Have you ever had that feeling, like your world just stopped turning? Like you are standing still, but everyone around you is moving forward? So dramatic, I know, but this isn’t like in the movies when your whole life “flashes before your eyes” or when scenes from your past/present go racing by on a fast train or something.
When my son was almost two years old, the long road to his autism diagnosis began. This was also the point where my world quickly shifted to revolving solely around autism, and eventually felt as though it had stopped turning altogether.
This dramatic shift didn’t happen the first time his delays or concerns about autism were brought to my attention. When his pediatrician told me he had failed the autism screening at 18 months, I was surprised and worried, but hope and denial kept the real gut-wrenching fear at bay for a few more months. Surprisingly, my world was turning right on through the meeting with the psychiatrist where the diagnosis was officially delivered to us. By that point, we had been through months of evaluations, research and waiting and, while it still stung, we expected to hear what the psychologist had concluded.
I was scared, worried and didn’t care about anything else but getting him through this thing. Making sure that he was going to be OK. I felt helpless most of the time, as progress was happening all around us in classmates, our friend’s children, our daughter. But my sweet boy was stuck, and frustrated. Even angry a lot of the time.
Friends would ask how I was doing and I would answer with how my son was doing. I would talk about his latest accomplishments, new behaviors or set-backs he was experiencing and then likely launch into the game plan for new therapies or diet changes.
Why would anyone talk about anything other than autism? I know, I was completely obsessed. When your focus is so narrow and on something so vastly complicated and very much out of your control…cue world stops turning.
I had taken on his autism as my own. It was heavy and exhausting and suffocating at times. It’s hard to think back on this time and for who/what I just wasn’t present.
I started receiving invites to workshops like “the Misunderstood Child” and reading articles on “Autism: The Invisible Disability”. Invisible. This was the part that was so incredibly frustrating. Autism is not invisible. How could something that consumed my every moment be considered invisible?
Here’s how: while out in public, my three-and-a-half-year-old, non-verbal son looked like a big 2-year-old who seriously needed some discipline. The reasons behind his behaviors though, those were certainly invisible to the untrained eye.
In our house, the walls are adorned with images of children sitting on the potty and poop in the potty in an effort to visually support his potty training challenges. Red STOP signs cover light switches and door knobs. We have locks on our fridges, cupboards, drawers and double locked exterior doors. Because eloping.
Sensory swings, balls and tunnels have taken over the playroom. His cute little bedroom has become increasingly stark over time as things have had to be removed for his safety. A changing table or rocking chair used as a balance beam? No more. Especially after that “Humpty Dumpty Phase” where he liked to “fall” off of anything he could: dressers, countertops, window ledges.
Autism is not invisible.
The scripting, stimming and eloping. The detoxing, night sweats, and waking in the middle of the night to him repeating things like “goldfish gone” with the same intonation and hand motions but with increasing intensity. The pain and frustration, the screaming. I see that so clearly at times I think it could break me.
The anxiety. It’s all impossible to ignore let alone invisible.
Getting past what meets the eye is where the good stuff lives. Like when his whole face and body lights up when he’s happy to see someone, something or somewhere. How sometimes he says goodbye every way he has memorized how: “Bye! Love you! See you later! Have fun! See you real soon!”
How he doesn’t notice when someone’s angry or irritated. He knows happy and sad and is learning to empathize with those feelings. He tickles my feet all the time, even when I’m clearly not in the mood for it. I laugh, without fail, every single time.
How he calls hearts “surprises” and they are his all-time favorite shape. He got this from a Curious George episode about Valentine’s Day he saw years ago. He is gentle and kind all the way to his core and loves his family so much.
He sings a song to himself about 50x a day to fend off anxiety. When he is calm, this is so rare and oh, so special. When he is at rest. When he can just BE. His body is still; his breathing is steady. There are no lights or sounds chipping away at him.
That’s where we are now. Tucked into his sleep tent at 3am. I’m half-covered with his Thomas the Train blanket and waiting for him to fall back asleep so I can return to my comfortable bed and get some sleep. He has other plans though. He is excited to share this space with me. It’s quiet, peaceful and calm, so I don’t mind. I’m thankful to be let in and find myself thinking about how lucky I am, because it’s so easy to forget when the days seem hard.I think he dozed off until he yells, “I want crackers!” Good Lord, this kid could literally start his day right now.
Our world never stopped turning. It changed. We have a new perception of hard work, perseverance and happiness. Autism has changed me. Sometimes I’m sleep-deprived, cold or short-fused, but I’m undeniably braver, stronger and better.
I’m so thankful for this little man. We are helping each other become who we are meant to be.