So, how do you have a real gutty, honest conversation on a blog? I’ve been grappling with this lately, because I think Sara and I are generally a hopeful pair. Naturally, then, on this blog, the glass is always three-quarters full. But I have to be blunt: this has been a BAD couple of months with Jackson. His words are gone, the humming-bird speed hand-flapping has become almost constant, and he is hardly responding to us the way he was in the Spring. We’ve told you about the waves of progress and regress. This is the bottom of that cycle. At least I hope it’s the bottom.

But how do you communicate this stuff to the world without sounding melodramatic, like an After-School Special? This isn’t an “Our Life Is Harder Than Yours” type of website! Every family has its own significant challenges. This autism thing is one of ours. And what would the point be to go into detail? It doesn’t do any good to vent and ruin someone else’s day.

Then again, the point of a blog like this is to give you a real glimpse into our world, which is probably quite different than yours. So for the sake of honesty, I’m just going to say it: this sucks. He’s not looking us in the eye, he’s not even responding to his name most times! For a parent, this isn’t fun. It sucks. Period. No sympathy requested, no violins needed. It just sucks right now.

And yet I can’t leave it at that. We’re pressed, but not crushed. Struck down? Maybe. Probably. Yes. But we’re not destroyed. Jack will ride the high waves again, and he will move forward. His words will come back, and eventually, he will understand how to put his poopies in the potty and not on the carpet (yeah, it’s been a long day…) And eventually, I will learn to embrace him just as tightly in the downtimes as I do in the ups. He deserves that at least. Because ultimately, Jackson is God’s son even before He is mine.

I have a confession: I have a secret rebellion I cannot seem to reform. I bring it out into the open here in a desperate attempt to convince myself of my folly. I CANNOT FOLLOW A RECIPE to the letter. This has worked out surprisingly well, further encouraging the rebellious tendency. But my creativity has proven disasterous on several occasions like the time I was left staring at the sad puddle of goo stuck to the bottom of the pan that was supposed to be beautiful, moldable marzipan to lay atop my son’s birthday cake.

I’ve tried and tried and tried to be good, to measure every ingredient, mix it just so, and include every item on the list. But there’s that little voice that says, “What if we tried to use almonds instead of walnuts, why not juice instead of milk, what about adding a little flax seed to these donuts to give them at least a little nutritional value? This little jar looks about half a cup. What will happen if I just leave that odd ingredient out that has never ever inhabited my cupboards, I mean who’s gonna miss half a teaspoon of “cream of tartar” anyhow?

The result of almost anything I whip up in the kitchen is rarely the same twice. Hence my delinquency in posting new recipes. I hate measuring and actually recording what I’ve thrown together. But, for once, I’ve tried to follow a recipe a second time to make sure it will really work. Here’s a recipe I’ve stolen from a church cook book and modified beyond recognition. I made it again today (struggling frightfully to follow my own recipe) to make sure it won’t end up a brown lump stuck to the bottom of your pan.

Jackson loving refers to these as “Bar?” The intonation echoes my oft-repeated question, “Jackson, do you want a bar?” And everyone in our family will eat these!

Bars
1 cup prunes, softened and smashed (opt.)
2 eggs
1 cup organic peanut butter
1 cup raw organic sugar
1/2 cup ground raw almonds or almond meal
1/2 cup ground raw sunflower seeds
1/4 cup ground flax seeds
1/2 teaspoon vanilla
1/2 teaspoon molasses
1/3 cup canola oil
1 1/2 teaspoon baking soda
3 cups oatmeal (make sure it’s GFCF, I use Bob’s Red Mill)
1 cup chocolate chips (GFCF)

Mix all ingredients thoroughly except oatmeal and chocolate chips. Stir in last two ingredients and pour into a 9 X 13 inch pan for bars or form dough into cookie balls and drop onto cookies sheet. Bake at 325 for 20-25 minutes for bars or 8-10 minutes for cookies.

Optional Topping:
My oldest daughter came up with the brilliant idea to add more chocolate and peanut butter to send the yummy factor over the top! We melted about 1 cup of GFCF chocolate chips (we love Enjoy Life brand) and stirred in about 1/2 cup of peanut butter and smoothed it all together over the top of the cooled bars. YUMMY-licious! Super messy when eaten as a finger food, but soooooo worth wiping chocolatey fingerprints off the dining room chairs!

It’s like a disease: I think I will always include substitution suggestions and ample room for experimentations or warnings when my own creativity failed (or my rebellious vice was my downfall). Not to encourage similar rebellion, but…feel free to NOT follow my recipe, and send me your suggestions!

For more info on the GFCF diet check out these links:
Autism and Diet
Autism GFCF Diet: How Long?

No Debate at Crater Lake

A few weeks ago, I dipped my toe into rougher waters in the world of autism. I attended a parent advisory meeting at Jackson’s school. The discussion had turned to providing more training for parents, equipping them to reinforce their children’s training at home using the same methods employed in school. One mom’s response revealed a new side of the autism debate of which I had been blissfully unaware. Continue Reading

I’ve only had a handful of migraine headaches in my lifetime, just enough to feel sympathetic to those who deal with them all the time. All of them begin the same way: I suddenly realize that movement is lost in a strobe-light effect, lights flash, black spots dance across my field of vision, and I have a hard time concentrating, and sometimes my speech is slightly slurred. This lasts for 20-30 minutes, then the pain begins and lasts for about 5 hours. Last week, as I struggled through visual distortions of an ophthalmic migraine to concentrate on Jackson making a breakfast request, I wondered if my visual symptoms are similar to what he experiences.

I am able to focus on Jackson’s left eye, but the rest of his face is fluid, moving, jumping. My brain feels mushy, and my lips thick. I focus hard on that left eye, trying to hear what he’s whispering, “I want….” What is my prompt again? So hard to concentrate.

Is this what you feel like most of the time, love? I wish I knew. I’m glad I had a headache today if only to remind me to slow down, be patient, wait for your response. Remember that your efforts are valiant. Your victories worth celebrating. You’re a tough little fighter, buddy.

So it took about a week longer for Jackson’s teacher to make her final decision on his placement for next year. Rearranging children, deciding the best for all, and a child dropping out of the morning class all contributed to the final outcome. Jackson will be attending the five day (instead of four-day) morning class with the understanding that if he’s too stressed and cannot hang with it or needs more support and and a slower pace, he’ll be free to move back to afternoon.

I am satisfied with this final answer and more determined than ever to keep him moving forward during the rest of the summer break. We cannot let him slide backward, he needs that consistent schedule and concerted practice to keep him on track, and we need it too.