Like a Promise

Every once in a while, Paul's Down Syndrome announces itself by its differences. 

This past week one of the schools my son might attend next year held open house.  Within moments, I knew it wasn't a good fit.  The program lumped Kindergarten to 2nd grade level students with developmental delays into a single classroom and while I know each year a class dynamic changes, what I didn't see in any child anywhere, was someone who resembled my Paul.

There were some non verbal kids, but none as non verbal as mine. 
Some needed assistance with hygiene, but usually owing to a physical restriction, not a developmental capacity to willfully and consistently act.
There were kids with Down Syndrome, and yet I knew, I could tell, Paul would struggle to keep up with them on the playground and in the classroom. It did not feel promising.

I've been a special educator.  I know how a setting like this works, and I know when a child is the lowest or the highest by too much, there is tremendous frustration both for the child and the educators.  You want them to flourish, and with all the strikes against a child with developmental delays, you don't want to waste a year of instruction or even a day, in a placement where they will be bored, struggle, or simply not get the instruction and support they need to thrive.

As a mom, I felt protective and demoralized.  I didn't want my son alone.  I didn't want him isolated any more than necessary, and I could not see him being part of a group of friends when everyone there could tell the teacher and the class and even strangers what they had for dinner last night, and I can't get Paul to reveal what he's having for lunch while he's eating it.  It's an ache I haven't had to hold too tightly, as he is surrounded by siblings, he's been young, and he's small so his delay doesn't seem as great as it actually is when I put him in a classroom with children closer to the scale by which one is usually measured. But that day, I felt the weight of it, and the promise that the weight would only get heavier as time passed.

It happened again at mass, when Paul squirmed and chattered and laughed so loudly I had to take him out of the main body of the church and then even behind the double wooden doors, he proved his capacity to be mischievous leading to a hasty retreat to the basement.

Alone with my son, I really looked at him. His handicap doesn't normally plague my brain or my heart.  But today, it ate like acid on my mind. He's five. He's not potty trained.  He's five. He should be in Pre-school. He should know his ABC's and be able to count to ten and ride a bicycle with training wheels.  He should be able to walk to the car holding my hand and not require a death grip to ensure he doesn't bolt toward the street.  I groused at God, "I thought following you meant my burden would be light, the yoke easy.  This doesn't feel easy. I can't even stay in the back of the mass staring at it through the splinter crack of the two doors!" My heart whined with a two year old's "You promised."sort of pain.  My hurt must have shown on my face because another woman came down the stairs with her son, twice my son's size but also evidencing a developmental delay. 

I didn't know her, but she stopped and hugged me.  "Some days are like that." she said, and told me her story of her husband leaving before he was born, of her son being the same age as mine, and in a special program.  The bathroom momentarily forgotten, her son began racing back and forth in the hallway with mine in an improvised unspoken game of tag.  I was being shown, he wouldn't be alone.  Her son asked me his name, "I'm Stevie." he said.  Paul ran after Stevie and I heard something from my son that could be his name.   He'd keep up in his own way, and there would be friends for my son. It felt like a promise.

They'd sat behind us in the pew back when we were sitting in the pew.  I'd noticed the woman next to her,  a woman the same size as her, but with a face identical to my son's.  This lovely person hugging me took care of her sister for her parents when care was needed in addition to her own only child.  When we returned to the mass, I knew why we all had to be there that evening. It wasn't the normal mass time for either of us, but she had come with her sister and her son for me and mine.  Having her sister made her less afraid to have her son.  Having both made her able to hug a total stranger who was having a hard mass day because she knew the cross I was carrying, and how momentarily heavy it felt.  The stinking pity party I'd been having evaporated by the mere touch of the hem of Christ's garment.  The weight lifted, my heart lightened and all it took was a game of tag in the church basement and a hug.

We exchanged numbers and though I haven't called her yet (she told me she'd be on vacation this week), every time I see her name written in green colored pencil on the scrap of paper as I rummage through my purse, it gives me a bit of hope about Paul's future.  I've got another visit next week for Paul's placement and a play date to schedule with Stevie.  And his future, though as unknown as my own, feels like a promise of lighter days to come.