Update on the diet

I really, really wish I could write more on my blog. I would every day if I could. It is just so hard to find enough time to devote to it. Now that the school year is back in full swing, and I am trying to do lots of things to the house as well, and Julianna is involved in therapy, and not to mention I have a very demanding toddler, it just can't happen. But I am at least trying to do it once a week! It's a good goal for now.

So we did allow Julianna to eat regular food as of one week ago. So far she's had only a few instances where I second guessed this decision. She had a horrible tantrum right before we left for church this past Sunday, one so bad that I thought for sure it was because she was eating gluten and dairy again. We were in the car when it happened, and Nathan even started saying "STOP!" in his car seat because her screaming was so out of control. But after allowing her to calm down in the car before we went inside, we were able to talk about why she got so upset (it was because we didn't let her bring a certain book to church) and I was able to ask her if she thought the foods she was eating were making her feel more angry. She said no, that she was just mad that she couldn't bring the book.

And I think she's right. Allowing her to eat regular food really hasn't changed her behavior one bit. She's still Julianna, and that means if you do not let her do what she wants, she will get mad, really mad. And this is something we are working on. I guess what made this tantrum exceptionally bad was the fact that we said no, she couldn't have the book, and she really, really had her little heart set on having that one particular book. I should have known she would tantrum like that. Over the years, I have been able to identify many of her triggers. But we were in a hurry, we didn't have time for her to go get it, and I thought she might be able to just let it go. Well, lesson learned.

But I would say overall, she has shown no adverse reactions to being on normal food again. She is so excited to eat regular bread, cookies, milk, cheese, yogurt, ice cream, crackers, the list goes on. I feel like as long as I continue the 1, 2, 3 Magic with her she will stop her tantrums and learn to control how she reacts to different situations. We have told her that if she can go 21 days in a row without biting or screaming, she will get a new doll. So far she's made it 2 days in a row. And then we will work on the next troubling behavior so she can continue learning how to appropriately respond in troubling situations.

Being her mom is not always easy. I often feel like I'm walking on eggshells, trying to avoid any type of outburst from her. But lately, I have started to relax a little bit more, because she really is loosening up herself. I just take things one day a time.

And by the way, remember how she randomly said to me, "You're the best mommy ever"? Well, that has turned into her new thing. Now, after she says or asks something, she'll say, "You're the best mommy ever." And actually, she has changed that a little, all on her own, and instead she says, "You're a dynamite mommy." She liked the phrase from "Wreck It Ralph." She really makes life interesting!

Julianna's GFCF diet--time to stop?

Back in the beginning of June, I started Julianna on the GFCF (gluten-free, casein-free) diet to see if it would help improve her troubling behaviors and tantrums. I felt inspired to do this, that it was truly an answer to prayer in helping her overcome the screaming and biting that we have been struggling with for so long. And not only have we been struggling, but Julianna has, too. She had gotten to the point where she was tantruming so many times each day, that she was the one that she wanted to stop, and that it bothered her that she couldn't do it on her own. So in my mind, when you have a child that has already overcome so much already, this was something that I knew we could conquer. And it was either going to be some type of medication, or a strict diet that has been proven to help children with autism in countless studies. We did medication in the past, for about a year, and all I noticed was that she gained a lot of weight. Only very slightly did I notice any improvements in behavior.

But I still took her to a psychiatrist, for the first time back in June as well, because I couldn't make up my mind. He prescribed a few meds, she took them one day, and let's just say it did not go well. Most likely too much medication. So I then took her to a psychologist, and at first I wasn't very impressed, and the summer got busy, and we weren't able to see her as often as we should have, but I had already started the diet, and knew that I wouldn't see any results right away.

Then we took her to see this psychologist in August, and she introduced us to a discipline method called 1, 2, 3 Magic. It's kind of old, from the 90's, but as I listened to her describe the method, I really felt like this might work for the screaming and hand biting. She let us borrow some CDs so we can learn all about the method and how to implement it, and we started using it, with her and her brother, because hey, he's got some issues with misbehaving, too! Within one week, I could not believe how much her tantrums had decreased, but it sure wasn't easy. Every time I saw her start to bite her hand or scream, I would say, "That's 1." And once I got to 3, I had to drag her to a time out spot (our laundry room) where she would proceed to scream for about 10 more minutes, and then I would start the timer for the time out. It had become so routine, these time outs, that when she knew she was done screaming, she would say, "Okay, Mommy, you can turn on the timer." So doing this, over and over, was starting to work. I couldn't be happier.

And then during all of this, she has been receiving ABA therapy for 9 hours a week. Every Monday, Wednesday, and Friday, her therapist comes from 2-5 and works just with her, mostly playing, but amongst all that play, I really think Julianna has been learning coping skills as well, and how to interact better socially. Though it was a lot of hours to commit too, I didn't give in. I knew that this time for her was desperately needed. For her to get 1:1 time at home for 9 hours a week was more than I could ever give her.

So about one week ago, I noticed that the biting and screaming was almost nonexistent. I wasn't getting on her about doing it like I used to. She wasn't being sent to time out as much. And then I realized it had been almost 4 months since she started this diet. I began to think about all the elements working together in this girl, and if they were finally showing the results we had been hoping and praying for. Seeing the psychologist, doing the 1, 2, 3, Magic, 9 hours a week of therapy, and the GFCF diet might have just almost eliminated Julianna's need to scream and bite in frustration. Could it really be true? Could all of these things actually be working together for Julianna's good?

I even started a chart where she would get a stamp whenever she would ask for help instead of resorting to biting or screaming. The chart was filling up. And she also got a stamp if she went an entire day without those behaviors. She had earned a stamp for that at least 3 times, which is HUGE for her. Come to think of it, I might owe her one of those stamps because I'm pretty sure I didn't see her bite yesterday, either. I really want to pinch myself sometimes! But I can't give up yet...I have to make sure that her brain is literally changed, that those little impulses that she used to have will never come back, and I think it will take more time, and diligence on my part as well, and also a lot of patience.

So why then would I allow Julianna to eat the party food in her class today that contains gluten and dairy? Sounds crazy when you've just read how I think it has been helping. Well, the last month or so, I would get that little thought, something has to go. You know when you have so much going on that you just can't do it all? And you begin to look at your life and think, what's one thing that can go right now? Every time I had this thought, it would always lead me to the diet. And now that she's back in school, there have been a few times where mistakes have been made on the diet. And even at home, I always wonder if I'm really doing it 100%, because you do have to do it 100% to make it work. So today, I told Julianna she could eat some of that food as an experiment to see if it will affect her behavior. I have read that once a child has gone GFCF and is exposed to one of the foods, the behaviors increase dramatically again. Letting her eat these foods today will help me determine if the diet really is necessary.

I have to admit, I am a little worried about what might happen. But you can't deny those feelings you get as a mom, you know? I doubt I will get a phone call from a frantic teacher saying Julianna has gone crazy. But what I do know is Julianna is old enough and mature enough to tell me if she feels different, or worse, or that she is having trouble controlling her impulses. I trust that she can communicate that to me now. What a wonderful blessing that is. So we will see if this diet continues after today's little test....

Julianna, Part 13: We're all caught up!

So in the last post I talked about how Julianna got a 1:1 aide written into her IEP. This was a huge milestone as far as what I have been able to accomplish for her in the school setting. I can't say enough good things about 1:1 aides, and especially the one she was assigned to, and still has now. Her aide has been hard-working, motivating, patient, reliable, responsible, informative, helpful, I could go on and on. Without that aide, Julianna would not be able to attend public school and reap the benefits of being around regular peers who model appropriate social behaviors for her. It also takes a lot of the worry away from me. The first couple of years, I worried about how she would do on her own at school. She doesn't always know where to line up, or follow procedures, or stand up for herself if she were bullied (or something even worse). Having an aide be her "shadow" means someone is always there to stand up for her in those situations, and to give Julianna the tools to improve socially and academically. I feel very fortunate that Julianna is starting her third school year with the same aide who has become such a support to her. She has made great progress in school and because I have things set up for her there, I don't have to worry anymore. I can send her off to school, confident that she will be in good hands. A huge burden lifted for sure.

Now this aide isn't the only person who has been supporting her the last few years. We also have a wonderful respite worker who is provided by the regional center who has been helping me in the home, 30 hours a month, for almost 3 years. What we know about Julianna is she will behave very well in school, and then come home and unleash all that pent up frustration and anxiety on the family, usually in the form of major temper tantrums. This means we have been living with temper tantrums for almost 9 years (she started around 2 years old). I have other demands on my time and cannot always spend that one on one time that she desparately needs and thrives on. Our respite worker can be there for her in that way to engage her in activities to keep her focused and happy. The tantrums still come, and we are working on it, but it is such a relief to know that I also have someone in the home to help as well for 30 hours a month.

And I can't stop there, either. We also just began ABA therapy again a few weeks ago. She will be receiving 9 hours a week, MWF from 2-5, where someone works one on one with her during that time, teaching her life skills, social skills, coping skills, and whatever else she needs. Through this program, I also receive parent training on how to cope with the tantrums and behaviors that are never seen by the therapist because Julianna is so good at hiding them. Just yesterday, a therapist came over to talk with just me about what has been going on in the last few weeks with her, and we were able to come up with great ideas on how to approach these problem behaviors. And her new therapist that works one on one is just wonderful! She is positive, outgoing, and fun, something that Julianna really loves. She always has great toys and games and crafts that she is bringing over to keep Julianna engaged. Again, a huge stress relief for me, because she gets even more 1:1 time.

We are also seeing a psychologist a few times a month, and she is helping us figure out how to approach the problem behaviors as well. She introduced us to the 1,2,3 Magic behavior program, which is so simple to implement, and just started using officially on Wednesday. When my older kids talk back, or fight, or hit, or whine, etc, I say, "That's 1." If they persist, "That's 2." And if it still doesn't stop, "That's 3, time out" (1 minute for each year of life.) We have been doing the 1,2,3 for her tantrums and hand biting, and so far, it is working. But I know it will not be easy. The biggest part of this program is to not show emotion when you are disciplining, and that is really hard for me. Because of the struggles I have with the kids, I often feel angry and bitter, something I need to work on as well. Those emotions are always at the surface, waiting to boil over to the family. When I am faced with tantrum after tantrum (and if you don't have a child with autism, you don't know how bad tantrums can be) my patience is pretty much gone most of the time. But showing anger doesn't solve anything. So I am trying to be strong and in control right now!

We are also making a chart for her to reward her when she asks for help instead of biting and tantruming. Whenever she can't do something, she will automatically resort to a tantrum. So not only are we doing the 1,2,3, we are encouraging her to use her words and tell us what she needs first, and she will be rewarded with stickers on a chart. This will not be easy for her, but I have gone long enough with these behaviors in our home. So I am going to stick to this plan try my best to help her stop these behaviors once and for all!

She is also still doing the GFCF diet and doing so well on it. At her age, she totally understands what she can and can't have, and has never really complained either. Last night, we went with our respite worker to McDonald's for a treat after Julianna's horseback riding lessons (which she is getting really good at, by the way,) and even though everyone else got ice cream, she was content with her french fries, and when we got home, I made her some chocolate almond milk. We have made the diet work just fine even though the rest of us are not on it. Our goal is to get to her 11th birthday in December, which will be 6 months. If we think she has improved enough to continue the diet indefinitely, we will do that.

What I have learned since being her mom is that each new phase presents challenges. Once I get through something difficult, another problem presents itself. It is typical of any child, actually, and in many ways, it is a blessing, because it is helping me learn new skills and tools that I can share with other moms who might be struggling. I treat Julianna just like our other kids and include her in everything we do as a family. She is going to learn what she will learn in school, and in the home, and we will take her as far as we possibly can. I don't know what the future holds, but I keep holding on to the hope that she will be able to have the same opportunities as anyone else. And if not, that's okay too. We will be there for her, no matter what.

Our trip to Utah, and what I learned about Julianna

(Before I share our experiences on our trip, I want to make a little disclaimer: We had so much fun being with family! We live far away from most of them, so to be together is a huge blessing. But every time we take a trip as a family, we learn a lot about Julianna and how we can make things better. So this post is mainly about the challenges we faced, and how we tried to overcome them.)

We left July 3rd for Utah, to see our new niece get blessed, and to visit my family there. This time we broke up the drive and stayed the night in St. George. Besides the difficutly in getting Nathan, our 19-month-old, to sleep that night (we made a makeshift fort over his crib by shutting the comforter in the door and weighing it down on the other end with our cooler) it was a great idea. We were able to go swimming as a family and have a break before we finished the drive the next day.

We arrived at my mom's house to drop off some things and say hi to one of my sisters and her kids, and then headed up to meet Joel's sister's family and see our new niece. They got us into FantasyCon in Salt Lake City for free, so we got to see some interesting displays, people, and a giant dragon. Julianna even waited in line with Joel to shoot some arrows at a target. Then we headed to one of their relatives' houses to hang out and watch fireworks.

The word "fireworks" used to fill Julianna with dread. We have spent the last many years doing fireworks at Joel's mom's house, not too far away. I remember when she was around 3 or 4, she would sit inside behind the sliding glass door because the sound was too loud, and the bright colors scared her. Finally, just a few years ago, she was able to move outside and watch, but with much caution. This year, she couldn't wait for the fireworks, and stayed out longer than anyone else watching them. I love seeing progress.

Another thing we did in Utah was hike the Y mountain. Joel and I both graduated from Brigham Young University in Provo, Utah. The nearby mountain has a big Y in it, and a hike that you can do to get there. I don't remember it being very difficult or long, so we decided to try it with our kids. Nathan literally cried the first 10 minutes straight as we situated him in the hiking backpack and got started. Once we got into the hike, Blake stayed with Joel and Nathan, and it was Julianna with me. Before long, we were lagging behind them, and Julianna complained of her legs hurting, and wanted to stop at every switchback to rest. There were times when she wanted to stop, but I kept encouraging her. When we made it to the top, it was a big sense of accomplishment for both of us! The way down was not any easier, because she felt like she was sliding down the trail at times, and her shirt sleeves were bothering her and causing her to stop and scream about it. But we survived, and it was a great experience.

 

 

Another day we decided to go to a nearby water park. I knew that this would prove challenging, and I was completely stressed about going. Nathan has the tubes in his ears, which means he cannot get water in them, and lately he has not wanted to wear his ear plugs in the water, so I had no idea how I would avoid getting water in his ears. Julianna, as I shared recently, just finished swimming lessons, and made big gains, but the crowds, people splashing, and the noise would be a challenge for her. She immediately decided she was going to wear a life jacket once she saw them hanging up, and she mostly wanted to stay in the lazy river, and run in the water spraying area.

 

Our passes included a free pizza and drinks. Now most of you know Julianna is on a gluten free, dairy free diet, and pizza clearly has both. As I waited in a very long line to get the food, I thought, I'll just take the cheese off, and she can eat the crust. I got closer and realized, duh, the crust has gluten!! I began to rationalize, thinking that eating pizza just this once would be okay. Then I realized I did not have my debit card with me, and there was no way I was standing in that long line again, so it made even more sense to just have her eat the pizza. But then, when I went to order, I suddenly had the idea to ask if I could substitute two of the drinks for french fries. Unfortunately, they could not do that, but they said if I went to the pick up window, I could order the fries there instead of waiting in line again. So that's what I did. People are really understanding when your children have special needs, I have found. And to end the day, Julianna went down one of the smaller slides! Progress! (she is on the left, Blake on the right, below) And Nathan did not get water in his ears. Success!

 

 

 

The very next day, my dad rented a giant 20-ft waterslide for the backyard and everyone was having fun on it. Julianna went down before I even got out there, and told me she was brave and did it! I couldn't believe it! But the slide was scarier than she thought, so Joel spent the rest of the day convincing her she could go down one more time. She did, with a bribe to get a dollar store prize. Yes, this is how we get Julianna to do hard things. It works, most of the time.

 

The last experience I wanted to share was our trip to the zoo. Almost my entire family was able to go together, a rare experience. I was dreading it, knowing how challenging it would be with Julianna. Right when we got to the front gates and were waiting for everyone to arrive, there was a little pond where people had thrown pennies in. I gave my kids and some of their cousins a penny, and everyone threw theirs in, except for Julianna. She said, I want to save my penny, because I can buy something in the zoo instead. I told her she could keep the penny, but that there was nothing in the zoo that would cost one penny. So we went in, lasted no more than 2 hours because of the extreme heat, and as we were all leaving, she kept asking me about spending her penny, and that she wanted to look at the toys. I told her there was nothing she could buy with a penny, and that we weren't going to let her look because she would want to buy something. This resulted in a huge tantrum, the biggest I've seen in a long time, so big that people were stopping and starting, whispering to each other, shaking their heads, etc. I told her none of the cousins were getting anything, so it wouldn't be fair for her to get something. I ignored her, I tried to help her, and in the end, I had to drag her out of the zoo kicking and screaming, all the way to our car. It was awful. But this is the chance we take whenever we go to a public place. Sometimes things go really well, but usually we are faced with major tantrums. This is our life. I don't think my family even knew how bad it could be, because she is really good at hiding it most of the time.

 

 

Julianna with Blake and their cousins Will and Bradley.

 

 

Later that day, as we were packing our car to leave, she had another major tantrum. My mom and dad came running out, because they thought she was really hurt. I broke down crying, because after over two weeks, I was done! After some comforting words, we were on our way home, and I was looking forward to being there again. Familiarity is good for Julianna.

 

I sometimes think I have valid reasons for never taking Julianna on family trips, or to water parks, or hikes, or zoos, or any public place, really. I know that tantrums and explosions are inevitable. And this time I had to factor in the diet and making it work while we drove, and at my parents' house, too. I could have easily thrown in the towel and said, sorry, we aren't coming, it's just too hard. But so far we never have. And we will continue to make the trip, because I feel that every new experience helps her to grow, to develop new skills, to expand her horizons. I would be a horrible mom if I didn't continue to push her to do things that are out of her comfort zone. No matter how much it stresses me out, and to be honest, my stress level is always extremely high, I will push forward. She is part of our family, and part of our life--nothing is exempt from her, and the greatest thing is, she wants to be a part of it all, too!  

 

 



Setting up a GFCF shared kitchen

This week I have been busy setting up the kitchen to make sure none of the gluten-containing foods contaminate Julianna's gluten free ones. I found a great pin that explained how to do it, and the more I read, the more overwhelmed I became. She talked about using separate sponges or scrubbers for dishes, separate hand towels to dry with, and the biggest one that I knew I wouldn't be able to do was to put all gluten foods in one corner, and make sure you only prep gluten foods in one specific area, and then gluten free ones would be everywhere else. I felt like this would be impossible to do with my family. Making sure that they only place gluten foods on one area all the time was just a huge job. So I kind of personalized my kitchen to what I thought would work for Julianna:

I first cleared out one cupboard large enough to hold her GF cereals, snacks, and baking supplies, so it would not be contaminated by gluten foods.

I then cleared out the drawer and cabinet below for her own silverware drawer (because I figured others would be touching and dropping crumbs into the family silverware drawer) and her own dishes and baking supplies (again, because I didn't want fingers or crumbs contaminating the things she was putting in her mouth.) I even found a great online deal for a whole new baking set, and then for her own dishes, I used glass Corelle bowls and plates that I already had, and some glass mugs for now. No more plastic, since plastic is porous (as my wonderful respite worker pointed out) and might trap some of the gluten. I feel very OCD doing this, but I figured if I'm going to do this diet for Julianna, I am going to do it 100%! I just went to the dollar store and got her a silverware tray and some new silverware. Nothing fancy.

 

 

 

I made sure to label the area GFCF so the family knows not to touch it or prepare food on it. I told Julianna that she has to get her cereal in the morning in this area, and her snacks, too, and no where else in the kitchen. The great thing about this is she is old enough to understand, and listens. She knows all about the diet, and her respite worker brough some cereals that were GF, but one contained soy, which we have also removed. I told her she couldn't have soy. The next day, our respite worker brought a different GF cereal, and Julianna asked her, "does it have soy in it?" She gets it. The other thing that was really cute...when I was all done getting her area ready, she said, "Mommy, it's like I have my own little kitchen!" Here's what it looks like.

 



 

She has her own fruit bowl, her own cooking supplies (which she is really excited about), and I did do the hand towel, and gave her a hook to hang it on, away from the other hand towels. Success!

 

The other thing I did was get her a new sponge and scrubber, and dish drainer for her own dishes to keep them separate from the gluten foods that would be in the sink. I told her she needs to wash all her dishes when she is done and place them there. Again, she is old enough to do this, so it is working just great. She did all these dishes by herself!

 

 

 

The last project to tackle was the fridge, and this was by far the hardest one. I HATE cleaning the fridge, but again, I will do it because at this point, it is absolutely necessary. I had to get all those little gluten crumbs out of there! The pin I was using recommended either getting a separate fridge (not going to happen right now) or placing all GFCF foods on the top shelf, so no other crumbs can drop down below. So I began taking out the shelves in the fridge, and noticed that there were little crumbs in the grooves. I had no choice but to take all the shelves apart, and clean all the little crumbs out that get in those crevices. It took me a VERY long time, but I am confident that nothing will contaminate her shelf in the fridge, and hey, my fridge is a clean as it was when I bought it almost 8 years ago!

 

 

So there you go...my kitchen is ready to be completely GFCF now! I feel so much better. I just hope we can stick to this system and that it will show results. The diet takes at least 6 months before you really see a lot of changes, but I am going to stick with it! I have already noticed subtle changes in her mood, and best of all, she really feels special knowing she is on a special diet and has her own "kitchen!"





Adventures in GFCF cooking

So this past Thursday night, I got out all my cookbooks and recipes, looked through my pinterest and facebook posts, and set out to make a monthly menu for dinners and treats that are gluten-free, casein-free. I also wanted to make sure they were kid-friendly and husband-friendly. After a few hours, I came up with a great meal plan that I can use for each month, and even wrote out a shopping list for each week that included all the items I need to purchase for the meals. Now I don't ever have to write another shopping list or meal plan (unless there are some meals we end up not liking, but I don't think we will, because they all look really good!) I felt very proud of myself for doing this and it made me even more excited to try all these fun recipes.

Yesterday, while Nathan napped, I set to work on a few of them: GFCF sandwich bread, No Bake Energy Bites, and Homemade Rice Milk. Julianna helped me make the bread, and after that, she was done. Now I must tell you all right now...I am NOT a breadmaker. I have never successfully made a loaf of bread in my life, so I have avoided it all these years. But this recipe looked really easy, and I was so excited when I actually saw my bread rising on the stove! My bread was RISING! I couldn't believe it. But then it rose so much that it looked like it was overflowing.

 

Yep, my stove is not perfectly clean. I have three kids. I am not attempting to be a cool mommy food blogger here. I am just proud that I made bread that actually rose!

 

 

 

And since I am not a breadmaker, I decided it would be a good idea to split the dough into two breadpans and continue to let it rise on the warm stove. So I did that, and I got worried, because it wasn't rising that much anymore, but after an hour, I hoped that maybe it would still cook okay. And...it did, but it was not pretty anymore, and only about 4 inches thick, but once it cooled, Julianna ATE IT! She ate GFCF bread that I made! (Today she wouldn't eat it, but that's another story...)

 

 

So while my bread was rising, I went on to the next recipe: No Bake Energy Bites. These sounded SOO good: peanut butter, honey, rice krispies, coconut flakes, cinnamon, and marshmallows all mixed together and then put in the fridge until they could be formed into bites. Here is the final product:

 

 

 

 

 

The recipe called for mini chocolate chips, but I could not find any that were dairy free, so I went with marshmallows. It worked well after giving them a little more time in the fridge to harden. And they are delicious! Fun to make, too. This is a double recipe.

 

 

And the last thing I made was probably the easiest: Homemade Rice Milk. You literally boil brown rice, let it cool, add 1 cup of cooked rice to 4 cups of water and a tablespoon of sugar in a blender and blend for 3 minutes. The final product is rice milk, and the price is a lot cheaper than buying it! Now, Julianna does not like rice milk in her cereal, but for cooking I thought it would be better to use rice milk when milk was called for to save some extra money. And since the process was so easy, I will definitely be doing this again! The cool thing is, now if we ever run out of milk and for whatever reason can't get to a store, I know how to make milk with rice. I guess if we were really desperate, we would drink it. I tried it, and it wasn't too bad.

 

 

 

This made about 1/2 gallon of rice milk.

 

 

 

So my first Saturday was mostly a success! I will keep working on the bread until it's good enough to make her toast and sandwiches with. My kids kept asking me why I was cooking so much. I guess they're not used to me doing this. And it's true...lately I have been lacking in the cooking area and allow myself to think I am too busy to make good things for my family. But in reality, I am not, and just need to put in a little more effort. Now that I have my monthly plan with 4 new recipes each week, enough to have leftovers the other nights, and some good desserts planned as well, I am looking forward to cooking again! And I will try to include the kids more in the process.

 

If anyone is interested in the recipes, let me know! You can also look at my pinterest page or GFCF page at the top of my blog with a link to some, too. 





 

 



Going Casein/Dairy Free: Starting Over

On Monday I announced that Julianna would be going casein free, the first step in implementing the GFCF diet. The week before that, we found a milk that she would drink: original almond milk, sweetened. I like the Blue Diamond Brand, but I'm sure Silk would be fine, too.

So this week, when buying products at the store, I made sure to read every label and make sure there was no milk or soy in the ingredients. Luckily, her cereals and crackers do not have milk. Instead of her usual cup of yogurt after school, I made some cook and serve Jell-o pudding with almond milk. It did not set very well, but it tastes good, and she has been eating that every day after school. Snacks included Fritos corn chips, fruit, rice cakes, and dinner has been either cereal (I'm not that prepared yet!) or pasta, because most pastas do not include milk, although they do have gluten, which I don't have to worry about yet. I also made sure to buy natural peanut butter, Skippy All Natural with Honey, and Welch's jelly. Most breads include milk as well, so I have been giving her a peanut butter corn tortilla roll-up instead. I felt accomplished, and ready to see how going without milk would affect her behavior.

This morning, as I was spreading the peanut butter on her tortilla, I realized that I was using the same peanut butter jar to spread on the milk-based bread for Nathan at his lunch time. Oops. Though there are only traces of milk in the bread, it is something, and that means I contaminated the peanut butter jar. So I made a note to buy Julianna her own peanut butter and jelly and I will label it clearly! No harm done, just start again tomorrow.

And all week, I have been meaning to tell her one on one aide at school that we have started taking milk away from her diet, but keep forgetting. I would reassure myself that her lunch was milk-free, and I would tell her not to let anyone at school give her food. Well, this morning, I finally remembered to tell her aide, and she said, ooh, she's been drinking milk at breakfast every day this week, and eating a muffin, which no doubt was made with butter or milk. I didn't even know she took Julianna to breakfast! I guess the school has a free breakfast, and they also serve it again at recess, and that's when Julianna would go, and this girl was willingly drinking milk even though all week I've been telling her she can't drink regular milk! I looked at her, and asked her why she was doing this, and she said, okay, okay, I won't drink the milk anymore! Sneaky little girl.

So my first 4 days were a flop, but at least I have two weeks to get this diet figured out and refined. So glad I am taking it slow this time, and not cold-turkey. There really are so many things to remember when you implement a diet like this, and I am sure it will take the full two weeks before I can say she is casein-free! Not giving up yet!

Over the Edge

Yesterday I wrote about how my life is crazy, and it really is. Most days I can handle the crazy, as long as the kids go to bed at a decent hour and I get enough time to myself to breathe and relax. Today I was literally pushed over the edge and lost it, and I think I scared my kids and husband just a little. I couldn't handle the constant noise, fighting, loud laughing, I was done. I shut myself in the office, cried, and now I am going to write about what has pushed me over the edge today. I told you I would tell you how it is, and this is the HONEST truth. I hope you're ready to hear it.

Being a parent of special needs children has highs and lows. The highs come when things are going well, things are progressing, changing, improving. These seem to last for a little while, until I get those feelings again that something needs to change, or until Julianna starts having behaviors that are almost constant, and I don't know what to do. Then we are plunged over that edge, into the depths again, where we feel lost, uncertain, and in need of help. This is how it has been the last couple of weeks. Julianna's behaviors and tantrums have been increasing so much that I am at the end of my rope. She has an incessant urge to ask Blake that new infamous question, "are you still my friend?" about every 5 minutes. If he doesn't answer, she will be thrown into a rage, biting her hands and screaming, and now she will even hit him, hard. Blake is so worn out by her that he doesn't want to answer anymore, and I don't blame him, and now sometimes he's in tears from her hitting him. When it gets to be too much, I just tell her that this is the last time you can ask him today, and I force him to answer so she can move on with her life. This happens every single day. Her tantrums are increasing, and things are just so chaotic. No matter what I do, I can't seem to calm her down. She doesn't want to sleep in her bed, she has to wear long sleeves even when it's hot, and long socks that she pulls up every chance she can get. She has little OCD things that have to be just right, all the time. I just can't handle it anymore.

But it's interesting, because even before it got to this lowest point, I felt inspired to ask my regional center case worker for more therapy, which we will be getting soon. And even more interesting is how I always seem to know just what to do to help her, before things get really bad. A few weeks ago, I was browsing the digital books from our public library, and came across "The Autism Book" by Dr. Robert Sears. I haven't read a book about autism in a very long time, and this was a new one to me, so I thought I'd check it out. I only had time to skim through most of it, but from what I read, I was thoroughly impressed. I took some notes about the biomedical approach, and kept these ideas at the front of my mind. Could I even attempt to do this with Julianna? Am I strong enough to implement this program? Am I willing to put all my hopes into a program that has been proven to work in many children, though not all? Dr. Sears lays it all out for the readers, giving very detailed information. I ordered a copy on Amazon and look forward to getting it this week so I can read more closely.

And then I got that blood test back this past Tuesday, and ever since then my mind has been reeling. A normal blood test. A normal blood test?? This means she has no genetic cause for her symptoms. Dr. Sears explains that autism is often caused by things that are internal if they are not genetic. In other words, if your child does not have a diagnosed genetic cause for the symptoms they are displaying, there is a good chance that having your child participate in his described method will bring about huge changes, even possibly full recovery. His program includes doing the GFCF (Gluten-Free, Casein-Free) diet (casein is dairy) and using specific vitamins and supplements. All natural, but not easy or inexpensive to do in the least.

We did the GF 6 years ago (no dairy free) and I did not see huge changes. Then again, I only did it for 4 months, and I wasn't sure if I was doing it 100%. But I remember how hard it was in the beginning, and then how I started to get a feel for it. So I do have some experience. But the most challenging thing I am facing right now, for Julianna, is this: how much of what she is doing is just Julianna, and how much could actually be caused by what she is eating? I don't even know the answer to this question. It would take a huge leap of faith to even start a program like this, but anything is better than where we are right now. I would rather take a leap than be stuck in the depths, lost and confused.

I am just so amazed at how guided I have been, every step of the way, as I have raised Julianna, and I have no doubt that is because I am prayerful, faithful, and obedient. When I look back at the last few weeks, I asked for help from my case worker before I reached the edge, I read that book, and then a fews days later, I got that blood test result. I did not plan any of this. I simply did what I felt guided to do, and now I have to make a big decision that could either be a great thing for Julianna, or do nothing at all. This is where my faith comes in, I guess. If I feel good about doing something like this, then I just have to trust that it will be the right thing. I will let you all know what I decide, and be sure to share how this new journey goes for our family.

Even amongst all the chaos of my life, I am still given those little promptings that lead me to the right path, the path that takes us up back to that high again. I just hope we can get there again. Until then, I will be here, blogging.