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Food allergies seem to have magically appeared out of nowhere. Twenty years ago, finding an actual kid with peanut allergies was like searching for Sasquatch. We had heard that this kid exists, but sightings were few and far between. Today, peanuts are banned from airplanes and schools, and kids are wearing labels on their clothing like little air-mailed packages, marked “fragile”. “Gluten” is a household word, but we still don’t know what it is. Adults leave their doctor with lists of foods to avoid, even developing celiac disease and other autoimmune conditions in their 40’s, 50’s, 60’s & 70’s.
Why? What has happened? Is there something we can do?
Join The Tender Foodie, for some interesting fact, figures, and discussion. Elisabeth will review the impact of our food environment, the difference between “allergy”, “sensitivity”, & “intolerance”; cross-reactions & why there is no such thing as a gluten-free pizza. You will leave armed with a few positive changes you can make in your every day life.
FREE. CALL TO REGISTER: (616) 447-9902
About Elisabeth Veltman
Elisabeth owns The Tender Foodie, a blog to help shorten the food allergy learning curve through a community of experts – including chefs, bakers, doctors, nutritionists, counselors, researchers, fitness professionals, and more. The Tender Palate will become an interactive website with tools to help people manage their food and health more successfully.
Very pleased and excited to also have Leslie Berigan R.N., one of the nurse educators from Grand Rapids Allergy on hand to answer specific IgE and EpiPen related questions after the talk. Welcome Leslie!
Kyra's winning smile on Food Network's "Cupcake Wars"
Last year, I had the privilege of conducting my first interview with Kyra Bussanich, pastry chef, owner of Crave Bake Shop, and the first gluten-free winner of Food Network's famous Cupcake Wars. She then won a SECOND time in May, 2012, when she was invited back to compete in Cupcake Champions. Then, in the Champions Finale she took second place out of 16 other champions. All of her competitors used traditional flours. Gluten-free can't be good, right? Right.
Having an auto-immune disease hasn't stopped her one bit, in fact, if fuels her passion to do what she loves - and boy does she do it well! One thing that struck me during our first conversation is how she doesn't settle for pastries unless they meet very high standards. Thank heaven for those standards as they have given us the best brownie on the planet, and it has helped raise the bar for gluten-free bakers everywhere.
Since then, Kyra has been a guest blogger for the Tender Foodie, sharing her delicious Truffle Brownie Recipe (gluten-, dairy-, soy-free) and her fabulous Paleo Brownies for those who are completely grain-free. I asked her if she was ready to chat about her experiences behind the scenes at Cupcake Wars, and lucky for us, she is. We corresponded over email for this interview.
TF: How did “Cupcake Wars” first contact you? And what was that like (how did you feel, what went through your head, etc.)
Kyra: I was sitting on the couch relaxing one evening and watching Cupcake Wars with my husband. I don’t recall what the secret ingredient or the taste challenge was, but I do remember that one of the contestants hid the special ingredient behind 5 or 6 other flavors and I was yelling at the TV at the oversight. Instead of burying the secret ingredients, s/he should have been highlighting it! My husband Jason nudged me and said I should go on the show but I initially declined because I don’t love competitions. They stress me out and make it more likely I’ll get over exerted and run-down.
After goading me for 20 or so minutes, I stomped and said, “FINE! I’ll apply if you leave me alone!” And I sent off a short paragraph about why I thought I would be good on the show, how I was different (baking entirely gluten-free, which they had never had before), and a few photos of myself and press clippings. Then I decided I didn’t actually want to participate, even if they did invite me, and it probably wouldn’t happen since I was still running my bakery as a custom-order business and didn’t even have a storefront yet.
TF: What were all of the steps that you had to go through before you actually appeared on the first show?
Kyra: Within an hour of sending off the application paragraph, the casting director called me. I was still on the couch watching TV! Jessica told me she thought I was “super cute” and wanted to know if I could send her a short (2-minute) application video to show what I was like on-camera. By the following day. GULP! Luckily, my husband went to journalism school, specializing in videography so we put together a short, playful video, which you can view here:
After I sent in the application, it was a few weeks before I heard back from them, during which time I had decided I DEFINITELY did not want to go. What if I choked? Anyone who has baked gluten-free knows that it can be finicky, and I worried that I would be reinforcing the negative connotations of gluten-free desserts if I had a bad baking day, or didn’t correctly judge the ovens and overbaked my cupcakes, or failed to finish in the allotted time. My assistant Jackie (now my bakery manager) was ecstatic about the possibility of going and her collectedness really steadied my resolve. I did it for her as much as anything else.
TF: Was this a dream of yours? To be the first gluten-free winner of Cupcake Wars? Or a challenge you didn’t expect?
Kyra: I think it’s a little of both: I had always dreamed of appearing on the Food Network, and when I started baking gluten-free, I felt like it was my role to champion delicious-tasting gluten-free pastries. I hadn’t really thought seriously about Cupcake Wars until they invited me to compete.
New York Cheesecake Cupcakes w/ Ginger Cookie crust, vanilla cake, filled with raspberry compote, topped with cream cheese frosting and raspberry coulis. Florian LOVED this one!
TF: How did you handle the time off from Crave Bake Shop? Did you have to close ? or was your staff able to handle it without you?
Kyra: The first time I went to Cupcake Wars, I didn’t even have a storefront, so I simply closed down the schedule and didn’t take any orders for a short time. By the time my subsequent visits to Cupcake Wars came about, I had a full staff I could rely on to open and close the bakery without me there. That said, it still made me nervous to leave my baby (the bake shop) in someone else’s hands.
TF: Describe your feelings when you first walked onto the set. Who did you meet? Anybody that made you toungue tied? Did you have an out-of-body experience? ?
Kyra: Being on the set of Cupcake Wars was very surreal. The kitchen is a whole lot larger than it appears on TV, and when you’re running cupcake batter to the ovens to get them baking in a short time frame, that means it’s a whole lot farther than you’re actually running. Jackie and I ran drills before going, where we selected odd ingredients for ourselves (like avocado and jalapeno peppers) and practiced getting batches of cupcakes mixed, baked and decorated in less than 45 minutes. Let me tell you, we were a whole lot faster in our home kitchen than on set!
Jackie & Kyra in the dressing room for the first time
TF: How did the first taping go? Is it like we see it on TV?
Kyra: It’s very much like you see on TV, only there is a lot more standing around and checking microphones and camera angles before everything begins. It’s a long day of taping. I think they picked us up at our hotel at 6 am and we stood around for 2 hours drinking coffee and diet coke before anything started. Needless to say, we were pretty amped up by the time the cameras were on us and we were baking!
TF: Did you just LOVE the Christmas / Holiday theme in the first show? Or was that tough?
Kyra: Christmas is my all time favorite holiday, so I was thrilled when Justin revealed the inspiration challenge. And because dinner rolls and stuffing and gravy were on the inspiration table, I automatically knew that they would be filled with gluten and I couldn’t use those ingredients. I think this actually helped me, rather than hindered because it narrowed down my list of options for me.
Ultimately I selected the apple cider and the cranberry as inspirations and made a Cranberry AppleCider cupcake.
TF: What was your competition like, and how did you handle them?
Kyra: Honestly, I was so focused on what I was doing that I didn’t pay much attention to our competitors. I kept my head down and just worried about doing the best job I could.
TF: Was there a lot of trash talk? (Anybody you want to “out” as sneaky :)) or was everyone professional? Or even supportive?
Kyra: I have experienced supportive competitors, as well as those who were trying to get in my head, or worse, sabotage my baking. I’d say the majority were very sweet and professional though. There’s a reason we all became pastry chefs and bakers: we like to sweeten the day of those around us!
TF: OK. The judges. Was there anyone that you thought you had to particularly win over?
Kyra: Yeah- all of them!
TF: Anyone extra tough on you?
Kyra: I don’t know that I’d call it extra tough on me, but Florian is a very well-respected French pastry chef and easily recognized when I mistakenly overcooked my sugar (TWICE!) while making Italian Meringue the first time I appeared. I figured I wouldn’t point out my mistakes to the judges, but if they asked me about it, I would fess up. He said to me, “This meringue…it tastes like it’s not cooked right?” and I grinned and nodded. He smiled back and that was that.
TF: Did you learn from their advice as they gave it? and were you able to apply it under pressure like that?
Kyra: I’m fortunate that my strengths include thinking quickly on my feet, and creating dynamic and memorable flavor combinations—two things that have served me well during my four appearances on Cupcake Wars. And of course, every time one of the judges gave me something to work on, I made sure to incorporate their suggestions, regardless of whether I personally agreed with them. After all, they’re the judges. And they decide who wins.
African Yam Cakes
TF: Describe the pressure. I can’t imagine. Don’t even know what to ask here.
Kyra: I don’t know what to say. "E:LIHWLIUEGOAGSBD" is what comes to mind. It’s crazy intense. The nerves prevented us from getting much sleep so we were a little ragged on set. And the first time I competed, I was fresh out of the hospital not 3 hours before I hopped on the plane. I hadn’t eaten solid food in almost 6 days, and I figured that just staying on my feet was a win, regardless of the outcome. But it’s also fun, and creates lasting memories.
People ask me every day at the bake shop if Cupcake Wars is really as crazy and stressful as it appears on TV and I always shake my head. No, it's not as crazy as it seems: it's at least 20 times more intense. You have to remember that they are filming everything in one day, which equates to roughly 16 hours of tape time PER CONTESTANT. And there are four teams. So they have to condense all that footage into 42 minutes (plus commercials), which means that a lot of it ends up on the cutting room floor.
TF: Wait. You were in the HOSPITAL just before the first competition? What happened? Kyra: I'm not sure what I was sick with. Perhaps the flu? Perhaps food poisoning? I hadn't been able to keep ANYTHING down for 3 days when my husband took me to the emergency room, worried about dehydration. They kept me there for an additional 2 days, and then I immediately hopped on a plane and went to LA (Jason was scared sick and mad at me for not putting my health first).
TF: What was it like when you got back home?
Kyra: There is a small time lapse between when you film and when the show airs, and because I had signed a non-disclosure agreement, I couldn’t TELL anyone what happened, or even that I was involved. So it was really anti-climactic.
TF: When it was over, exactly how exhausted were you? Was it different after each competition?
I slept for 15 hours a day for the following 4 days after the first show!
NOW. Let’s talk about the 2nd show.
TF: OK. Let's! Describe your second experience and how it differed from the first. Kyra: Well, for starters I WON the second time (came in runner up in the Holiday Tree Lighting the first time!) That was pretty spectacular. And since I had been on before, I already knew that the judges loved my cupcakes as much or more than “regular” cupcakes, so that was a load of pressure off.
TF: Kyra Sedgewick, who happens to be a personal favorite of mine, and the team from “The Closer” were your end “client” for the 2nd show. When did you get to meet them?
Kyra: We met them on-stage on the set of The Closer right after the competition (in December 2011).
TF: Did you interact with them much? And how did that go?
Kyra: There was less interaction than I would have liked, but I did get to wander the set of the police station while we were waiting for the cast and crew to wrap filming. And GW Bailey (the guest judge from my episode, and Lt. Provenza on The Closer) kept popping his head in to taste test our cupcakes and chat with us.
Jackie, Kyra Bussanich, & Kyra Sedgewick
TF: What was Kyra Sedgewick like?
Kyra: She’s beautiful, and warm, and funny and sweet, and at the same time, whip-smart. She’s also teeny tiny! I love her oversized smile and the way she talked to everyone (cast and crew and strangers like me). I’ve always been a fan of hers, at first because we have the same name (spelling and pronunciation and all), and then later because I admired her work ethic and from what I’d read about her in interviews, she seemed really positive and down to earth and playful. In person, all of those are true of her!
TF: She must be teeny tiny - because you are teeny tiny!
Kyra: Oh, I love you!
TF: Did anything funny happen with the crew?
Kyra: Tony Denison, who plays Lt Andy Flynn on the show, came from a scene where they were filming the crime scene. He was wearing booties and gloves and kept them on while he ate cupcakes. It was pretty comical, and Jackie didn’t at first put two and two together -- she thought he was a germaphobe!
Rifling through Brenda Leigh Johnson’s candy drawer was also a hoot! There were Twizzlers and Reese’s PB Cups and DingDongs and Sixlets in there!
Kyra & Jackie with the cast of The Closer. And Tony Dennison's gloves..
TF: Oh, I adore that drawer! What went through your head and your heart when you won? Kyra: Holy MOLY! I just beat traditional gluten-filled cupcakes! WOW! Huge coup for gluten-free people everywhere!
TF: What was the FUNNIEST thing that happened on Cupcake Wars?
Kyra: Jackie is pretty hilarious under pressure, and we just kept a rolling banter going. One of her great quotes, “Kyra- I am sweating in places I should NOT be sweating!”
I think Jackie and I were at our most entertaining in the Madagascar 3 Cupcake Champions Episode. Neither of us had slept a wink the previous night and we were all hopped up on caffeine so the remarks flying out of our mouths were mostly nonsensical, but we were so deliciously tired that we thought it was all hysterical.
Jackie told me that she felt really behind and wanted to cry, to which I responded "I know, me too, but we don't have time. Start making some decorations. You can cry later." And she did!
TF: Were there any twists in the Champions Episodes?
Kyra: They had sprung a last minute twist on us partway through round 2: not only were we going to have to make the judge's cupcakes, but we would ALSO have to make an extra 8 dozen cupcakes and a 2 foot by 2 foot cupcake mosaic in the Madagascar 3 theme. I had to bite my tongue to keep from saying something inappropriate on camera! ARGH! And we finished the round with our judges cupcakes to taste and the mosaic completed, but it certainly wasn't something pretty, or that I was proud. And Jackie, being the perfectionist artist that she is burst into tears. It's really hard to present something for judging that you'd rather just throw on the floor and jump on, and she sobbed that she was sorry she lost it for us, and that it was okay if I fired her. I hugged her and said, "You did the best you could and that was a mean trick to throw at us, and I am glad to be done and we can just go home and eat M&Ms." (Side note: I don't even like M&Ms all that much! No idea why I said that)
As it happened, the judges appreciated our artistic take on the hand painted Alex the Lion, rather than a bunch of fondant shapes cut out with cookie cutters, and we went on to win the episode!
Jackie, Kyra, and Cedric the Entertainer after the Champions Win!
TF: What was the SCARIEST thing that happened?
Kyra: Just being there the very first time and not knowing if the judges were going to spit out their cupcakes and tell me that it TASTED like it was gluten-free.
TF: What was the most MADDENING thing that happened?
Kyra: My very first time on, I was decorating a sheet pan of cupcakes right before we loaded them on the display in round 3: I spun the sheetpan and dropped the ENTIRE tray of 250 cupcakes on the floor. And I knew I was on camera, so I had to remind myself not to say a swear word and not to cry!
TF: What was your FAVORITE moment of the entire experience?
Kyra: WINNING! And then Winning again!
TF: Did you make lasting relationships from the show?
Kyra: I still keep in touch with one of my producers (from the 3rd and 4th times I was on the show), and the gentleman who ultimately beat me in the all-star version, Cupcake Champions!
TF: Who was the MOST interesting person you met on all 4 shows?
Kyra: Candace Nelson fascinates me because she is such a smart business woman. And Florian is a giant teddybear (although I think he likes that people are a little afraid of his gruff exterior). And Kevin Vanderaa (the guy who edged me out of the competition during Champions) is a sweetheart and a gem.
TF: You are a great competitor. You came in 2nd on Cupcake Wars Champions after being first - TWICE. That is pretty amazing. Put that in perspective for us – from your point of view.
Kyra: My first time on Cupcake Wars, I was the runner up, after just getting out of the hospital, and after a long day of the judges raving about my baking. It was bittersweet to lose, but my competitor on the Holiday tree Lighting had a very elegant display that better suited what the judges were looking for.
My second appearance went much more smoothly, because I had a better idea of what the judges were looking for, and so I was better able to give it to them. That was The Closer episode, and I just kept on honing in on what the judges wanted to see to bring victory home on my 3rd appearance.
TF: How did it feel when the judges loved your cupcakes?
Kyra: Incredibly validating! Especially since they have eaten thousands cupcakes, and I was competing against traditional all-purpose gluteny flour cupcakes!
TF: What was the BEST compliment you received from the judges?
Kyra: Florian said of my Dark Chocolate Delight cupcake “This cupcake is the perfect chocolate cupcake. I have eaten the whole thing!” (It was a dark chocolate cake filled with dark chocolate mousse, topped with dark chocolate Italian Meringue buttercream and a ganache drizzle)
Candace told me, “I think you’re a very inspirational It-Girl for gluten-free baking. These are just delicious!”
What could be better than that?
TF: What was the worst thing the judges said?
Kyra: Well, I mentioned how Florian called me out on my overcooked Italian meringue on the Peppermint Hot Chocolate Cupcake: Candace didn’t think the ginger cream cheese frosting on the Chai Spice cupcake tasted gingery enough, but that’s a simple fix!
Europe's Most Wanted Chocolate Hazelnut Cupcakes
TF: How did the judging/judges for the Cupcake Champions Finale differ from the first show?
Kyra: By my 3rd and 4th appearance for Cupcake Champions, the judges acknowledged that as we were the best of the best, they were going to be more exacting and looking to be dazzled. I knew I had to pull out all the stops with both, my cupcake flavors AND the decorations, and so I filled every cupcake and layered the flavors and components and made all edible decorations for each cupcake.
I was told that no one had attempted such complicated components and pulled it off successfully—until me!
TF: That is pretty incredible, Kyra. Tell us something else that nobody knows about behind the scenes at Cupcake wars… that you are allowed to, anyway!
Kyra: Some of the assistants have never baked before! That was a mini-challenge to hurdle.
TF: Seriously! That must have been a challenge, indeed! How has your life changed since this has happened?
Kyra: Well, because of my first appearance on Cupcake Wars, I was interviewed for “Gluten-Free Living” Magazine, where I was featured alongside two gluten-free bakers who have written cookbooks for TenSpeed Press (an imprint of Random House). The editor was following up on her authors and saw my portion of the interview and contacted me, so that’s how I got the book deal, without having to get an agent. And the outpouring of support from gluten-free people across the country and shipping orders all over gave me the momentum to open a retail store. I feel very blessed that I’ve been able to do what I love day in and day out, and I attribute a lot of that to Cupcake Wars.
TF: What’s next for you, Kyra? Anything new coming up?
Kyra: I’ve been finalizing edits of my cookbook, set to be released late next summer. I’m very excited to see it finished (I’ve been working on it for nearly 2 ½ years, testing and re-testing all the recipes to make sure they’re foolproof). I’m also working on a new website, where I’ll debut different sorts of recipes, all of them gluten-free and many dairy-free or grain-free, and I’m also working on getting a few of my gluten-free and dairy-free cupcake mixes packaged and to market!
TF: If you could some up your experience in one sentence – or one word – what would that be?
Kyra Bussanich is the owner of Crave Bake Shop, and the first gluten-free winner of the Food Network's Famed, "Cupcakes Wars". Kyra graduated with honors from the prestigious Le Cordon Bleu patisserie program, which gave her a solid foundation of knowledge about classical French baking techniques which she was able to apply toward baking gluten-free. Kyra was diagnosed with an auto-immune disorder when she was 20 years old. Part of staying healthy meant switching to a gluten-free diet, avoiding all wheat and overly processed foods. Whenever possible, she uses local ingredients, and serves customers with multiple allergies, as well.
About the Interviewer, Elisabeth Veltman
Writer, owner of Blue Pearl Strategies, and lover of all culinary delights, Elisabeth is a Tender Foodie. She started The Tender Palate, a website for foodies with food allergies where she consults with experts from every area of the Tender Foodie life. She believes that everyone should live deliciously and have a healthy seat at the table. Find her at www.tenderpalate.com.
This is the ultimate, healthy, B, C, and A Vitamin, Beta-Carotene-loaded, and anti-inflammatory-ily spiced side dish. The fat of the olive oil actually, according to Worlds Healthiest Foods, enhances your bod's ability to absorb the beta carotene. Cinnamon is one of the most studied spices for its anti-inflammatory benefits, too. Another side benefit of this side, is the sweet potato's high content of tryptophan, which might make those late night rummagings a sleep-supporting win.
Plus, if you need some lovin', this recipe is a quickie.
Preheat Oven to 425 degrees
Ingredients
2 large sweet potatoes
1-2 TBS of olive oil
1-1/2 tsp sea or kosher salt
3 tsp of cinnamon (approximate - size of potatoes vary a great deal)
1/4 tsp of fresh grated nutmeg (approximate - just kiss each potato as you grate the nutmeg on the top)
Combine & Roast
On a sheet pan, place a sheet of parchment paper. I like to use parchment because it helps veggies brown and caramalize, saves the pan (and if you place it correctly, you don't have to wash the pan... shhhh. Don't tell anyone).
Slice the sweet potatoes to be about 1/4 inch thick for soft potatoes and quite thin for actual chips. The thinner you slice them, the crispier the potato chips will be. Both are really good.
Place the chips on the parchment lined pan, then pour about 1 TBS of olive oil in your hand. Massage the oil over each sweet potato chip - tossing with your hands. Then sprinkle the salt evenly over the chips, and again toss the chips in your hands to spread the salt to both sides of the potatoes. Add more oil & salt if needed - depending upon the size of your tubers.
Evenly space the potatoes on the parchment - you want each chip's little bottom to be on the parchment (don't double up). this way the bottom will be browned. Sprinkle the cinnamon evenly over the top of each chip. You can use a sifter to be exact, if you like. I tend to use my fingers to pinch a little over the top of each. Then grate a kiss of fresh nutmeg over each chip.
Place into the pre-heated oven and roast for 30-40 minutes. Serve hot.
Makes a great partner to soup or roast chicken, or your favorite gluten-free sandwich.
READER TIP
Add a pinch of cayenne to your cinnamon for a little kick. Thanks Marti & Lori!
A NOTE ON NUT ALLERGIES & NUTMEG
According to FAAN (Food Allergy & Anaphylaxis Network),Is nutmeg safe?
"Nutmeg is obtained from the seeds of the tropical tree species Myristica fragrans. It is generally safe for an individual with a tree nut allergy."
Your doctor tells you to get a digestive enzyme, vitamin/mineral or a probiotic at your local health food store. You pick one up, take it and have an allergic reaction. Oddly, many supplements, even digestive enzymes are made or processed with top allergens like wheat, soy or dairy (even egg and yeast). Corn syrup is another highly allergic substance that is in many cough syrups and other medications. Corn can also be processed with wheat, so those with celiac and gluten allergies need to be aware of this. Even supplement companies that label their products as “free” of the top allergens may not be taking proper precautions during processing. Trace amounts can affect you, especially if you are highly sensitive / allergic to a food or have celiac disease.
Those of us who need supplementation to combat malabsorption need to be especially careful. For me personally, supplementation has been one of the most difficult areas of cross-contamination to uncover.
Take these steps to help uncover hidden allergens that may affect you:
Ask your doctor if the supplement contains your allergens. Make sure you have a complete list of allergens and that you review it with your doctor EVERY time your physician prescribes something for you.
Review the ingredient list on the bottle yourself. Look for trigger words like "starch" which can be derived from corn and rice (which could be cross-contaminated with gluten), wheat (contains gluten) as well as gluten-free items like potato, tapioca.
Before you purchase, call the company to see if the supplement was processed with your particular allergen(s).
If a medication, have the pharmacist keep a list of your allergens on file and review it with them prior to ordering the prescription.
If the medication is new, ask the pharmacist to get a statement from the medication company that none of your allergens are processed in their facility.
Contact your doctor if your research shows that the supplement or medication may contain an allergen on your list and ask your doctor to work with you to find something that will work for you.
Even medical grade supplements can pose a problem. If you have a reaction to a particular supplement, contact your doctor immediately to let them know. The only way to help solve this problem is by partnering with your prescribing physician, communicating through them how medications and supplements are affecting you, and finding dedicatrd facilities.
There are supplement companies who produce their supplements in a dedicated facility. Klaire Labs, for instance, is a dedicated dairy-free & gluten-free facility and one of the only places that I’ve found to get a dairy-free probiotic, and supplements that consistently work safely. Their probiotics are very pricey, but their other supplements are quite reasonable and effective.
OTHER RESOURCES
Also, here is a fantastic article from a pharmacist that breaks down the different ingredients in medicatons that could affect people who are allergic to gluten and who have celiac disease. it also breaks down some of the fillers, what they are made of and why, including other allergens like corn, soy, tapioca, and dairy, as well as substances that are derived from tar and chemicals. The one thing this article does not address is the cross contamination of normally considered gluten-free items like corn and rice. Sometimes these grains can be processed with gluten-based grains, and there are people who are allergic / sensitive to them.
I've been hearing rumors of studies that have been done on the amount of gluten in specific supplements, but I have not found links to these studies yet, nor studies on other allergens in medication. We'll post when we do, and if you find any, please share them with The Tender Foodie - I'll check them out and give a shout out to the community if they are viable.
This is the Third in a series of articles written by Kari, a mother of two boys, including a 10 year old son who was diagnosed with Autism (read Part 1 and Part 2). When Kari approached me with her compelling story, I asked if she would be willing to disclose it so that other parents could potentially learn from the path that she has taken. I thank Kari for her willingness to let us into her life, and take us through her journey from discovery to what has helped her son thrive.
~elisabeth veltman
AFTER DIAGNOSIS, A HELPLESS BLUR
The weeks and months following Caden’s autism diagnosis are a blur to me. Any time I stop to think about that time in our lives, tears fill my eyes. It still happens now, six years later. Without a doubt, I am an emotional person, but I have encountered other obstacles in my life and have adjusted emotionally. There’s just something about feeling helpless, unguided, and vulnerable as a mother that I cannot erase from my memory. Even though Caden has pulled through most, if not all, of his symptoms, the memories are still so strong. I still find it difficult to speak the words, “when my son was diagnosed with autism”.
Although it was a trying time for us, it was during those first weeks and months that so many pieces fell into place. When I think about everything that worked in our favor and all the decisions that were made, I can’t help but think we had a little luck on our side. It is because of this that I want to share our story.
TWO BOOKS QUENCHED MY THIRST FOR KNOWLEDGE
One of my first outings after returning home from Caden’s diagnostic appointment in Pittsburgh was to the bookstore. I had questions and I was going to find some answers. I didn’t know what I was looking for, but I made myself comfortable in the parenting section of the bookstore and looked through every book they had on the topic of autism. I came home with two, "Facing Autism" by Lynn Hamilton and "Overcoming Autism" by Lynn Kern Koegel and Claire LaZebnik.
"Facing Autism" provided me with an introduction to the many treatment options that were available. Hamilton’s story of her son’s treatment was clearly presented and included their experiences with nutritional and biomedical therapies as well as speech, occupational and behavioral therapies. After reading her book, and discussing it with my husband, we decided to try everything that made sense for our son and his symptoms, as long as we saw no possibility of causing him harm. This book introduced me to the gluten free/casein free diet, probiotics, and supplements that showed promise. With a degree in dietetics, I felt I had an advantage over most when it came to adjusting Caden’s diet. Her book pointed me in the direction of Bernard Rimland, who founded the Autism Research Institute (ARI) in San Diego in 1967. I quickly contacted ARI and requested information from them. It was this information that set the stage for what would become the focus of my own research for a number of years.
"Overcoming Autism" was co-written by a therapist along with a mother of a child with autism. This book was an excellent tool for me because I learned a great deal from each author. Claire LaZebnik, the mother, provided me with justification that my emotions were typical for someone in my situation. Lynn Koegel, who oversees The Koegel Autism & Training Center at the University of California, Santa Barbara, provided me with an excellent foundation for the type of therapy we came to rely upon. The title itself led me to believe that overcoming autism was possible, and that quickly came to be what I expected.
FINDING THE RIGHT EDUCATIONAL FIT
It was the late spring of 2006 and Caden had been diagnosed with autism for just a few weeks as his preschool year came to an end and we had to start thinking about what the correct placement would be for the following year. Caden’s special education case manager from the public school system suggested that we place Caden in their Preschool Initiative Program (PIP) at a local elementary school. This program was targeted at getting a solid start for kids with special needs or English as the Second Language (ESL). They told me that their speech and occupational therapies, with which I had been so disappointed during Caden’s first year of preschool, would be better in the elementary school setting because those therapists were school system employees as opposed to their contracted workers we had been dealing with previously.
I went to meet the teacher of this PIP class and I wasn’t impressed. I had only just begun to learn my way in this new world, but from my reading, one thing was clear. According to the authors of Overcoming Autism, it was in our best interest to keep Caden surrounded by “typical peer models”, kids who weren’t struggling, who spoke English and could serve as language models and positive playmates. When I toured the classroom, the students were gone for the day, but their pictures were on their cubbies. I noticed that eleven of the eighteen students in that year’s class were Asian, which meant they probably didn’t speak English. Because we live in a large university town, there is a lot of diversity. I love this about my town, and would have loved to have Caden surrounded by children of different cultures, but not in our unique situation. Differences in language could have been very confusing for Caden. I proceeded to ask the teacher if there was a large ESL enrollment and she said that there was. I had to wonder what good it would do to have Caden surrounded by a large majority of children who couldn’t speak his language, therefore couldn’t serve as good language models for him. I wanted to do what was right, but I had our local school professionals telling me something completely different than what the leading experts in the field were saying. I left feeling stuck.
Soon after, we attended Caden’s year-end performance at his current preschool. As he stood on stage, I couldn’t help but notice the progress he was making there. He was focused for the first time ever at one of these performances. I couldn’t hold back the tears, right there in front of everyone. I didn’t want him to leave. I knew in my heart that the public school preschool wasn’t right for him at all. He needed to stay where he was. When the crowds cleared out, I still sat there crying. My husband, who had been standing in the back of the church, along with the director of the preschool approached me. I completely lost it when I made my first attempt at explaining what was wrong. They quickly had a teacher take Caden and my other son, Nolan, to a classroom so we could talk. That talk was another turning point for us.
Sitting there that day, the three of us decided that Caden shouldn’t leave. The director said that she would do whatever we needed her to do to make this right for our little boy. His current teacher had done a fabulous job with him and we decided to keep him in her class. He would be repeating the three-year-old class, but that was fine. He wouldn’t turn four until July, so he wouldn’t be much older than his new classmates. The director assured us that it would be fine to let an outside aide or therapist come in to work with Caden, as long as that person went through all the background checks required by the other teachers at the school. We didn’t know how we were going to afford this kind of set up, but it felt better than the alternative and you can’t put a price tag on peace of mind. I admired her confidence. I appreciated her willingness to take on the challenges that our son presented. It would have been so easy for her to let us leave, but she didn’t. What a big heart that woman has. I was so thankful and I felt at peace with the decision.
CADEN’S ABILITIES
These decisions were being made as we approached Caden’s fourth birthday. At this point, he had some language, but his development wasn’t following typical patterns. He couldn’t answer a simple yes/no question. If we asked him if he wanted a drink of water, he couldn’t respond with “yes” or “no”. Instead, if he needed a drink, he would say “Do you want a drink of water?” I knew him and I knew what he meant. It worked for him, but it was far from being right. If Caden wanted to play with a ball, he would look at the ball and simply say, “Ball”. Once again, I knew what he meant, gave him the ball, and it worked for him. He couldn’t ask the most basic questions. “What’s that?” was the first question I taught him to say, following a technique presented in the Overcoming Autism book. He was one month shy of turning four and I was so incredibly excited to hear it! Caden had gotten good at labeling objects, but if I happened to tell him something incorrectly, it was very difficult for him to accept a correction. One time, I remember looking out our family room window and pointing out a crane putting a roof on a new house. From then on, every crane was a “crane roof”. And I was “Mommy”. He could label me, but he hadn’t yet figured out how to get my attention by saying, “MOMMY!” Every night at bedtime as my husband was leaving the room, Caden would say “Gotta get a good night sleep, school tomorrow”. As great as it sounded to hear a full sentence come out of him, we later learned that this was “echolalic speech”. He was simply repeating something my husband said once. Caden’s sensory issues were still very difficult at this age also. Crowds caused him great discomfort. We couldn’t take him to football games, amusement parks, or even preschool performances without potential for an enormous meltdown. We tried these things anyway and always respected his wishes to leave if he made them known.
OUR BIOMEDICAL BEGINNINGS
Even before going to Pittsburgh for Caden’s diagnostic appointment, a seed was planted in my head. A neighbor handed me a slip of paper that simply said “Gluten/Casein Free Diet”. I knew that casein was a protein in dairy, but I wasn’t sure what gluten was at that point, even with a degree in dietetics! The neighbor had an acquaintance whose autistic son had allegedly been helped by this diet. So, after we heard the diagnosis, I somehow pulled my thoughts together enough to ask the doctor about her thoughts on this diet. She explained that she couldn’t officially prescribe or even recommend it because there hadn’t been any scientific studies supporting it. Off the record, however, she did say that there was a local, well-known therapy provider who had been reporting some tremendous success with the gluten/casein free diet (GF/CF). We decided that it wouldn’t hurt to try!
The inclusion of information regarding the GF/CF diet was probably the reason I selected Facing Autism from the bookstore. Lynn Hamilton provided more than enough information to get my research started. I spent the next few months busily preparing myself for implementing this dietary therapy with Caden. I found sources for food online and at our natural health food stores. Six years ago, gluten free foods were hard to find and it took me about three months to feel confident enough to make the leap. This diet, along with a multivitamin recommended by the Autism Research Institute, were my first steps on what would become a very long path to restoring my little boy’s health, which I hadn’t yet realized was compromised.
CREATIVE SOLUTIONS TO LACK OF COVERAGE
When it comes to coverage, creativity and persistence were the keys. At Caden’s diagnostic appointment, when we met with the developmental psychologist at Children’s Hospital of Pittsburgh, we briefly discussed a plan for moving forward with Caden’s therapies. She suggested continuing with his speech and occupational therapies, but also wanted us to add behavioral therapy for Caden. Once settled at home, I called our insurance company and inquired about how much of each specific therapy would be covered each week. Maybe I was naïve, but I was shocked to hear that our insurance wouldn’t cover any of these therapies that had just been recommended by a doctor. I was told that because Caden was “born with” this affliction, nothing would be covered. What?! I was disgusted. If my son were addicted to heroin, rehab would have been covered, but therapies for autism were not. I will never understand the logic behind that.
In Pennsylvania, where Caden was diagnosed, children with an autism diagnosis qualified for Medicaid and received all of the necessary therapies, including behavioral therapy, but it wasn’t that simple in our state. Children with an autism diagnosis did not automatically qualify for Medicaid. They could apply for a number of waivers. I don’t pretend to completely understand the system (which is different now than it was then), but I was told that Caden could apply for the Developmentally Disabled waiver. The only problem was that there was a years-long waiting list for the waiver. By the time his name got to the top of the list, the most crucial developmental years would have been gone. The other possibility for some children on the spectrum was the waiver for the mentally retarded, but that wouldn’t apply to Caden. We called the Medicaid office anyway. And we waited a few days, maybe a week, for a return phone call. We never received one. Fed up with the inefficiency, my husband drove to the Medicaid office one morning and was determined to stay there until he had a solution. The first woman he spoke to told him that he needed to speak to someone else. That person was on her lunch break. He waited. He spoke with that woman who said she couldn’t help him, but another woman might be able to. She was in a meeting. He waited. He finally met with a young, new employee. She put thought into our situation and came up with an idea. It was possible that Caden could qualify for the Elderly/Disabled Consumer Directed waiver. It wasn’t a sure thing, but it was the only chance we had. About seven hours later, my husband came home with an appointment scheduled for a home visit and observation to determine eligibility.
The Elderly/Disabled Consumer Directed waiver was designed to provide alternative care to people whose conditions are so severe that they should be placed in a nursing home. Only the disabled person’s finances were considered and because Caden was a child and not gainfully employed, that wasn’t a factor. People receiving this waiver are able to hire their own home health aides to assist them with tasks of daily living; showering, grocery shopping, cooking, etc. There were a few things that helped Caden qualify. As strange as it sounds the fact that he still wet the bed helped. Also, we had to say that if my husband and I were no longer able to care for Caden, there was a possibility that he would need to be placed in a nursing home. Realistically, this likely wouldn’t have happened, but with my husband’s parents living out of the country and my parents caring for my paralyzed older brother, there was enough of a chance. We were lucky enough to qualify.
With the waiver approved, Caden received Medicaid as his secondary insurance carrier. Therefore, speech and occupational therapies were now covered for multiple visits per week. We quickly got started at a local clinic. I now had to drag two little kids to therapy visits, but that turned out to be the easy part! Behavioral therapy, which was to be the foundation of our program, was not covered by Medicaid. Not only that, I couldn’t find any qualified therapists in our area! I was learning the basics from the Overcoming Autism book, and was incorporating what I could. You can imagine how excited we were to learn that one of the therapists from The Koegel Autism & Training Center at the University of California, Santa Barbara was going to be offering an instructional clinic for professionals and caregivers at our local university…Like I mentioned earlier, luck was on our side!
“PIVOTAL RESPONSE TECHNIQUE” VS “APPLIED BEHAVIOR ANALYSIS”
The recommended behavioral therapy for Caden was Applied Behavior Analysis (ABA). When I think of ABA, I think of a rigid therapy program where the child is sitting at a table, working on skills for multiple hours each day with a trained therapist providing rewards for accomplishments. This proved to be impossible for us to acquire. But that didn’t matter to me, because I was already finding some success implementing a few of the techniques set forth in Overcoming Autism. This type of behavioral therapy was called Pivotal Response Technique (PRT). The main difference between ABA and PRT is that the latter focuses more on incorporating therapy into the child’s normal routine. It can be done at the park, while baking cookies, and while playing with toys of the child’s choosing. Most importantly, I could be the one doing the therapy and we didn’t have to rely on, or pay, someone else to come into our home and work with Caden. It seemed like we were heading in the right direction, but we were still unsure on how to proceed.
My parents were able to come and stay with Caden and Nolan while we attended the day-long PRT clinic on campus. We absorbed so much of what the speaker presented. It made sense and I understood the underlying ideas. To put it in the most simple terms, you had to make your kid perform a desired task to get rewarded. When playing catch, we would have to make Caden look us in the eye and ask us for the ball before we tossed it to him. If he sat down to play with a puzzle, we were supposed to hoard the pieces and prompt him to ask for each individually. If he wanted a push on the swing, he had to ask. Asking didn’t have to be an elaborate, polite question. We were starting with just a few words and we would build from there.
What we learned from the speaker at the clinic was probably not the most important accomplishment of that day. While taking a break in the lobby, I ran into a friend who had been involved in a playgroup that Caden and I attended when he was an infant. Dr. Chris had moved away after earning her PhD and I had forgotten that the focus of her graduate work was autism. She was sad to hear the reason we were there, but without hesitation she offered to help. She was then serving as the director of an autism center about 75 miles away and she assured me that this was the route we needed to take. All the pieces were falling into place.
MY SON CAN IMPROVE
Soon after the clinic, Dr. Chris came to our house for her first observation of our life with Caden. My husband and I were quickly impressed with her ability to get Caden to do what she was asking of him. She seemed in control of the situation and we liked that she had high expectations for our little boy’s progress. This was the first time I heard a professional suggest that Caden could be “indistinguishable from his peers”. To us, that sounded like an excellent goal and we were relieved to hear that someone had intentions of helping our son improve as opposed to the goal of accommodating his shortcomings that the school district had seemed to adopt.
Armed with a plan, Dr. Chris returned to our home on Caden’s fourth birthday. The focus of this visit was to offer further training in the methods of PRT, as well as introduce a behavior protocol. In my previous articles, I described the tantrums that Caden often displayed. These behaviors occurred multiple times each day and they made life incredibly difficult. They needed to end! I had tried everything I was supposed to. Caden would not simply stay in time out as other preschoolers often do. With such restricted language skills, we could not reason with him at all. We needed to up our game and Dr. Chris knew what needed to be done. She taught me about using a “least to most” prompting protocol. The first step was to give Caden an instruction with little else. If he complied, we would reward or praise him. If he didn’t comply, we would put a little more into it. For example, if we had asked him to put a ball away and he didn’t follow the verbal prompt, we would walk him to the ball, take ahold of his hand, and use our hand over his to put the ball away. Once successful, we were to follow up with a reward or praise. If at any point, Caden became aggressive, he went to time out. Because Caden wouldn’t stay in a time out chair or spot, and holding him down wasn’t an option because he would often turn his aggression toward me, this was not an ordinary time out. The plan was to put Caden in his room for time out and only let him out once he calmed himself down. In an effort to demonstrate the procedure, Dr. Chris asked Caden to do many things, hoping to provoke a behavior and she eventually did. We put Caden in his room for time out and closed the door, which he promptly tried to open. We held it shut, with him screaming and crying on the other side. It was heart wrenching. I cried, but Dr. Chris stood her ground and assured me that this was the right thing to do. I trusted her. It seemed like an eternity and as soon as he calmed himself, we allowed him to come out. His room was a disaster. My four year old had flipped the twin mattress off of his bed. The closet had been trashed and one of the doors had been pulled off its track. Caden was a sweaty mess. I took him to the couch and he fell asleep within minutes. We were all emotionally exhausted.
My Son is More Than a "Disorder"
With Caden asleep, Dr. Chris gave me instructions and then left. I was to record every instance when Caden didn’t comply with our instructions. I had to make sure to record the Antecedent (what happened just prior to the tantrum), the Behavior (what the actual bad behavior was) and the Consequence (what I did about it). We referred to these as the ABC’s and in order to understand more about Caden, we needed to be aware of any patterns that might develop. We removed nearly everything from Caden’s room so he couldn’t hurt himself and reversed the lock so he couldn’t escape. I also needed to take care of Nolan so I couldn’t stand there and hold the door during these awful tantrums. For the next few weeks, I focused on implementing this new behavior protocol with consistency and started recorded pages of data.
I knew that downtime was not beneficial for Caden. Any time he spent in “his world” stimming was wasted time. For Caden, “stimming”, short for “self-stimulatory behavior”, involved spinning wheels, rolling trucks in front of his eyes, and watching TV close up, out of the corner of his eye. For others on the autism spectrum, stimming can be more obvious with rocking, arm flapping and repetitive vocalizations. I made it my goal to keep Caden actively engaged as much as I could throughout the day. This, combined with keeping up with a toddler, was exhausting. I knew I needed some extra help, and this is where we got creative. With Medicaid, Caden qualified for respite care. Respite care generally involves having someone assist with daily self-care tasks like bathing, dressing, shopping, etc. I didn’t need help with those tasks, but I sure did need help with everything else! Someone suggested that I contact the psychology department of our local university to inquire about posting an ad in that building. The secretary had a much better idea and e-mailed our ad to every student enrolled in the program. We had more than 60 applicants to work with Caden. Because they were college students, they were willing to work for the $8.18 per hour that Medicaid was paying. They were so interested in having the learning experience that they probably would have worked for free! It took some time to weed through the applicants, but we ended up with three students who were simply amazing.
Our Team UNCOVERs BASIC DEFICITS BENEATH ADVANCED SKILLS
With the initial program started, it was time to figure out exactly what was going on with Caden. Dr. Chris suggested that we do some more detailed testing of Caden’s skills so we knew what we needed to work on. The test that was recommended was called The Assessment of Basic Language and Learning Skills (ABLLS). It provided a comprehensive review of skills from 25 areas including language, social interaction, self-help, and academic and motor skills that most typically developing children acquire prior to entering kindergarten. Because kids on the autism spectrum have a tendency to develop some advanced skills, unlearned basic skills can be difficult to detect. Caden could do many advanced intellectual tasks, but couldn’t ask for a drink of water. This testing helped identify his deficits.
When the ABLLS results were complete, we set up a training session at our home. Kate, a Board Certified Behavior Analyst (BCBA) from the autism clinic served as our program manager and provided this training to the college students and my husband and me. This was our “team”. And our team was amazing. One of the students, Erin, was specifically hired to attend preschool with Caden daily and had a classroom-appropriate set of goals to work through with him. Stephanie and Amanda each came to the house once each week for a few hours and worked with Caden on his home ABLLS goals or hosted playdates with him so we could focus on improving his peer interactions and social skills. We were assigned about four goals at a time to work through from the ABLLS testing. When those were met, Kate moved us on to the next goals. We strived for consistency in following the behavior protocol. It wasn’t easy for anyone. There were tantrums (from Caden). There were tears (definitely from me and Caden, possibly from Amanda). We all had a slightly different style, but we all found a way to have some success with Caden. We talked at our team meeting about what was working and what wasn’t and we all learned together.
By the time school started that September, our plan was set. We were on our way. We just didn’t know exactly where we were going.
The author, Kari, will be returning this summer with Part lV in this series. She will begin to discuss the powerful change in diet and how it helped launch her son into a new phase of healing.
Wednesday, November 7, 2012 at 5:03PM 
Elisabeth owns The Tender Foodie, a blog to help shorten the food allergy learning curve through a community of experts – including chefs, bakers, doctors, nutritionists, counselors, researchers, fitness professionals, and more. The Tender Palate will become an interactive website with tools to help people manage their food and health more successfully. 
