I have a dear friend, Joyce, who has two sons with special needs. They each have significant special needs. Joyce is someone that I admire very much. I know she couldn’t handle all that she does apart from God’s grace. One day over lunch, she said the most profound thing to me. We were discussing some of the unusual ways that our boys function in their daily lives, and how we must function as their moms.
Joyce said, “It’s like playing Monopoly on a Scrabble board.”
That’s just one of the best descriptions I have ever heard about living with a child with autism, or many other developmental issues.
How on earth DO you play Monopoly on a Scrabble board?!! At first glance, I might say that you DON’T!! But as parents of our special children, we must. We have to be creative……flexible……think outside the box……and be very patient when all the pieces just don’t fit.
The bottom line is this……we just don’t have a choice. So we take the Scrabble board and figure out our version of Monopoly, often writing the rules as we make the plays……and changing the ones that don’t work.
Aaron has been doing so well lately that I’ve felt like I’m mostly playing Monopoly on a Monopoly board. Imagine that!!
Oh, we always have our Aaron moments because that’s just how it is. But he’s been unusually happy and kind lately, both at home and at his day group. He’s even wanted to help more around the house, including in the kitchen.
There are mornings that he hasn’t wanted to go to his day group, just like we don’t always want to get up and face our day. One morning he was getting upset about having to go to Paradigm, saying that he just doesn’t have a good time there.
“But Aaron,” I countered, “every time I pick you up, you say you had a good time.”
Not missing a beat, Aaron replied, “Well, the next time you pick me up, I’m gonna say I DIDN’T have a good time!!”
He didn’t see my smile as he huffed out of the room. He ended up going that morning and having a good day, by the way.
This past Friday, however, was just the reverse. He left the house happily. We enjoyed listening to our oldies on the way to Paradigm. He was looking forward to some shopping and pizza at the end of the day, after I picked him up.
I pulled up to Paradigm and saw him sitting outside with his friends. His face was red and he was minus his glasses. I just knew…..and I was right. It had been a meltdown day for Aaron, and who knows why? He had broken his glasses….again…..but thankfully this time I was able to pop the lens back in. His staff was talking to me as Aaron sat in the van beside me, red faced from crying. So instead of shopping we just went to get his pizza and then head straight home, where we continued to sort out what had happened. His behaviors were wrong on several levels, and dealing with it would take a long time, I knew.
Hand me the Scrabble board.
And that rule book that I’m working on, continually.
Yesterday we took a walk in Swanson Park, stopping at the recycling bins on our way. The bins were full, so we couldn’t drop our things off then. We enjoyed the park, the fresh air and sunshine, and the deer that we saw. Aaron had a good time, despite complaining of a sore throat.
Last night at bedtime I told Aaron that we might get some rain, and maybe some thunder and lightning. Aaron loves rain and he loves storms. He followed me up the hall after I delivered the hopeful storm news to him.
“What time?” he asked.
I told him that I didn’t know what time the rain or storms would come, but that if it happened, it would be later. As in not this very minute.
“Like when?” he asked.
I repeated that I didn’t know just when.
“Will it be later?” he continued asking.
Deep sigh……which he totally didn’t notice.
“Yes,” I affirmed. “The rain and possible storms could be later.”
I hoped to finally be finished.
Aaron followed me still.
“So we might not hear it?” he wondered.
The Scrabble board! Where’s the Scrabble board?!
Today Aaron is home with his cold. He is home with me, snorting because he doesn’t blow his nose.
I am re-reading the Monopoly on the Scrabble board rules about patience.
I was in the bathroom. Aaron stood on the other side of the door, happy because he had asked if we could try the recycling bins again. I had said yes, and had also told him that we would run an errand as well while we were out. Aaron sees all sorts of possibilities in the word “errand.” Most of which are in the form of food.
So there he was outside my bathroom door.
“Mom?” he began. “Are we going to recycle?”
“Yes,” I answered. “I said we’ll run an errand and do the recycling later.”
“What do you mean later?” he asked.
I wilted a little.
“Just later,” I replied.
A moment of silence.
“So what time?” he asked.
A Scrabble board in every room is what I need, with all the Monopoly pieces. Certainly in every area of life with Aaron.