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. ;-)