In Honor of Autism Awareness Day: April 2, 2018
“How can I be there for you?” she kindly asked, with what I knew was a genuine desire to do something tangible to help her friend.
“I don’t know?” I responded. “Just prayer I guess,” which was my stock answer for anyone who asked back then. One starts to hear that question quite a bit in the early days of something hard, and after five or six or 10 people had asked me, I knew enough to know that I did not know how to answer it other than to say “just prayer.”
“Are you sure there is nothing I can do? I can watch the other kids sometime?”
“Yeah, I don’t know. Just prayer. Thank you.”
The early days of diagnosis were surreal, out-of-body, even. The year began with a hope-filled speech therapy regiment but that never really produced much. It progressed to an EEG to assess for seizures, then doubling the amount of therapy. With no real results or visible progress in the developmental deficits, genetic testing came next, which our insurance promptly denied, and an argument between whoever represented them and whoever represented us over what the words “standard of care” meant ensued. In the meantime, we tripled the amount of therapy. Five months later we completely lost track of how many doctor’s offices we had waited in and still, there was no diagnosis.
In the background, we also heard a lot of phrases like “oh friend, such-and-such’s little guy did not say a word until he was almost three,” or “do you hear how much his big sister talks, she is just talking for him,” or “look at how affectionate he is, there is nothing wrong with this boy!” We listened to these well-meaning words from relatives and friends and wished and willed them to be true, but something in our heart would not let us believe it.
For the first time in my life maybe, despite every effort of my own to believe the encouragement of others, I just couldn’t. A mother’s intuition, perhaps.
And then my moment of reckoning came. It is different for every parent, but it does arrive for all of us. Maybe it’s at a park or at church. Perhaps it is after you’ve tucked your little one in at the end of a difficult day. For me, it was in the wake of a trip with friends, after I had watched their kids all play together while mine kept his distance; no play, no games, no shared meals, no eye contact. Before any professional ever wrote it on a document that I would eventually photocopy and refer to a few dozen times, I knew exactly what the diagnosis would be.
Soon enough, I started to make it public that my little one is “on the spectrum.” If the pre-diagnosis days were emotionally tenuous, then the post-diagnosis ones are feeble at best because everybody got thoughts about autism.
“Have you read this book? My second cousin’s daughter is on the spectrum and I heard it was helpful.”
“Oh really? Thank you so much, I’ll grab it on Amazon.” (Well, I probably won’t. Because I just got this new part-time job called “being on the phone with the insurance company” so my reading time is limited.)
“Have you tried this? I heard it has helped non-verbal kids speak!”
“Cool, I will look in to it!” (And I will, eventually, because I look in to everything. I’ve googled the craziest of things these last few months even when 99% percent of people say it will not work, because in my deepest and most secret moments, I am desperate for something, anything, to work.)
“Do you think I should vaccinate my children?”
“Well, um, I think you should do what you think you should do.” (And if no one could ever ask me this question ever again, that would be just great.)
From the left, from the right, from the headlines and the internet and the mom-blogs, the thoughts came at me like a thousand arrows. Most are well-intentioned, a small and rare handful are downright rude, and the others are simply ignorant. And if my only job was handling, researching, and answering all the thoughts, I may have been able to keep up in my own way.
But that wasn’t, and still isn’t, my job. My job is the little one right in front of me, who continues to absolutely steal my heart more and more by the minute. The struggles are profound at times, and I have yet to meet the special needs parent who would deny that. The lack of ability to communicate with my child, and the fact that he cannot tell me when his tummy or throat or hangnail hurts, he can only scream and look at me with longing eyes; the insistence on sameness in our day and the breakdown when I cannot ensure that; the fecal smearing … I must not revisit that season. But oh my word, are the victories the most joyous thing I have ever celebrated! He went potty, by himself! He asked for more milk, with words! He played at the park and never ran away! He said ‘I wuv you’ and for a moment all was right in the world. And perhaps these moments are all the more joyful because for many, many months I never imagined they would come, and then they did. Thank you Jesus, they did.
Describing my life, this dance of pain and elation, is virtually impossible to do. I am still learning so much, still looking in to so much, still hoping for so much and yes, still utterly unsure about so much. But one thing I do know? My heart is wrapped around my little one’s so tightly that some days I cannot even tell them apart.
So how can you be there for me?
First, I will concede that people in any stage of grief and acceptance are not always easy to help. There is no three-step process, no formula for being a good friend when life hits someone in a hard or unexpected way. So while I still do not know how to perfectly answer you, I will say this: can I invite you to just come sit with me? Right here, next to me, and just listen. Because I don’t know what I need, but another thought is definitely not it. We’ll get comfortable, and I’ll invite you in to the space of my life that feels like a paradox at all times.
You see, when I talk to you about my son’s autism, or about any number of struggles that are part of our fallen world, I am asking you to just sit in the hard with me and to recognize the often inexplicable nature of struggling. I know that some of what I say and some of my experience will be different from yours, and it may even challenge what you believe about parenting or God or what we do and do not control.
Let’s not try to solve any of that right now. Just sit with me.
I’ll solicit for your practical advice when I think I need it, and I will remain open and humble enough to recognize that at some point I certainly will, because that’s one thing you learn pretty quickly as a special needs parent: we need other people; I need you. But right now, I am already getting a dozen pieces of contradicting wisdom at a given time, all from people who feel strongly that their opinion is the absolute right opinion. So for now, no more opinions. I just want you to acknowledge that I’m a good mom who is doing a good job for the little one God trusted me with, and that you believe in me to do this work that He has called me to. I know this may be uncomfortable for you, because believe me, it is for me, too. But can you just come sit with me? Just hold the hard as I try to as well. That would be the absolute best thing you could do.
And if you ever need it, I’ll bring my warmest blanket, and I’ll come sit with you, too.
Today, April 2, 2018, is World Autism Awareness Day. In the United States, approximately 1 in 66 children is diagnosed with the disorder, which means you probably love someone affected by it. Today, in spite of the strong opinions surrounding this still mysterious epidemic, I invite you to simply go sit with that someone you love.
With special thanks to Jennifer Batchelor, who gave me the words when I only had the feelings.
Photo by N'tima Preusser.