education

(Avocado) Toast Is Life

Chris Irvine, Parent CoachLeave a comment

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.

The Experiment Continues

Chris Irvine, Parent CoachLeave a comment

In August 2015 I had what turned out to be a knee-slapper of an idea: The school year that was about to begin would somehow be The Big Experiment. Maddie was about to to start public high school as a sophomore after three years at a private special education school, and after a year of battling with her over attendance on a daily basis, and years of thinking and thinking and wondering and planning and getting disappointed and crushed and then reviving myself for the next round, we had decided This Was It: It was either This (the public high school)—or boarding school. The idea behind boarding school was since the kids sleep and wake up AT school, they can’t not GO to school. They’re already there! And that’s what I so desperately wanted for my bright, talented, interesting, lovable kid: to GO to school.  Well, and to not have to freak out every single morning over her refusal. I had felt the years of my life slipping away from me as the stress built up in my body and mind. It really was taking a toll, so something had to be done.

Nearly three years—and another new school—later, I realize how naive and narrow-minded my thinking was. The idea that somehow it would all sort itself out in that defined period of time is absurd to me now. What was I thinking? I don’t know exactly, but let me tell you, it got a whole lot worse before it got better.

I’m not sure how many times my therapist had to tell me that just because going to school was what I would have wanted, just because I thought the social part was important, or just because I really thought going to a dance was an important part of the high school experience, those things would necessarily have any meaning for Maddie. It wasn’t until Maddie basically quit going to school in October of her junior year (2016), and I fully gave in to the concept of her not going to school, that I also fully comprehended not only how differently we are made but also how perfectly fine those differences are.

We worked with the school to complete her junior year’s coursework basically in a home-schooling capacity.  But at the end of the year we had to make a decision. The public school is not in the business of home-schooling, we were told. The teachers and administration had been so accommodating! They had bent over backwards to make things work for us, but they could not continue merely sending home work for Maddie to complete without having her attend at least part of the time. They had revised schedules, reduced schedules, minimized the amount of time she would need to be there, but ultimately it just wasn’t happening, so we absolutely had to take another route.

If you are the parent of a child with special needs, you can imagine my mental state at this point. Every new attempt to make things work is fraught with anxiety because you know it may or may not work and then you’ll have to go through the process all over again. You’ll have to rethink and rework and research and try, yet again, to make the best choice for your child, knowing full well this may be just another attempt in a long line of failed attempts to get it right.

With the help of two consultants, we landed on public online high school for senior year. Online because Maddie could literally do school in bed. Public for several reasons: she would have an IEP and they would have to make accommodations; it follows the state curriculum so she would have a diploma from an accredited school in case she wants to go to college at some point; and it’s free. We still pay a lot of money to the educational consultant who works with Maddie twice a week and manages her workload, so free is a welcome bonus.

And guess what? It’s working! There have been ups and downs, particularly for me. Last summer during a meeting with our consultants, one of them mentioned she thought my motivation was to manage all of Maddie’s schooling for this year. “Um, nooooo!” I clarified. “If I had my choice, I would have literally nothing to do with it.” And I meant that. I’ve had it “up to here” with the stress of it all and would gladly have gone on my merry way and let those two ladies work it all out with Maddie and I could just make her food, badger her into taking showers, and then have fun with her. That sounded perfect! “You all just work this out, and call me when she graduates!”

As it turns out, I have participated quite a bit, but our educational therapist is the Overseer of Things, and for that I am grateful. The stress of the school battle was quite literally killing me and I needed to hand over part of the responsibility to somebody else at least for awhile.

I’ll write more about the experience of online school later, but for now I’ll just say this: What I thought was going to be an experiment with an end date and some sort of answer was indeed an experiment, but one without an end. This whole parenting thing is an experiment. I’m still working on it. We are still working on it. There is a lot of talk about what’s next (that’s another blog entry), and I don’t know what that is yet, but it will be something and then something after that and then something after that. And we will forge on, trying to have fun along the way and not losing sight of the end goal: a content, fulfilled, secure human being. In that part of the experiment, I’m pretty confident we’re succeeding.

And Maddie will graduate on June 14th – her 18th birthday.

P.S. Special shout-out to those who encouraged me to start blogging again. Thank you!