When my world came crashing down around me that unassuming March day five years ago, I could see nothing past Autism. It began to suffocate me the minute the doctors bluntly uttered the word; a word that gave life to a burden I did not believe I could bear. I choked everytime I said it outloud, and as family and friends offered their awkward condolences, I screamed on the inside about the unfairness of our fate.
Two months later, I watched my firstborn appear to fall asleep in his food bowl, and eventually collapse on our lawn ;we met with top neurologists and learned that epilepsy was more common in children with autism. I redefined falling apart and greeted each day with a sorrow that consumed me from the inside out.
The days weaved into months and we fell into a routine; therapy and doctor visits conquered our calendar, and new vocabulary terms made their way into everyday conversations. Terms like Non Verbal, Stimming, Sensory Overload, Poor Eye Contact, Low Muscle Tone. The more we said them, the less sense they made, and I struggled to piece together what was so obviously broken.
As Superman flourished intellectually and socially, Monchichi’s delayed development was in stark contrast to his brother’s. Each time Superman hit a milestone, I felt guilty about celebrating too much or guilty about not celebrating enough. I bit my lip to stop the tears when I heard my younger son eloquently let me know that something went wrong: “Uh Oh,” he would say; at once music and sadness to my ears. Monchichi grunted and whined as he struggled to make sense of the world and OH! the frustration we all felt. How the days dragged on, the nights sleepless and filled with a heaviness that threatened to bury us.
He had no idea I was his mother, and I tried in vain to make him love me more than he loved anyone else. I gave deeper and longer hugs. I covered his chubby smooth cheeks with sloppy kisses. I buried my face in his belly and blew rasberries the size of Montana. But he barely blinked when I left the room, and gave me the same treatment he gave everyone else; it was a generic love that I clung to, but I pined for something more. I was his mama, after all.
He broke my heart a million times with fleeting eye contact and a silent list of needs I felt I could never fully meet, and when he began to bang his head on the walls and floors of our home, this abstract life making him so obviously crazy, I called for reinforcements because another day alone was more frightening than anything else I could possibly imagine.
I prepared for the worst.
And didn’t dare to hope for the best.
I am sitting across from his second grade teacher. It is half past noon and her animated face and loud booming voice give away the passion she has for her job. She tells me what a joy he is, how far he’s come, how she loves his unruly curls. He is sitting in my lap, his stare meant only for me; his arms wrap around my neck, and he nuzzles me the way only a boy who loves his mama can. I laugh out loud, and tell his teacher that he has forced my husband to sleep on the opposite end of the bed, his rhythmic sleep in tune to mine, his dependence on my presence something we will have to address in therapy soon, since I am barely able to go the bathroom without him trying to break down the door.
I am dumbfounded when she tells me that she has never heard him say “No” or verbalize his colors. I sit him up and command him to repeat after me and she shakes her head, both of us playfully accusing him of taking the easy road in class. We come up with a plan and she promises me a new set of goals, now that she has heard what he can do. I promise a list of his 60 or so verbal approximations and turn to him and call him a stinker. He snorts and giggles in response. He has become a master manipulator, and secretly I am so proud.
We are driving home and my mind is fixated on the lab work we need to do in order to begin weaning him off of one of his three anti-seizure meds. I begin composing a request for an IEP meeting to address the need for more challenging speech goals in my head. I wonder outloud what kind of snack I can send him to school with for his classroom Halloween party. Something everyone will enjoy. I marvel at how he has outgrown all of his long uniform pants and that we need to invest in more before the cold weather kicks in. I ask him if he is hungry and he barely skips a beat as he answers me with the one word he can pronounce perfectly. “NO.” I fret over his appetite, but mostly because my mother is really fretting over it. Out Loud. Everyday. To me.
I think about his obsession with the tractor tipping scene from Cars.
And how he opens the fridge no less than 25 times a day.
And that we have to sing Happy Birthday on request, because it makes him so happy and we are suckers for his smile.
And there’s the whole having to sit on the toilet, dripping wet, right after a bath. Not to pee or poop. Just to ponder, we guess.
I worry about the fact that he has taken a sudden liking to eating cold hot dogs and what that is doing to his digestive tract and then I am reminded that I am out of probiotics and cod liver oil capsules and crap, if I go to the store now, he’ll miss his early nap before therapy today and then Mr. Grumpy pants will haunt the house at all hours of the night. And that, as I write this blog post, he is in a power struggle with me and my beloved LG front loading washing machine.
I sit and I think
how far he has come
how far WE have come
it is, for now
a Better set
10 Replies to “A "Better" Set of Problems”
Geesh… Jo. I can not even imagine what you have gone through. And I am sure you hate hearing that. But what you have written down here is what other moms in the same situation would love to read.
Kudos to you. And always XO.
Your story made me cry. I was there four years ago and three years ago.I have two dx children one aspergers one ppdnos.We don't have eplipsy but we do have adhd,insomnia,depression w/possi le bipolar in my six year old. I understand some of your struggle. Hugs to you.
this was beautifully written. And it made me cry too. HUUUGE hugs
I'm in tears as I write this. Your story was so moving. You are a poet in your own right. While the story is about your struggle, it is so beautiful in it's own way.
I wish you and your family the best life has to offer. Your son sounds like an absolutely beautiful soul.
Thanks so much for writing this. (And thanks for Ohmommy for posting the link on Twitter).
I have a little girl with Autism and though she's always been quite affectionate – she's very different in this way from many kids with ASD – it used to crush me how we are not yet able to have a conversation about, well, anything. These things so many parents take for granted. All the "Why" questions. What I still wouldn't give for those… But, she HAS come a long way. And we are SO very proud.
It is so exciting to hear about your little guys triumphs; your story inspires me to dream about where our little one might be in three years.
Thanks again : )
I don't really have the words that could do this post justice.
Just . . . THANK YOU. It is beautiful, honest, heartfelt, and inspirational.
OHmommy praised this post–I can see why.
What a beautiful post. What you have gone through and how you have come out of it shining. Wonderful. 🙂
I have been where you are. I understand. I do not miss the days of refrigerator locks, door alarms, and id bracelets for the impulsive second grader who could not say his own name.
Today my little boy is attending college and planning a trip to Japan on his own. I could not be more proud of him. But I wish all those years ago there had been someone like you who let me know that I wasn't the only one. Thank you for a beautiful post.
amazing to read – thank you for sharing this