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November 10, 2002
9/19/02 Gluten free, the way it has to be
After much experimentation, we followed a very lax diet as far as gluten was concerned. When the sniffles and productive cough came back, we decided to go totally gluten free again. Trust me when I say, that is no easy feat. Almost every product in the store (unless it came straight from the ground or the slaughter house) contains some form of gluten or wheat derivative. I had been making regular trips to the health food store for spelt bread. Then last night as I was consulting my allergy cookbooks, I discovered that spelt has more gluten than plain wheat or white bread. That would explain Jaida’s behavior lately. There has been lots of acting out, yelling and blatant misbehaving. Yesterday was the last straw.
When I picked her up from school, she was sitting in time out beside another little girl. The teacher said they had been hitting. I looked at Jaida and she just stared back. When she came closer, I could see sand all over her neck and in her hair. I asked what happened, not really expecting an answer. Expressive communication in response to questions is still a problem for her. She was quiet and I kept prodding. Why were you hitting? Again, silence and a blank stare. I sighed and gathered her lunch box and some notes that were taped to her bag. We headed to the car and Jaida began to whine. “We meed to go two places?” she asked. I told her no, we were going to get dinner and go home. She started to stomp and whine louder, “No I don’t want to!” I pretended that I didn’t notice as I unlocked the car door. I coaxed her in and she continued to scream about how she didn’t want to go straight home.
As we rode a little ways, I asked what she wanted for dinner. We usually stop at McDonald’s every day. (Bad habit, I know!) She said she wanted Sprite. I told her I was not stopping for Sprite, we had some at home. She kept kicking the back of my seat and yelling. When she saw I was driving past the golden arches, she said she wanted 7-up from Hardee’s. (It’s a rival burger chain that doesn’t have Coke products.) Again, I reiterated that I was not going to stop just for something to drink. I kept driving and she kept screaming. When we got home, I told her to unbuckle her seat belt and get out of the car. She screamed that she was not getting out of the car. I closed the garage door and went to get Steve. I thought it was high time he witnessed some of these wonderful parenting moments. Besides, I was on the verge of losing control. Of course, the minute she saw me going into the house, she screamed, “Mommy, wait on for me!”
My mom heard the ruckus since I left the door to the house open and got up to console Jaida. She made a comment about Jaida being in a bad mood that morning before we left. I announced to Steve that his daughter was refusing to get out of the car and I was going to take a shower. He asked what had happened. I told him the same thing that happens every day. I was sick of the verbal abuse and name calling from a four-year-old. Every day was a battle to get her to do the simplest tasks. I had to beg and plead with her to behave and her promises were always broken. I used the time in my room to think. I decided to get out my allergy cookbooks and study up. There had to be an end to this crap and it had to come soon. I was at the end of my rope.
I was in my room, stretched across the bed reading when she crept in quietly. Steve had brought pizza home and they had eaten together. Jarod was taking a late afternoon nap and he had missed all the excitement. Steve sent her in to apologize to me. She walked up to the side of the bed. I looked at her, marinara sauce smeared across her cheek and her hair full of sand. “I’m sorry, Mommy,” she said. I sighed and closed my book, “Okay, Jaida.” She scampered off to the sunroom, satisfied that she had fulfilled her father’s request. I buried my head in my pillow and cried. Why did I have to be the one to always get the demon side of Jaida? She never acted like that with her father. He got respect from the beginning. Even Jarod was starting to look towards the door when we mentioned Daddy, if he was misbehaving. With me, they just smile and keep on doing whatever it is they want.
Over the rest of the weekend, the bad behavior continued. She called me and everybody except her father a variety of names. She would look at Jarod and call him ‘roast beef’ or ‘virus’. When we were getting ready to go to a birthday party for her classmate she started in on me. I told her to get her shoes and socks from her room. She smiled at me and said, “Okay, oink, oink pig.” She burst into giggles and my mom and I just looked at each other. I resisted the urge to smack her in her smart mouth. “Don’t call me names,” I said. “Okay, pig’” was her answer. I seriously contemplated not going a damn place. Since I had RSVP’d with Brianna’s mother already, I didn’t want to be a no-show. Besides, I had not socialized at all with any parents the year before. Now that Jarod was well (and drinking formula) and I didn’t have to covet every drop of breast milk, I could have some time away from him. I went anyway, against my better judgment.
The back-talking went on for the rest of the afternoon. Jaida did not want to leave the play area. I had to call her out of the jumbo, indoor slide to eat. She didn’t want to go, she wailed. I put on her shoes and socks and marched her to the table where everybody else was waiting for her and the birthday girl. I was chatting with some other moms and watching Jaida to make sure she was eating. I thought I saw her eat most of her Happy Meal. They brought out the cake and all the kids quickly got crumbs everywhere. Jaida came over and asked if she could go play. I said yes and she followed the other kids, screaming with glee. I waited until everything was cleaned up and the staff began the set up for another party. I went to get Jaida again and she said she wanted some cake. I was puzzled, “You had cake already, didn’t you?” She said no. I told her to ask Brianna’s mommy really nicely and she might give her some.
The moms were still talking about the upcoming fall fundraiser. I politely interrupted and told Mrs. M that Jaida had something to ask her. Jaida, always contrary, clammed up like a suspect waiting for a lawyer. Finally, I had to ask myself. Then when I told her to say ‘thank you’ she refused again. I tried to be careful to hide my embarrassment. Mrs. M just smiled and thanked us for coming. She volunteers a lot at the school so I knew she was used to Jaida’s peculiar behavior. Jaida was standing there, every facial muscle twitching and staring off into space. We made a beeline for the door.
We had to stop at the store to get Pediasure for Jarod and she kept acting up. When we got in line, I tried to usher her out of the way so the lady behind us could unload her cart. Jaida kept jerking her shoulder out of my grasp and yelling. I told her that I hoped she had a good time at Brianna’s party because that was the last one she was going to for a long while. Probably not until her own party next year.
10/04/02
I’ll admit the first few days were rough. Jaida was used to eating something from a fast food restaurant at least once a day. She cried and protested when I said we were going to eat at home. The ride home after school became torturous. She would yell all the way that she didn’t want “sumping from home.” After tackling dinner, I was ready to move on to lunch at school. I had to come up with something that could last in a lunchbox with a cold pack and still be edible at lunchtime. At first, we tried leftover chicken nuggets or pizza on wheat free crusts. Soon, Jaida tired of those and I had to find new options.
I got some more cookbooks and a bread machine. I decided I can’t do real scratch bread. But I can measure and pour ingredients into a pan and close a lid. I thought we should have some type of bread for turkey sandwiches and the like. I found a bread machine on eBay and bid successfully. My first attempt was a disaster, so I moved my focus to something else for a while. In the meantime, I ordered a bunch of stuff from Miss Roben’s GF catalog and made frequent trips to the health food store. I started with GF pancakes for breakfast. All the mixes I tried were less than impressive. Some didn’t brown right and others didn’t seem to get done in the center. Jaida turned up her nose at all of them without even tasting one bite. I did strike gold with the GF blueberry muffins I made, until she tired of them on day 3. Back to the drawing board.
Soon the moods lifted and the yelling ceased. Just like a storm that blows up from nowhere, it left almost as soon as it had begun. We all talked about how nice she had been since the dietary changes. It was nice to have fun with her again. Frankly, when a child constantly misbehaves it can sometimes get hard to like them. Even when you know it’s not their fault and the behavior is very unusual, it still wears on your nerves. I couldn’t wait to try out some new recipes.
11/10/02 Successfully Gluten Free!
I admit it has been a challenge, but I now make all of Jaida’s meals. Most importantly she is eating my substitutions with little or no complaint. I sold the bread machine that I really didn’t need or use and bought a KitchenAid mixer. I don’t how I made it so far without one. Talk about progress! I just wish I had bought one sooner. I now have five GF cookbooks and I use them daily. I’ve made bread, pizza crusts, cupcakes and soon I’ll try pie. The things I make are just as good as the real thing and I will have my first test next week. For Jaida’s turn for snack day, I’m planning to make ginger bread mini muffins for the whole class!
At Jaida’s recent appointment with her neurologist, he suggested going totally dairy or casein free as well. That cut our list of acceptable foods in half. A blood IGg panel had shown sensitivity to soy so what was I supposed to use for milk? Dr. Corbier said that since her level of allergy for soy was only a 1 (out of a scale of 1-4) it was okay to use it. He also said that the breakdown of casein was so similar to gluten, it was necessary to take both out of her diet to give the gut a chance to heal and seal up. After a few months of being totally gluten and casein free, we could try adding casein back slowly. She may be able to tolerate it then with some dietary supplements of digestive enzymes.
The extra work of the diet is forgotten when I can have a conversation with Jaida about her day at school. She can tell me what she did and what they have planned for the next day. One afternoon as we were getting into the car, she told me, “We gonna carve Ms. Kaffy’s pumpkin tomorrow!” Even Ms. Kathy, her teacher, had commented on her improvement too. Instead of running in circles, screaming and laughing hysterically, Jaida now plays quietly and rather imaginatively in the evenings until bedtime. It’s sheer bliss! I'm finally reveling in all the normal things she is capable of now that other parents take for granted. I do have to be extra careful by reading food labels and supplying all her snacks for school, but it’s all worth it. I think we may be able to achieve Dr. Corbier’s goal of total recovery after all.
Until next time,
Kim, Jaida & Jarod
PS~ I am having breast reduction surgery on Tuesday, Nov. 12. If I'm tardy answering posts on my TTM board, I have a good excuse. I'll probably be somewhere slobbering on myself in a Percocet-induced stupor. Wish me luck! :o)
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