Last week my husband and I went to an autism support group meeting in the town we moved to a few months ago. Fourteen of us sat around a table, introducing ourselves and telling our stories.
One of the moms couldn’t get through her story without crying. Her son had only been diagnosed two months ago. I teared up with her, remember those early weeks of not even being able to say the word “autism” without feeling overwhelmed.
“He lines up toys.”
“He never stops moving.”
“He can’t tell me what he wants. He can’t even point to things.”
“He runs away from me when we go places.”
The rest of us nod our heads in empathy again and again.
James was diagnosed five years ago. I read the books, consulted Dr. Google (and real doctors, some of whom were less help than Dr. Google), and started all the therapies that were recommended. I saw autism as a problem to solve, an enemy to defeat. Jenny McCarthy would call me for advice. We were going to be one of the miracle cases.
The mom who had just become a special-needs mom asked questions about what our kids could do. Can they talk? Can they read? Do they sleep at night? Do they eat a variety of foods? Are they out of diapers? She wanted us to assure her everything would be ok. That the worst case scenario she was creating in her head wasn’t her future. She would be a miracle case mom.
But I couldn’t honestly paint that picture for her. James’s words are mostly echolalia. He can’t read. He doesn’t always sleep through the night. He doesn’t eat meat (except for Chick fil A nuggets but who can blame him for that favorite?). He still wears diapers.
Her worst case scenario is my normal.
On our way home my husband and I talked about those early days and how far we’ve come. It doesn’t seem like a long journey to others I’m sure. It has taken years to travel inches instead of miles.
But we are so thankful for each and every inch. For each new word. For new foods tried. For hours he does wear undies instead of a diaper. For grocery store trips when he easily holds our hands and walks through the store without a meltdown. When he stops running when we ask him to and comes close enough for kisses.
We’re witnesses to a miracle every day, even if we’re the only ones in on the secret.
Be encouraged if you’re still in worst case scenario mode. Your definition of normal will evolve. You’ll find joy in moments you can’t even imagine. Your definition of miracle will change.
A few years from now we can sit at that support group meeting and tear up with a new mom who can’t see life past the diagnosis her child has just been given. But we’ll smile at each other, knowing that our worst case scenario turned out not so bad and her’s will too.