The Weight of it All

The memories came flooding back – ones that had never really left me in the first place.

That morning I hailed a taxi, even though we really couldn’t afford the upwards of $20 to make the trip downtown, packed a lunch for D (How would he eat? Would he eat? He didn’t know how to feed himself properly. Feeding is such a problem. Would they warm his food up properly?), put a few school supplies in his backpack that we had bought the night before at the only K-Mart in Manhattan, and took D to his new school.

He had just turned three.

He had his brand-spanking new autism diagnosis, a blind trust in the world and a mother consumed with fears, worries and a drive to do something, anything, to help him. Aside from us doing a “mommy and me” class at the 23rd street YMCA — where the moms and caregivers left the kids to play with the teacher for half an hour while we went to another room to chat about whatever child rearing challenges we were having (a story for another day) – D had never been apart from me.

And so there we were that fall morning, about to part ways while he attended his first day in a preschool classroom at an autism day school in New York City.

I remember the day as a sum of painful parts – snatches of the actual experience that are seared into my brain while the entire memory is seized by fits of painful emotions.

We exited the taxi after it pulled in front of the school. I gripped D’s hand tightly in my own, telling him what was going on – D, this is your new school! You are going to go to school here, and I’m going to walk you to your classroom and meet your teacher with you! Inshallah it’s going to be very good. Let’s say bismillah and go in.

I feel like that is what I probably said, or some near version of that – nervous chatter as I began walking him across the small patch of lawn in front of the school.

What I do remember clearly is this:

As we made our way to the glass front doors, a teenager burst out with several teachers and aides right behind him. To my young twentysomething self, clutching the hands of her barely three-year-old son with a new autism diagnosis and extremely limited verbal language and understanding of what was happening, this teen seemed like a young man – tall, big and imposing. A danger to himself and others around him.

I scooped up D in my arms and stopped in my tracks briefly. Four teachers surrounded the young man and spoke to him, trying to help him find his calm. But as things continued to escalate, they quickly performed a restraint hold on him – pinning the young man to the ground in a manner that I’m sure was done according to strict safety and protocol rules, but at the time seemed shocking and alarmingly aggressive to me.

It was loud, unfamiliar, overwhelming and frankly frightening. This was to be D’s school. This was the building into which I was taking him inside – where things like this happened.

This was when the reality of all that is messy, hard, challenging, impossibly scary, and paralyzingly difficult about autism blindsided me. The positive, the good, the triumphs, joys, moments of breathtaking clarity were all to come. But in that moment, it was all fear and shock.

What do I do? What do I do? Take my baby inside and drop him at his classroom or turn around and go right back home? This was my baby – my precious child who would do whatever I asked him to. His trust in me was absolute. But my ability to explain and placate him in a way that I could be certain he would understand was bound and gagged in the mysteries and unknowns of a new autism world.

Would he understand what was happening? Why it was happening? That I would come back for him? That I would protect him always, even when I was thrusting him into unfamiliar and unpredictable situations? Would putting him in the hands of an autism teacher in that school be the right thing for him? Could I do better by him?

How do you even begin to make that decision?

This was my baby.

**********

Last week, amidst a flurry of snow days and delayed starts that had been plaguing us since winter break had officially ended, I drove D in to his school when it opened after yet another closing. After butting heads literally and figuratively on and off for a few weeks, we were both ready for a break from each other and a return to the regular school routine.

The morning had not gone well. D was upset and yelling, and I – in what was not my finest parenting moment – yelled back – I know this is hard for you D. I know there are things you cannot help, things you may not understand. But you are one of seven people living in this house. You have. To. Calm. Down. Stop yelling. Think of your family. You’re not the only one around here.

He yelled and body-writhed some more.

Knock it off, I loudly hissed at him, not wanting my in-laws to hear me losing my cool. Like I said, not my finest parenting moment.

Our car ride to school, however, was quiet and calm. D was happy to head back to school and probably get away from me, and to be honest, I was ready to get some space from him. It’s not all autism, you know. It’s parenting a moody, stubborn 17-year-old young man.

We pulled into the parking lot of his building, and I walked him to the door, where one of his teachers was waiting and exited to meet us outside. There is a crisis going on with one of the students in D’s classroom, he said. Let’s go in through another door.

So, we walked around the corner to a side door and knocked to be let in. Another one of D’s teachers quickly came out and pushed her back up against the door. I could hear the student pushing and battering up against the door behind her, trying to get out.

Sorry, she said. You can’t come in from here either. The student is trying to elope. Go through the front, and take D to the other classroom, not his, she told us.

By this point I was alarmed. I knew which student they were talking about, and though D himself is now a strong, strapping 17-year-old young man, I no more wanted to walk him into that building then I did when he was three-years-old on his first day of school.

But before I could say anything, D was happily walking away from me with his teacher to the front door. In a second, he was gone.

I sat in the parking lot for a few minutes, overwhelmed by the situation and the memories it brought back. A lifetime of parenting D and his siblings, half stumbling-half shepherding him through a myriad of complicated, difficult situations, had left me barely surer of myself now then when the journey was in its initial stages.

I crafted a long, emotional text to my husband, in the middle of which my phone rang. It was him. How’s it going?

This sucks, I told him, my voice trembling with unspilled tears. How is this still happening? How is this still his life? How am I still sending him into buildings where crises are occurring?

It was a both fair and unfair statement.

In 2003, with very little by way of information on autism on the internet, with no social media networks or online autism groups to tap into, with a decidedly negative trajectory being pushed forth and the absence of autistic voices not even registering in our collective radars, the decisions we made by way of education, therapies, medical and biomedical treatments, diets and supports for D to me weighed heavier than anything I had ever carried.

In 2018, that weight feels no lighter, even with the plethora of information, the learning, growing, listening, understanding, the research and options laid forth.

There are still crises that happen at school; there is still the pain of letting him go. But there is also a tethered, unbreakable connection between us, in that he knows I will always come for him, I will be as close as he’ll let me be, I will listen so much better to him then to my own judgment, and I will bear witness. The weight of the love outweighs the heaviness of the unknown and doubt.

That is what has shifted in the 15 years since that brand-spanking new diagnosis entered his and our lives.