Part Five - "You Ain't Seen Nothin Yet"

 “It does not do to dwell on dreams Harry, and forget to live.”

Albus Dumbledore

I hope I got that quote right.  I didn’t actually check it, I’m afraid.  Anyway, let me the repeat the question - Have you ever tried to change the diet of a child with Autism?

For nearly four years (before we moved to Phoenix), I ran a day care out of my house.  And I loved everything about it except for the food preparation and resulting clean up.  I thought it was overwhelming to have to produce multiple meals (of the same foods), three times every day (breakfast, lunch, and the full blown late afternoon meal called “snack”), plus prepare something for my own family for that night’s dinner, all while maintaining a sanitary environment (the details of which were monitored and recorded by the state).

The food I used for my daycare kids had strict guidelines regulating it too (the details of which were also monitored and recorded by the state).  I could only serve processed meats (like bacon, lunchmeats, or hot dogs) once a week.  During the rest of the week, I had to serve unprocessed meats that required careful cooking.  Along with the meat, I had to serve two fresh vegetables (each needing to be washed, chopped, and steamed), or two fruits, or one fruit and one fresh vegetable, one starch (pancakes, breads, or potato), and one cup of milk, at every meal.  And since I took care of very little kids (0-two year olds mainly), I also had to make sure that everything on each plate was cut up into bite sized pieces.

Now, I’m challenged when it comes to food in the first place.  It’s the timing of things I have a hard time juggling.  So while I was burning my fingers trying to cut freshly steamed squash into bite sized pieces, the hamburgers were burning on the stove.  And while I was burning my fingers trying to cut burnt hamburger into bite sized pieces, I was also trying to keep one kid from hitting another, while trying to chop apples into bite sized pieces, while trying to prepare formula for a screaming baby, while trying to get the kids belted into booster chairs, while trying to butter bread, while trying to pour milk, all while the bite sized freshly steamed squash was growing cold on the plates.

After I’d finally get the kids into their chairs and eating, I’d sit down to bottle feed two babies at the same time.  That was my favorite part actually.  Did you know that you can make googly eyes and soft sounds at two babies at the exact same time, yet each of them think they’re the only baby in your arms?  Then I’d burp one while rocking the other in a bouncer with my foot, then switch, all while hoping that the kids weren’t making too big a mess of the dining room.

Well, they were of course – puddles of milk on the floor with chunks of burnt hamburger and buttered bread in it, squash smeared onto the walls, chunks of partially smashed apple in every visible crevice.  But that was nothing compared to the mess they made of themselves.  I’d wash down each kid (faces, hands, fronts of shirts, and laps,) with their own washcloth, clear the plates (throw them all into the sink to deal with later), wash down the walls and the table and the booster chairs (carefully removing the smashed apple from the crevices with a butter knife), and then sweep and mop the dining room floor, three times every day. 

Then, after the daycare kids went home at night, I’d have a mountain of dishes to do before I had any to use for my own family’s dinner.  So I’d do all of the dishes from the day, make dinner for my own family, eat, wash down my own kids, clean up the dining room again, and then do the dishes again so that they’d be available to use for next day’s juggle.

It was all such an incredible pain in the ass, and I often found myself living for the day when I wouldn’t have to put this much effort into meals anymore.  This is the experience (regarding kids and food) that I come to the table with in the first place.  Plus, I’ve had babies around (food smeared on the walls, and other joys such as constant poop) for over eight years in a row now.  To say that I’m burned out is a vast understatement, yet I’m the one who God has chosen to give my children to.  I’ve already been ready to retire from preparing meals only to wash them off the walls later, for a very long time now.  Yet it now appears that that was only the beginning. 

Changing my daughter Isabel’s diet (back when we first did so) wasn’t actually as difficult as I thought it would be.  I thought it would be very difficult, because she had all of these strange “food texture and flavor” issues and would vomit if made to eat something new.  However, I knew my daughter.  I knew all of these little things about her that I could use to my advantage – I knew which textures she liked, I knew which flavors she could tolerate (sweet things), and I knew that she had been born with an unusual sense of integrity.  She says what she means, and very much likes to mean what she says.

First, I talked to her about what we were going to do and why (even though she didn’t really seem to understand), and I secured her permission (even though she didn’t really understand what she was agreeing to).  The conversation went something like this, “I’m going to stop giving you wheat and milk because they make you sick and crazy (she was four, and Autistic, so I needed to explain it as simply and directly as possible).”

“Okay,” she said.

Once I had her permission, I could later remind her that she had agreed to this. 

Next, and as much as possible, I bought gluten/casein free substitutes for the foods that she was already used to, with similar textures as the foods that she was already used to (white or brown rice bread instead of whole wheat bread, gluten/casein free waffles and pancake mixes instead of regular wheat ones, soy milk instead of regular milk).  Then, to deal with the flavor, I added sugar - lots and lots of sugar.

I toasted the breads (she was already used to the texture of toast) and then put something sweet on them before serving them to her (jelly or honey or actual white sugar sprinkled on, whatever she wanted).  And I slathered the waffles and pancakes in maple syrup.  And I put Hershey’s strawberry syrup in the soy milk.  

She did cry, at first, and let me know that she didn’t like the new foods I was giving her.  However, she didn’t actually realize that it was option to go back to the old foods because she had agreed to this change (I know it was kind of mean of me to use this against her, but I was really quite desperate to get her to stop slamming her head onto the floor).  I very much involved her in the option that we did have though, by asking her repeatedly how I could make the new foods edible for her.  And anything went – anything at all that would encourage her to eat them.  And eventually, she did get hungry enough to try some of these new foods. 

Just as I’d hoped, she quickly became hooked on the sugar.  So she began to eat these new foods readily and with no problem.  I continued this until she was good and accustomed to the slightly different textures of these new foods.  Then, I gradually put less and less sugar on, allowing her to become more and more used to the actual flavors of these new foods, until one day she was eating these foods either plain or with healthier alternatives such as peanut butter on them.  And, as I’ve said before, she stopped slamming her head onto the floor (she stopped the very worst of her disruptive behaviors) the moment she stopped eating the gluten and casein.

I did the same thing with Cale at the same time that I was doing it with Isabel (partly because of the Autism, but also because Cale has actual food allergies to wheat and corn), and succeeded in getting both of them onto a mostly gluten/casein free diet.  However, even though it’s made a huge difference for Isabel, it’s never made much of a difference for Cale.  And Shane and I, especially after talking to my healer, had been wondering if this is because we had never really taken it to the next level – had never removed sugar, or yeast, or the few other things that are specific only to Cale.

Let me tell you why it was such a threat to consider taking it to the next level.  Again, it was because of the “food texture and flavor” issues.  You see, this kind of change wouldn’t be a matter of simple substitution.  Instead, it would be a double edged sword.  These were the two options – the first was to try to get Cale to eat completely different textures and flavors than the ones he was already used to (vegetables), and the second was to try to bake (from scratch) foods with similar textures as the ones he was already used to (but not bread, of course, because he can’t have sugar or yeast – I’m talking about baking homemade, sugar free, yet somehow still edible, cookies and crackers), that would never really, no matter what, have similar flavors to the ones he was already used to.

Shane and I decided that we needed to give it a wholehearted try.  Therefore, we decided to commit to these restrictions fully, for one month, to see if we could make and/or sustain such a change.  The first thing we did (and this helps to heal the gut) was to put both Isabel and Cale on enzymes and probiotics (enzymes before a meal, to help properly digest any escaped gluten/casein/other toxins, and probiotics after a meal, which are filled with good bacteria that line, protect, and maintain the gut wall).

Houston Enzymes (which you can google if you want learn more) makes a high quality enzyme supplement, which can be taken in pill form or opened and mixed with juice, specifically for children with Autism.  And HLC Child (or, if a kid can’t stand to chew a tablet, HLC mindlinx powder which can be mixed with juice) is a high quality probiotic made for children with Autism.  Both of these dissolve entirely in juice by the way.  I put them in about a tablespoon of juice and then give them through a medicine syringe thingy, so that I don’t have to have a heart attack if my kids don’t drink their juice all gone.

I also invest in a good, liquid vitamin supplement for my kids.  And, just recently, we’ve seen an ND who has put Cale back on 1 TBSP per day of Cod Liver Oil (Norwegian Cod Liver Oil).  I have no suggestions, however, for how to get Cod Liver Oil into kids.  There is simply no way around the oily nastiness.  I just have my kids plug their noses while they drink it, and then give them sugar free suckers or candy right after, which does kill the nasty flavor immediately (I checked).  I’d also like to put my kids on super blue-green algae (a live essence supplement, in pill form, that feeds the good bacteria that lines the gut wall), but the ND said that this is more appropriate for older children with Autism.  She said we’ll try this later if we can’t get Cale to eat vegetables.       

So, we had to address the food.  Now, If you’ve ever had my baking, and I mean with regular ingredients like white flour that swells up fat almost completely unaided, then you can only imagine the screwy concoctions I might create with basmati rice flour, coconut flour, almond flour, and garbanzo bean flour (the only carbohydrates besides vegetables that my healer wants Cale eating at this time).  Therefore, I decided to start with sword edge number one.  I decided to go back to my old daycare menus and try those foods (unprocessed meats, steamed vegetables, and regular basmati rice) first.

Cale had an O.T. that did a couple sessions of feeding therapy with him one time, and during those sessions he got Cale to eat peanut butter via a fairly straightforward desensitization process.  So, I figured that I’d simply use the same process to get Cale to eat the unprocessed meats, steamed vegetables, and regular basmati rice.  Sounds simple enough, right? 

The only problem with this is that my son needs real feeding therapy (which I can’t get for him because our insurance doesn’t cover anything for Autism therapies, because the sum total of all of the therapies that Cale needs cost around $4000 per month out of pocket which we can’t afford, and because the state of Montana only feels it necessary to take care of some, but not all, of its disabled citizens).  Unfortunately, I am not a real feeding therapist.

The first night, I served freshly steamed acorn squash with dinner.  And I told my children that they all had to eat the squash before they could eat the rest of their dinner.  Alden (God bless him) reluctantly ate the squash and then happily ate the rest of his dinner.  Isabel took one bite of the squash, chewed it for a moment, and then spit it out.  And Cale sat there staring at the squash like he might actually throw up.  So I did the very thing the O.T. had done with the peanut butter.  I slipped a teensy, tiny, well salted piece into Cale’s mouth (he loves salt) after which he actually vomited on the dinner I’d spent an hour making.  Then he threw the vomit filled dinner plate across the room before I could stop him.  He went hungry that night.

The next night, as I was preparing dinner in my dress clothes right before I had to be somewhere (Shane was out of town by the way, and my eighty-two year old grandmother with bad hips was on her way over to babysit), Cale pooped on the bathroom floor (and I mean that he filled his pants with poop, which then seeped out the bottoms of his pant legs onto the bathroom floor).  Then he ran through the poop and through the house, screaming at the top of his lungs and spreading poop from here to hell and back (a daily occurrence now that my healer has solved Cale’s constipation problem, since Cale absolutely refuses to poop in the toilet), all while I was burning my fingers trying to cut freshly steamed vegetables into bite sized pieces.

Shortly afterward, as I was scrubbing poop off the walls while the freshly steamed vegetables were growing cold on the dinner plates, in my dress clothes (I’d missed my engagement of course because I was covered in shit), I found myself reminiscing about those good old day care days, and singing to my own past self, “you ain’t seen nothin yet…bump, bump… b-b-b-baby… you just ain’t seen n-n-n-nothin yet… bump, bump… and this is something you ain’t never, ever, EVER gonna forget…”  And I couldn’t help but giggle at God’s truly sadistic sense of humor.    

In a nut shell, I tried to get Cale to eat chicken or salmon, steamed vegetables, and regular basmati rice, over and over again during the course of that week.  He went for days without eating anything.  Days.  And after I had finally succeeded in causing us all to completely dread meal times (Alden and Isabel have trouble eating, for some reason, while their little brother is choking and gagging and vomiting on the foods that their pissed off mother has spent over an hour preparing), I finally succumbed to sword edge number two.  I decided to try baking with the weird flours so that I could make foods in textures that Cale might actually be able to tolerate (crispy cookies and crackers).

You wouldn’t believe how much time (and money) it takes experimenting with these flours to produce edible baked goods.  But I finally managed some pretty good, sort of crispy, sugar free, basmati rice flour/cononut flour/ almond flour cookies and soda crackers, which Cale still tried to vomit up upon eating.  So I made some different ones, which he tried to vomit up, and some other different ones, which he tried to vomit up, and some other different ones, which he tried to vomit up.  I was spending hours every day baking, only to get to spend even more time cleaning up puke.

In addition to the baking, I was preparing three completely separate meals of completely separate foods - one for Isabel, a different one for Cale (since Isabel and Cale have different dietary needs now), and another different one for Alden, Shane, and me, who all eat regular foods that aren’t nearly as expensive - three times every day (breakfasts, lunches to be sent to school, and dinners).  Not only that, but each food that Cale could have (that I hoped he would actually eat) could only be made from scratch.  They don’t actually sell basmati rice flour at the health food store of course.  I had to buy it whole and then grind it myself with my brand new, $300 grain grinder ($300 that could’ve paid for almost two whole sessions of speech therapy).  So by “from scratch” I mean everything but actually growing the damn rice.   

Let me rephrase this, since I can feel my husband’s eyes on this even before he’s actually read it – I was preparing two completely separate meals of completely separate foods - one for Isabel, a different one for Cale, and then usually ran out of steam before making a third one for the rest of us – three times every day.  Alden was actually lucky to get a hot dog at dinner time, while Shane and I either ate fast food, soup, or went hungry. 

Before long, Cale had gone for weeks without choking down more than a little bit of hamburger and a couple of home-made crackers each day.  Plus, he was coming off of his psychiatric medication and was crying for hours, literally, every day after school.  Plus, he was pooping everywhere at least once, sometimes twice, every day.  So while he was at home, he was requiring constant attention.  And while he was at school, I was either on my feet baking or writing in my blog about all of my daughter’s success with dietary restrictions, so as to inspire the strength to get back on my feet and keep baking, so that I could spend the afternoons and evenings on my feet chasing Cale around and cleaning up puke and poop instead of baking.  The stress was incredible.   

Then, one day, Cale walked up to me up and touched my arm.  So I looked at him and said, "Hi beautiful!"

And he looked at me and said, "Be a foo... Be - a - foo."

I looked at him and began to cry, as he kept saying, "Be a foo... Bee - aAA - foou."

Not only was this his first real attempt (that I'd heard anyway) since we'd moved to Montana, but he was actually trying!  He was actually saying each part slowly, trying to say each part correctly.  And after this, I hit the baking with a whole new level of desperation.  

In the meantime, the laundry wasn't getting done.  The socks weren't getting folded.  And any dishes I didn’t immediately need for baking, weren’t getting washed.  Have I mentioned that we’re not getting respite care?  And have I mentioned that this was affecting our marriage, before I even started the baking?  My husband, being the kind of father that he is, saw that I wasn’t getting much done other than producing weird food that made Cale gag and vomit.  So he started doing the laundry, folding the socks, and washing the rest of the dishes, in addition to cleaning Cale up after many of little his pooping escapades, after he got done working all day every day.

Needless to say, this little experiment of ours, even though it appeared to be working for Cale's language development, was proving to be a swifter and more effective way of exhausting the hell out of both Shane and me than I ever could’ve possibly imagined.  And last Thursday, we both reached a snapping point at the same time.  It was bad, because we don’t usually both reach a snapping point at the same time.  Usually, when he’s down, I’m up.  And I can love him through it.  And when I’m down, he’s up.  And he can love me through it.  But we were both down, and I mean to the bare threads, at the exact same time.

My husband and I had never even called each other names before this.  And I think that I could probably count on one hand the number of times that we’ve actually cussed at each other over the course of our fifteen year long relationship.  I had always heard about domestic violence situations, and I had always sort of wondered how one could actually come about.  Well, now I kind of know.  My husband and I have officially had our very first one.  I’m indulging heavily in a bit of drama here, because all he did was give me a little shove towards the front door.  But still, I like to think of it as domestic violence.  It makes me feel sort of bad ass or something.  You know?  Like I should almost go out and get a tattoo.  Or get something pierced maybe.

Okay, maybe this isn’t the moment to try to be funny.  I’d love to give you the details of our argument, but I want for my husband to not be uncomfortable even more.  So I’m going to have to skip ahead here.  A little while later, I found myself walking down the street, defeated in every possible way.  It was cold.  It was starting to rain.  And it was getting dark outside.

I HATE it when I get to this point in a story, and the words, “to be continued… “ pop up in front of me.  But Cale’s got an appointment now, and I really do have to go.  More soon…