In the days and weeks after Maggie’s regression, as the words “autism” and “on the spectrum” became part of our every day vocabulary, I spent a lot of time reworking my expectations.
I expected our priorities would need to shift.
I expected to worry for Maggie in all sorts of new ways.
I expected that we would get our heads wrapped around it all and things would, eventually, feel a little less raw.
But one thing I did not expect is how much I worry about Sam within this new context.
What does this mean for him?
How do we meet Maggie’s needs without compromising his?
How do we find a balance for him.
We don’t want Sam to feel burdened by what Maggie goes through, but we also want to instill in him a sense of responsibility to help her navigate the world.
We try to find his balance… we fail in so many ways, but we try.
We make time separate for him.
We involve him in her therapy when he indicates interest, which he frequently does.
And we make damn sure he knows he’s a necessary part of her progress, that none of us could do this without him.
A couple months ago he came home from school, where he and his friends had been talking about their “babies.”
“My friend’s baby is one year old,” Sam said. “How old is my baby?”
“Maggie is one-and-a-half,” I told him.
“My friend’s baby says hi, bye, mama, dada, and doggy! Why doesn’t my baby say these things anymore?”
“Because Maggie has a hard time with words,” I said. “She will say all those things again eventually.”
That was the first time Sam seemed to notice his sister’s difference.
Now, Sam has recently picked up translating Maggie’s needs.
I’m not quite sure how to explain the pride I feel watching these one-sided conversations where he asks her preference and somehow magically knows what she wants even when I don’t.
Over the last couple of weeks Maggie has started saying the word “see.”
It can mean see, or it can also mean this, shoe, sing, sissy, sit, swing…
As I made lunch yesterday, I held up half a dozen different food options for Maggie and she got frustrated, waving her hand and yelling “nah” or “dah” at each choice.
I held up a cup of mandarin oranges and she waved at it and yelled “see!”
I wrote it off as yet another denial and went to put the oranges back in the fridge…. meltdown commenced.
Sam came running over, “but Mom! She said ‘yes,’ see is yes sometimes!”
He was right.
The girl just wanted some oranges.
And it was a good opportunity for me to reinforce for Sam that whole I couldn’t do this without him thing.
Shortly after that, the two of them were having a really sweet moment.
Sam was playing peek-a-boo around the side of the couch with Maggie and she was totally locked in and giggling each time he popped out yelling, “I love you, Maggie!”
Sam suddenly stopped and looked at me…
“Mom,” he began with a frown, “why doesn’t Maggie say ‘I love you too’?”
“Maggie tells us she loves us with her hugs,” I told him, my chest tightening a little. “She’ll say it in words someday.”
“Maybe when she’s four like me,” he said and the smile returned to his face.
“I hope so, buddy,” I replied.
He is so good, this boy. So patient. So loving.
I hope he can see that she loves him so deeply in return, even if she can’t say it, that she saves the best smiles and giggles for him, that she watches every move he makes and looks to him to ground herself in uncertain situations.
I hope he can feel it from her, the way I can, even if we don’t hear it in words.
Finally, last night as I tucked Sam into bed, he said his prayers. He thanked God for all his favorite people and his home. And then this exchange happened…
“Thank you for my family,” he said. “The light that shines in the darkness.”
“Oh, Sam,” I said, absolutely stunned. “That’s beautiful. Our family really does shine…”
“No mom,” he interrupted. “I mean the light… right there on the ceiling. I like it when it’s on.”
He didn’t quite understand what made me laugh so hard then.
This son of mine…
He’s so observant and patient and kind.
He is resilient, and this life with his “Sissy,” this is his normal and he isn’t worried in the least what that means compared to anybody else.
Sometimes he wonders about his sister.
Sometimes he does worry about things that are too big for him.
Sometimes he is the comedian or interpreter that holds us all together.
And sometimes, he’s just a silly four-year-old who’s thankful for a ceiling light.