostages, never knowing if the plans we make will actually happen or if he will decide at the last minute that he just can’t go do something because of his fear, anxiety and inflexibility. Except for school, one of us is always with him. There are no caregivers that he trusts and the ones he does aren’t capable of handling him if things go south. It’s lonely because you try to explain to people with normal children, and they can’t see it, or want to offer parenting advice that just doesn’t work here.
My son is a beautiful child; he looks like the all-American little boy, but what you can’t see is the road map in his brain that often goes in circles or sometimes just plunges off of a cliff with no warning. I have cringed at the nasty stares from people as my child has what we call an “epic meltdown” in public. No, I am not a bad parent raising a spoiled brat. I am an awesome parent raising a challenged child. And yes, I am guilty of being one of those people who judged other parents when their kids were “acting up” in public. Now I just look on with empathy and understanding, assuming that, like me, they are doing the best that they can in that moment. I do not know their “particulars,” as I like to call them.
There have been days that I’ve thrown myself across the bed and cried, “I can’t do this anymore. I didn’t sign up for this.” There have been times when I’ve thought of driving my car off the road and ending the misery. But believe it or not, most days I am grateful. I am grateful for a little boy who challenges me every day to be better, kinder and more patient, and with that comes a sense of self-worth that in forty plus years I have never known. He thinks I am the best thing in the world. I am his safe place, his home base, and he is mine. He has taught me that I am tough, and I no longer live in fear of the “what ifs” because I’m living the “what ifs” and I’m doing just fine. He has grounded me in a way I eluded for so many years. He saved a marriage that I had given up on, allowing me to become friends and partners with my husband and finally understand, after 10 years, that I really was where I was supposed to be.
He taught me that I can be great even from my house in the suburbs. He has taught me to never stop looking for the answers and the people that can help. My family has been beyond fortunate in finding healthcare providers and educators who not only take care of my son, but take care of all of us.
Most of all, I have learned acceptance over this last year. I don’t know why my son will only wear shorts even when it snows or how it is he can remember events that happened before the age a child should have memories. I don’t know how he can smell the dog food from three rooms away or how he can memorize every detail, release date and story about superheroes, Legos, Minecraft, and Skylanders. I don’t know why he sings incessantly and refuses to try any new foods. His list of “particulars” is long and growing, and no one knows them better than me. I don’t spend time on the why anymore. I spend my time on the how do we make the “what is” work for him and us. I acceptance him exactly as he is and I love him unconditionally.
I looked up the word “spectrum” before I wrote this. In fact it’s kind of what prompted me to write this. I needed a formal definition of the word because I’m like that. One of my particulars, I guess. This is the definition that I found:
“A spectrum is a condition that is not limited to a specific set of values but can vary infinitely within a continuum. The word was first used scientifically within the field of optics to describe the rainbow of colors in visible light when separated using a prism. Spectrum has since been applied by analogy to topics outside of optics. In these uses, values within a spectrum may not be associated with precisely quantifiable numbers or definitions. Such uses imply a broad range of conditions or behaviors grouped together and studied under a single title for ease of discussion.”
I thought about this definition for a long time, and I liked it so much more after I sat with it than I did when I just kept hearing the words “on the spectrum.” I can’t get past the thought that if a spectrum is a continuum, then aren’t we all somewhere on that rainbow? Aren’t we all different and unique in our own way? Some of us will always shine brighter than others, depending on how you look at us.
Related post: A Letter to the New Autism Parent