Tuesday, August 27, 2013

A Mother and Son Date: The B-Side

The Boy & I on our Mother & Son Date
I had this idea to have a mother and son date. The Boy and I are together all the time but our outings consist of errands, doctors appointments or shuttling him between boroughs.

On the weekends, its me, The Boy and The Husband. 


But The Boy's finally on summer vacation and I had a few days off. With no appointments or therapy on our schedule, I wanted to do something fun. Something memorable. Just us two.

If you follow us on Twitter or Instagram, our pictures look like we had a great time. And we did have a nice time but it came with more than our fair share of challenges. 
This post is what the pictures don't reveal about our day.


***  

We arrived at the Children's Museum of Manhattan (CMOM) shortly after opening. Within seconds, I felt unprepared and wished The Husband was there to help. The first floor was already packed with kids - many of them younger than The Boy. All running, laughing, playing.  Their parents watching from the sidelines, flipping through magazines, chatting on their phones. I followed The Boy around, hovering like I usually do.  My eyes scanning the room for exits and places he could hide.

The Boy darted from place to place, a grin from ear to ear, laughing too loudly. "Oh wow!" He yelled with much more excitement than the other 7-year-olds in the room.

We moved through the rest of the museum but none of the other exhibits excited The Boy as much as the first floor. So that's where we returned for one last run around before heading out to lunch. The room was still crowded.  But the boy was content playing on the slide. And for the first time that morning, I could sit and watch.

That's when they walked in. A group of special needs children and their aides - most likely part of a day camp respite program. Their ages must have ranged between 7 and 10, their disabilities varying.

There was one boy who caught my eye. He was overweight his belly hanging over his sweat shorts. He wore a button down shirt with only the top three buttons buttoned. And his undershirt was pulled up, exposing his large belly. I waited for one the aides to assist him, to pull his shirt down. None of them did.


I don't know why it bothered me so, but it did. I am so conscious of how The Boy looks, so aware of his appearance. It's the one thing I can control. If The Boy lifted up his shirt in public - I would have fixed it immediately. 

The aides wandered the floor aimlessly holding the hands of their kids. Not bothering to engage with them or show them around. The aides were too busy talking among themselves to bother with the children. The children were unlike The Boy, they were quiet, calm, content to be led rather than run.

Then I noticed the room got quiet. Really quiet. The packed room was suddenly empty. All the typical kids and their parents had moved on to other parts of the museum. It was just me, The Boy, the group of special needs kids and their aides. 

Was it too close to lunch? Or did those parents want distance from the kids with disabilities? It hurt too much to think about. 

Later, when I spoke to a friend about it she said "Not everyone is used to kids with special needs. Sometimes it makes people uncomfortable. They don't know how to act.

I know this is true. I have seen the way people try not to notice us. At times, I don't know what's worse - the blatant staring or acting as if we're invisible. My sister is in her twenties and has an intellectual disability and I have seen people shy away from her (not always strangers either - friends, in-laws and members of our family).   

If The Boy was a 'typical' kid, would I have left too?


***

After lunch, The Boy and I took the bus across town. There was a large playground and The Boy wanted to go in. The playground was much bigger than any one we'd ever been. Too many blind spots, too many pyramids and tunnels - too many places to lose him.

Again, I noticed the groups of parents sitting on the benches secure knowing that when they called out a name, their kid would return.

I bribed The Boy with the promise of an ice cream so that we could leave. 


***

We walked to La Casa Azul (a book store specializing in Latino authors) and The Boy was on the verge of a meltdown. I shouldn't have taken him inside. I should have just left. Instead, I held both his hands while I browsed. The Boy wanted to leave. But I wanted to make a purchase. And I so badly wanted to buy him a book from La Casa Azul.

The whole time he kept saying "I'm going to break all the books. I'm going to spit on the floor." For a fraction of a second I let go of his hand and The Boy grabbed hold of a statue - I thought he was going to crush it. I freed the statue from his grasp, grateful I was the only one who noticed what The Boy had done.

At that point, I knew we were done. I purchased my books and left.


***

On the train ride home, The Boy asked if we could go to the playground. It was still early and since he didn't have a chance to play in the big playground, I agreed.

It was all good until a little girl (about 3 years old) started to cry. And that. Set. The Boy. Off! He always gets upset when he hears/sees another kid crying. He stopped playing and just stared at the girl. The Boy's chest started pumping and tears welled up in his eyes. "She's crying. She has to go home," he cried pointing to the girl.

I walked over to him and led him to a nearby bench. He was sobbing and shaking. The Boy climbed up on my lap, burying his face in the crook of my neck. 


I asked if he wanted to go home but he wanted to stay. I should have just taken him home. Instead I sat there cradling and consoling my 7-year-old son while the other children in the playground stared.

When he was ready to continue playing, I told him we were going to stay for 10 minutes. "Put the timer on," The Boy said. 

A group of boys were gathered around the water fountain, filling up their water guns. I have to watch whenever The Boy gets too close to the fountain. (The last time we were in the playground, he saw a kid drink water from the fountain. Thirsty, but not knowing how to work the water fountain, The Boy attempted to sip from the pool of water that hadn't drained.) The Boy, watching the kids at the fountain, ran up and splashed them all with water. I made him apologize and led him out of the park. 

The Boy burst into tears again. "I'm going to break all my toys," he repeated. "I'm going to spit." He dug his nails into my hand. 


"Stop!" I yelled. "You are not going to break all of your toys. And don't even think about spitting."

Walking up the steps to our building, I saw The Boy gathering his saliva, ready to spit. I swatted his mouth. "What did I say about spitting!?"               

He pulled his hand out of mine and started to run away. He didn't get far.

Once inside our apartment, The Boy yanked off of his shoes and threw them at the mirror. Then he spit on the floor. I yelled at him again, grabbed him by the arm and marched him to his room for a time out. I needed space. I hate losing my temper with The Boy. I know it doesn't make a meltdown any better. I know I'm not setting the example. But I am human. I'm a mom. And sometimes, I completely lose my shit.   

That's when I started to cry. If The Boy can be this challenging for me now, what will happen when he gets older? When he gets too big and too heavy for me to send him to his room. Will he 'grow out' of this behavior? Or will it get worse? 

Why, I wondered. Why did a simple outing - a day that was supposed to be fun - have to be  so difficult? Why couldn't I ignore the behavior? Why couldn't I redirect him? Why couldn't we just have one day without a major meltdown? Why couldn't I get through to him? Why did The Boy have to have autism? That's the why I hated the most. I hate myself when that why creeps in.

I thought about the group of special needs kids and their inattentive aides. The parents and kids who left the room. The kids in the playground who stared as The Boy cried. The Boy playing alone in a playground full of kids.  

Was this to be our life? Or was this just our day? Sometimes it's hard to know the difference.

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AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.