Opinion

'Is he autistic or not? I'm not leaving here without an answer.'

An excerpt from Kate Swenson's 'Forever Boy: A Mother's Memoir of Autism and Finding Joy'

We were technically twenty minutes late for Cooper's ap­pointment. The one we had waited so long for.My husband Jamie had one job, to get us there on time. He had the clinic name, but what he didn't know was there were multiple locations. We were going north when we should have been going south. I knew it was a harmless mistake, but to me it felt like he didn't care. I needed more effort from him. I was livid, frantically dialing the phone to the intake line, begging the woman on the phone not to give our appointment away. She said they would wait fifteen minutes, but after that, the appointment would be canceled.

I had done all the prep work for the appointment, pages and pages of paperwork. Question after question asking if Cooper could drink from a cup, smile at a stranger, or pretend to feed a doll. I had to sign release forms and have records transferred. I made endless phone calls to our insurance company and to every place that had seen Cooper since birth. Other people in our fam­ily had to complete evaluations as well. It was all-consuming. Jamie didn't understand how easy he had it and what I had been through to get us to this point.

Once we arrived, late, the three of us were placed in a room with a small table and a play structure. It was hot and the lights were dim. I felt agitated and uncomfortable, not wanting to be there in the first place. I swear that every hard situation in my life happens in a hot room. I looked at Jamie and wondered if he felt crowded too.

Cooper was given toys to play with, but he mostly just climbed the rocking canoe placed in the center of the room. Every so often the psychologist would ask us a question, and one of us would answer her. Since Cooper wouldn't respond to them, they asked me to prompt Cooper to perform different tasks.

"Point to the apple."

"Give the baby her bottle."

"Stack the blocks."

I started to feel like I was on display, like I was the one being evaluated. I sat with Cooper in between my legs, holding his hands in mine, willing him to be successful.

"Come on, buddy, just like we practiced."

The psychologist asked if he lined up objects or had an ob­session with wheels. The answer to both questions was still no. Cooper continued to wander around the room, engaging when he felt interested, which seemed to be more than the usual.

After several hours, I had a sinking feeling. This was going well. Too well. They aren't seeing the real Cooper. We came all this way and it's going to end up like every other medical appointment, wait and see. I couldn't imagine leaving without an answer.

And then, with the thought still running through my mind, Cooper picked up my purse and brought it to me. He was tired, ready to go. When I didn't jump up, he moved his way to the light switch, flipping it on and off repeatedly. When neither Jamie nor I reacted, he took the lady's clipboard, the one the woman was using to determine if he was autistic, and threw it against the wall. I watched it shatter, the metal separating from the plastic.

Cooper looked at me, with fight or flight in his eyes. He swung the door open and took off down the hallway. I could hear him drop to the ground in screaming protest as Jamie caught up with him.

I smiled awkwardly. "That's the Cooper I know."

Finally, our three hours were up. Four of us, Jamie, me, and two psychologists, sat on little chairs at a tiny table, while Coo­per sat in the brightly colored canoe, watching my phone. The older woman slid a folder across the table, almost discreetly. Like it contained secrets. I stretched out my hand and slid it toward me. I felt like we were spies or something.

I flipped it open, ready for our fate. Pamphlets and resources stared back at me. I flipped through it. Speech delay, develop­mental delay, autism, etc. Nothing specific to Cooper.

This is it? I thought.

In Minnesota, there is this awkward goodbye that most residents have perfected. Chatter turns to small talk, usually about fishing or the weather, neither party wanting to be rude and end the conver­sation. As Jamie spoke about his favorite lake, I had had enough.

"Is he autistic or not? I'm not leaving here without an answer."

"Well, typically we send you something in the mail and then follow up with a phone call. It will be two weeks. We don't tell you today."

"But obviously you know. I can't leave here without you say­ing it. I need to know." You could hear the desperation in my voice as it shook.

Jamie was standing to leave, uncomfortable by my forward question. Cooper was pulling on my arm, but I held my ground.

"Yes, Mr. and Mrs. Swenson, Cooper has autism spectrum disorder."

And then everything faded away. I looked down at Cooper, pulling not so gently on my arm, whining to leave, and all I could think was, I made it. We made it, buddy.

I had my answer. The last four years of fighting and begging and trying to figure out the mystery of Cooper were done. He has autism. And for the briefest of seconds, before all the other emo­tions hit me, I felt relief. I might have even smiled. And I told my­self the hard part was over. Now we would get help and move on.

I heard her say "special needs" as she continued to speak to Jamie. That term that felt so heavy. She said something about the possibility of him never talking or using the toilet. I heard "planning for the future" and "lifelong care." But I was done.

I bent down and scooped up Cooper in the biggest hug and turned him away, shielding him from her words and future pre­dictions, and I basked in my feeling of relief for as long I could.

This is an excerpt of Forever Boy: A Mother's Memoir of Finding Joy Through Autism (Park Row, April 5, 2022), available for purchase here or wherever books are sold.

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