2 years. That’s how long it’s been since I’ve known Nolan has autism, several months before his official diagnosis. In what seems like an instant, all the preconceived images I had for us became a fog. Playing catch, talking Packers and McCarthys stupid play calling, moving him into UW, yelling at him for drinking too much on Thursday nights at UW, and watching my wife dance with him at his wedding, fading away just like that (snapping emoji). It’s hard to write or talk about it without sounding pessimistic or depressed.
I often go back to the feelings I had in 2016, denial, confusion, disbelief, anger, sadness. Why him? Why me? Why does my 2 year old have to spend his childhood getting therapy 35 hours a week instead of being a kid? Is it so much to ask to be able to have a relationship with him, just a simple conversation? People would say, “God doesn’t give you anything you can’t handle.” I know they’re just trying to help and support. All I thought then was “well then why can’t I handle it?” I say this not to get your pity, but for your understanding. I won’t sugar-coat it, that plan we had 2+ years ago, the vision of fatherhood I had? It’s gone, irrelevant even. I have mourned the loss of the boy he was, talking, playing, seeking attention. Autism has taken those things from him. From me.
The anger I have for wanting to change my son is real and nonstop, and it’s the most painful feeling. Maybe worst of all, regressions force you to lose hope. What is a father without hope for his son? Like any dad, I want to teach him so much, but he seems to have little interest in my life lessons. So how can I help then? My wife says I never sit still so why would I sit idle now? I found people that walk a parallel path to me on social media. I immersed myself into reading books and blogs about autism. Two particular things I read stick out to me because they hit me like a 10 pound hammer with a 5 foot swing. I saved them in the notes of my phone and like to read them to keep me sane in the wee hours of morning when Nolan is up:
“Learn to be his foundation as opposed to his leader” and
“Start scoring your days based on the number of times he smiles, rather than the number of times he acts like a typical kid.”
So I did these, well most days I do. We gave Nolan the reins and he pretty much potty trained himself. He is now riding the bus home from school two days a week and absolutely loving it. He swam with just his puddle jumper this whole summer even jumping in willingly. We are slowly finding things to entertain him, to stop the constant drumming and stimming, even for just a minute. Heck we even got some pictures of the kid smiling and looking at the camera.
Does he want to read with my wife? No. Does he want to play with Stella? Nope. Does he want to watch or talk about sports with daddy? Hell freakin no. So yeah, we still mourn. We still get jealous seeing his peers learn and grow while he struggles and regresses over and over. But we also rejoice. Siraya does well to point out the small-scale celebrations I often miss. We try to “enter his world” instead of forcing him into ours, always trying to stay in the moment because if you let your mind travel to the past or future too often, you only get pain. Aches and joys all around, every day.
2 months. That’s how long it’s been since I lost one of the most influential men in my life to stupid cancer. If there’s one thing I hate more than autism, it is cancer. Grandpa Ken was everything a kid needs in a grandpa, and he was so much more. I often go back to the times we shared before he was sick. Times up at the cottage sitting on the deck quietly, watching the boats go by, often playing cribbage, Or to Monday dinners with the whole family. “You know Alex, it would take a big dog to weigh a ton.”
I also fondly remember the discussions we had when he was very ill. With cancer ravaging his body, he talked about regrets, struggles, faith, and importance of family, all while Nolan crawled all over him and Stella messed up his entire house. We’ve mentioned in this blog previously the awesome connection he had with Noley. How do you put into words how you feel losing someone so dear to you like that, especially when picturing his beautiful bride welcoming him with open arms into Heaven? Knowing his pain is gone, does that make it okay to feel joy? Again, like with autism, we still grieve and feel the joy, often concurrently.
2 weeks. That’s how long it took me to read a book called Aching Joy. In all honesty it probably took me 2 hours total but I had to put this book down often because of how overwhelming it was (well that and because Stella won’t let me read my books, only hers. “More Unicorn Book, Daddy”). The book is officially released TOMORROW, but I was lucky enough get an advanced copy from the author, and fellow ASD dad, Jason Hague, due to a connection we made online.
Jason is a pastor in Oregon who has a son with severe autism. His book takes you on a journey to attack the pain and grief associated with pain and grief head on, to acknowledge that grief and healing rarely walk in a straight line, and to keep God first. I learned that when you pray, it’s okay to be angry and honest. Trusting in your faith will help find the joy in your life you might be missing, that aching joy. I’m learning I need to make peace with Nolan’s autism every single day. Jason says, “My job is to find the gold within him, even when he himself doesn’t see it, and help him mine it out.” There’s always a possibility of “more.” Not only did this all ring true with my obvious relation to his story as an ASD dad, but also in the loss of my grandpa. I urge anyone going through difficult times or living in a world of unanswered prayer to buy the book. You won’t regret it. Aching Joy is available on Jason’s Website or Amazon.
2 minutes. That’s how long I stopped and stared at Nolan sleeping tonight. After I sneak into Stella’s room and whisper I love you (I can’t get too close, she’s a light sleeper and my wife says I’m a heavy walker), I go into Nolan’s room and kiss him goodnight too. An hour and 30 minutes ago he was jumping around his room, butt naked, and drumming the walls. His brain unable to turn down the volume of his senses. His limbs unable to resist the constant urge of movement. The rest of the family jumps around too, desperately searching for any connection to a soul so close, but a mind so far. Today our jumping brought eye contact, tomorrow it may not. Now finally his beautiful mind has succumbed to his sleep meds daddy gets to compound for him. Now, he’s snoring louder than his daddy does. I stop and stare.
It’s hard to describe but I am not looking at him this time, rather, through him. I am looking at you, autism. For too long, I have felt mad, frustrated, and defeated because of you. I’ve accepted the fact you are a piece of him, now and always, but you know what? So am I. He has my blood, he has my name. He is so much more than autism, so much stronger than you. Siraya and I are trying to be too. We will work every day to make you a smaller part of his life. Autism, you’re cruel and unfair, but you’re a part of our family, a family that I love so dearly. We have discovered how to love at a depth we never knew was possible thanks to you. You have humbled me. We are grateful for all we have, and all we have includes you. So I’ll take two more seconds and kiss this boy goodnight again, an end to another day filled with aching joy…hopeful that tomorrow I will know Nolan better. Hopefully he’ll give me a way to enter his world. As Jason says, “You are not a disorder, my son, but neither are you normal. No, you’re a piece of God’s own daydreams, a reflection of aching joy. No you’re not normal. You are beloved.”