Susan's Blog

Thursday, December 2, 2021

Answering the Call

The call came, as always, when I least expected it. Of course it does, because if I had been expecting it I would have called him first. But there I was, blithely going about my business, doing my work, as if I were like anyone else. But, you see, I’m not. I am an autism mom and that means I need to be life-or-death alert like a rabbit, on call like an ER surgeon.  My beautiful bright son Nat is now 32 and so capable, so competent, mature, and dependable. But he is strung so delicately, like a fine old Stradivarius, and his music is just as beautiful, but it doesn’t take much to knock him out of tune. I love him so deeply and fear for him even more, so that I cannot completely separate my own psyche from his. So many of you out there will think you know better. “Let him go, for fuck’s sake,” you might be thinking. “He’s an adult, he’s fine, he’s come so far,” others might say. “Get a life,” or “I don’t know how you do it,” are the other popular refrains. It’s all the same to me. It just means that you are tired of it, you are frustrated by it.

But you are not me. You don’t know what it’s like to love Nat, and to fear for Nat. You don’t know what it’s like to get the call: “Out of the blue, Nat started screaming and slapping his head.” You don’t know what it’s like to have your heart stop and to feel utterly powerless and sad. So sad. There is nothing worse than your child to be in pain. Nothing. Even if he’s all grown, and has a whole life apart from you. But because of my love and my fear, my whole life comes to a stop because that is how it is, how it has to be.

Why do I fear? I don’t want Nat’s life to become limited. I don’t want the people around him to say, “we just can’t do it anymore.” I don’t want to see the love that they had for him grow dim from their own fear and frustration. I’ve seen it, many times. The people who promised to take care of him, to teach him, to love him, and who failed. In the end, I take him home with me, even though I don’t know how to keep him calm any better than anyone else.

Today, though, when the call came, it was different. The person calling sounded calm. Concerned. Responsible, not afraid. He told me about the out-of-the-blue outburst but he had something more to say:

“When I asked him to use his words so that I could help, he said, ‘December.’ And he said ‘Mom.’”

Then he handed Nat the phone. Nat sounded very wound up, his voice swollen with emotion. My heart puffed up in response. But I knew what to do. “Nat,” I said. “are you worried about December?”

“Yes,” Nat said.

“Because there’s no snow.”

“Yes.”

“So you’re really afraid that the December things won’t happen.”

“Yes.”

I exhaled. “Okay, so Nat, it’s true that there’s no snow. But it still is December. And we still will have Chanukah and Christmas. We’ll still have latkes tomorrow and Christmas in New Hampshire. And there will be snow, but not today.”

“Okay.”

“It’s still December and it’s still winter.”

Shortly after, Nat got off the phone. I sat there looking at my open laptop, at the work I’d been doing, and I knew that was it, that I would not be able to work anymore for now. That I had to get out of there and get home. Charge my phone so that I could call Nat later. Recharge my own battery, too, with a bike ride and a hot bath.  Get my story out of me so that I can breathe again.

And take a moment to be thankful and proud that Nat knew just the right word, and was able to say it.

And that I could be there for him and make it right. For even with a terrible, difficult moment like this, being needed by someone I love so much, and being able to help him – that is what it’s all about for me.

8 comments

When Terry first moved into a group home, I was contacted on Dec. 24th by the manager. Terry was very upset and staff couldn’t figure out why. I thought about it and wrote up a social story, explaining that Santa Claus knew Terry had moved and would bring his presents to his new house.

Problem solved.

— added by Catherine Boyle on Thursday, December 2, 2021 at 3:27 pm

I love this. Nat is so lucky to have you as his mo
m. Have a wonderful holiday season with your amazing son. Mary

— added by Mary Weil on Thursday, December 2, 2021 at 4:31 pm

This is the story of our lives. Thank you for sharing. I hope we can train others to interpret behaviors and words as well.

— added by Jane Dolan on Thursday, December 2, 2021 at 5:02 pm

I hope that bike ride and bath helped. We all live in that fear and I am so glad we have out village to understand how things can go wrong split of seconds. I am so happy that it didn’t come to that. So happy for December/ Snow/ Christmas and the connection they have.

— added by Jaya Pandey on Thursday, December 2, 2021 at 5:43 pm

Well said, Susan. Your ability to put our feelings to pen is liberating somehow. The affirmation is calming to me. I believe the unification in mothering our loved ones who are specially wrapped brings forth sanity and hope when I read your work — your love gift. Thank you. May the holidays bring that peace to light just when we need it most.

— added by Linda Cox on Thursday, December 2, 2021 at 11:13 pm

This is just priceless. It is the universal truth of us moms trying to be the best version of ourselves everyday for our adult children regardless of the circumstances. This is unadulterated unconditional love. God bless you and yours.

— added by Sandhya on Friday, December 3, 2021 at 7:11 am

A story that echoes ours, beautifully told.

— added by Sara Campbell on Friday, December 3, 2021 at 11:30 am

This is exactly how it feels to me when I “get the call.” Usually I don’t have any idea what causes Billy’s behavior. Right now he is peeing his pants without any provocation. Give me strength. I am glad to know I am not the only one who has such strong reactions to these types of calls. I can’t sleep afterward. Thank you Susan!

— added by Karen Mariscal on Wednesday, March 16, 2022 at 3:55 pm

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