Words Connor Has Said: Night Night

When Connor was born no one wearing a labcoat and carrying a clipboard came into our hospital room and said, “I’m sorry to inform you, your son has autism.” That’s not how autism works. Autism is subtle at first. We left the hospital with a healthy and happy baby boy. Our hopes and dreams were intact and life progressed normally.

I sang with all three of my kids when they were little. Mostly “Old McDonald.” I would start the song and they would join in with the “EIEIO” part. I remember teaching the song to Connor and his eyes lighting up as I sang, “Old McDonald had a farm.” He looked me in the eye, completely engaged and said, “OH! EIEIO!” We proceeded with cows and pigs and other farm animals, each time he would join in, “EIEIO!”

It was at about fifteen months when we first noticed something was wrong. He stopped making eye contact. Interest gave way to obsession. He would simply sit and rock or wave his arms for what seemed like hours. And he was losing his language.

“Old McDonald” was one of the first casualties. The joy of interacting with my son was replaced with the confusion and heartache of watching him isolate himself, focusing on his own little world and blotting me out with endless repetition of, “EIEIEIEIEIEIEIEIEI.”

It would go on and on. Never ending, never letting me join in. The joy I had experienced sharing the song with my child was replaced with the fear that I would never get him back.

EIEIEIEIEIEIEIEIEIEIEIEIEI

[pullquote]Let me tell you what I wish someone had told me: You know your child better than any doctor. [/pullquote]

We were told by well-meaning doctors that boys were different than girls. He was healthy and happy after all, so just give him time. Don’t rush him. He would start talking any day now.

Let me tell you what I wish someone had told me: You know your child better than any doctor. You spend more time with your child than a doctor ever will. If you sense something is wrong make the doctor listen. If they don’t, find another doctor. Do not delay, do not wait for them to grow out of it. Get help as soon as you realize something might be wrong. Early intervention is key.

And realize that this is even more frustrating for your child than it is for you. I often think it must be like swimming through syrup for them. Constantly fighting a world around you that is simultaneously overwhelming you and holding you back.

Carly Fleischmann, who herself is affected by autism and non-verbal puts it this way, “It feels like my legs are on fire and a million ants are crawling up my arms.” This is the world my son constantly lives in. The frustrations and inconveniences I experience due to his autism don’t compare.

As we lost Connor day-by-day to autism he lost sleep night after night. Autism doesn’t shut off, it doesn’t allow the child to calm down and sleep. I spent most nights laying with him in a recliner, holding him and trying to get him to go to sleep.

Little did I know at the time that this was the kind of therapy he needed. I would hold him and methodically squeeze him. First his legs, then his arms, holding him very tightly. It would take an hour or so every night but he would eventually fall asleep. Today when he’s frustrated he still asks for squeezes. He will hug me tightly, guide my hands to his head asking for pressure and even use his iPad to say, “open, squeeze” and offer me his leg for more pressure and more squeezing.

Once we had a diagnosis we had the opportunity for medication. The very first need to be addressed was sleep. We all know that we cannot function without proper rest. Imagine how that need is multiplied when you struggle every day with a world that constantly challenges you.

I’m no doctor, but it seems to me that Connor’s little body and brain didn’t know how to deal with the effect of the medicine and the sensation of being sleepy. The first night he was medicated, he fought sleep to the point that I could no longer hold him down. He was up, running through the house, spinning in circles and jabbering constantly.

EIEIEIEIEIEIEIEIEIEI!

I, on the other hand, was in our recliner, in the dark, trying to fight off my own desire for sleep and praying that Connor would give up soon. I remember watching him, silhouetted by the light from the kitchen as he continued to run through the house at full speed.

EIEIEIEIEIEIEIEIEIEIEI!

Then came the moment when he had had enough. He tensed every muscle, looked up to the ceiling and with one last breath uttered his defeat.

“NIGHT NIGHT!”

And with that he crumpled to the floor, asleep.

That’s my son’s world. That’s my world. And that was the last, “Night night.” There’s no tucking in and there are no bedtime stories. There is only the struggle against himself and a world that just doesn’t understand him. The only bedtime prayers are the ones we utter in desperation for this to be a good night–one where we all get to sleep.

Occasionally those nights happen.