Week 24: Oh, the places we can go…

From across the room, Logan’s eyes spotted the slim, pastel-stripped book squeezed into the over-packed bookshelf.  I’d placed it there, out of his and his sister’s reach, because I didn’t want the pages torn accidentally.  It had been a gift from my mom on my sixth grade graduation, and it is one of my most treasured books.

But Logan insisted.  So I took down Oh, the Places You’ll Go! by Dr. Seuss and read it to him yet again.  I’ve never been able to get through it with him without my voice cracking.

All Alone!
Oh, the Places You'll Go Whether you like it or not,
Alone will be something

 you’ll be quite a lot.

And when you’re alone, there’s a very good chance
you’ll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won’t want to go on.

But on you will go

though the weather be foul
On you will go
though your enemies prowl…

On and on you will hike

and I know you’ll hike far

and face up to your problems

whatever they are…

And will you succeed?

Yes! You will, indeed!

Logan, as we experiment with your diet, I want you to know how much I love you.  I sometimes wince thinking about who might be reading my blog—particularly anyone who lives with autism.

At times my blog might seem to portray autism as an awful thing, something we’re going to dietary extremes to overcome.  It might seem like anything—even life without sugar—would be better.  But the truth is, Logan, if you were to remain the way you are right now, that would be just fine.  Autism is a struggle, but it is not awful.  If anything, it’s taught us how strong and tenacious you can be.  As I read you Dr. Seuss, Llama Llama and your car books, I’ve been reading myself The Spark by Kristine Barnett, which is about her genius son with autism, and articles about Anthony Ianni, an anti-bullying advocate and Michigan State basketball player with autism.  There are so many inspiring stories out there, and I know one day, you will be a part of that mix.  Logan, I’m so proud of you for all you’ve overcome thus far, and I know you’ll face up to your future challenges, too, whatever they are.

Kid, as Dr. Seuss says, you’ll move mountains!

Feeling: Inspired


Week 23: Exercises and patience

Ask my mom or my husband: Patience has never been my strong suit.  And yet here I am, struggling to wait patiently for results we have a slim hope of achieving.  Logan’s weeks have roughly evened out–he has good days, he has a bad day or two.  He has a day without meltdowns, he screams and cries for 20 minutes because 8.4 inches of snow in the Twin Cities forced us to cancel an occupational therapy session.  “But Fridays I go to OT,” he wailed as I tried to explain why we were going right to daycare.  “It’s Friday!  Mommy, you made a mistake!”

Mornings, at least, have definitely been a hundred times better.  In fact, mornings go so smoothly now that we even have time to actually do the exercises his occupational therapist has been recommending we do daily.  Logan even reminds me we need to do his “massages,” which are really designed to eliminate lingering newborn reflexes he still has, the asymmetrical tonic neck reflex (ATNR) and the Moro reflex.  Both of these reflexes, present in newborns, usually disappear at about six months of age.  Having them still present, as they are in Logan and about 90% of the clients his therapist says she works with, makes several things difficult.  Having the ATNR reflex affects visual tracking difficult and hand-eye coordination and makes it hard to establish a dominant hand–contributing to why handwriting and fine motor skills are such a challenge for Logan.  The Moro reflex is also called the startle reflex because it causes babies to instinctively throw out their arms when they perceive danger.  When this reflex is still present, it causes people to startle more easily, leading to less emotional control.

It all seems to make sense, at least.  Like the diet, it will be interesting to see if this has any effect.

We’ve also joined a social skills group, which is a small play group that meets once a week with other autistic kids Logan’s age.  That is, kids whose parents suspect autism–none of the others have been tested and diagnosed like Logan.

This always puzzles me.  I’m trying not to be judgmental of the other parents, but I can’t figure out why they haven’t pushed for more of a solution with their children.  I’m not arguing for constant therapy–there is definitely overdoing it– but the kids in this social skills class aren’t even in any preschool program yet.  I asked one of the moms why she keeps her daughter at home, and she said she just didn’t know.  Her daughter might have had a hard time with it.

How is she going to handle kindergarten? I wanted to ask.

It was the same with diet.  I asked the other parents if they’d tried the gluten-free diet or casein-free or anything else.  They hadn’t.  “It seems like a lot of work,” one dad said.

That’s the understatement of the year, I thought.

They were all curious about Logan’s diet.  What on earth does he eat if he can’t have wheat, dairy, fruit, rice, beans, sugar?

I get this question a lot.

The truth is while his diet is still hard, it gets easier every week.  For example, on a typical day I might pack him scrambled eggs with kale for breakfast; for lunch, leftover grilled chicken slices, steamed broccoli, sauteed cabbage, raw carrots, and almonds; for snack, a pumpkin muffin made from almond flour, coconut flour, and lakanto instead of normal flour and sugar.  For dinner, we’ll have fish, asparagus, broccoli, and a salad of baby kale and fermented cabbage and ginger.

Whether it’s working or not is too hard to tell yet, I told the parents at social skills group.  But at the very least, he hasn’t had a cold all winter (nor did he have any cavities when he went tot he dentist).  It’s completely draining our budget, but I’m still choosing to believe it’s worth it.

Feeling: Calm

Week 22: This should be working

Perhaps I spoke too soon.  After a fantastic week with Logan and high hopes that we were making progress, we had an awful week, full of his screaming, “I hate you,” and “I want you to die” and other aggressive comments, both to me and people in his daycare.  His teacher reported hitting again, and I saw him defiantly say, “No!” to his teacher when she asked him to clean up his toys (he hadn’t seen me yet).

Why?  What the hell do I have to do to make life better for him?  I’m busting my ass to try everything I’ve come across, and for what?  This was supposed to work, I want to scream … and sob.  This was supposed to work.

We’d even gotten through Sadie’s birthday sugar-free.  I stayed home Thursday morning to bake sugar-free, gluten-free, and dairy-free cupcakes for her birthday dinner.  I’d found a recipe I thought I could do and crawled my way through it.  From a recipe on  http://theglutenfreedish.blogspot.com/2010/01/carrot-cake-with-coconut-creme-icing.html, I needed:

  • 1 1/3 cups of gluten-free flour mix (I made my own)
  • 1/4 + 1/8 (or 3/8) cup Lakanto
  • 1 1/2 tsp baking soda
  • 1 1/2 tsp baking powder
  • 3/4 tsp nutmeg
  • 1/4 tsp allspice
  • 1/4 tsp salt
  • 1/2 tsp xanthan gum
  • 2/3 cup extra virgin olive oil
  • 4 egg yolks (I substituted 2 whole eggs)
  • 1/4 + 1/8 (or 3/8) cup coconut milk, lite
  • 7 drops Sweet Leaf Stevia liquid
  • 1 1/2 cups finely grated peeled organic carrots
  • 3/4 cup chopped pecans (I used almonds instead)

Cooking makes me tense.  It makes my heart pound.  So I flipped away from the recipe page my iPad to Pandora and sang—loudly and probably horribly, as I sing about as well as I cook—with the first song that came on.  It was smooth and comforting.

“She’s as sweet as Tupelo honey,” I sang with Van Morrison, feeling calmer already.  “Just like honey, baby, from the bee…”

“Oh, and Siri,” I said, “What the hell is 3/8 cup?  How much is that?”

“3/8th cup is 2 tablespoons,” she responded.

If only the iPad could actually cook for me, too.

I mixed all my dry ingredients together, ground the Lakanto in a coffee grinder to increase its volume (a trick a friend shared for making the expensive sweetener last longer), and then added my wet ingredients, like the directions said.  The batter had the consistency of damp, crumbly sand.

That can’t be right, I thought.  So I added a splash or two of coconut milk to make it more … well, more like I expected it to look like, though god knows why I should expect anything in the kitchen.

I spooned my carrot cupcake batter into liners in a muffin tin and slid them in the oven.  I think this may have been the first time I made a recipe and actually ended up with the amount I was supposed to.  I felt good.  In fact, I felt really good.  So I switched the song to The Killers and danced around, furiously.  Which was probably hilarious, as I dance as well as I cook, too.

Here’s how they turned out:

Amazing … they’re OK!

The cupcakes were delicious, and even more so when my husband topped them with sugar-free frosting.  So I should be happy, and our lives should be evening out as we get more and more of a handle on our diet and probiotics.  Sugar is gone.  But the odd hand patterns, lack of focus, and aggression remain.

So what the hell is not working?

Feeling: Pissed off

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