I don’t mourn my son’s life.
I celebrate it. My son is 12 years old and very much alive.
In the autism community specifically, and in the special-needs community generally, no small amount of conversation, writing, therapy, and individual and group support is dedicated to grieving.
I started to write this post with the intention of withholding judgment, but no: it’s infused with judgment, and so am I in this area, even while I can find an empathetic perspective.
Some of the very best people I’ve met in my life are family members in the special-needs world, and they speak eloquently and, as most people hear them, movingly about their reactions to their children’s diagnoses and then learning about and moving through the stages of grief. Heads nod and tissue boxes are passed about as the stories are told, often again and again through the years.
I couldn’t think more highly of some of these people, mostly women. And yet.
I hold no illusions about Nicholas: He has autism, obsessive-compulsive disorder, and MR with an IQ measured at 55 this January. He banged his head for years, scratched himself deeply, and would stab himself at school with pencils. He still cannot carry on a two-sided conversation of any significant quality with someone he doesn’t know or even really with someone he does know, at least not verbally. His communication and socialization abilities are incredibly limited. He is deeply routine-, schedule-, and prompt-dependent. There were years he would not eat anything other than specific brands of specific foods: just a handful of them in total. He doesn’t want to make eye contact with you. He pretty much doesn’t want to talk to you; he certainly doesn’t want to answer your questions, so he’ll give you whatever answer will make you stop, just stop. He’ll be able to learn to drive a car one day, but he’ll never be able to get a license, because he cannot anticipate and interpret the thoughts, behaviors, and actions of other drivers. He still needs help with many basic functions of daily life and perhaps to some extent he always will. He has significant sensory issues. Even with many of the people he knows the best and loves the most, he can barely get himself to give them an awkward hug.
I hold no illusions about Nicholas: He is joyful, smart, determined, strong-willed, brave, loving, and gentle, and indeed far more of each of these things than I ever have been or ever will be, although I sometimes humor myself into thinking perhaps his model has made me a little bit better of a human being. He regularly exceeds what’s considered possible for him: putting together speech combinations it wasn’t obvious he even comprehended before; teaching himself, essentially, to juggle, to swim, to master Simon and Tetris, all out of sheer will; overcoming OCD fears to pet dogs, albeit still hesitatingly so; gaining some independence in area after area in his life. Most importantly, he is kind and gentle, just the sweetest human being. He wins hearts and friends and loves. Sometimes it’s hard to understand why. But this boy who often can barely make eye contact or fake a hug has a heart connection with people — or maybe it’s a soul connection with people — or maybe it’s both, or something more still. I don’t know, actually. I do know he’s made a tremendous difference in many people’s lives.
And of course that includes mine. I hope I’m never dependent on Nicholas — I hope he never carries that weight — but at the same time his love and constancy are as much the cornerstones of my life as mine are for him.
So what is there to grieve?
Would I change out Nicholas for another child? Of course not. If he were neurotypical, would he have impacted as many lives as he has? Maybe, but probably not; we’ll never know for sure. If he were neurotypical, would he be happier? Would life be easier for him? Maybe, but again we’ll never know for sure. Plenty of neurotypical children and adults, including me, struggle with plenty of things.
What does it feel like for a living child to be grieved? Essentially, to be grieved for another imaginary child who he or she isn’t and will never be — could never be? What child deserves that?
Nicholas has received a lot of therapies, including many alternative approaches, to support him during these 12 years. Have I been trying to make his life better and more navigable — so he can have the friends he wants, for example — or have I been trying to change him, to “cure” him? These are fair questions, and I ask them of myself often enough. I make value choices for him.
At least I hope they’re for him.
Earlier in this school year — Nicholas is in sixth grade — I mostly withdrew from supporting him in his academic work. Even though I was especially able to help him “get” things, it often took a level of hard work and some stress on him to lead him there. I decided it was now more valuable for him to have a loving father who accepted him without condition than a taskmaster father who could teach him to add unlike fractions, divide multi-digit decimal combinations, or learn vocabulary words (some of which are so esoteric I’ve never seen them actually used anywhere). That work would help him do better at school and might make him happier and more accepted there, as well. But the level of value was far less clear than it was when he was learning to read or do basic addition or multiplication.
I wrote at the start that I could get to a perspective of empathy for people who grieve their autistic children or children with other special needs. There have been (and still are) times and areas of my life for which people just couldn’t understand why I couldn’t get over something and move on. Patience with me sometimes has run low. Get over it!
It doesn’t feel good. Because maybe you know you probably should get over it. And you just haven’t yet, and you don’t know that you ever will.
So, I understand a message of get over it and celebrate what you have may ring hollow to people stuck in their stories of grief and, sometimes, seriously challenging and trying circumstances.
But at least a part of you is clinging to something that doesn’t exist and never existed and at least a part of you is missing out on what’s real — on the reality of the person you love and who loves you and on the reality of your shared, interdependent lives.
Maybe there are some things you should never get over, that are simply true and stay with you always. But I can’t believe that grieving your child’s lack of normalcy is one of them.
My empathy has to belong first to the children — these bright blessings, these miracles who we love, we cherish, we celebrate, we learn from, and, I hope, we never, ever regret.
[Photo credits to Kristi Pfeffer for the photo atop this post and either Kristi or Sarah Farmer for the photo at the end of the post.]
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- Top 10 List: Things to Remember When Working with Autistic Children or Other Children with Special Needs
- The Egg Chair
- Nicholas Thurman Jackson Hemachandra: the puzzle known as Superman
- The Autistic Spectacle
- Roads Not Taken: Lessons in Autism, Inclusion, and Life
Thank you very much for your interest and engagement. I truly appreciate it.
you bet, Ray. I agree with you totally.
Oh my Ray, why haven’t I known about nor read your blog before today?!?!?! I am in tears. Gratitude ones. Awe ones. Thank you for sharing. Now I will read more…. catherine
Beautiful words Ray
Taking that “mourning an autistic child” thing seriously is deeply dehumanizing to autistics. I mean, sure, feelings happen and trying to squash them is counterproductive, but they’re also shaped by cultural ideas and if you give that idea legitimacy you’re legitimizing the idea that we are not really alive and not really people. And then you end up with horrific stories of abuse, neglect, and murder, not to mention the general binary view of disability that assumes we must be either capable of everything the idealized “normal” person does and need no help whatsoever, or completely helpless and incapable of the slightest act of usefulness.