One mom's adventures through ADD, autism, chronic fatigue…and shiny things!

Author Archives: Jill R.

It’s official. Mama has ADD, predominantly inattentive type. No surprise, really. Over the past year or so, Life had been getting a little more complicated and I was having a tough time managing–not just the details, but the big stuff, too. I figured if I knew that this was, in fact, ADD, I’d have a handle to hold on to and possibly a path forward. If it wasn’t ADD, I probably needed to know that, too.

It took me a while to chase down an official diagnosis. My initial contacts for an appropriate diagnosis were, um, shall we say costly? I then tried to go through my insurance, but that was NO HELP. I repeat, NO HELP, even when I called and rolled it up to a manager and tried to get a gap exception for coverage out-of-network. They kept giving me lists of people to call, none of whom tested or diagnosed adults with ADD/ADHD. Ahem. And, having the aforementioned ADD, I kept getting distracted with other things…like kids who needed to be fed…and lost my lists of people to call and forgot to follow up with the insurance people…

Eventually, I called Dr Klear, the psychologist who did the boys’ neuro-feedback a year or two ago, and she said she’d do it for me. She sent me a pile of questionnaires, I made an appointment and headed in. Long story short: ADD, inattentive type, and dysthymia. Long-term, low-grade depression, plus living in the middle of piles and disorganization.

Here’s what I’m going to do about it:

1. Neurofeedback — I’d taken my 2 older boys in for therapy, and had tried it once myself in an effort to alleviate my fibromyalgia/chronic fatigue symptoms. I kept falling asleep and losing focus. Dr Klear said back then she’d have to run me through the ADD program before I had the attention for the fibro progam. Ooopsie. I’ve had 3 sessions targeted at the ADD and dysthymia in the past two weeks and walk out much calmer, happier, and more focused. That, my friends, is WINNING.  And I’m now a little hyperfocused on learning more about it. It’s sooooo cooooool!

2. Continue with Naturopath — My naturopath hit upon the idea of tweaking my neurotransmitters just a week or two before I went in for the ADD diagnosis. We’ve been gradually chipping away everything else (“You’re such an interesting case!” she says with glee.) My mood and attention improved noticeably that week. A poor night’s sleep and too much sugar will still whack me out again, but it’s nice to have had 5 good days this month.  And as someone who looks back fondly on the 5 good days she had in 2009, that’s a good thing.

3. Exercise — My brain works better when I move my body. This hasn’t been the easiest thing to follow through with– see: fibro/chronic fatigue. Trying to maximize benefit while minimizing pain. Not discomfort, pain. Using the CrossFit for babies workout at the back of Sarah Fragoso’s “Everyday Paleo” as a starting point.

4. Eat paleo — My new virtual guru is Nora Gedgaudas “Primal Body, Primal Mind.” She cured herself of a 30-year dysthymia with paleo and neuro-feedback. Her book was a library find, and it’s so good I bought my own copy so I could use a highlighter on the pages. The chapter on why anyone with mood, behavior, or any brain-based issue should avoid gluten is the most complete and easiest to read explanation I’ve ever come across. Also using “Deep Nutrition” and the “GAPS diet” as guides.  As I have completely lost my kitchen mojo, my cooking gurus are shaping up to be Nom Nom Paleo, Sarah Fragoso, and PaleoParents. (Stacey’s transformation is inspiring!!)

My middle kiddo’s favorite video:


My Hero!!

This is the cornerstone of my son’s recovery. This is where I started. (And this is what we still maintain with the exception once a week treat of real cheese on a GF pizza crust when we order from one of the 3 places near us that makes GF pizza.)

When my son was diagnosed, I headed over to the huge Barnes & Noble and bought every autism book they had. In the stack was Karyn Seroussi’s* “Unraveling the Mystery of Autism and PDD.” I wasn’t too sure about it, but I knew my mother-in-law would ask very specifically about any dietary recommendations for autism, so I threw it in the pile. (My father-in-law had lost his battle with colon cancer the year previous, and, if ever a war on cancer was fought valiantly from all corners, including diet, my MIL waged a brilliant and dogged campaign.)

As it turns out, 2000 miles away, my mom hit the book store and the only book on autism in the Books-A-Million in Goodlettsville, TN, was the same book. My mom read it in less than a day and immediately called me up. “Put down whatever you’re doing and read this book immediately!”

So I did.

And stayed up until the wee hours reading and crying and wondering if any of this story could possibly be true. My husband came home late from a business trip and found me finishing the book. I told him we had to start the diet the next day.

He wasn’t convinced. In fact, he thought pulling any food out of Connor’s diet was a bad idea because Connor ate so few things as it was. I spent a couple of days trying new things, not embracing it fully, but thinking about it HARD.

Then hubby left on another business trip and I took a calculated risk that sometimes it was better to ask forgiveness than permission. We happened to have some soy milk in the fridge for my niece with a milk allergy. So one day I said “Hey, do you want some of Chloe’s milk?” He drank it down. Boom, milk was out.

Gluten stumped me. I could figure out how to get rid of wheat, but the finer points of being gluten-free eluded me. It took me another day or two to nail down a couple of meals and then, boom, gluten was out.

Hubby came home from his trip. I told him about my experiment. He was skeptical but willing to have an open mind. He took Connor out for a mango lassi on Saturday afternoon. Saturday evening out to dinner Connor was running in circles and flapping his hands in the middle of the restaurant and it hit me. He hadn’t done that all week. Four days without a single episode of running in circles flapping. It wasn’t because we were out, it wasn’t because Daddy was there. It was the diet.

After that my husband agreed to a solid 30 day trial of the diet. I gave him “Unraveling the Mystery” to read on his next business trip and we launched into the world of GFCF.

About 2 weeks later my sister stopped by to pick up a stuffed rabbit toy her daughter had left behind. We couldn’t find it. Then I couldn’t find Connor. We heard him upstairs talking to himself, so we headed upstairs together. We were still on the stairs when we heard Connor singing a lullaby. He had the stuffed rabbit wrapped in his favorite blanket. He was singing a song and putting his baby to bed. We were shocked. It was his first symbolic play EVER!

I looked at my sister and said, “I’m sorry, but that’s not Chloe’s rabbit anymore. You can’t have it back. That’s Connor’s rabbit now!”

That confirmed to me that dietary changes were worthwhile. I seriously went in to the whole experiment looking for a 1% improvement. I vowed to myself that I would crawl through glass for every 1% improvement in my son.

Carrots became Connor’s constant companion and we didn’t look back. The diet was no longer an experiment, it was my new avocation.

*Six months later, Karyn Seroussi sat down next to me at dinner one night at the Defeat Autism Now conference. When I realized who she was I burst into grateful sobs.


Before I launch into any discussion of gluten-free diets, recipes, or experiences, I must confess that I have a scorching case of cooking PTSD. Not to scare anyone off of trying gluten-free diets–the story does have a happy ending.  But for me it’s been a long and winding road.

A combination of sloppy technique (remember the ADD!) and a super picky kid with an extraordinarily high rate of food refusal conspired to heap failure upon failure upon my zeal for cooking and baking. It was not fun. It was work and I suddenly sucked at something I had been pretty competent at before autism (BA).

I started the gluten-free journey for my son in 2001, 3 weeks after his diagnosis and the week before Thanksgiving. Yes, excellent timing, especially since we spent Thanksgiving in a hotel in Monterey. He pretty much only wanted to eat steamed rice and raisins anyway…

It was the Age of Vans Waffles and the Special Diets for Special Kid’s cookbook.

This was many years before Udi’s breads and muffins appeared and well before gluten-free pizza crust was available in actual, you know, restaurants. We muddled through. My kid ate 5 foods, as usual, but I was able to substitute a gluten-free version. Sheer will propelled me through. I certainly wasn’t inspired.

About a year later our DAN doctor strongly suggested we try the Specific Carbohydrate Diet. It’s a brilliant diet for chronic bowel and digestive problems, but it backfired for us for 2 reasons:

  1. My kid had IgE-mediated allergies to just about every thing I fed him, but we didn’t know it. Nuts and eggs were particularly heinous. He was left with squash french fries and meatballs.
  2. I had to personally manufacture every morsel of food my kid ate.

The food allergy testing uncovered sooooo many allergies. Real IgE-mediated, histimine-inducing, eczema-triggering allergies. Let me put it this way–he wasn’t allergic to turkey, chicken, beef or chocolate. He’s allergic to some degree to everything else we tested on a 25+ item panel. (I’ll cover this in another post.)

I used to host dinner parties. I’d cook for my family. I’d bake. ALL the time. I was a cookie baker and a muffin baker and even a decent pie maker. (Crisco, ice water, handle as little as possible.)

And then suddenly I didn’t know what I was doing. I messed up recipe after recipe. I had no feel for the ingredients and no time or patience to develop one. They say there’s nothing like success to build self-esteem. So, yeah, think the complete opposite. I pretty much sucked, and if I made something exceptionally tasty, it was a fluke.

Coping with an undiagnosed it-looks-like-Chronic-Fatigue-but-who-knows kind of illness didn’t help. Brain fog, muscle aches, overwhelming fatigue…a party all the way around. Christmas dinners: a pot of chili and GF chicken nuggets. Easter dinner: Chipotle carry out.

It’s not a pretty picture, especially since my honey was a pretty enthusiastic foodie.

However, there is light, there is hope, and there are edible muffins in the house!

As I come out of the fog of Chronic Fatigue, I find I have a little more energy and brain power. I started following a couple of gluten-free bloggers and they have saved me! Thank you Elana of Elana’s Pantry and Shauna of Gluten-Free Girl and the Chef. My cooking mojo was resurrected for Easter dinner, appropriately.

Easter menu, thanks to Elana’s Pantry:

Roasted Chicken with Olives and Prunes

Asparagus Basil Salad
(This salad, BTW, is the BOMB!!!)

Plus sauteed broccoli, a packaged GF risotto from Trader Joe’s, and a kale and white bean casserole from my husband’s cousin from 101 Cookbooks that she adapted to be GF. Total yum!

Tonight I whipped up a batch of muffins that my oldest raved about:

Gluten Free Girl’s Whole Grain Muffins

So the moral of my story: Be not afraid. Follow these bloggers who have paved the way. I will highlight more as I experiment with other recipes.

(* I use the term PTSD because that’s how my post-autism diagnosis burn out, amped up vigilance, and hyper-reactivity was described to me by a physician.  Warrior moms have seriously high stress.)


How did I tell this mom, let’s call her Margie, that I did just about everything? When it comes to autism, the conventional path is pretty narrow and, well, kinda short.
I know she’d made a stab at wandering off the beaten path, but hadn’t stuck it out. I’d stepped out of the box, off the path, and into the weeds…and have pretty much stayed there. I kept thinking “I took the road less traveled by, And that has made all the difference.”
Our sons had started in kindergarten together at a small private school that operated on a model of 50% neuro-typical kids and 50% special needs kids. Both our sons had autism. When they started I’d say they were pretty close in terms of functioning, and we’d been told our son was high functioning autism. Her son was a math whiz and they had hired a 1-on-1 aide for him. He didn’t come on the same schedule as the other kids. He was obsessed with the color orange. My son was a ball of anxiety and had to sit next to the classroom aide. This was in a class of 7 kids with a teacher and a full-time aide. My kid was obsessed with Thomas the Tank Engine, wouldn’t walk on grass, and would only eat 5 things.
So jump ahead 7 years, and we’re standing in the courtyard of a different school. Our boys are in the 7th grade, and are now 13 years old. We’re trying to get caught up and I can tell she wants the scoop on how he’s really doing, but there never seems to be enough time at pick-up/drop-off. My son had transferred to another school in the middle of the third grade. Her younger daughter had started at the new school and our paths crossed after diverging for several years. Margie had seen my son walking around campus and was impressed with how he seemed to be doing. It was another small private school, but this time there was no program for special needs other than the size and a culture of support.
Then the school play rolled around. It was about the Iroquois League of Nations. My guy—I’ll call him Connor since he’d be mortified like only a 13 year old would be if I used his real name—was The Great Spirit of America, one of the narrators of the play. He’s a tall, good looking kid with a surprisingly deep voice. He’s also got a talent for this acting thing. He delivers his lines beautifully and has a certain gravitas. Last year he played the Dalai Lama. No joke. And he rocked it.
My husband and I took turns going to the play to see our Great Spirit, so one of us was at each of the four shows. Margie went on one of my husband’s nights at the play. He said she was practically in tears when she hunted him down at intermission.
“What did you do??”
You see, my kid has recovered from autism and her kid was still at the therapeutic school.
Yeah, I said it, recovered from autism. It didn’t happen overnight and we started way before Jenny McCarthy showed up. It wasn’t a straight line from point A to point R, and I had no idea if this would work when we started.
This is my record, to the best of my recollection, of what we did. When we were in the throes of autism, I didn’t take notes. I didn’t want to give the experience the anchor of a diary. My intention is to support the idea that recovery from autism in not a one-off event. Some kids CAN and DO recover. I’m offering this free to parents who are interested. If you are not interested or you want to argue with me about it, please keep moving.
For several years, I co-moderated an on-line and in-person support group for parents pursuing the biomedical path for their kids. I felt it was crucial that we make the information available and we make it available at little-to-no cost. If this is helpful in anyway, please pay it forward and offer your expertise or support to another family.

Robert Frost (1874–1963).  Mountain Interval.  1920.

1. The Road Not Taken

TWO roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

        5

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

        10

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

        15

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

        20


…or hobbling.  On Aug 1 I started a new wellness project.  It consists of:

  1. walking 1 mile 5x a week
  2. eating 9 cups of fruits and veggies.

So far, so…well.  Yeah, not so much.  2 days of 5 hours of sleep at night have wreaked havoc on me.  Fatigue, brain fog and general achiness have spiked. 

It’s day 3 and I have managed 1/2 a serving of fruit and/or veggie and it’s 5 pm.  Oops.  The key appears to be the Green Smoothie.  50-60% leafy greens, then fruit, enough water to blend, and any extras.  For me that is usually a generous portion of ground flax seed.  Blend into submission.  That’s 6 cups right there.  It takes me 1/2 the day to get through it.  I make it thick.

I did walk my mile yesterday and have very sore ankles.  I think I need some new shoes.  I go slow, but it’s a lot of weight to push around that track.  How do those people on Biggest Loser do it?

My immediate goal is get through this week.  Can’t think about the BIG goal or I’ll be overwhelmed.

Peace out,

J


In an effort to pack in 10+ fruits and veggies per day, I have stumbled on green smoothies. I’m on Day 4 of my personal Green Smoothie Experiment.

I didn’t know there were green smoothie challenges, weightloss plains, detox plans, and recipes up the wa-zoo. Basically, it’s 2 parts leafy greens + 3 parts fruit + clean water and blend the heck out of it. I have a big Kitchen-aid blender I affectionately refer to as The Beast. I let the Beast run for several minutes on high to smooth everything out.

A lot of the information on this comes from Raw Food sites, which I am on the fence about. In any case, adding 10+ servings of fruits and veggies per day is super duper healthy.

Right now I’m having about 2 quarts of this stuff per day and eating one cooked meal.

Day 1: Had amazing energy. Seriously?
Day 2: Detox-y headache, tummy ache in the late afternoon. Yes, I took an advil!
Day 3: Had my cooked meal at lunch and was nacroleptic in the early afternoon.
Day 4: Does my skin really look better? Seriously?

Yes, I think I can do this for another 10 days. For tips Google “green smoothies” or check out YouTube “green smoothies” GreenSmoothieGirl.com and greensmoothierevolution.com are also worth looking at.

The jury is out on the whole Raw Living experience, but most of the informative sites online are all about Raw. And please, don’t forget to capitalize it. I guess with this Experiment I qualify as High Raw. ‘salright by me.


Last Spring I watched the short series “I Can Make You Thin” with Paul McKenna on TLC.  McKenna, according to his bio, is the UK’s answer to Dr Phil.  I dislike Dr. Phil and think he’s a bully, so I was prepared to not like McKenna. 

Love him.  He’s short and balding, but he’s got a fabulous sexy voice and a very simple message.

It’s a lot of common sense + neurolinguisitic programming (NLP) + EFT tapping, but I’ll take it.  Like many people, I need the obvious to be highlighted, pointed out to me and repeated repeatedly in varied fashion before anything sinks in.  (That would be the ADD).  His rules:

  1. Eat when you are hungry.
  2. Eat what you want, not what you think you should want.
  3. Eat consciously and enjoy each bite. (this one here’s the kicker)
  4. When you think you’re full, stop eating.

I stumbled across the book at the library, grabbed it as we whizzed by heading for the Wiggles DVDs, and started reading when we were in the drive thru line at In-N-Out Burger.  Seriously. 

I’m three days in.  I have a lot of weight to lose.  Like a 5th grader amount of weight.  I’m already on a limited diet because of food allergies and sensitivities, so having to cut anything else out was getting really, really dull.  So far, I am amazed at how mindlessly I’ve been eating my entire life vs the mindfulness of the past 3 days.  I close my eyes when I eat to concentrate.  (If my eyes are open I go trolling for something to read–which defeats the whole mindfulness practice.  And can I just add, that mindfulness + inattentive ADD =  a be-yotch. )

It’s Bhudda advice.  Be mindful.  Sit.  Take the middle way.  Don’t let yourself get too hungry and don’t stuff yourself too full.  On a scale of 1-10, where 1 is passing out famished and 10 is rolling on the floor moaning in agony too full to pop a Tums, you want to stay in the 3-7 range. 

I’ve listened to the hypnosis/relaxation CD three times as well.  I don’t know it it’s really making a difference, but it isn’t hurting me. It gives me another reinforcement, and he’s got a great voice.   I’ve tried the tapping techniques as well and love them.  LOVE them.  I don’t care if it’s hokum, voodoo, or codswallop.  I completely buy into energy medicine and energy healing.  Wave of the future, people.  OK, wave of the ancient past, but it’s a wave and it’s a good one.

Three days of not stuffing myself.  Check.  Listen to my CD.  Check.  Paid attention to emotional eating vs. hunger eating.  Check.  Please, Paul McKenna, make me thin.

www.mckenna.com, www.emofree.com, www.nlp.com,