All is well after passing through HELL

I am ready to talk about a very tough situation we've been going through for 3 1/2 months.A few already know about this, and I try to not cry for pity on social media, but we have been really struggling and a few weeks ago I asked for prayers without explanation, so I want to explain.

This may be a bit graphic, and could be a trigger for someone dealing with sexual assault. Writing is therapeutic for me, so I write in reality.

May 20th Vivian started bleeding from her vaginal area. We took her immediately to the ER where they tested for blood in her urine, bacterial infections and kidney problems, all were negative. She bled in her night pull-up, and bled through 2 pairs of underwear that day, and was actively bleeding at the ER.

Once infections were ruled out while at the hospital, and no visible reason was seen for the vaginal bleeding, the forensic nurse determined our next step was to open a possible sexual assault investigation. They did a rape kit on Vivian for DNA and interviewed Nick and I together and separately and tried to interview Vivian, which although she has come leaps and bounds in 9 months, her cognitive understanding and reasoning is still around 20-24 months so she gave no clear answers to the forensic nurse. We were in the ER for over 5 hours. They were ready to take Vivian from us and put her in protective custody until they had concluded our interviews and proved to them we were not the reason for the bleeding, we also had to comply that we would not be sending her on the bus or to school again, until the investigation was concluded.

We have been let down by every single agency involved in this terrifying trial. 

First off, The investigation for assault is finally closed with no conclusive evidence found for assault. Thank goodness.

The hospital never contacted police or CPS the way they told us they would as per their policy. They took the rape kit and 3 undergarments in for evidence, secured it in a sealed paper bag and put it on a shelf to await a police officer to pick it up and deliver to a DNA testing facility to determine if there was any foreign DNA. 

Had Nick or I not followed up every 3-4 days and demanded answers and progress I believe nothing would have ever happened and the rape kit taken on our 3 year old and her bloody underwear would still be setting on that shelf.

Detectives were not notified by the ER ( we called local law enforcement a week after, once we realized the ER never called) and the detectives were not actively investigating until more than 2 months after our visit to the ER. Nick and I had been being told by police, " We are on it, just be patient." for weeks.When we realized nothing was actually being done, we drove unannounced and stormed into the detectives office in Aug, the DNA evidence had not been picked up and no other interviews done with the people who were within the 72 hour window of contact with Vivian before the bleeding started

.

The school district was not aware of the allegations until I called them to request that Vivian have deferred services once school started due to the open investigation. I was told by the hospital not to let her interact with the school and so obviously I was not going to allowing Vivi to be there until the investigation concluded and everyone involved was cleared, or anything founded was taken care of.

We were informed by the detective that the hospitals report made no mention of blood. It stated we brought Vivian in, a rape kit was taken, 3 undergarments along with the rape kit were taken and sealed for evidence, we were interviewed, she was interviewed.... but no where did they mention they visualized blood in Vivian's underwear, or even possible blood, or alleged blood. Nick and I were the only ones stating there was blood.

 No prime suspects were named, only telephone interviews were conducted with the school district staff, which is the only other place Vivian was within 72 hrs of her bleeding, while detectives came to our home, and conducted video taped interviews of Nick and  I separately even after we were interviewed by the forensic nurse at the hospital. Nick and I would have done 200 interviews and any other thing they asked to find out why our daughter was bleeding. We not only cooperated, we were lighting fires under everyone to get results.

Vivian was interviewed 3 times by 3 different people because we had no valid diagnosis of developmental disability. We were treated as if we were "dumbing down" our daughter. After no intelligible answers to questions were given and it was clear she had no cognitive understanding of the situation, it was suggested that we may need to get her diagnosed. As upset as I am at this, had she been diagnosed, they may have treated the whole situation differently.... Maybe. 

I took her to 2 different Doctors to see if there were any other medical explanation to the bleeding. Doctors would not even evaluate her during an active investigation. Which I understand because they do not want to mess any possible evidence up or cause other situations to permeate the child's mind.

The school district receives federal $ for the preschool they run for developmentally delayed or disabled children. They are under legal contract to provide services to Vivian as they determined necessary in their assessment of her. She is not like other neurologically normal children who can take a few months or year even off of preschool and enter Kindergarten at the level other children are. Deferred services are given for many reasons, from home therapy due to allergies, to going to another school district because of misconduct or family reasons. 

After phone interviews were conducted with each staff member, the director for the preschool came back and said although the sexual assault investigation was open and active, and we where waiting for DNA evidence (which hadn't even been picked up from the hospital) they would not do anything for Vivian and she would need to attend preschool as per normal, or after a period of time, she would be un- enrolled.  

And finally, 3 months after the bleeding and ER visit,  we let detectives know lawyers were being called, the Governors ombudsman was already investigating and we were ready to call the media. Suddenly the DNA evidence was at the DNA testing facility, expedited (we had been told the testing process could take 30-60 days) and within 2 weeks the results came back positive for Vivian's blood only and all other types of foreign DNA, saliva, semen, and dermis was negative.

Massive malfeasance and negligence has eroded almost all faith that these agencies would help us and work for the best interest of our innocent child.

All involved dropped and passed the ball.

Our prayers have been answered though, and DNA evidence shows that no assault took place on our little girl. Thank you to all who have been supporting and praying for us. We are still trying to move forward a little at a time. Our older children do not know what has been happening, and Vivian seems to have no understanding as well as no mental or emotional set backs or trauma. 

We still do not know why she was bleeding. We are going the medical route next, and hoping this will be an easier and faster avenue. If nothing can be found medically ( researching has shown medical possibilities such as hormone imbalance, blood clots, tumors, vein clusters etc...) then we will rest easy and pray it never happens again. 

Parents, No One cares about your kids as much as you do. Be headstrong and be unstoppable in your love and fight as long and as steadfast as you can for your children. 

I am a Slacker, Vivi is a scholar

Well I am a slacker. It has been the most amazing thing to watch Vivian transform. I almost completely forget the endless nights, and desperate days we were having day after day for 3 years.

We have been Gluten Free for 8 months now. There have only been a handful of days that Vivian gets gluten in her system and those days we remember why we chose this lifestyle. It is heart breaking to watch her struggle with her coping, speech and cognitive abilities. Things she was able to do yesterday with a clean diet, seem to disintegrate after wheat enters her body.

I have said I would post progress months ago, and I have now taken a few separate videos at different times to show a progress over time.

Her speech and cognitive thought process are increasing and the place she is, at almost 4yrs old, is amazing when you realize just 8 months ago she was waking up 2-3 times EVERY single night, was at a 0% in speech and had no obvious coping skills or cognitive understanding.

Here is a video from Jan 2014, 3 months after going gluten free.  She is trying to communicate more than she ever had but still having a hard time making some simple connections. This is more eye contact than we ever received since birth. We have been using her sisters to help teach her behavior and speech for years, and it only started working after we changed her diet.

Here is a video from April 2014. This video shows how far she has come! Her understanding of who, what, where and when, even sometimes without very specific wording is unbelievable! Her teachers at school are absolutely amazed at her progress. Identifying nouns has been a HUGE success for her in the last couple months. Shapes, colors etc are a recent success as well. Now she is displaying seeking behavior to acquire knowledge too. She is finally starting to ask us questions! This video was interrupted by a phone call so it cuts off abruptly.

We love our ginger girl.

Progress Report!!!! really....a scholastic one!

I am so excited. Vivian received her first preschool progress report. ITS AMAZING!

She was assessed the first week of Sept 2013. We went Gluten Free the third week of September for 2+ weeks then slipped up, then jumped back on track a few days later in the first or second week of Oct. So we were completely GF from Oct on. Her Progress was assessed Dec 4th. So this is what she has accomplished in 3 months.

Also, I taught preschool in every daycare I worked in, Including my own home daycare. I am not only very familiar with "normal" speech and academic averages, I have been in direct connection with many types of curriculum and preschool progress. This is why I may have sounded so perplexed about Vivians delay. It is not that I was upset or disappointed in her delayed development, it is simply that I was seeing my child through my rose colored "normal" glasses, trying to teach her all these "normal" ways and couldn't see past my own nose into her now obvious delay. I was also so exhausted from lack of sleep for years and three kids.....you know....complacent...survival....motherhood. I'm sorry I'm human. (Wink)

Now that being said, we are learning a NEW way to teach and interact with Vivi. We were trying to teach her all these things before she started the early intervention preschool and my sis-in-law (love you) started teaching Nick and I the right way to interact with and teach Vivian. So that started even before preschool.

SO without further delay........... (No pun intended) <---- bad joke I know, but sometimes all we can do is laugh.

Communication: Following directions related to spatial and descriptive concepts, Vivian will comply with two step directions, improving her auditory comprehension from the 1st to the 5th percentile.

Communication: Improving language with using approximately 4 words compared to the 2.3 per utterance as measured by SLP therapy data.

Communication: When given "who" "what" and "where" questions, Vivian has improved her reciprocal language from 0% in the first assessment to 80% in her measured answers with her therapist.
(Did you read that??)

Social / Emotional / Behavior: In frustrating situations Vivian will demonstrate 3 of the 5 strategies for coping / calming / ask for help. She has improved her ability to regulate her emotions from a reported 30% of the time to 80%  of the measured opportunities in the classroom.

Social / Emotional / Behavior: When given instruction and opportunities for transition Vivian will respond with flexibility and willingness without needing assistance from 50% of the time to 80% of the measured opportunities.

Social / Emotional / Behavior:  When Vivian is upset or angry she has demonstrated  self calming behaviors improving her length of time she stays upset from up to 2 hours to less then 20 min. Recently she has been calm and controlled within 10 mins in the classroom.

Cognitive Development: Vivian has improved many key pre-academic concepts from identifying colors and shapes for the first time in the classroom (still working for consistency) as well as her counting and ABC memory. She is keeping attention and interacting for longer periods of time without needing  prompting, from 2 min at a time, to now up to 10 min of the measured time.
                        ****************************

I can't describe the emotions Nick and I went through as we read this report over and over. Not only is it amazing for Vivian to know she is doing so well, it is basically a testament to what we've been watching this little girl do in front of our eyes  after going Gluten Free and getting some specialized learning.

I have a 3 ¹\² yr old who started talking and reasoning and coping and SLEEPING for the FIRST time within THREE MONTHS!!

0% ---------> to 80% in 3 months!

People, Gluten is not bad. Gluten does effect SOME people. I know right now it all seems like a fad.

These numbers and what I am witnessing is not a fad. It is wonderful. Gluten is a drug to my little Vivi. It disrupts her Brain and neurology. It keeps her in the dark and personally I am so relieved we have found a way to help her step out into the light, a way she can reach her full potential, and fortunately a way we can get a little peace and "quiet".
(She is still sleeping through the night...Thank goodness)

a bit of Despair mixed with Blessings

I am beside myself right now in trying to help my little Vivian make sense of what is happening to her as she uncontrollably vomits. I try to say "It's ok, your body will survive this, I know its hard and yucky but I promise you'll be ok." I am saying this over and over, if she could process even my words right now she could feel comfort, while still uncomfortable, she would trust me. Instead its like she thinks she is dying and I am the one killing her. She does not comprehend that I am trying to comfort her, she only seems to feel that every time she starts doing this horrible scary thing she cant control that is even making her choke (as it comes out her nose), she looks at me as if its all my fault and wont let me come near her. Her sensory has shut down, she is in overload and I can't even reason with her to get in the tub (she's covered, hair to toe with vomit). I had to force her into the tub as she screams, scratches, bites, and hits me like I'm a monster. She is struggling choking and screaming as I try to wash her hair out and she is looking at me with the most terrified eyes, its like she thinks I am trying to drown her. She is in survival mode. My poor 3 yr old thinks she is fighting for survival from immediate and imminent danger while its only her own mother trying to help her and comfort her while she is sick.

This is a despair I've never felt before. I am sure its all so much more terrifying to her. At least I know she'll be ok, I just don't know how to comfort her.

She finally wore out after I took her out of the tub, at that point she hugged me as if for the first time since she started vomiting, I was trying to help her instead of hurt her. She clung to me desperately and every time I turned toward the bathroom she would tense up and start to struggle like I was going to try to drown her again. I walked into her room, sat on the bed and rocked her and whispered "your ok, I love you" over and over. Then she fell asleep. I carefully put a pull-up on and laid her down. She is washed, (like a tortured animal) and clean. Her whole bed stripped and in the wash, her mattress covered in towels now, and she is just wrapped in the towel I dried her in.

I came right in to search for info about how to comfort sick autistic children that can not speak yet and I found this.
http://www.autismspeaks.org Ten things every child with autism wishes you knew

What a great article. I am so thankful for the internet and the VAST KNOWLEDGE we have at our fingertips. It is amazing and such a blessing to us as parents and to our children. Vivian needs people around her to read this article and understand were she is coming from because this is her life. No matter if she's Gluten Free, or medicated or educated or accepted or self reliant. If you know someone with autism or an autistic child, read that article. Please.

I had an experience recently were Vivian had a "tantrum" not a melt down in the store. To me, the difference between the two are like heaven vs hell. I'll take a regular 10 min toddler tantrum any day over the incoherent hours of a melt down. I had a full cart of groceries and although this was not the worst of Vivian, I still knew I needed to just drop what I was doing and walk out the door with her to the car. Candice and Patsey automatically follow me and the full cart is left in the aisle.

I buckled her in the carseat and explained to her that she may not stay in the store if she chooses to scream and cry. She calmed down with some repeated deliberate deep breathes (that she recognizes coping skills now is amazing) and then Candice turned on a toddler game for her on the tablet. I had nothing more to grab at the store so I ran back in to check out alone.

As I went through the check out of this quaint small little grocer the check out ladies were chatting among themselves about what seemed to be something shocking. I was unloading the cart and one was shaking her head as she checked another customer out saying "wow...I mean WOW..." The elderly customer was agreeing and the young high school age checker of mine was laughing and said "maybe earplugs would have helped..."

At first I was not sure if they were talking about my child. I just ignored it and waited as she scanned my stuff. Then the other checker said " well at least they had the decency to take the kid out, so we all don't have to listen to it."

I froze and felt my hair stand on end, my face started to flush and I couldn't move. Obviously these ladies do not know that I was the mother of that "crazy kid" or they would have been silent. I also give them the benefit of not knowing that screaming kid has autism. I stood there not sure how to proceed, scared they may call on me next for a comment "did YOU hear that kid?" I was embarrassed and angry and defeated. I felt I should speak up as a million things went through my mind.

"FIRST off that little child is MINE! 2ND how unprofessional to speak like this around customers! 3RD She is a 3 year old kid....you must have never had your own children or been around a toddler before because tantrums HAPPEN to them ALL! FURTHERMORE not that you inconsiderate blankedy blanks care, she has autism and does not distinguish the world around her the same way we do, which at this point I am glad that when she is older if she around people like you, she wont even perceive the rude and ignorant tone of your completely offensive remarks about a little precious child!!!"

But I instead stayed silent. Payed and left without saying a word. I was shaking and I am sure they felt my tension. I couldn't get it out.

I am thankful for the unremarkable lessons my little ginger girl Vivian has taught me in only one short year. I am thankful she has the support she does. I am thankful for the people around us who do not judge her or scoff at her and have understanding for Nick and I as her parents. I love that we are learning new ways to live and learn and get healthy.

Although I feel many people are clipping along in their lives unaware of kids like Vivian and the struggles they go through, I have hope that knowledge can spread and encouragement can replace shame. I hope compassion can replace judgment. Most of all I hope we all can be quiet for a bit and have peace and love within our storms.

It's REAL

So after going Gluten Free for the trial period and seeing the amazing effect it had on Vivian and her cognitive and coping skills. I started to notice in my oldest daughter Candice a few subtle differences that made me turn my attention to her and if she may have been being affected by gluten as well.

Candice was singing the ABC's by 2 years old. By 3 she sang the Alphabetical United State song with out missing a beat (or state). She started speaking around 10 months old. She was a very easy going baby and child. She never went through the "terrible two's" and was always a well mannered kid. She does well in school and received award after award in every grade.

Within the last 2 years or so she started developing a fear of throwing up. She had only thrown up maybe twice in her whole life with me and a few more times when she was with her dad, but was always so healthy I figured it was normal. I remember I hated throwing up, who doesn't?  She then started to get upset and anxiety about eating at dinner time because she said she already had a stomach ache. She told me she was so afraid of throwing up at night she didn't want to eat. She started losing weight. We discussed all sorts of possible problems with her about her eating so little.  I started having her go to the school counselor every week last year to see if that could help and see if she would tell the counselor something she may not want to tell me. I know there are alot of things she struggles with as a child within a divorce situation and all that entails. I wanted to give her a safe place to talk with a trusted professional about anything that may be wrong.

For over a year she has been seeing her school counselor every week. We've been speaking back and forth and her teachers have been watching her (without her knowledge) at lunchtime to see if she is eating. She would eat a big bowl of cereal (gluten) every morning, her teacher was seeing her eat enough during lunch to not be alarmed, but she would not want to eat dinner claiming tummy aches.  She had not, after a year, told her counselor anything about being bullied, abused, or any other type of external problem we wondered might be contributing to this. She only said she was paranoid of throwing up and also her struggles with divorced parents. Her counselor told me she was only concerned about her eating, other than that she was a very bright, reasonable, stable and understanding kid.

Then we changed the whole families diet to try to help Candice's little sister Vivian.

Within a week Candice had stopped her obvious fear of dinner. She suddenly started eating whole plates of dinner and asking for seconds. Nick and I talked about this and started paying attention to Candice and her evening eating. She didn't even realize how much she was eating at dinner, and she was waking up in the morning for school so much easier. She was less whiney and argumentative about homework, housework, and waking up for school.

After 3 weeks I took all three girls to the IHOP. I got Vivian oatmeal, and let the other two get pancakes. It was lunch, so they had already had breakfast (Rice Chex). After IHOP we went to the store. Side note; omelettes at IHOP have batter in them, you have to ask for regular egg omelettes to get it GF.

Candice, within 30 min of eating the pancake, started complaining of stomach cramps and she started to get very ornery and worried she was going to vomit. She walked around the store whimpering about how nauseous she was. Then she spent 20 min in the bathroom having a diarrhea attack.

The same thing happened to me awhile back, after the first failed attempt at going GF because we had only gone 4 days, but then had pizza at a gathering with friends and the next day I thought I was going to pass out while on the toilet. Literally, I am not trying to be dramatic, I had such huge waves of nausea I was almost in tears. I had personally not had gluten for about a week, but the kids had eaten gluten cereal, and I was not watching everything they ate as closely as I am now.

So I talked with Candice about her maybe having a Gluten intolerance. We talked about it and I answered as best as I could all her questions, the only thing is if you have already stopped eating Gluten, your bloodwork will not be accurate. I had Vivian tested before we started GF, but Candice had not been eating Gluten for weeks now. I told her if she wanted to start eating Gluten again she could and after a week or two we could get her tested. She said after that pancake she NEVER wanted to eat gluten again.

At this point I just validated her feelings (is it bad she doesn't want to eat Gluten? I think not) and I have been educating her and empowering her on what Gluten is, what its in, how to identify labels, and reassuring her it is ok to politely tell people no thank you if they offer a gluten snack, or ask if it has Gluten in it. For her class Halloween party she made her own box to check on the snack sign up sheet that said "Gluten Free snacks" and we made Ghraridelli chocolate rice krispie treats, naturally GF! Not sugar free lol.

I had not heard her complain since IHOP that she had a stomach ache, or not want to eat dinner, or feel threatened by puking. It had been a little less then 2 months.

She had Thanksgiving in Utah with her dad and his family. I talked with her about what she should be careful of during Thanksgiving, then let her know if she did eat gluten not to worry. I spoke with her dad about our discovery and he agreed he would help her. When she came home she had quite a bit to tell me about her trip and food matters.

She had taken a bite of a hamburger with the bun and within minutes had hives break out all over her face and neck. A family member gave her Benedryl to help. She said she also had cheerios and her dad promised her they were GF, but she said she had a stomach ache after. She also had an IHOP omelette on the last day (with batter) and she said the whole day and the flight home she was nauseous and sick and had diarrhea as soon as she came off the flight.
She also told me her dad had told her she did not have a gluten sensitivity. He told her there was no such thing and showed her a few articles on the internet that said Gluten sensitivity was bogus, and he stated he had gone to college (communications degree, not medical) which meant he knew these things for sure......

I asked her how she felt about that.... she said she felt he was wrong. She said she knew how gluten made her feel and she never wanted to knowingly eat it again. She was also bewildered why her dad, who announces frequently how allergic he is to cats, weeds and grass among other things, didn't believe her allergy was real.

This is were her counselor also comes in handy. To help her understand things like this and realize she is an individual and can stand up for herself, that not everyone sees eye to eye or has the same perspective. That she must be responsible and understand her abilities within her world to make her own decisions.

Any of you reading this who are thinking of "trying it out" but are worried about support or help from others. If you are worried what others will think, or how to explain to people why your making this choice...

KNOW that NOBODY else matters. NO ONE else should have the power over you to make you feel like you are unable to do this, that you are making a mistake, or tell you based on their ideas or opinion that you are weird or wrong. NO ONE matters but you, your kids and your opinion and experience and health. Let the people around you see your determination.

Nothing may come of it, you may need to look elsewhere, to continue your journey. I guarantee you will not look back and regret trying something like this, whether it works or not. And if it works you will be amazed, relieved, revitalized and empowered in your decision.

Patsey has had zero noticeable differences from being on or off Gluten. NONE. No different bowl movements, emotions, behaviors, reactions.... nothing.

Nick says he has had better digestion and regularity. He did eat some gluten a few times after being off of it, and said he felt weighed down and tired, as well as loose and painful BM. He said with his crazy busy schedule, he feels more energy and clarity moving through his day.

I feel so much more energy, I wake up easier and do not feel so groggy in the morning. I feel better maybe as a placebo effect, just doing something that has had such a good impact on my family. We are still figuring life out but Life is Good.

I took some video of Vivian the other day that shows a bit of her cognitive connections increased speech and how they are improving. I will post that with my next post. It is AMAZING to witness.

Not for the "health" of it

A few people have said things about our new "health kick". Which is funny because there are so many things that are gluten free that are sooo very far from healthy and yes, we eat them. Like brownies.... Betty Crocker makes a GF brownie mix, cake mix, pancake mix, corn bread, and all are about one or two dollars more then the regular stuff. Also fries, many candy and chocolates are GF. Corn chips and corn tortillas, salsa and most Mexican food is GF. Thai is mostly GF.  

Now don't get me wrong, we do work to eat healthier, but we have done that for years. We try to eat less processed food and meats, we stick to meat cuts, and whole foods. I never buy refined sugar products except for birthdays etc. We Juice and even the kids loves the cilantro juice I make. 

Another thing is in all the research I've been doing to help Vivian, there are many things that are cross contaminated with wheat or gluten that a person who is clinically allergic to gluten (Celiacs Disease) can not have, like fries because they are fried in the same oil chicken nuggets are fried in. Even some rolled oats that have been planted next to wheat fields because a breeze could blow the gluten proteins onto the oats. These people have major physical reactions and become sick for hours and even days. 

I had her tested 3 months ago with an allergy specialist for Celiacs disease among many other tests. She was negative for them all.

According to some of what I've read, kids like Vivian react neurologically or behaviorally. So we have been testing this cross contamination with her. I've given her a few things that would be cross contaminated, and she has not seemed to be greatly affected by it. Then we had a major slip up. 

I bought some fried chicken with the intent it would just be Nick eating it and taking it to work. I left it out, and Vivian grabbed a drumstick and ate the whole thing. I was not too worried because she had been off Gluten for almost 2 months and the breading was thin on the chicken. Within the hour she started to become very winey and upset. My younger sister was here and we had planned to go to the mall, which proved to be the wrong place to take a reactive Vivian (I would have never taken her to the mall before, because from experience the mall was too stimulating to her and she would melt down everytime.) Either Nick or I would sit in the car with her for the duration of many shopping trips, or trips we took with the kids. Lately she had not even had a regular tantrum in a store, and for the first time seemed to enjoy and take in the stimulation.

This time is seemed as though she regressed and for 3 hours she cried and threw tantrums, she didn't want to go in stores, didn't want to leave once we got her in. She didn't want to walk, but didn't wan to be held. She'd scream and carry on until we decided it was time to go. That is when she left normal 3 year old tantrum time and went into full glazed over melt down mode. It was like her verbal and reasoning skills where turned off. She melted down the whole 45 min drive home, with my younger sister witness to the complete loss of coping or reasoning within hours. She was screaming at the top of her lungs over and over. I asked if she hurt and she wouldn't even look at me to try to communicate.

When she was tested for different allergies the Dr. talked with me about the few different types of reactions and how some experience physical ailments such as hives or swelling and stomach problems from allergies, and then sometimes neurological reactions like behavior. 

I do not know for sure if she was having physical pain from the gluten reaction. She has never had hives or swelling etc and she tested negative for Celiacs. Its so painful to not know what is happening exactly or how to help her.  

This is definitely a trial and error experience. We hope that as she gains verbal skills, we can get accurate communication about how she feels and what she's reacting to. It is frustrating at times. I will agian say, the tremendous amount of progress that we've made from simply changing her diet has been the biggest blessing I've witnessed with Vivian so far. 

The next post will be about how going Gluten Free has actually helped the whole family in numerous ways, and who we found out has a physical reaction to gluten we didn't even know about. FYI that post will have some TMI. ;-) 

Gluten Free

Here is the post that will explain how we found something that has CHANGED OUR LIVES.

The most recommended diet is a casein and gluten free diet. Casein is a protein in milk that is said to be hard for some to digest. I had switched cows milk for almond and rice milk about 2 months before she was assessed because I was wondering if she was lactose intolerant and had gastrointestinal discomfort. So my suspicions were close to correct.

This left us with eliminating gluten.

I made the goal up in my mind to stick to 4 weeks. Also, if Vivian was doing this we were ALL doing it. I talked to Nick and he was on board. So I began to research gluten free living, and why some say this diet helps kids like Vivian.

The first thing I came upon was...Da da DAAA! Web MD.

http://www.webmd.com/brain/autism/gluten-free-casein-free-diets-for-autism

In this report they say that all this is not scientifically proven. I use the term "they" quite a bit and I don't actually know who "they" are. I don't know if I trust "them". I don't know if I care.

According to many testimonials this diet was worth a shot, really whats the worst that could happen? We eat a bit healthier?? We feel the same? We feel better?

OR we see a change in Vivian? Worth it in my book.

One concern was bread. Vivian loved having toast in the morning. Cereal also was scary, but I was told Chex (rice and corn) as well as Rice Krisipies are naturally gluten free so that was nice. I was worried about pasta. I saw a women blogging about how she changed her expensive gluten free pasta to the oriental rice noodles and her kids didn't even notice. I also just decided we would buy giant bags of brown rice and use it in place of pasta. It has been great.

Now, the thought I put into my habitual store runs was put into tailspin. We are all creatures of habit. When we find something we like we form habits. I had formed a habit of buying crackers, crackers, and more crackers. Goldfish, Club crackers, Graham crackers, saltines, I was a one woman cracker house! I also bought the bags of honey nut wannabe Cheerios and cocoa puffs. We did eat rolled oats a lot, but I was giving my kids so many forms of gluten it was scary to start throwing it out.

I have to say it is more expensive to buy gluten free, but it doesn't have to be that drastic. Especially at first, my kids were excited to see NEW snacks. I bought rice cakes in 3 different flavors. I bought dried sugared mango, pineapple, and papya. I switched the crackers for Nature Valley honey oat crunchy granola bars naturally gluten free. I bought salted sunflower seeds and young pumpkin seeds and cashews. We had Oatmeal (with brown sugar) or chex every morning with rice milk and a splash of coconut milk. A spoon full of peanut butter has been one of Vivians favorite snacks, and I look at EVERY label I buy now for the "MAY CONTAIN: WHEAT or GLUTEN / BARLEY or RYE" I don't care so much if it may contain milk, but I avoid it if I can.

I made a protein, a veggie and rice for every meal for almost 2 weeks or I would buy a whole roasted chicken and remove the breasts for lunch time, and boil down the rest into a broth for soup. This broth was something I read about from Dr.Natasha Campbell-McBride Who invented to G.A.P.S. diet. I read a lot about this diet and I read even her criticisms. I found it to be very interesting, but do not feel I wanted to take Vivians diet that far at this point.

http://www.gapsdiet.com/

This Dr. describes her research showing connections directly from the neurology of the brain to the gut.
It makes sense in the way if you drink alcohol or take a substance that alters your brain activity, it disrupts your speech and cognitive thinking, also your motor skills. It supposes that certain foods, including gluten have an effect in the gut that causes the brain to react as if it is dealing with an opiate. It causes the brain to go into a disrupted neurological state. She encourages within her specific diet that natural beef and chicken bone broth is essential to help "heal" the gut and help the mind balance with the gut again. According to her and many testimonials you can, after a period, reintroduce foods, including gluten back into the diet once the gut lining is healed.

So I just took to the broth part because they do have many great nutrients, and even gelatin the body needs.

After the first 3 days gluten free, Vivi slept through the night, then the next night (ok this has happened before) then the next night. She hadn't had a melt down or even a regular tantrum either.... then the next night she slept all night. After Vivian slept 7 consecutive days in a row for the FIRST TIME in 3 years I was flabbergasted. I felt like I was sleeping on borrowed time, and I would soon be back in reality. I couldn't believe it, but she kept sleeping through the night over and over. She had also not had a melt down for the whole first 2 weeks.

Then she did something I couldn't believe. Someone in a store asked if her and Patsey were twins, which has been common lately since Patsey is petite and Vivian is over average, and I said no. They then asked them each their names and Patsey introduced herself shyly, " I'm Pastey." and then Vivian like she had done it a million times before said "I Vivian!"  I almost peed my pants. She had never said her name before, she had never interacted with someone socially like that before and she was 3 yrs old.

The next big change was when her and Patsey stared fighting over a toy. She had already stopped the complete melt downs over something like this. Patsey had even learned to try to avoid Vivian most the day for fear of being attacked or screamed at. We had been fully gluten free for about 3 weeks. Vivian kicked Patsey and as we had done so many times we scolded her and said "No Vivi, that wasn't nice." We were currently working to teach Vivian to say "sorry", and hug after she hurt someone, there was a motion she would go through but it was clear there was not a "connection" as to what it meant.  After she kicked Patsey, and we scolded her, she turned to Nick and I, lowered her head, shirked her shoulders and started to cry. She then turned to Patsey and hugged her and said "Sowwy" and it was so clear she was showing guilt. She was not crying because we scolded her, it was like for the first time she realized she had hurt Patsey and felt bad about it. Nick and I both just watched in awe.

It has been 2 months since we went Gluten free. Vivian has been going to preschool 4 days a week and coming home giddy and happy everyday. She comes home with more and more vocabulary every time. She is asking real questions and reasoning answers. She interacts with her sisters in a way we've never seen. She is interacting with Nick and I in a way we've never seen. I know that this preschool is helping her, but they are not the ones teaching her to sleep through the night, she started that before she started preschool, on her 3rd day gluten and casein free. They are not teaching her guilt or remorse, her brain is connecting things that children usually start to understand around 18 months, and I have watched her do what seems like a years worth of development within 2 months. I have watched her gain the ability to calm herself and self soothe for the first time in 3 years. This is something babies start doing within weeks of being born.


WE are ecstatic that Vivian is doing so well, we are happy to see her progressing and finally seeming to enjoy daily activities. We are hopeful she can continue to develop and learn and adapt. We know every child is different and to compare one to another is not practical. We are thankful for the support we have from each other and others. And oh how happy we are to be getting some sleep and a little quiet :-)