Today I was shaken by Autism. Nothing extraordinary happened with Nico. He didn’t have too rough of a day, but it was enough to ground me back in reality. I think I had been living a bit in my idealistic universe, which I try to live in more and more everyday, but when a day like today shows up I have to check myself.
I know Nico has Autism. It is part of who he is. But, over these last few months I have really seen major growth. Maybe it’s because he is in Kindergarten and that is a HUGE milestone for us or maybe it’s because he seems to be communicating better. Whatever it is though, I have seen him grow a bit more.
But then he interacts with neurotypical children his age and I see the stark contrast. I see how he is lagging and it rocks me to my core. For all of his amazing attributes and intelligence, to the naked eye, it may go unseen because it is not quite typical and typical is what makes sense to the majority.
He can’t find words to tell someone he isn’t ready to play something else or that he would really love for his friends and family to all just stay seated on the couch together because that is what brings him such joy. He can’t quite communicate that he would love someone to follow his lead or play with what he finds enjoyable. And because he can’t find the words….he hits. I hate that he hits although I know why he does it. He can’t communicate his frustration, disappointment, or sadness.
Just saying aloud that he hits makes me already feel judged. Makes me feel embarrassed. Kids are not supposed to hit.
It breaks my heart and that is when I slither away to the bathroom and silently cry for my son.
How unbelievably frustrating it must be to know that you want to say something and literally cannot get it out. To feel trapped within yourself. Hitting becomes his only means of communication. I don’t condone it, but I can empathize so deeply. I try not to make excuses, but I feel myself getting overprotective of Nico when it happens and I don’t always want to discipline him as much as just hug him tightly.
I look at his peers, his cousins, his friends (the few he has…thank goodness for his cousins) and I catch myself feeling envious because they are living typical lives, behaving age-appropriately, enjoying all sorts of wonderful experiences. I want that so badly for Nico.
Yes, Nico does find enjoyment in activities that others engage in. I don’t hold back on going out and trying new things with Nico, but it is a major risk each time we do it. It just takes one person to strike up a conversation which Nico cannot contribute to, one shift in activities without a slow transition, or one moment that strikes a nerve with him and a meltdown ensues. Others begin to stare. Children back away. Hitting may follow. And, I am left to grab Nico and usher him away before it becomes too much for either of us to bear.
I panicked today. Lost my breath for a second when I envisioned Nico never fully communicating. Struggling to connect to others. And then the questions came flooding in: Will he go to college? Will he be able to find and keep a job? Will he have friends ( outside of his cousins who are friends by default thank goodness)? Will he find someone to love and who will love him back? Will others avoid inviting us out because they don’t want to deal with a child with Autism? Will we ever just be able to go somewhere with me not having a pit in my stomach over the fact that it could end badly in a heartbeat?
I struggled today to hold in my tears. I became anxious and irritable. I was oversensitive if anyone wanted to correct him. I just wanted to grab him, pull him into my bedroom, close the door, and hold him forever. My isolation reflex kicks in. I want to just stay in my house and protect Nico from the outside world.
Autism got the best of me today. I grieved today over the childhood I envisioned my son having as opposed to the one he has.
I know tomorrow is a new day and I will quickly rebound, but today, amidst all of the little breakdowns and struggles, I wished Nico didn’t have Autism. I was tired of Autism today.
I wanted a different reality today.