(Avocado) Toast Is Life

This blog entry is a call for help! Seriously, I need help.

Once I saw a story about an autistic boy who would eat ONLY donuts. Not one other food item passed through his lips. So his parents let him eat donuts all day long. My husband was horrified. I totally got it. I hope that kid didn’t develop diabetes or balloon to 600 pounds, but I had sympathy for everyone involved in that situation.

Truth #1: Although she’s not as limited as the donut kid, to say Maddie is a picky eater is an understatement.

Truth #2: You can’t really force anybody to do anything, at least not after you can no longer physically pick them up anymore. And you definitely can’t force anybody at any age to EAT anything.

I’m sure a percentage of you is thinking, “Uh, yes you can. You serve them food, and eventually they’ll get hungry enough and they’ll eat it.” If that is you, my friend, you haven’t met Maddie. You have also probably not met a person with autism.

Maddie does like donuts, but luckily she likes more than donuts. But only about three things more. She hasn’t really eaten fruit since she stopped eating baby food, which was kind of a long time ago. OK she eats one fruit, but it’s the least fruity of the fruits. It is the magical and delicious avocado. Her pediatrician at one point did say, “That’s the perfect food!” and I was delighted because that was about the only thing she would eat that actually just grows and then you just pick it and eat it. I mean, OK, we usually cut it up or smash it and add garlic salt, and nobody eats the skin, but you know what I mean.

Her other likes are in the category of “white.”  Pasta…with butter and cheese. Rice…with butter. Vanilla ice cream on a cake cone.. String cheese or white cheddar.

White, white, white.

“Toast is life” is her mantra.

Luckily she’ll eat eggs. So I have mastered the scrambled egg. On toast, of course.

She also likes honey roasted turkey and, very specifically, cold, dark-meat chicken with salt.

She will also eat cheese pizza without too much sauce, but only on occasion.

And then there’s the real crap, like Cheetos (not white, but also not really food) and the very occasional and appropriately maligned fries and chicken nuggets from McDonald’s. (Question: what is the voodoo they use to make you feel both stuffed and hungry at the same time? I don’t know but it scares me.)

And there you have it: her diet in a nutshell. There are probably a few other white foods I’m leaving out, but you get the idea. (Oh, yeah, pancakes and French toast and croissants).

Several months ago she announced she had decided she should eat an avocado every single day. I was surprised that she was thinking much about anything with the word “should” in it. But now I try very hard to maintain our supply of avocados, which at the moment I’m failing at because yesterday she discovered the most magical of food combinations—avocado toast—and that’s pretty much all she’s eaten for the last three meals. That’s good because it’s better than the old avocado with chips snack she favored, in which one molecule of avocado is consumed with each chip.

Also yesterday something incredible and exciting and terrifying happened: Maddie asked me how she could lose weight. Incredible because she that’s a sign of her own self-awareness that I rarely see. Exciting because her health would benefit from both weight loss and a better diet. And terrifying because she is so darned picky that I don’t know how or even if I can help her make this happen.

“Are you not happy with your body right now?” I asked her.

In response, she wiggled her hand to say “so-so.” She didn’t appear upset in any way, just informative and practical, which was a huge relief for me.

I said, “Well, what I do when I want to lose weight is I cut back on things like bread and pasta and try to eat more fruits and vegetables.”

Simple? Yes! Easy? God no, especially not for this kid. I like salads and certain fruits when they are perfect and in season. I like lots of green things. So I can adjust my diet pretty easily. But what do you do when you can’t force yourself to eat fruits and vegetables?

This is not simply a preference for Maddie. This is where her previously overwhelming sensory issues, which have otherwise mostly vaporized, still rule her life. Trying new foods isn’t just a matter of interest or lack thereof, it’s a matter of fear. Even if this new flavor might even be OK, there’s a good chance the texture might be a dealbreaker.

But for the moment she is curious and even a little bit open to expanding her repertoire. Part of me wishes she would have waited about a month to bring this up because I was reserving my mental energy for the final school push. And now this is consuming my thoughts.

How will I help her? CAN I help her? Who can help me help her? Who knows how to help a person with such serious food aversion change what and how they eat? What might she like? I would be happy if she added two new fresh foods to her diet. Just two! That sounds doable in a way, but an insurmountable problem in another way.

I will try to combat my fears and anxieties with doing things and learning things. We will try together. We will take teeny tiny baby steps. This, like everything else with parenting, is about the long game. And so, we shuffle one foot forward and look forward to moving the other one.

Ninety Percent Happy – A Camp Debrief

Today was camp pick-up day. After 24 days without Maddie, it was time for the family to reunite. Or at least three of us. My teenage son thought those three and a half weeks went by a little too quickly. “Does she get back next weekend?” he had asked. “No, tomorrow,” I clarified, and disappointment washed over his face.

Part of me didn’t want to do the pick-up simply because of the drive. I had recruited my husband to make the trek because of my hate-affair with long car trips, but since we could at least share the driving, I decided I couldn’t miss out. An excellent choice on my behalf as it turned out.

Pick-up day at this particular camp is also performance day. After having lunch together with the campers, parents can see what their kids have been working on for the last ten days. I always go to performances or games or whatever my kids are up to (and sometimes just to see their friends). I LIVE for this stuff. But the last few times Maddie went to camp she participated in workshops that didn’t end in a performance, so I wasn’t expecting to see her do anything this time. Typically we would have lunch and then listen to a brief talk by the camp director, then grab her luggage and split. So really the only reason to go would be to to give her a giant hug and dip my toe in the camp experience before summer was over and see her happy face.

I knew for sure she’d be happy. For one thing, camp is the highlight of her year. ALWAYS. Second, I was actually able to speak to her half way through. Campers can’t have phones, but Maddie stayed for a four-day between-session mini-sorta-camp thing and during that time was able to use a counselor’s phone.

I received this text:

“Hey, it’s Maddie, your daughter. Could you call me on this phone? Anytime.”

And then, before I could respond:

“Can you send me some stuff? My Bose speaker and the power cord. And my SIM card. And can you go on Amazon and order some Liquid Ass and send it here?”

I called her shortly thereafter. She was in good spirits, partly because she was in a bowling alley at the Santa Cruz Boardwalk at the time. She sounded happy and relaxed.

“Can you also send me a banana suit?” she asked.

“Did you say ‘banana suit’?”

“Yup.”

“Sure.”

After a brief conversation about camp, I handed the phone to my husband so he could chat with her, and brought up Amazon.com on my computer to order Liquid Ass and a banana suit.

I wrote a note to my husband, who was still on the phone with Maddie: “Ask her if it’s the fart spray.” Eventually he nodded and gave me a thumbs up. I placed the order as if it were for toilet paper and toothpaste. It did occur to me that perhaps a “for what?” might have been in order, but it hadn’t crossed my mind to ask until it was too late. Maddie gets ideas and she makes plans and sometimes they involved fart spray and a banana suit. Business as usual at our house!

So two weeks later, there we were to retrieve our happy camper. We hugged a giant, long bear hug. I noticed her hair was clean and brushed and I was so happy about that. Even if that was the only shower she had taken (although I was sure it wasn’t), at least she had the foresight to be clean for the parents. We had some surprisingly delicious barbecued chicken and grilled vegetables for lunch. Maddie had already eaten a turkey sandwich. A TURKEY SANDWICH. Mind. Blown. She likes turkey and she likes cheese and she likes bread, but she has never ever eaten a sandwich. Whenever meals weren’t to her liking, she asked the kitchen staff for a sandwich. A SANDWICH.

After the campers and staff gave an enthusiastic performance of this year’s theme song,* it was time for performances.

“Are you in anything?” I asked, expecting the answer to be, “No. Let’s go home. I’m tired.” But instead the answer was, “Yes, rock band and film.”

Alrighty then, we would be staying longer. We converged in the dining hall/performance room and first watched dance and  musical theater. But the big star of the camp is rock band. Probably half the camp participated in that workshop. The first act got on stage and Maddie was nowhere to be seen. It was a full rock band (maybe five instruments) and two singers. Maybe she comes in during the middle, I thought, and shakes a tambourine or something. But nope, the song was over and another group took the stage. Different kids, different song, but pretty much the same setup. Still no Maddie. By the third song, I was starting to wonder, and then she stepped up with a microphone in hand. The band got set up and Maddie belted out “The Way You Make Me Feel” by Michael Jackson. All alone up there, with occasional backup from the rock band coach. She looked pretty natural on stage, moving her body and holding the mic with confidence. She sang from her belly and her heart. She wasn’t the best vocalist, but she was certainly among the most convicted. I was in awe. She just blows my mind sometimes. I was so proud of her and happy for her.

And then, unfortunately, I started to think. Maddie was the only solo act, and I knew it wasn’t because she was the best. I also noticed that half the band was camp staff, unlike the other groups. Ugh. The sadness started to mingle with the joy. Did nobody want to sing with her? Did the staff step in where campers wouldn’t? Is this the “special ed” performance?  Even at this magical camp, is she on the fringe (a word her kindergarten teacher once used to describe her)?

She sure looked happy up there, though. This is a kid who loves to belt it out, and she got it do it with a band. If any of my worries were rooted in truth, she didn’t seem to notice. I was mostly happy, and a little bit sad, and then a little more sad because I wasn’t 100% happy as I thought I should have been.

A couple more groups performed, and then the entire “mega band” took the stage for a rousing rendition of “Burning Down the House,” a suitable song for the band and for the moment. Each singer had a few solo lines, and Maddie pulled hers off as well as anybody. Or at least I thought so.

Finally, it was time for film. Maddie’s film was a camp-ified version of Harry Potter with a few jabs at the Spiderman movie franchises. She had come prepared, somewhat unknowingly, with her sorceress costume, and ended up with a relatively big role. It was clever, funny, and well-edited. Whent the film ended, Maddie said her goodbyes, and I signed her up for next winter and summer.

And then it was time to pack up and go home, my heart full of gratitude for the camp, joy for the experience my kid gets to have, and yet a little conflicted inside.

But before we could actually embark on our two-hour return trek, there was a stop to be made, for in the tiny mountain town near the camp, there is, of all things, a costume store. There are maybe 15 businesses in that little strip of downtown, so the presence of a costume shop was more than surprising. Maddie directed us where to park, and we walked a half a block to the store. She had her eye on something from a visit during the in-between-camps excursions, but she hadn’t had enough money to buy it. It was a gold lame, pleated, wing-style cape of sorts. Of course her plan is to modify it somehow (that’s how she rolls) and give it some kind of flame effect at the bottom. And then she saw some lights for costumes and a plan was born.

Aggie, the proprietor, remembered Maddie from her prior visit. She could see how important costuming is to Maddie and searched high and low for a red dress she had that might complement Maddie’s fiery vision.

“She can come work for me anytime she wants,” Aggie offered. I could tell she had Maddie pretty well figured out. She said she has other girls who work there about two hours per week.

My first thought was, of course, I wish the store was closer to our home. My second thought was, “Hmm. Maybe I could drive her down here once a week for a couple hours.” Part of me thinks that’s crazy. The other, more correct part, thinks it would be totally worth it.

We purchased Maddie’s carefully chosen items and, although Maddie wasn’t sure she was finished, I talked her into concluding her visit by promising to bring her back.

So now w’ere back at home and everything is back to normal. Or whatever normal is to us. I am bugging her to take a shower. I have a fussy eater to cook for again. I’m fretting about embarking on the new online school program, which is still rather nebulous in my mind. I’m suddenly back to my usual stressors. And I’m pretty bummed about that.

All my emotions are back. The pride, the fear, the joy, the worry, the amusement, the frustration. It’s all back in the swirling vortex of motherhood. I feel like my brain is literally spinning in my head.

Camp was good for all of us. Back to reality.