Coffee, Cookies, and Sympathy

I want to say something nice to all the other GFCF Mommies of the world. This is hard work and you are doing great, no matter how you feel. Here’s a cyber hug and some GFCF cookies for you, along with a steamy cup of Jamaican Blue Mountain coffee or maybe a soy or rice milk latte. Prefer a martini or some Redbridge Beer? I’ve got that too. Be nice to yourself. Remember that baby steps are ok. And if this GFCF stuff doesn’t work out for your child and your family, that’s okay too. Really. The ASD stuff is hard enough by itself.

Why am I writing this? A few things have happened over the last few days that tugged at my heartstrings and brought back painful memories of the Prince’s early diagnosis days. Guess those feelings never really go away, do they? Though, what doesn’t kill you does make you stronger.

Here’s what happened. We’ve been having car troubles and are using one car. I dropped off the Professor and the Prince at the therapy place where the Prince would have ST and OT. That gave me about 2 hours to drive to Whole Foods, do a quick shopping, and return to pick up the boys. Just enough time.

So I zipped to the store where I came across a mom and her son. The little boy looked to be about 2 and was in the main part of the shopping cart hiding under a blanket. The mom had a handful of those printed-out GFCFSF etc. product lists from the Whole Foods website and was putting food in another cart. She seemed frazzled and was muttering things to herself. I heard her say, “I don’t have any idea if you’ll even eat this stuff.”

I don’t know about you, but my ASD mom friends and I sometimes talk about “autiedar.” It’s kind of like “gaydar” (“Not that there’s anything wrong with that,” to quote Seinfeld!). But if you are on the spectrum yourself, or love or care for someone who is, you develop the ability to spot simpatico spirits. This was one of those situations. I was pretty sure little man was on the spectrum. But it’s a delicate situation too. You don’t just go up to someone and say, “hey, my kid’s autistic too! Let’s be pals!”

But this mom seemed so sad, frustrated, and overwhelmed. So I walked over to her and said, “let me guess, food allergies? My son is allergic to gluten and dairy,” and she just opened up the floodgates, virtually in tears. Her son was allergic to gluten, dairy, soy, and eggs. I caught a peep of him under the blanket and he looked like they had recently done the allergy patch test, he was covered with spots, poor baby.

I told her I wished I had more time, that I’d love to help her shop. Since we were at the dairy section, I told her what I knew about rice milks and “fake” cheeses. I told her we started our special diet when my son was about the same age as hers, and that it does get easier. I told her that once her son started to physically feel better, it would all be worth it. I gave her my name and phone number. In retrospect I should have taken hers too. We didn’t mention the “A” word. But I just wished I could have done more for her. I hope she will call me.

And, I still see her face. I was her three years ago. Except my sensory-seeker would not even sit in a cart. He was too big, for one thing, and he’d be trying to flip the cart to spin the wheels, or racing around trying to touch all the pretty fruits and veggies, or trying to take boxes off shelves so he could line them up. Ahh, those were the days. I remember a kindly-looking grandma once said to me at the store, “your son is so cute, too bad he’s retarded.” Thanks for your sensitivity, madam. These are the things GFCF Mommies have to endure.

But you eventually learn which brands of food your child likes. If you can, you arrange to shop alone without the Prince or Princess, at least until they learn the skills to handle the sensory overload of the grocery store, which may be never. You come up with witty one-liners to zing at rude strangers, even if you only think them to yourself. I know this mom will learn too. But it still takes some of the joy out of motherhood, at first. You learn to take joy in unexpected things. "Welcome to Holland" is an essay I love. But I equally appreciate the more cynical version, "Welcome to Iraq." Sometimes it can seem like that, especially in the early days.

Later, as I was web-surfing, I visited one of my online GFCF support groups and read a post from a mom who had been trying dietary interventions, but just couldn’t seem to commit and she felt like a bad mom, giving her child junk food because it was all he would eat. She just wanted him to eat something, anything.

I read another post by someone who had tried dietary interventions for several years. Religiously. And it had not made any difference in her child’s health or behavior. It’s a big spectrum out there, after all. Not all children or adults with autism require dietary interventions. If you give it the old, college try and see no physical or behavioral improvements, and you are really sure there are no underlying health issues like Celiac or true food allergies, it is ok to stop. All we can do is the best we can. And we need to provide random acts of kindness for each other, whenever we can.

More cookies? Another cup of Joe? Martini? It’s on me.