Before I had a baby, I would look at other moms with their kids and think to myself, Wow, I’m going to be different. I’m gonna be the cool mom. The mom all the kids love and will want to play with forever. When my son, Daniel, was born 18 years ago, I thought, this is my chance. I’m going to travel with him on my back, go to exotic countries, teach him everything about the world through experience. I had spent time studying gorillas in Africa, went mountain climbing, and traveled the world pretty extensively. Why would any of this have to stop, I wondered. I’ll just put Dan in my backpack and we’ll have amazing experiences together. As a family, we would choose an unstructured, by-the-seat-of-our-pants life, take trips on a whim and learn about different cultures and people by immersion. We won’t be afraid of anything.
Well…fairly soon after Dan was born, the life I had envisioned for us felt not just remote, but trivial.
It was clear early on that something was going on with Dan. At first, I just thought I was a really bad mother. That sounds ridiculous, but it was a natural reflex to think that it was all my fault, that I had taken a crucial misstep in parenting. I felt unfit.
I had no idea what autism was. All I knew was that Dan was starting to fade away. It was the story you hear so often: the sudden drop in eye contact, less typical babble, less connectedness. He even stopped trying to walk. He just wasn’t as interested in the things around him anymore, including me. I tried harder and harder to connect, and at first concluded that Dan just didn’t really like me. Can you imagine thinking that your eleven-month-old child just doesn’t really like you?
He did seem somewhat interested in music, so we did a lot of Mommy and Me music classes. I would do anything to get him engaged, working for his laughs like a crazed monkey. Most of the moms clearly thought I was a little overboard, but unless I got that silly, Dan would tune out. Well, everytime we would finish a song, all the mommies and kids would clap. Except Dan. Needless to say, I would get sillier everytime a song ended, cheering like an idiot and clapping my hands like my life depended on it. At this point, making friends with any of the moms was no longer on the table, but I didn’t care.
One day in class, the song ended, I was going insane with my clapping and cheering, and Dan waited about 30 seconds. Then, all of a sudden, he started to clap and said “yay.” Now, this has never happened again. And although I can get him to copy me at times now, it was never again quite like that day. Right after that class, I was the most happy and the most sad I could be at the same time. I praised him and cheered him all the way home for saying “yay,” but somehow I sensed that he wouldn’t be doing it again. I’d realized that day that it wasn’t just that Dan was complacent or disinterested, it was much more. It shouldn’t take this much to entertain a one-year-old, I thought. Within a few weeks, we learned about autism, and it quickly superseded everything else in our lives.
Anyway, this is about Mother’s Day.
I remember one Mother’s Day in particular when Dan was having tantrums almost ninety percent of his day. I took him to the park to try and make him happy. It was cold and rainy that day, but that’s the way Dan liked it. We had to be out all the time. Rain or shine, night or day, we were out. I tried to engage him in swinging, playing, and even just running around, but Dan would have none of it. Eventually I just caved in to my sadness. I dropped to the ground and cried, something I never do, right there in the middle of the park, alone and isolated in the middle of New York City.
Another mom who was playing tag with her son came over to me and asked, “Are you okay?” “No, do I look okay?!?!?” – that’s what I wanted to say. But I just said I was fine. I couldn’t handle sharing that I was mad that Daniel and I had to go through this, that I was jealous that she could connect with her child and play with him, that she could be loved by him the way I thought love looked like. That she could have a great Mother’s Day and make her son happy. All I could tell her was, I’m okay…okay?
Any Mother’s Day from then on was always somewhat of an assessing point for me, like birthdays. And Thanksgivings. And Flag Days. How was Dan doing? Was his program working? Was he going to be okay? And, of course, I’d have to indulge my fear and leap to the most dreaded questions. What about his future? What will he do when I can no longer take care of him? Who would make sure he gets out enough? Who would drive themselves almost insane to make sure we were consistent with all his therapy, vitamins, meds…? Who will keep him from hurting himself so badly? As the years passed, it was clear that Daniel was not like some of the kids you hear about, where early intervention works like a charm and they are mainstreamed after a few years. For Daniel things come slower. He would have to proceed at his own pace, a pace that would often take steps backwards and sideways.
There are times that stick in my head, when something clicks for Dan, the interference clears up, and he does something I didn’t think he could do. Sometimes these are breakthroughs, but often they’re just fleeting moments that remind me that he’s in there and he needs me to help him break out. These moments keep us going. As with the time Dan finally clapped and cheered in the music class, I can recall with perfect clarity each and every one of these events. And yet I can’t tell you what I ate for breakfast today. I can only tell you I’m sure it was unhealthy, and probably made me a little fatter.
In the early years, I became more of a behavioral therapist than a mom. This pretty much seemed okay with Dan, because in these beginning stages of his regression, he seemed to have not remembered that I was his mom. I was a good appendage, but he didn’t really seem connected to me.
Even when he weighed well over 25 pounds, I would carry him and walk with him everywhere, as a sort of all-day physical therapy. Every time I would pick him up, I guess I would say, “Oy, what a heavy baby” and hug him. But one time, I picked him up and he said “heavy baby” as clear as day. I was beyond excited, and tried to recreate the moment about a thousand times throughout that day to no avail. Actually, I tried for the next year.
Another time, Dan was having one of his tantrums, but it was a “good” tantrum, as it was clear to me that he wanted something. I just had no idea what that was. Finally Dan calmed down and said “juw.” He wanted juice! I said with great energy, “You want juice!?!?!?” And he looked at me for the first time and beamed. “Juw!” he said again. We had a moment – one that screamed, “I know what you’re saying/you know what I’m trying to say!” We were both stunned, which was great because we shared that feeling, too. We walked to the fridge and got juice. We had made our first real connection, like we were aliens from two different galaxies who’d had a breakthrough. This was more than a fleeting moment – it was the beginning of Dan being able to make requests. And it seemed I was starting to feel like his mom again.
So, back to Mother’s Day.
My favorite Mother’s Day was the last one.
Dan now lives in a residential school in Massachusetts, because he became too big for us to protect him from himself. The therapists there had started to worry about taking him off campus alone, fearing he was too fast or too strong for one person to keep him safe. We would have to pay for two teachers at a time for Dan to take trips outside. When one of us visits, we’re not permitted to take him out ourselves.
On this particular Mother’s Day, the teacher who was supposed to go out with Dan and me cancelled. For the entire day, we ended up staying at his residence. It was a beautiful day and we swung out in the backyard. All of the other kids were out with their families, so we had the place all to ourselves. We went back and forth from the backyard to his room all day. It was quiet and Dan was doing well.
One of Dan’s teachers came out to give us popsicles, one for Dan and one for me. We sat on the bench in the backyard and unwrapped our popsicles. Normally, Dan would never sit beside me and just eat a popsicle, but he came over and sat next to me so we were touching. We ate our popsicles in silence. Then he decided to rest his head on my shoulder. He sat there for a while as I talked to him about random things – the weather, how much I loved him, all the things we have done together, even making fun of some of the so-called cutting edge therapies we’d tried. Maybe twenty minutes went by. I started to apologize for any stupid mistakes I had made. At one point, and very appropriately, Dan laughed at me and said, “Momma.” I believe he was telling me it was okay, and that he loved me. That was the best Mother’s Day I could ever have wished for. I treasure those twenty minutes more than one could imagine.
To all the moms and their children with autism, I wish you a lifetime of those twenty minutes.
Michelle Smigel is an NYCA Board Member and co-creator with her husband, Robert Smigel, of the Emmy Award-winning Comedy Central event, Night of Too Many Stars.