[Note: we wrote this post more than a week ago and forgot about it. Things came up, you know. Anyway, here it is.]
When Stacy arrived home with Susan and Ethan on the afternoon of Christmas Eve, we were understandably too overwhelmed by fatigue (in Stacy’s case) and unpacking (in Bernie’s case) to make many of our usual holiday preparations.
Before they arrived, Bernie managed to set up the tree, the menorah, and a few strings of lights. But he hadn’t wrapped any gifts, and neither had Stacy. We figured we’d have dinner, get the kids to bed, and then get cracking with the unpacking of the van and the wrapping of gifts.
Susan had other ideas. “It’s time to bake cookies for Santa Claus,” she told us after dinner.
We didn’t have any cookie or cake mix in the house (a rarity for us) and Wegmans was closed (a rarity for them). Plus, making cookies would take an hour or longer, and it was definitely bedtime for the kids. What to do? Stacy decided to improvise.
“Susan,” she said, “did you know I talked with Santa’s elves earlier today?”
“You did?”
“Yes, and do you know what we talked about?”
“What?”
“They asked me where we’ve been all this time. I told them that we were in Baltimore, and one elf said, ‘Really? Where in Baltimore?’”
“Did you tell them we were at KKI?” Susan asked.
“Yes, I did. And guess what? The elf told me that Santa Claus went there, too!”
“He did? Why?”
“You’ll never believe this, Susan, but they said Santa was feeling sick after he ate all those cookies and candy and milk that everyone laid out for him last year. Think about it, Susan, think of all the houses on this street — Bernie, how many houses are on this street?”
“Twenty-one,” said Bernie, trying to hide a smile.
“Twenty-one houses, Susan! That’s a lot of cookies. Anyway, the doctors told Santa that he has food allergies.”
“Really? He does?” exclaimed Susan.
“Yep. And so he can’t eat cookies or drink milk anymore.”
“Just like me!”
“That’s right.”
“Then,” said Susan, “he probably has to eat fruit like me, right?”
“You got it, Susan.”
“Okay,” replied Susan, “let’s put out some carrots and apples for him, Mommy. I bet he’d like that.”
“Oh, he’ll appreciate that SO much, Susan,” said Stacy.
You get the picture. So Susan and Stacy laid out a nice nutritious, non-allergenic snack for Santa while Bernie got Ethan ready for bed, and the next morning, Susan came downstairs to find a note from Santa thanking her profusely for thinking of his food allergies. “I couldn’t eat anything at the other houses,” wrote Santa, “but imagine how happy I was when I came down your chimney tonight to find all this fruit!”
Okay, maybe necessity is the mother of invention, and maybe our story helped us save a little time and energy. But it did something much more important for Susan.
Stacy could tell by Susan’s glittering eyes how good she felt to know that someone — someone in whom she still firmly believes — had something in common with her.
That’s very important, we think, especially now that we’re back home. KKI was almost kind of a safe haven for Susan, a place where kids could express themselves freely and share common experiences without being judged by others who may not have similar issues.
Nobody looked at her and said “why won’t she eat?” Nobody called her “little Susan.” There were other kids there just like her. In fact, many of the children had more severe issues, such as developmental disabilities and feeding tubes.
Here, though, Susan is back to being the only kid on the street and the only kid in her class who can’t eat most foods, not to mention that she’s by far the shortest child in her class. It’s vital that Susan continue to feel that she isn’t alone, even if she has to cite Santa Claus as her compatriot.
And Susan isn’t the only one who found out at KKI that she wasn’t alone.
Being a deaf parent at KKI presents a special set of challenges, not least of which is that it was often difficult for Stacy — even as sociable as she is — to participate in normal informal conversations with the other parents there. You’d think an interpreter would help, but (1) the interpreter wasn’t always there, and (2) most hearing people who haven’t encountered deaf people before feel awkward conversing through an interpreter.
Those informal conversations are crucial. Parents share their children’s feeding experiences, rumors they’ve heard, their impressions of certain doctors and therapists, and so on. It’s information, and information is power, especially when you’re trying to ensure the best possible treatment for your child.
Since she had limited access to those informal conversations, Stacy decided to establish a formal parents’ support group at KKI. After the administrators approved her request, the support group began meeting for an hour each week in the parents’ lounge. You’ve got to wonder why it was never done before, but better late than never.
The support group was a smashing success, and not just for Stacy. “I thought we were alone and now I know we’re not” was a common refrain. Which is exactly how Stacy felt.
At the same time, the other parents learned just how easy it was to talk with Stacy, and they even began to approach her in the hallways and playrooms to talk with her without interpreters..
We hope the parents’ support group will be a permanent part of KKI’s program…
