Where a husband and wife blog to: continue the story told in a book called Dancing in Cornmeal: Life with Autism; enhance the conversation about autism; relieve a writer's need to write; inspire (when the stuff here is really good); network; and share - especially recipes that follow the SCD and Paleo diets. See "Welcome" under TOPICS for a better description, then just keep reading along...

Sunday, April 29, 2012

Catching up: 10 Years since Dancing in Cornmeal

Warning: This is the long promised, as well as just SUPER LONG, blog post that serves as “the rest of the story” to Dancing in Cornmeal: Life with Autism. I began writing this post the week of Lauren’s 20th birthday, and intended the title to be 10 Years of Catching Up—on Lauren’s 20th Birthday! But long stories take time to tell. So instead, here we are 10 years after the release of the book (approximately—it was spring). The story stopped when Lauren was 10 years old, so . . . same thing really.

One of the purposes of creating this blog was to share our success and to network concerning diet, specifically SCD and Paleo, so heads up that there is quite a bit of medical history and diet talk in this post. I tried to keep it as streamlined as possible, but . . . Lauren’s story is what it is, and streamlined is not a descriptor I’ve ever used for it!

Part I: Intro

In the 10 years since writing Dancing in Cornmeal: Life with Autism, our family has been through a lot with Lauren. Dancing in Cornmeal helped to define “a lot,” as will this blog post.
Recently, I’ve heard reports of mental health professionals finding Post Traumatic Stress Disorder affecting a new group at a significant rate. This group is parents of children with autism. Before we knew of these findings, Craig and I had discussed our mutual suspicion that PTSD was evident in some of our responses to the world, but we would never have voiced that to someone outside our tight circle of daily tribulation. We felt understood and somehow vindicated hearing these sad study results.

Of course, just like having a “band of brothers” and finding purpose in “fighting a good fight” can balance the horror of war, neither Craig nor I would give up a moment we’ve lived with Lauren if it meant giving up Lauren. Despite the daily trials, pain, fear and tears, we appreciate that Lauren has given our lives purpose and joy in a way that few humans get to experience in a lifetime, never mind throughout a lifetime!

The other day, I was troubled because I cannot get a grip on how to schedule each day so that I meet some minimal goals. Specifically, I’ve failed to bring groceries into the house. Our fridges and cabinets are barer than bare. Each day, I’ve had both “Grocery Store” and “Costco” on my To Do list, but by the time I’ve calmly done all “High Priority” and “Nannette’s Sanity” items on my list for the day, the time available for being away from the house with the car is past and either Craig or I need to get ready to take the car elsewhere.

This led to a discussion of who does what around the house, probably because my “Nannette’s Sanity” list items were not providing me sanity. One thing we both noted is that I want to cook more, but I’m simply not a cook. I’m a baker. And I prepare great salads. But I need to let Fabulous Chef Craig do the chefing. That’s one thing off my list. You see, Craig loves to cook. The focus of it, the process of it—all gives him peace. A peace he greatly appreciates at the end of a long day of his paid work. Cooking gives me no peace. It is simply a process by which I can check something desirable off my list. I would be as happy being able to afford a private chef to present every meal to the family. Not Craig. He wants to be that chef.

So that led Craig to ask me, “What gives you that sense of peace and enjoyment? (Other than me, of course.)” I said, “The only thing that gives me a sense of fulfillment and peace (other than you, of course) is an unexpected moment of joy with Lauren. When she’s in a great mood and I sit next to her and we have a long interaction with hugs and giggles. Or when she’s in an iffy mood and I’m so intuitive to her that I create an environment and response that changes her day for the better. Or when I understand something she says to me and we both act celebratory afterward . . . those moments fill me up.”

Craig asked, surprised, “What about writing? I thought that gave you a feeling of satisfaction.”

I said, “The only time the actual process of writing is fun and satisfying for me is when I’m writing something that felt unique, purposeful, deep or even changing when it surfaced in my brain. Writing then is like a ‘pouring out’. If I don’t pour it out before I lose it, no one may ever enjoy it or benefit from it. That kind of writing is very fulfilling but not something I can schedule into my day. In other words, don’t tell me I must sit and write for a certain number of hours per day whether I’m inspired or not. That’s pretty much the same as telling me to spend those hours cleaning bathrooms.”

It was a lovely conversation. It made me say aloud that Lauren gives me joy. I actually say that aloud a lot—especially to Lauren. But this time, it was in an analytic “How can we make our lives better?” sort of conversation. It was just a matter of fact statement, not part of an “Awww . . . isn’t that sweet” or a “Look on the bright side” sort of conversation that’s meant to make us look less complaining or to help soften the edges of our reality. It was just a matter of fact.

I heard a story about a college professor who began a class telling his students that they all want to be exactly where they are at all times, so they all want to be sitting in his class more than they want to be anywhere, or do anything, else at that moment. (He gave the condition of “all historical facts of your life remaining the same”—of course we’d change some of those facts if we could.) The remainder of the class was discussion as proof of that statement.

I often think of that assertion. I have a friend who lives with his single, adult daughter, whose boyfriend is a pilot. This woman and her boyfriend can fly for free on any plane they can get a seat on with employee & friends’ passes. My friend has come home from work to find an empty house and a note that informs him, “I’m in St. Thomas and should be home by Sunday.” This is the life I think many of us think we would live if we could live any and every moment just as we want. Many of the professor’s students said things like, “No, I want to be in Hawaii right now, not in this classroom.” To which the professor said, “No. If there’s no fact in your history up to this moment that prevents you from being in Hawaii (a wanted poster of you in a Honolulu post office?), and yet you are here in my classroom, then you want to be here more than you want to be in Hawaii. And you can’t claim it’s a money issue, because a move or vacation to Hawaii is much cheaper than this semester at this college.” I heard this a long time ago, but I think the students agreed by the end of class that the professor presented a pretty convincing argument.

I definitely want to be primary caregiver and support to my severely disabled daughter more than I want to do anything else in life at this moment, considering all the facts to this moment that I may not change. If I could change the facts, but only selectively, I’m not sure I would change that Lauren has autism. It’s not Lauren’s bizarre behavior and severe delays that we call autism that has given me so much distress over the years. It’s been the pain she has experienced. If I could change only one thing about her condition, I think I would take away her pain. But if I can’t take away all the pain she may ever have, then I would change that she can communicate clearly, through words, pictures, gestures, whatever, about her pain. I imagine having parents not compassionate to your pain, when you are acting out only because you hurt so bad, has got to be the greatest trauma to a child. I would take away any chance for that trauma first, and the rest of the autism could stay.

Before writing this post, I read a few chapters of Dancing in Cornmeal and I sincerely remember very few of the stories I tell there. I’m so grateful that they’re in writing in such a great format! I like to blame the extreme nature of what we’ve endured over the past 10 years for my having lost many memories. (Though, I may also have a physical deficiency. I picture my brain as one that has fewer brain cells than average, so they’re all working like locomotive engines 24/7. Whereas I think of a genius’ brain as having way more cells so each can work a little less [and sometimes even take little vacations], yet produce more because they’re better rested. I think that’s why my cells are very selective about what they save and delete—which one even has time to create an inventory system, they’re each pumping so hard! Hey, my brain looks a lot like my life . . . )

Call it stress-induced, or just age-related, memory loss, I have little recall of details about the last ten years. Thankfully, when we start some new hopeful regimen for Lauren, I always keep a log, because one of my greatest fears in life is losing my precious memories. That’s how I know for sure what has been the greatest reason for Lauren’s successes over the past ten years. I logged details about it until the argument for its impact was irrefutable. In fact, the greatest thing that happened for our entire family was the discovery of, or the placement of, the Specific Carbohydrate Diet before my eyes. Within days of going on that diet, Lauren’s pain dissipated, so her behavior calmed and grew more cheerful and typical of a person her age. But the diet discovery happened in 2005 and I left my readers hanging in 2002. So let me catch you up as best I can with my debilitated (or protectively selective) memory.

Part II: End of 2001 to September 2005

At the end of 2001, when Lauren was almost 10, she regularly became self-abusive and would become aggressive to others when they tried to help her or protect her from herself. We adjusted her supplements, reading from her behavior as best as we could what might be the problem. Though anxiety/distress was a trigger, the cause of almost all of her distress was obviously pain. She was in pain a lot; of course she was—she was always constipated, likely to the point of impaction. We believe that the longest period of time Lauren went without a BM was 14 days. Yes, 14 days. At some point, her pediatrician put her on Miralax, a then-prescription-only strong laxative. It was while on Miralax that Lauren went the 14 days. Miralax made her worse. I suspected the Miralax—a starch that just sat on top of all the other stuff in her gut that wasn’t capable of being broken down properly into nutrition—was the worst thing to put on top of that pile. But I desperately wanted a doctor just to tell me what to do and to have it be the right thing. I had read a bit about digestive yeast issues, dysbiosis, autistic entercolitis, etc. but there were differing approaches by each of the authors. I knew this was the source of her pain, I just didn’t know exactly what to do about it. And I didn’t have time to become the expert. Lauren’s frequent behavioral outbursts had us in triage mode 24/7—for one child!

Even though we often did get hurt trying to calm her or help her, Lauren made it clear that she did not want to hurt us when her behavior was out of control. In anxious moments when we could tell she was about to become aggressive, she would often push us away to a safe distance. She wanted comfort, but she knew that having people close only escalated the situation, so she tried to prevent that. To us, that was evidence of how sensitive to us, and how smart, this quiet, very delayed child was.

More evidence of Lauren’s sensitivity and understanding of the pain she was causing us, and her feelings about that pain, came one day after a very aggressive outburst during which she had hurt Craig and/or me pretty bad. When she calmed down a bit (but she was still gasping every now and then with a little quivery-lip after-cry), she began looking through her video boxes to ask for one to watch. After a longer than usual perusal of the choices, she handed me a video and I looked at its cover. I was surprised because her choices are usually themed for a long while and this pick was one she hadn’t asked for in a long time; but it was a memorized old favorite. It was Veggie Tales’ God Wants Me to Forgive Them. I knew. I knew she was trying to tell me something by what she handed me and what she wanted both of us to hear on that TV. So I told her repeatedly that Daddy and I knew she was hurting and that she didn’t mean to hurt us. And I told her we forgave her. She seemed calm and peaceful for a long while that night and that was comforting to me. Craig and I learned then the importance of telling Lauren we forgive her when her outbursts hurt us physically; they hurt her emotionally at least as much, because they were out of her control and she had hurt her beloved Mom or Dad. She seems to appreciate the forgiveness and to calm quicker when we’re sure to tell her that “we’re all cool now. Don’t worry about it anymore.”

Thankfully, when Lauren became aggressive, we could usually get her into her bedroom, which had become her safe room, to sail out the storms. After she kicked holes in her walls, and had hurt her foot in the process, Craig and his father put carpet-covered wood panels across the wall along her bed, so her foot and the wall were protected.

I don’t like to recall this, because it’s so painful, so I’m going to do it as shorthand as possible. (I think it’s important to tell, because if there were moments of divine intervention, I recall this as was one of them, or the beginning of them.) After a particularly horrible time of aggression, Craig and I called Lauren’s pediatrician, who advised us to call 911 and to get Lauren to an emergency room because she believed that was the only way Lauren would be admitted into a place appropriate to help her. Long story short, Craig and I ended up taking her to the Children’s Hospital ER. And that is where one miracle happened. You would almost think Lauren was a normal, if very quiet, 10-year-old while she was there. She was calm for the poking necessary for a blood workup. She was even smiley with the nurses and doctor who came into our little curtained cubicle. I remember the time there as pleasant relief for Craig and me, because she was such a sweetie, and because we realized (while getting the breather from the kicking, hitting, pinching, biting, crying and screaming) that we were going to take our baby home and keep trying. Craig and I joked while there that Lauren knew what was up our sleeve and she wasn’t going to have it. It was one of those times when I looked at my daughter and thought, “Oh, my gosh, you talk to God, don’t you? He told you that you better keep it together and put on the charms if you want to go home with Mommy and Daddy, didn’t he?” I don’t know if it’s true or if I’m romanticizing it, but I recall that moment as giving me a bit of renewed energy to keep on keeping on. I couldn’t imagine a place appropriate for my precious daughter where they could help her more than we could. (Since, I’ve become absolutely certain of that.) I just wanted to cuddle my precious little girl in blankets and bring her home. And we did.

Of course the results of the tests they ran on Lauren at the hospital revealed nothing, and our pediatrician recommended that we take Lauren to a psychologist. We did, and he was a very nice man; but I won’t go into that because the experience gained us nothing. Well, it did confirm previous findings that psychotropic drugs pretty much just instantly make Lauren worse. I guess that was beneficial data to add to the pile, but I’d rather Lauren was never our guinea pig.

It was around the day after our trip to the ER that I called Dr. Bernard Rimland, the amazing man who founded the Autism Society of America(ASA), and the Autism Research Institute(ARI) in the 1960’s. He was always on the cutting edge of autism research, and he answered his own phone in his office in San Diego. I told him Lauren’s situation and the supplements she was taking. He told me to make some changes to her supplements, increasing her B6/Magnesium to very high levels and to start her on DMG (Dimethylglycine) again at higher doses than we had tried before when we saw no obvious benefit. He also found us the DAN doctor most accessible to us. DAN stands for Defeat Autism Now and is a consortium of physicians and other medical professionals on the forefront of biomedical research and treatment of autism. DAN was created by ARI in the mid-1990’s to bring together the best of the best to: share, teach, broaden the availability of treatment, and to hasten the research and development of more and better effective treatments.

The changes based on Dr. Rimland’s advice helped immediately. I mainly know this because I have photos taken a few days after Lauren began her new supplement protocol in which she is painting with her Dad. Focused, for a length of time, with real paintbrushes, paints and paper. I remember she loved the color yellow and we have those paintings with lots of yellow on them in some binder in this house somewhere. It felt like a little reprieve and a little miracle. We still had the aggression and the constipation, but we had more pleasant moments of engaged calm.

The appointment with the DAN doctor was complicated. Our “local” DAN doctor intended to practice in Georgia part-time, but did not have an office here yet. We counted on him soon being near, but couldn’t wait for that unknown date for a mandatory in-person, first-visit physical. So we made a trek to New Jersey to see him over Valentine’s Day in February 2002.

Along with the pain, self-aggression, etc., part of Lauren’s deterioration in condition was a severe sensitivity to clothing on her body. I believe I wrote about this in Dancing in Cornmeal, because I recall mentioning my mother’s inventive solution to the problem. At the time of this doctor appointment, Lauren would keep on her body only outfits my mother made for her, which we had named houdinis. (She would have to be a Houdini to get out of them, because they were one piece jumpers that zipped up the back and there was a buttoned tab over the top of the zipper to deter her from just reaching to the base of her neck and unzipping. That wasn’t easy for her, but she’d managed it on one or two early versions without tabs. The only way she could get out of these was to tear them off of her, which she also managed to do with some earlier models. I think my mom made about 40 of these over the years and they became sturdier and more stylish with each new design—and increase in size!) At the time, Lauren’s houdinis only came in sleeveless, shorts style, with the intention of putting them over long or short-sleeved shirts as needed. We were able to do that later, but that February, Lauren only wore sleeveless, short jumpers. And certainly didn’t put up with any outerwear. She would slip on slide sandals to get from place to place outside, but would take the shoes off as soon as she was inside. So our biggest concern about trekking to New Jersey to see this doctor was Lauren catching pneumonia in the real winter weather—there was snow on the ground when we got there.

It was a hard and memorable journey. Thankfully, we had grandparents and friends willing to take care of our pets and Bryn while we were gone. As a result of that DAN doctor visit, Lauren endured some memorable moments of urine, BM and blood collection. (Though these stories are some of our favorites, probably our 20-year-old would tell me, if she could, “Mom, don’t embarrass me with those stories!” So I’ll leave them in the vault and respect her privacy. Just know that moments like those can bond a family like no other.) Then the doctor received the results and, through phone consultations, explained them to us, and prescribed a protocol of supplementation for Lauren that was based on the intentions of: healing her constipation, balancing her super-yeasty digestive tract, improving her immune system, decreasing her inflammation, and keeping her on the vitamins and minerals recommended by Dr. Rimland that had recently helped her calm down some. The first goal was to get her BM’s regular, then the doctor hoped to move ahead with chelation—medical removal of heavy metals—which Craig and I believed, and still believe, Lauren could benefit from.

The upshot: Still on her gluten-free/casein-free (etc.) diet, plus the doctor’s much more extensive and uniquely recommended protocol of supplements, Lauren improved a little bit, but noticeably. Occasionally, we’d experience a surprising moment when she would express something in a clear, new way, or react to something just as a typical person would—with hugs, a laugh at a joke, obeying a direction, interest in a toy in a new way, for example. Her slower, more steady improvement, however, may be more remarkable, perhaps only because it’s verifiable by photos taken over that time period, in which she is wearing more and more clothes over time. She’s also participating in more activities and looks happy more often—maybe wearing proper attire helped with that! I’ll always remember the day I took a chance and pulled a pair of my sweatpants and a sweatshirt over her houdini before sending her outside to play, and she kept them on! And continued to keep them on after that day, which led to the weaning of the houdinis.

[Here, I want to insert something only because it falls here within the timeline. Its inclusion also simply makes more thorough this record of our experiences and attempts at helping our daughter. We brought Lauren to a local center which is regarded by many as premier in helping children with autism and severe behavioral problems. Even though I have private dissertations written about this bad experience, I will keep it short, because I don’t want to bad-mouth any institution on the internet. Just because they offered us improper care does not mean they don’t offer hope to others with different needs and standards. We actually had 2 appointments with this institution—one with Lauren, and one without. The upshot of those visits: I scolded a young neurologist for his lack of preparedness and professionalism; but the young neurologist won back a little dignity by thoroughly apologizing and calling me correct for having scolded him. Craig was a great dad and removed Lauren from the “scene” before the scolding and apology occurred. The place’s director told us we were awesome parents and were doing everything correct and as they would advise regarding how to address Lauren’s behavioral outbursts. And he offered that if we ever wanted to forget about diet and supplementation as a means of helping Lauren, they would be happy to do whatever they could with her. We parted this place once again feeling defeated on one hand, but also feeling more confident in our decisions. We could say we’d left no stone unturned, and we’d consulted what mainstream considered “the best.” In that place, we were even more convicted that our child was best served by a mom and dad who’d never let ego, career goals, “established protocol” or anything else stop them from doing whatever they had to do to help their child. It was a peaceful ride home.]

So back to talking about what did make a difference: Our biggest problem with the DAN doctor’s extensive supplement protocol was that it was costing us over $700 per month. We started out full bang with all the dosages that the doctor recommended, but when I told him the monthly price, he was shocked and understanding that we couldn’t keep this up. We went through each supplement and he pulled down the ones that he believed less significant in the protocol, so that we didn’t sacrifice the most significant.

Over the next few years, the different supplements and dosages ebbed and flowed on and off the chart that kept us on track daily, assuring us we were following the doctor’s orders (and our instincts) precisely. I still have the file of dated charts that we hung on the fridge each week, boxes hand-checked next to the name and dosage of each supplement as it was given. I could, if ever necessary, go back and see what we tried, what did work, and what didn’t work. I try to maintain strong records so Lauren is never a human pincushion or guinea pig unnecessarily. I could tell you what has consistently benefitted her since she was very little, what seemed to make no difference when removed from her regimen, what we need to give her still today, and which of those we need to change the dosages on occasionally based on her behavior and other health symptoms. Some of the stuff we tried outside of the $700 per month protocol was Methyl B12 shots and Lauricidin.

That’s pretty much where we were 2002 to 2005. Lauren was doing better. She was still pretty much non-verbal, but she had some useful and good communication strategies. She used gestures and pictures to request and comment, and she functioned happily in predictable daily rituals. But anxiety has always been like a blockade for her. When she feels anxiety from pain, the unexpected, the sensorally overwhelming (or whatever), even her good communication strategies fail her. So even though she was a happier girl, with a few new surprises and successes under her belt, it was still hard to gauge her level of healing. Her BM schedule was better but still very irregular and still sometimes causing her obvious pain. She seemed to get migraines, too. Of course her ability to communicate about these experiences while they were happening was nil.

Though they were less frequent, her self-abusive/aggressive altercations were still too frequent. It was dangerous being her caregiver. She could seem delightful and angelic one moment, then just snap unexpectedly. If you were standing close when she snapped, you could lose a handful of hair, get scratched, hit, even bit. It wasn’t the same every time or we would get better at predicting the moments. She sometimes was despondent before an outburst, so we knew to stay away, address any need or get her to a safe spot. But sometimes it would come out of the blue when she had been calm. In some of those situations, she seemed to suddenly get red all over, gently shake a little like she was shivering, then jump into the hitting self/fight or flight response. To me, these looked like small seizures. I had read about such in kids like Lauren in some autism publications. Their onset was associated with puberty and here Lauren was in puberty.

Lauren’s pediatrician recommended a pediatric neurologist, who I thought was a very good doctor. He was straight with us: He had seen a lot of kids with autism who went through horrible behavior during puberty. “The good news,” he said, “is that it should improve in a few years.” (A few years?!?!?!) He said there was a good chance seizures were at play in Lauren’s behavior; but, quite honestly, we’d likely never know—only an EEG could show us for sure; Lauren would have to be sedated to undergo an EEG; this type of seizure is unlikely to occur while a subject is sedated. We could just treat her for seizures with medication and diagnose their existence according to the effect of the medicine. Or leave it alone. We chose to leave it alone, knowing Lauren’s reaction to neurological medications in the past, and that it was an option for the future.

So here we were, with Lauren’s supplement protocol having set us on a bit better track, and holding out hope that maybe the “seizure-induced” moments would pass after puberty. But the constipation was still a huge, painful problem and likely the instigator of most of Lauren’s misery and anxiety. Our DAN doctor told us we needed to cure it, not only to improve her health and end her pain, of course, but also so we could move on to chelation. (A person’s BM’s need to be healthy and very regular before chelation can be considered, because the point is to stir up imbedded metals so they can be excreted. In a body with stopped up, unhealthy bowels, the process would just loosen up metals in the body, circulate them and redeposit them. That would do even more harm than leaving them where they are.)

Our DAN doctor referred us to a doctor in New York whose name I recognized. He specialized in kids with “autistic enterocolitis.” Reading about his work, Lauren was definitely one of these kids. We received this doctor’s packet of paperwork and planned to fulfill his screening requirements: Submit stool, urine and blood samples, each drawn in a specific manner by specific labs. We couldn’t find a lab anywhere near us that qualified for even one of these procedures. And we knew the trauma we had put Lauren through collecting such samples for the DAN doctor years earlier. Then the procedure that she would have to go through in New York . . . Cleaning her out ahead of time when I knew laxatives did no good in her, travel, a hotel stay, sedation, possible side effects . . . I’m always enthusiastic when I see an answer on the horizon, even if it’s a very difficult answer. But I didn’t foresee this answer as possible or as the “healing answer” for Lauren. I don’t know if I had already read some literature about “cleaning out and healing one’s colon in more natural ways” which may have supported my hesitation. My memory is fuzzy on the timing. But I remember going to Craig feeling like a failure and saying, “I’ve procrastinated at pursuing this lab testing more aggressively for Lauren because I just don’t want to do it; it’s just too hard.” And he said, “Okay.” He dreaded it, too, and he hadn’t yet even read the doctor’s paperwork that listed the hundred really hard steps we’d have to put Lauren through.

So Lauren was still in a really bad place, and Craig and I were equally in a somewhat hopeless, exhausted and sad state when summer of 2005 rolled around.

Part III: September 2005 to Present

At some point in 2005, I received an email in my Dancing in Cornmeal inbox. The book had been out for over 3 years, and had a steady, if light, readership. I received occasional questions and thank you’s from parents, teachers, therapists and even a Sunday School teacher. Usually the emails contained many details about the child with autism in the person’s life —help was being sought, or at least a true connection was trying to be made. I almost dreaded checking this Inbox, because I wanted to be able to connect back with these people who were good enough, or desperate enough, to write to me with comments or questions; but I was so overwhelmed with Lauren, and trying to homeschool my regular ed Bryn, that I simply didn’t have the time or energy to give to these people. However, that was back when I didn’t prioritize as well as I do now (give me sleep!!!) and I would usually find time between midnight and 5 A.M. to answer my book fans’ email.

Here I was, checking email, when I opened an email that was very different from most I receive in that it was short, not specific, and left no personal contact information; just the return address was available. I think it was signed with a lady’s name—Dana?—but I’m not 100% sure it wasn’t a father who was writing. I wish I still had that email, but for some reason I deleted it or forgot to save it when I eliminated that email account. I don’t recall. I have always felt there was something very special in that email. Like, Dana, or whomever, was an angel just delivering a sign (also known as a “kick in the butt” around here), not a real person at all. At first, it bugged me. I think because I knew it was a call to action and I wasn’t ready for a call to action that would make me have to turn over everything we were comfortable with—again!

The email said something like, “Have you heard about the SCD? We put our daughter on it and she started talking 2 days later.” It may have said more, but it was super short and didn’t say much more if it did. It may have listed a thing or two more that the daughter was doing on day 3 and 4. And now that I recall, I don’t think it was signed. I think I guessed at the sender’s name from the return address. So it was annoying, and bizarre. It didn’t feel like a connection was needed by this person. This person felt like it was his or her duty to reach out to me and give me info that I needed and didn’t yet have. They didn’t have to take the 2 minutes to do that, but they did.

In fact, at that time, I had not heard of the SCD. I did a quick internet search and learned that SCD stood for Specific Carbohydrate Diet. I felt like I was really slipping as a mom of a kid with autism, because I used to be up on all the latest trends and acronyms. “Oh, so it’s just the newest diet,” I thought. But, in fact, it wasn’t popular at that time, nor is it now, either, really, because it’s very hard to do. (I used to think.) For that reason, if your kid doesn’t improve on it quickly, I imagine your motivation to stay on it would wane quickly. I’ve even thought, “I bet parents of kids with autism who aren’t as bad off as Lauren would never be motivated to stay on it, even if their kids showed obvious improvement. I bet most parents would prefer their kids without the improvements over trying to ‘keep this kid on this diet’.” I’m not being judgmental about the commitment of parents of higher functioning kids. The fact is, if your kid isn’t hurting from GI troubles, or your kid is higher functioning and able to pick and choose their own food while out and about in the world, then it would be very hard to keep the kid on this diet. What I’m saying is: Pain is a great motivator, and our Lauren was in severe pain. Her pain may have mostly exhibited as aggressive behavior, but we knew the behavior was a pain response.

At the time that I learned about SCD, I was already planning to buy a book about eliminating yeast from Lauren’s diet. Wait a minute, if you haven’t read (or don’t remember) every little bit of Dancing in Cornmeal, I better catch you up. At this time, Lauren was already:
Artificial ingredients-free

In considering going yeast-free, all I would be removing from her diet would be gluten-free breads made with yeast, and sugar. (Maybe other gluten-free starches and fruits—I didn’t read the book.) That sounded doable. But for some reason, I never bought the “yeast-free” book. I bought the book that is the foundation of the Specific Carbohydrate Diet, Breaking the Vicious Cycle by Elaine Gottschall, and I opened it with the attitude of, “Okay, sell me.” And it did. I became excited while reading it. I kept telling Craig, “Oh my gosh, she’s describing Lauren!” Or, “This thing that she describes happening in the digestive track . . . that’s exactly how I was picturing it over the years as we were increasing Lauren’s pro-biotics and her laxative sat on her stomach going nowhere!” I felt so wise, and yet so foolish that my baby had been suffering so long and I hadn’t yet removed all these nasty starches from her diet so her tummy and intestines can heal.

The funny thing is, this book was written (and the diet was first developed), to heal people with Crohn’s Disease and ulcerative colitis. And it has healed many. It was only after the diet was followed by children with ulcerative colitis type symptoms, who happened to be autistic, that its extreme benefits to many with autism was realized. In fact, the parts of the book I reacted to with, “Oh, my gosh, she’s describing Lauren!” were not in the newer edition’s parts about newly discovered benefits for children with autism. It was in the early parts of the book where only Crohn’s and ulcerative colitis were discussed. My baby had ulcerative colitis, or autistic enterocolitis, or maybe just really, really bad dysbiosis. Call it what you will. My baby was in pain and this was the likeliest and most doable solution I had encountered in a long time. I shared my excitement with Craig and by September of 2005, our SCD pantry and fridge was ready and Lauren began “eating SCD,” as we call it around here.

For those interested in the process of beginning the SCD, I will tell that, once again (just like when we went gluten-free), I created a grocery list of all the foods we could eat on this diet, and that we liked to eat. I found no use for a discouraging list of foods that were illegal, or a confusing list of all foods with the word “Legal” and “Illegal” next to each. (Though, I will tell that such a reference list was helpful as we became more dedicated SCD cooks and encountered new foods to try. We often looked at a recipe, or encountered produce in the grocery store, and wondered, ‘Is kelp legal? Are bamboo shoots legal?’, etc. So in the front of our very personalized homemade cookbook, we do have a list of “Allowed Foods,” as well as a thorough, alphabetized list of foods with “Legal” or “Illegal” next to each and an explanation where one is needed.)

The day before Lauren began eating SCD, her diet was gluten-free, but not starch free. I had learned over the years to bake everything people normally eat, but with gluten-free substitutions. I even ground my own rice into flour and made my own mixture of rice, tapioca starch and potato starch flours to create a perfect gluten-free flour blend that worked pretty well in virtually all gluten-free recipes calling for flour. So Lauren was still not a healthy eater. She enjoyed her pancakes and waffles, her breaded and fried chicken nuggets, her pasta dishes like any other kid. We were avoiding yeast, so we never found a decent gluten-free bread for her, but she was experiencing no shortage of carbohydrates. Her favorite go-to finger food/snack was Cape Cod Kettle Style potato chips. (They were a go-to for Daddy, Mommy and Sister, too, so we were all at our heaviest those years!) So our pantry on Day 1 of SCD looked quite different from what it looked like the day before, and I was worried. Lauren was a child who did not handle disappointment well, nor the anxiety that arose from encountering the unexpected.

For these reasons (and as full disclosure for those considering going SCD or familiar with the diet), we did not follow the recommended Introduction protocol. We chose not to because we would only have Lauren’s behavior by which to judge the diet’s effects each day. (Most people who start SCD can tell you how their belly and bowels feel each day. Lauren could not.) We figured that if all she could have was very broth-y chicken soup for a few days, she would tantrum out of confusion-induced anxiety, no matter how her gut felt, which would look exactly to us like a belly-ache tantrum. (Especially because Lauren was never much of a soup eater; she therefore didn’t have much practice nor competence with a spoon unless the food was thick like ice cream or pudding.) We needed to transition to the diet with as few ‘angst-inducing new things’ for Lauren as possible, so we could accurately judge by her behavior how she felt each day. Seeing as one self-inflicted head injury could do much more damage than we were already working at healing, we were not going to take a chance on that life-altering wrench being thrown into our good intentions! So straight to the full-fledged diet, with no Intro phase.

Here’s the beauty in telling you (in that last paragraph) about our fears concerning the transition and Lauren’s predicted unpleasant reaction: there was no anxiety, no tantrum, nor any evidence that Lauren missed any food that she used to eat. Breakfast was easy, because Lauren was accustomed to eggs and orange juice—both legal. So the first “tester” SCD meal to which Lauren sat down was lunch; and her main course was something she was accustomed to seeing accompanied by her beloved potato chips. Mommy just slid the plate in front of her, acted like Lauren understood every word said to her, and said, “We’re going to have _____ with your _____ today because those potato chips were hurting your belly. We don’t want your belly to hurt anymore so we’re going to eat a little different.”

Craig, Bryn and I all believed Lauren’s quiet reaction was like that of a person thinking, “Oh, good. Okay. I never liked it when my belly hurt. Let’s try this.” She sat down and ate everything in front of her. Before that week of SCD, Lauren had never eaten a salad of raw vegetables and had barely touched any cooked vegetables put in front of her. That week, she enthusiastically ate a green salad and ate every kind of cooked vegetable put in front of her, never complaining. I had read about the opiate effect and cravings created by foods that are doing our bodies harm because we can’t digest them properly. We felt that we witnessed Lauren lose that opiate effect that first week on SCD. She seemed to be tasting food for the first time. She rejected nothing and seemed completely pleased with the abundance of flavors we were placing before her. I will admit that there would be some truth to the fact that we likely had not put some of these foods before Lauren recently or very often, so her readiness to eat them could be explained by boredom, and enthusiasm about something new. But Bryn, Craig and I ate these foods on a regular basis and I know I usually put some of what was on our plates on Lauren’s as well. So this was not the first time Lauren was presented most of these foods. But it was the first time her nose and taste buds didn’t instantly reject them. She ate green peas, beans and broccoli, as well as salads of lettuce, tomato, onion and other veggies with a homemade vinaigrette. She ate them all up like they were dessert, then left the table happily!

And her behavior improved. Pretty much instantly. We saw such improvement in her level of peacefulness, happiness, cooperation, and interaction with us that we knew after just one week that we would stay on this diet forever if need be. And then the ultimate “tell”: Her BM’s. I charted them—after 2 months on the diet, she was going daily, and sometimes more often than daily. Her “activity” was impressive—she’d had a very impacted digestive tract and her “output” gave proof to the cause of all her pain over the years. After a year on this diet, there was no doubt in my mind that we had accomplished through diet the cleansing of Lauren’s colon that the doctor in New York may have been able to accomplish with many tests, drugs, anesthesia and a probe. I wondered, had we gone that route, but not changed Lauren’s diet, how long after one “clean out” would Lauren again be severely impacted, in pain and in need of another medical procedure.

I thought I was going to include a few of Lauren’s menus from her early days on this diet, because I kept a daily log of her meals, bathroom trips, behavior, any changes and accomplishments during the first 6 months or so on SCD. But I don’t readily find that information in the crowded files concerning Lauren’s medical, educational, therapeutic, etc. history. And I’m too lazy to hook up an old external hard drive to go in search of. So I’ll just share a few pertinent memories and tell you where we are now.

Lauren is still considered low-functioning because she is non-verbal and dependent on others for many things; but to her family, who has seen her endure great pain, and enjoyed her forgiving hugs and her laughter in between bouts, she’s a hero. Daily, we watch her address as huge challenges most things which the average person doesn’t even think about while doing. Putting on socks, brushing hair, getting all the steps correct in the bathroom. And then there’s communicating a need to another—for a new activity, a glass of water, a hug, a snack; and the more unusual things—a stone in her shoe, a swelling ant bite on her foot, a shoe on the wrong foot, a cold or tummy bug. A shirt on backwards doesn’t seem to bother her—in fact, it impresses us because it means that she dressed herself. It usually makes us think of all the years she couldn’t bear the feel of clothing.

Lauren loves books, and spends enough time slowly and carefully looking at each page of a book, even those without pictures, that we believe she likely reads. (Those follow-the-bouncing-ball, sing-along-songs & Sesame Street videos she watched 1000000 times during her most difficult years had to get through a little bit at least, right?!) We know of many adults with autism whose families didn’t know they could read until they were able to communicate about what they had read. So we treat Lauren like she understands the written word, and try not to be boring in choosing lessons to reinforce and increase her understanding of phonics and whole language. (Who knows which approach she grasps better, so we approach reading and communication using every avenue she tolerates.)

This is where we are—in a world very different from the one we were in before we introduced Lauren to the SCD. We have a daughter who stays dressed, is independent in the bathroom and is working at a whole bunch of new skills of daily living. She is usually pretty calm and happy. Maybe more importantly, when she’s not calm and happy, we usually have a heads up and she is pretty good about going to a safe place to get through whatever pain or anxiety she’s experiencing in order to calm down. (Hmmm . . . is that so unusual for a 20-year-old, never mind someone considered mentally younger?) Lauren loves to hike in the woods and to take walks on our neighborhood streets, too. Seemingly less productive, she loves to watch favorite TV shows and movies. We’re sure she has all her favorites memorized the way her older sister has hundreds of quotes from Star Wars, Lord of the Rings, The Princess Bride, etc. memorized. We have to walk that fine line of doing too much for her and introducing the next level of independence in all things. It’s exhausting, never ending; but essential to being the best parents/ caregivers/ guardians, just as it was essential, if on a much steeper curve, in introducing her older sister, Bryn, to the world with a full quiver of unique potential.

Lauren’s autism wasn’t cured by eating according to the Specific Carbohydrate Diet, but her chronic discomfort (with frequent, severe bouts of pain) went away. Her sick stomach and intestines that prevented proper digestion now seem clear as a whistle, as are her bowels that were constipated and impacted for years. Lauren looks healthy. Her eyes are clear. She used to have many seasonal allergy symptoms, but today we only keep her indoors on the highest of high tree pollen count days and she never has the sinus/eye type allergy symptoms. Lauren likely still has many sensory issues, but we are far from the years when wearing clothes seemed painful to her.

Lauren will likely always have extreme social, anxiety and communication issues, but now that she is no longer in constant, and sometimes severe, pain, she can finally fully participate in overcoming her struggles and advancing in independence. Her primary focus used to be her pain—she had a reasonable need to strike out with whatever she could muster in a confused plea for help. My biggest sadness when I knew she was in pain was that she seemed to look at me as though trying to beg, “Why aren’t you listening to me? Why aren’t you making it go away?!” Nowadays, I don’t jump to “pain” as a first possibility for a moment of upset, and we even have more methods for diagnosing and solving problems.

Over the years, Lauren has often acted like her language of actions and gestures is working for her just fine, so why are we always pushing her to do something new and harder? Slowly but steadily, she took well to a photo communication system to convey some key information, then to a picture communications system, but she has always needed lots of modeling, support and encouragement to use any new system. Her newest talking computer device (we call it her “talker”) was no different. Lauren has had this device for 2 years, but she understands and utilizes it now in a way that she was never able to utilize any device in the past, and not even this device one year ago. Most conversations with it has involved lots of modeling by her partner, and an occasional picture choice by her, usually with some cue, or even elbow or wrist support; but sometimes (on happy occasions), she initiates an interaction with it completely independent of us. As I finish this essay, Lauren’s independent use stats have recently gone way up. But it’s been a long and determined process by her dad, me and her therapists.

Lauren’s favorite and most often used pages on her talker help her to: say hello, goodbye, yes, & no; change activities; tell her feelings; get a break; use the bathroom; get a hug, etc. She also likes to go to the food pages and request specific items for breakfast and lunch. It was a hoot the first time she did that independently. You better believe Craig stopped everything he was doing and made the child her requested waffles! In fact that was the beginning of us having SCD waffles pre-packaged in the freezer as often as possible. That led to a beautiful shocker only a few months ago. Though we hadn’t a need to use this one button much (so I foolishly thought Lauren didn’t understand it), we rejoiced when she grabbed the device and pressed that button, which said, Something’s wrong. And something was very wrong—we had made her a promise, which she had patiently accepted, then we had not followed through! Here’s how I conveyed the exchange to Lauren’s speech therapist:

Yesterday morning, we had no waffles pre-cooked for Lauren, so Craig and she “talked” (with device) about no waffles and her disappointment and how she was going to have eggs and bacon. (He “sold” her on eggs by adding bacon.)

We forgot to make waffles last night, as planned. So THIS morning, Craig dialogues with Lauren (with device) that she’s going to have eggs. Craig’s about 6 feet away from disappointed Lauren, who’s at the table with her talker and she 100% independently navigates this stream:

“Something’s Wrong”
Go back
Quick Words
Go back
My Stuff

And then she patiently waited about a half hour for waffles to be made for her breakfast.

Lauren had found and pressed 8 buttons in a sequence, without error, to navigate to different pages to convey the stream, “Something’s wrong! No! Waffles!” And she did it as quickly and smoothly as though she had mastered this device years ago. (Over the years, intense emotion was behind each of her spoken complete phrases and sentences, too.)

A series of 8 button presses (requiring navigation that would give me pause) to express that she was upset because Daddy had made a promise and she was not going to be disappointed again today! It was one of the happiest moments of our lives! How many parents of a 20-year-old are thrilled when their daughter says “No, you’re wrong!” loud and clear? It’s an inexpressible joy that Lauren’s many cries of “no” via tears, screams, and physical outbursts over the years have been replaced with appropriate ways to say, “No,” and a calm assurance on her part that her “no’s,” her desires and her opinions will be always be respected.

Before concluding, I will add that we have not yet pursued chelation for Lauren. We are no longer in contact with her New Jersey DAN doctor, who never set up an office in Georgia, but we intend to find another DAN doctor. There are a few practitioners now in Georgia within a reasonable driving distance. However, I still don’t know if we will pursue chelation any time soon. Each time I read the protocol (which changes regularly as good doctors share more and more data from each new chelation experience), I stop a few times, saying, “Oh, that won’t work for Lauren.” The potential benefits have not yet sold me over the potential risks; but maybe when we find that new DAN doctor, Lauren and/or her parents will be in an all new place where our ability to get through the process safely seems more likely. Lauren is in such a healthy place right now, we fear taking a step backward that could hurt her. We’re in such a better place than where we’ve been, we’re taking a breather, focusing on some other family needs, and not yet feeling compelled to “stir up” trouble.

I know we’re slow (rest assured, Lauren benefits when we ignore the blog), but Craig and I will be posting more info about our personalized SCD experience, info about our newly launched Paleo experience, as well as photos and recipes to help convey how we live the lifestyle. I wanted this update to be broader than for those just interested in the diet, so if this post prompts any questions about SCD and you don’t find the answer elsewhere on the blog, please leave us a question as a comment below. We have favorite books, websites, and other helps, but our future posts will be prompted by readers’ questions, so … please, ask away! (For example, soon up is a blog post about seeking guardianship for a disabled adult child. That happens to be the current topic receiving most pleas for help . . . so, go plead below and we’ll aim to please!)

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