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 :-)

When the rubber hit the road

A childcare provider at the fitness center Nick and I used to go to told us about a preschool program that works with kids with developmental delays. I knew about the program because my sister-in-law works at one in Utah where we used to live, and I had recommended multiple daycare children to these types of preschools. Also Nicks Mom had worked with Early Intervention years ago when Nicks younger brother was born. Nicks younger brother has Downs Syndrome. He is (as all downs kids are) amazing. Also Nicks family and the way they interact with him and help him live his fullest life are also amazing.

I just kept telling myself and Nick that this was all a "phase", that she wasn't talking because she has sisters who talk for her, and that she would "grow out of it". I figured the melt downs and violence were a phase, and she would grow out of it. I figured the sleeping problems where a phase she would grow out of.... I couldn't see past my own nose. 

I feel like my desperation within our year of melt downs and the 3 years of sleep deprivation is coming through to the fullest. I am concerned that much of these first posts are having a certain negative or dire sound. Believe me, we were beside ourselves often, but understand that much of that is simply because we had many many other things going on within that year also. My husband and I suffered the loss of 7 dear and close friends and family. All of them had lived in Utah and most were very dramatic, sudden and traumatic to both of us. It was just one after another after another and we could not even grasp much of it. We had also just bought our first home. We lived farther from our friends and family then ever, and Nick was working nights (6 pm-6 am) sleeping from 7 am to 1 pm and taking full time college 3 days a week or taking online classes and busy with homework etc. He has been more involved and put more work into our family and children then many dads who are not so busy, but I did sometimes feel like a single mom and he was feeling helpless with his busy schedule. Vivian was not the one thing that was rocking our world. She did rock our world though.

Also many people around us had not ever seen Vivian in her melt down mode, and if they did it was just for a moment before I removed her from the situation.This was mostly because we had sort of went recluse that year, and we also bent over backwards to help her be happy and stable around other people. Remember I am child development educated and had a HUGE bag of tricks.
My good friend and owner of Shambala Farm where I was going with the kids a lot was maybe the only person who saw these glazed over incoherent flip outs and she was a huge advocate to me and Vivian. She worked with Vivian very closely much of the time at the farm to be an outside (villager) influence to help Vivians speech, coping and she was the first to say Vivi could be having a biochemical reaction to food. She was as concerned as I was and I am so grateful for her and her husbands friendship and obvious love for my family.

As we were seeing the possibility of help & relief from the impending preschool, I was aware of their protocol. They would recommend 2 - 4 days a week to help Vivian with speech, and tantrums. They would teach her coping skills so she would not have "melt downs" and she would probably have to go 2 days a week. This was my expectation. 

When Vivian was assessed it was by 5 lovely ladies, who each had an individual specialized skill in detecting which area Vivian was lacking. In speech she received 1% out of 100% for her age. She was severely lacking in her social, cognitive, and adaptive skills. Her motor skills were fine for her age. These women saw right through my complacency and were kind and gentle and honest with me about their assessment.

The main thing they explained was that milestones like crawling and walking etc. are easy to see on a measurable scale of normal. Self soothing and coping skills are something that are inherently born in us, there is no "normal scale" to measure coping. This is a disruption in the neurology of the brain. It could adapt into a level or balanced coping mechanism, or it could even regress at some point. There was no way to tell or measure if she would improve in her coping skills.

They are not the people who "diagnose" specific disabilities but they did inform me where to go to get an actual diagnosis, they were sweet in telling me Vivian was functioning in about the 12 months to 18 month range developmentally and she needed to start 4 days a week as soon as possible. 

This is a completely free, state financed, very structured preschool. I feel they where not interested in anything but our little girl succeeding in every aspect of her life and helping her get there.

This connection also felt as though for the first time the rubber hit the road and I went 100 mph when that happened.

That was the night I watched the only Super Nanny I had avoided for months "Jo tackles Autism" and saw our struggles and story mirrored.  

So I stayed up ALL night googling anything and everything Autism. There is a lot of "stuff" and people trying to make $ and even Autistic adults who are tired of being put in a "category". There are so many ranging types of Autism its overwhelming at first. There are amazing stories, and wonderful support systems. One thing that was very prevalent was the "link" between Autism and vaccinations. Vivian had not been vaccinated, so..... that didn't help me. There was talk and text about living with Autism and a lot about diagnosis and treatment through centers and DIET.

I was willing to try any and ALL I could to try and help my ginger girl be able to cope with things and move forward in development. Nick and I decided we would try the most suggested diet for 4 weeks. Right now we are happy with this preschool and the work they are doing for Vivian. As she grows we may find other options we want to try out. Every child is different, every child is special and whatever works to help a child thrive we feel it is a great thing.

I saw a quote once, " If you KNOW one autistic child or adult....... then you know ONE autistic person."
They are all different with so many abilities and strengths and thing they are working on.

Lets get a visual

I only took 3 videos of Vivian in melt down mode, because frankly I was mostly in survival mode myself. I wasn't thinking much about "how about I capture this on video?" and the times I did, it was because she was about to be assessed by the early intervention preschool, and I felt I needed documentation. SO let me set this up for you and first say I am in no way trying to exploit my child. I contemplated putting this video up from the first idea of a blog and I have chosen to do so with permission from Nick and the reason I feel so inspired to  post this is to maybe have it help someone else out there.


This was in August this year, 2013. She is 3 years old. We were headed home from Patsey's Ballet lesson and for no reason I know of Vivian melted down in the car. She had eaten a snack right before (goldfish) and had even had a nap earlier in the day. She had not slept through the night for days (really she had never consistently slept through the night).

At 3 she should be having full cognitive reasonable sentences and even paragraphs in speech. But at this point she could only say a handful of single words and could hardly string even 2 together.

This was almost everyday, and sometimes a few times  day.

This video even now causes me anxiety. She was a ticking time bomb just 2 months ago. This is only 7+ min of what was a 2 hour melt down. At the end of the video I say "ok, now I am going to drag her inside cause I'm bigger." and she literally kicks and screams the whole way in. I tried to give her enough chances to learn reason, or get some communication during almost every meltdown, but after too long I just had to put her where I wanted her, and ignore the tantrum and get stuff done.

Here is why I ask "Please, a little Quiet."

  

This was a very familiar situation, she would not want to get out of the car or car seat, but didn't want to stay in. I would shut the door after asking if she wanted to get out, or if she would scream so much I couldn't talk to her. When she is saying "that one", this is the only 2 words she had learned to put together to let us know she wanted something. If I was holding 2 things or playing the guessing game she could choose "that one" but in this kind of situation she would say "that one" meaning she wanted something but I never knew what. I have learned how to keep my cool and be calm or neutral while she's like this, except I am firm when she uses physical violence.

 Now its easy to see why the idea of nine kids is no longer appealing. Haha. It has taken all our extra time and attention to just function with Vivian. Our older two have just conceded to the back seat of our attention, which is not fair, and we have been in this state of survival, worry, wonder, and searching for answers and help.

The next post will be about her assessment with early intervention, and us coming to terms with her possibly being on the Autism Spectrum. Also how I found out what Gluten can do to kids like her and that journey we stared 2 months ago.

OH MY how things have changed. We have not seen this ^^^ Banshee side of Vivi for 2 months. I can't believe it. Its amazing.

Dr. Vivian and Mrs. Hyde

Vivian was born at a very crazy time in our lives. We had planned her, and she was born the same week Nick was hired and supposed to report to his new job in Washington to start police academy. We had found an 800 sq ft 2 bdrm apartment and a week after Vivi arrived Nick moved to Washington without us. When Vivian turned 2 months we joined Nick in a State we had never been, where we didn't know anyone and it was stressful just to dive to the store.

Warning: I switch between "I" and "me"  & "we" and "our" a lot in this post.

We chose not to vaccinate Vivian not because we didn't believe in it, we just felt newborn babies are too pure and tiny so we opted to wait. Candice and Patsey our older girls are both vaccinated.

She developed normally for 18 months, she rolled over at 4 months, sat up at 6 months, crawled by 1 year and walked soon after. Apart from one thing, she NEVER slept through the night, she was normal. I could not figure out why this little precious baby had such a hard time at night. I tried everything, bottle of rice cereal before bed, night time bath with lavender, tickle back, legs etc. I had every known baby sleep helper known to moms, gripe water, teething tablets, apart from putting rum in her bottle (seriously understood why that ever happened lol) I had tried everything. She fell asleep ok, but would never sleep longer then 4-5 hours and she would cry and cry and cry at night.

I tried the "cry it out" and even if she was changed, fed and it was 3 a.m. she would cry for up to 3 hours none stop during the "cry it out" trial which lasted about a week. It was like she didn't need more then 4 hrs of sleep or her body or brain would not understand the night vs day schedule and if she woke in the night she could not self soothe. In her first 2 yrs, she maybe slept through the night 9 to 14 days. I literally remember almost every night she slept all night, I would wake up and the sun would be coming up and Vivi would still be asleep. I would almost cry I would be so happy. I would keep Candice home from school or let her be late because I feared getting her ready for school would wake Vivian on those days.

I was baffled.

I just hit survival mode because Nick was living an hour away from our apartment mon-fri going to police academy for 5 months. There were also a lot of other things going on that took so much of my thought and time, I was not that concerned about her sleeping habits (except lack of sleep was making me a zombie) I figured she would grow out of it.

Between about 18 months and 2 yrs old I saw a definite slow in Vivian's development. She was not even trying to communicate. Usually kids by this age start saying their first words and squealing for recognition and attention. They do the "auh auh auh auh" to ask for something and point at things. She was not doing any of these things.

I figured with 2 caring and doting older sisters she didn't need to try as hard or talk, they did the talking for her. So I wasn't worried about it. She seemed to have normal tired or hungry tantrums up till now.

Then the behavior hit the wall. Almost immediately after she turned 2 the tantrums started to turn into what I call "melt down" mode. In my ignorant view, for no apparent reason, she started throwing these knock down drag out tantrums that came on with out  warning.

Side note;
Patsey was intolerant of sugar when she was young and learning and trying new foods. It was so obvious it was sugar, and she reacted behaviorally every time she had sugar from the first time I'd given it to her. We removed it from her diet, and told people she was allergic, and she was fine. I knew every time she had sugar, she would melt down within 20 minutes for 3-4 hours, inconsolable and uncontrolled. Without sugar she was level and controlled and happy for weeks.

Vivian Had been eating all sorts of foods. I had introduced foods to her one at a time, slowly and with full intent in monitoring her reactions and behavior. She had never had a bad reaction allergically or behaviorally. She had been eating all kinds of food for months now. I couldn't figure where these sudden meltdowns where coming from.

She would go into a melt down, and it seemed as though everything after would make it worse. I started feeling as though it was just another "phase" that she would pass through once she started learning to talk and communicate. Nick and I decided we would MAKE her watch us say everything we said to her and sound out words for her. We also decided to ignore her massive tantrums and not respond or give her anything while she was melting down. She would follow me around the house screaming for up to 2 hours. I couldn't just ignore her. I wouldn't know what she wanted, I seemed to just make it worse trying to help her. It was so frustrating and I am sure she was as done with me as I was with her.

A month after she turned 2 we went to Disneyland with both sides of our families. It was the most anxiety stricken, super stressful trip for Nick and I. Thank the lord she did well in the airport and on the plane. She was great until we got to the front gates the next day, in line with about 100 people right outside the happiest place on earth, Vivian had a melt down. I know our anxiety was felt by her and exasperated this melt down, but she literally glazed over and went full blown crazy. People were looking at us like we had the WORST most spoiled kid, and we were the WORST parents around! Some had compassion, and laughed or joked (thank goodness for people like this) but for the most part, even I was wondering why my child who was old enough to understand and reason compared to other 2 year olds, who had slept well, (I remember every full night of sleep and was so grateful for that full night thinking she might have a wonderful day at Disneyland) she had eaten 1 full pancake and some eggs, and nothing I could think of had set her off, yet she was screaming uncontrollably. She didn't want to be held and didn't want to be picked up, she didn't want to move, but didn't want to stay still, she didn't want me and didn't want Nick or anyone else, it was the worst push and pull, this or that, how do I help, I can't drop kick my kid feeling.

This was becoming such a normal thing I began to instead of ask what was wrong with my daughter, ask what was wrong with me. Us women and mothers have this very normal and automatic response to problems in our lives. What was I doing wrong?

This 5 days at Disney was 5 of the most stressful days I have ever spent with my child, and my family. She continued to melt down in every line we waited in, here and there and everywhere. It was unpredictable and madness. After 3 days she did start to be ok in lines, and realize the fun we were having but it seriously took 3 days to get to "normal tantrum" mode.

I then had formulated that this behavior was about control, and her maybe not able to understand reason when she felt uneasy or out of control, which to my current understanding is close to right. She definitely did not have coping skills.

 My dad at one point, in the middle of an ensuing melt down, suggested "Brooke, she may be autistic, you should have her looked at." and my stupid prideful reply was offense, "gah! No dad, she's just struggling because she cant communicate what she wants to us, and she has a hard time reasoning because of her lack of communication skills because her sisters talk for her. She'll grow out of it!"

I was so close, and yet SO very far from what was wrong.

The rest of that year, she continued to wake up in the middle of the night, she could not self soothe, she didn't seem to have any coping skills whatsoever. We had so much structure, bedtime, mealtime, snack time, bath time, everything was predictable. Patsey and Candice learned to run away as Vivian's Melt downs became violent and she would go after them. She seemed to be raging inside and we could not help her, she would wake up EVERY morning around 5 or 6 a.m. (even after waking up at 1 a.m. or 3 a.m.) and she would start crying or screaming and come into our bedroom and cry and scream and hit and pull off our blankets until one of us would get up and give her a sippy and rock her or turn on a movie. I was starting to get such bad anxiety about my beautiful little girl every day. I knew something had to give.

I watch Super Nanny on Hulu and tried EVERYTHING Jo said. I was so in denial, and yet so desperate. I thought I would ask my Sister in law, who works with children with disabilities. I asked Chelsey to just watch Vivi and watch our interaction. I was so grateful for her those 2 weeks we where there in Utah and her insight and advise. She gave us new ways to look at the behavior, and new ways to deal with it. She gave us new communication ideas and Vivian was immediately responding positively to these. I saw our salvation in sight also knowing that she would be old enough (3 years) to be evaluated and eligible for the same programs in Washington state when we got home.

In August 2013, I continued to watch parenting help videos, and super nanny. I watched Jo "tackle Autism" and for the first time I saw a family going through what we were, I saw a child that was JUST LIKE MINE, and I started crying. A light went off and I started Googling Autism like a mad woman, and reading and rereading and cross-reading. I had hope that we could stop wondering and surviving and start working.

I think this is a good stopping point. If any clarification is needed please ask in the comments.

Welcome quiet seekers

Well I first off want to start by apologizing for any and all offense I may cause anyone reading this blog. I just speak my own truth and I recognize we all have our own experiences and truths of what is best for each of us individually. I have decided to share some of my "stuff" in hopes someone somewhere will take something positive away from it. Take what works for you and leave the rest. Much of what I post may just be my own trial and error,  my own theories and research, along with some definite concrete evidence or one side of a multiple sided medical finding. I again am just telling my own personal truth.

Next I will apologize for my writing and grammar and darting sometimes ADD way of communicating in text. I am  but a humble housewife with much life experience and minimal classroom education. If you feel the need to correct me go ahead knowing I am happy to learn and appreciate anyone taking the time to help me.

This first post is just a simple outline of me, my family and where we are in life.

I am Brooke. Brooke Williams once when life was simple and care-free and filled with time....and quiet.
I was Brooke Gunn from 20 yrs old until 21 yrs old. In this time I had a beautiful baby girl named Candice Mae Gunn. This was a pivotal time for me as I learned at a very young age what true heartache and loneliness were. I also learned the power I had to make hard decisions and how to take an active role in my happiness and how to find quiet again.

I'll explain what quiet means to me. It goes along the lines, " Let the storm rage and Quiet the child." I have been through a few storms in which I have found some definite personal peace, learning, and god willing "quiet".

Now, I am Brooke Blake, married to the most wonderful man Nick Blake. We have 3 daughters, Candice 10 years old (previous marriage) and two of our own Patsey 5 years and Vivian 3 years as of 2013. These girls are the light and love of my life, the tenderness and mercy and sometimes god willing they are the quiet in my storm...sometimes they're the storm.

For many years growing up my mom owned a home daycare. From 2nd grade until I graduated and left the nest, we had taken care of others children and loved them as they were our own. I was Certified in child development by 15 yrs of age and had already dealt with choking, fainting, seizures, disabilities, and a number of other things associated with children and childcare.

I worked at a number of other daycares in the southern Utah area, I was a nanny In Las Vegas NV at 18yrs old and at 24yrs I opened my own in-home daycare and ran it for 3 awesome years. So I feel confident in saying I know a bit about kids.

My own children are proving to elude much of my seemingly vast hands on 20+ years experience with children.

I have realized that the babies (apart from Vivian) were the easiest part of this raising little humans journey. I know many of you already understand this, with children raised and gone, so any comments of advise are welcome. It takes a village, right?

It is challenging to co-parent a child within the reality of divorce. When Nick and I got married we did our best to understand Candice's needs as she went back and forth and struggled even at age 3-5 with her reality. We are still working with her and learning how to be good loving and stable for her to thrive. She is such an amazing kid, who receives award after award in school, gets awesome grades and is the best big sister and daughter anyone could ask for.

At this point Nick wanted 9 kids.......yes NINE! All boys, a whole football team. I told him reality would bite him for that. We had Patsey and she was the tiniest little pixie of a babe. She would sing as she slept and was a wonderful baby. She was developmentally normal, and hit every milestone dead center. She is curious and sweet and funny and all the other things that any loving parent had thought of their "easiest" child. I am sure that me deeming her the "easiest" will also bite me one day but for now I am thankful for her nature and willingness to listen and learn and stay happy even when shes cleaning.

Right know in this post its all rainbows and sunshine. I get tired of this type of reading. I am a positive person, and I have developed a pretty thick skin in 30yrs, so I feel as though I get more out of reading about peoples nitty gritty. We all have wonderful things in our lives, but we cannot recognize these wonders without also experiencing the hard things in our lives. Within the realm of social media its easy to pick and choose what is "seen" (read) by others. It is within the hard that I believe you are in perfect placement to help and serve others. It is within the darkness you are also willing to accept a light from someone else extending their lantern of hope and help and love.

This brings me to Vivian. She is our little ginger girl who, starting at 2 weeks old, became a force of trial and error, love and compassion, frustration and delight that I had never experienced with a child. She is undiagnosed Autistic. The next post will be Vivians story up to the undiagnosis (I will explain this term as well) and how we coped (poorly) up until we realized it was imperative for her sake we change everything.

Her story will also answer why Nicks number of  9 kids went down to 5 and as Vivian grew we both decided  3 was enough.

We love our 3 girls.