Keep Moving Forward...

It is becoming more and more real each day that passes. Payton is going to be 3 July 16th. All I have ever wanted is a little girl. To play barbies, dress up, and let me curl her hair and get our nails done together. Payton is none of the above but she is better than anything I could of ever asked for. I still think about what our lives could of been like had she not regressed into Autism. She would be able to listen to me. She would stay close when we go outside instead of running away. She would be able to express her love and needs to us instead of us guessing. As days go by for me, it just gets harder and harder. She is getting older. I am in no way in denial that she has Autism, but I don't want it to be who she is. She is first and foremost a daughter of god, a daughter to us, and a little sister to her big protective brothers. I have a hard time when strangers question her age or ask why she doesn't look or talk. I want to scream, LISTEN, SHE HAS AUTISM. As a mother, I just want to avoid letting others know and label such a precious girl.

 I have such a hard time saying it out loud to strangers who are just trying to be kind and are curious. I don't want that to be the first thing out of my mouth about her. She is so much more than that. It hurts my heart that this is the pathway we were given. I am not perfect and I don't claim to be. I try so hard to always be positive. I want to radiate positivity to the world and let them know I am strong and I have no sadness. Unfortunately I am human and I have feelings and doubts and fears. I try to not let them sink in but I do have moments of vulnerability that make me weak. She is such a precious child and wants to burst through sooo bad.

Unfortunately, we received some bad news about her levels of mercury, arsenic, and lead. I will wait until we get the whole picture back and share everything with you guys. We are happy to have some answers but it is so troubling as the how will never be answered. We are pushing through and pray for the day that she opens her mouth and just talks to us.  As of right now we take one day at a time...

The trip that hopefully will change our life

First, I would like to thank EVERYONE who has helped us along this journey. It is just beginning for us and we hope everyone will follow Payton's story and be just as excited about the potential of progress as we are. You are all family to us and we appreciate everything that has been given and said. With that I am going to share details of our trip to Jacksonville. It has taken a few days to get my brain normal again. All the information that was given to us was amazing and there was so much that it literally hurt my brain for days after.

This Doctor had me at hello. I was so worried about what we were getting into. This isn't your typical Pediatrician and she was a little quirky(which I loved) and you have to be a little quirky to think outside of the box. She greeted us and watched Payton for awhile. Noted her behaviors, and literally wrote down every move she made. How she would tip toe walk, line up her Nemos and Dory, squint her eyes, run in circles, drag her brothers to spin with her, she was non stop and that was typical for her to be that way. 

She asked us a few questions and then brought the boys in and asked them some questions. She wanted to talk to the boys and get their views on their sister. What they didn't like, what they did like, if she plays with toys how your supposed to... Of course Jackson made the comment of how he just wished she would play with him and talk to him and be "normal"... ( I was holding back tears of course), then it was Trenton's turn and leave it to him to lighten the mood. "I want her to stop taking my Skylanders and leave me alone." Devin and I just laughed and then she said to the boys,"You boys are your sisters best therapists, she needs you both more than anything to help her learn, you are doing a great job and to keep up the good work because Payton is something special." AGAIN I am holding back tears and just wanted to hug her immediately. I hold so much inside and there are days when I just burst alone. She had me from that moment on. 

She then began to tell us stories of parents just like us, traveling to see her. The remarkable recovery they are making and there happened to be another mom there that had a son about a year older than Payton. He seemed "normal" to me, but he started out just like Payton. Non-verbal, no receptive language, no eye contact, no awareness... the list went on. This is when I had to remind myself that EVERY child with Autism is different. If you have met one child with Autism, then you had met just one child. That always sticks with me. BUT I know and feel in my gut that this Dr. will change our life. I just feel it. She kept saying Payton will make her famous. She kept calling her, her juicy two year old that was "dusted" with Autism and that she will try everything she knows to get her back. She was so knowledgeable and open minded about everything we asked her about that we had researched. Devin even mentioned the fecal transplant. LOL She said it is not quite there yet but it is showing promising results. If you want to read about it go here. http://symbionticism.blogspot.com/2013/04/microbiome-can-fecal-transplant-cure.html

We are parents wanting to give our daughter the absolute best outcome ever. We don't ever want to go back and say, "I wish we would of done this...."

Right off the bat she said that she should be on a probiodic. Read about that here.
http://www.huffingtonpost.com/2013/12/05/autism-probiotics-study_n_4392838.html
She thinks she definitely has the leaky gut. Stool samples are done and sent off to the lab. We will know everything there is to know about her gut on March 20th. She is taking a special probiodic twice a day, along with Vitamin D3 and Vitamin A. We will get a complete run though about her blood work on March 20th and adjusting those vitamins as needed. 

Then she said the word I was waiting to hear that I have read about... Methyl B12 injections. Out of the B12 family, only methyl-B12 has the ability to activate the methionine/homocysteine biochemical pathway directly which results in more “fuel” to the brain. The number one thing that Methylation makes is GLUTATHIONE (the body’s main detoxification enzyme responsible for removing mercury, lead, cadmium, arsenic, nickel, tin, aluminum and antimony). HELLO! makes sense. 

Dr. S. Jill James has also shown that children with ASD have 80% less glutathione in their cells and that 90% of children have defects in their methylation. Possibly Payton?  This means that children with Autism cannot effectively fuel the brain and detoxify heavy metals and other harmful substances from their system. BINGO! 5 shots at once probably not a good idea. I can kick myself forever but just have to keep moving forward. Her blood is being tested for Glutathione to make sure this is her issue. In the mean time we are giving her the Methyl B12 shot every other day until her appointment in March to again verify. The odds are on are side that this is an issue for Payton. She is also getting the MTHFR enzyme tested because it is the middle man in this issue.

B12 works closely with folic acid. A precursor folic acid molecule must interact with the enzyme MTHFR (methylenetetrahydrofolic acid) to become 5-methyltetrahydrofolic acid (5-MTHF). 5-MTHF gives the methyl group (the “M” part) to B12 so it can become methyl-B12.  Unfortunately, many children have a defect in this enzyme.  (Probably Payton) In a recent study by Dr. S. Jill James, 90% of children with ASD were found to have methylation defects. http://treatautism.ca/b12-and-methylation/
The shot is a miracle for some parents. We are praying so hard that is the case for us.

 We are putting our best foot forward and praying our hardest for success but are reserved in knowing that it may or may not happen. I am scared to death to give her a shot every day but I know it is for the best. It can't hurt her so why not? Everything we are doing is because we love her. One day maybe she will understand just how much we love her.

All for Payton

Jacksonville here we come!

We are gearing up for our appointment with our DAN doctor and we are so anxious. We have collected all of Payton's medical records and read through them and its funny what doctors write. During her delay evaluation, the doctor put, saw child eat crayons, does not color with them. I just have to laugh because at 20 months old during that time, it was not a concern for me. It had to of been written down though. Trenton still taste tests crayons and he is 4. How about the fact that at 20 months she had no speech or receptive language? That wasn't written down though. 3 months later she saw another doctor and luckily he saw what I knew all along! Seeing her diagnosis on paper is very emotional for me still. I never saw it written down, only coded. But we are moving on and trying everything to get this beautiful girl out of her cocoon. 

Just this week Payton started Therapeutic listening therapy. What is it you might ask.....
Listening is a function of the entire brain and goes well beyond stimulating the auditory system. We listen with our whole body. In order to fully address listening difficulties one must also attend to the listening functions of both the hearing ear and the body ear. One such approach that addresses the multiple facets of listening is Therapeutic Listening. (Listening With the Whole Body) The main idea is to emphasize integration of the auditory and vestibular systems together. Since there is such a close connection with visual functioning, visual processing also will likely improve. Particularly spatial awareness, and the concept of time and space. (http://spdsupport.org/articles/11-therapeutic-listening.shtml) She will start using headphones for about 5-15 mins at a time. It is a program that has had research done with excellent results and the hope is she is more attentive and that it strengthens her listening skills indefinitely. We also learned recently that she has a weak core. We started more core strengthening exercises that will strengthen her core muscles. Devin and I were kind of shocked to learn that because she is so strong. She uses her arms and legs for everything but if she is laying down, she has difficulty arching her back and lifting her head. Weak core muscles are common with ASD kids. I never realized how important your core is until recently. If you want to learn more read here: http://miriamjang.wordpress.com/2011/03/24/poor-muscle-tone-and-severity-of-autism/


On top of her Autism diagnosis Payton also has sensory processing disorder. Formerly known as "sensory integration dysfunction" is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively. 

The listening therapy is supposed to help Payton become more focused and attend to task and hopefully start to listen better! :) I will update when we get back and let everyone know our next steps!!! We thank you all so very much for the donations to make this possible. We love every one of you more than I could express. 

                                                        This girls face says it all. 

Autism will not define her...

First I want to take the time personally and thank every single person who has supported and donated for Payton.  We are so grateful to have amazing people in our life. We have almost reached 1,000 on GoFundMe! With outside donations, we have enough to cover her first appointment and Lab work. We  have a long way to go but I know that we will make it happen no matter what. I really would like to take this time to give some background story for others who do not know Payton or our family personally and insight to what we are planning to do medically for her that our insurance will not cover.

Devin and I have been married almost 10 years this June and have 3 beautiful kids. Our boys, Jackson 8, and Trenton 4 are neuro typical children. Meaning, there is no delay in development.

Autism effects 1 in 54 boys and 1 in 252 girls. It is 5 times more common in boys than in girls. How did this happen to us? I did ask myself that quite a bit. What did I do wrong? Was it that Tylenol I took for that headache? Or that occasional Coke I drank? I know I was grasping at straws but I just didn't understand how I could have a girl on the spectrum. Shouldn't one of my boys been diagnosed? It is 5 times more common. That was my way of thinking 6 months ago after we got the diagnoses. Now I am no longer consumed with why her,  why us, and what did I do wrong. I think it is human nature to ask those questions when something in life comes up that is unexpected. Leaving that office I had already felt defeated. There is NO cure. Only HOPE. I started googling nonstop trying to find a story on Autism recovery, specifically girls. I quickly realized that there is not enough information on girls on the spectrum. Clinical trials of new medicines or therapies are usually a boy only thing. How is that fair to the 1 in 252? Its not.

Devin and I always are searching new therapies, studies, and trials. We came across a study that talked about Gut Microbes being linked to Autismlike symptoms in mice. (http://news.sciencemag.org/biology/2013/12/gut-microbes-linked-autismlike-symptoms-mice)

That caught my attention immediately because Payton always seemed to have tummy issues. Since she cannot communicate we don't know if she hurts or is in pain when she is crying. We just have to guess. Her stools have always been "different" than what our other two kids are. So that got our wheels turning. What if it is something bigger than just a neurological disorder? What if she has underlying issues that are hindering her ability to communicate and focus? So then we dug more and know that there are hundreds of doctors in the United States that run tests to discover the issues our children may have but cannot tell us. This is breaking away from the typical "doctor" and searching for alternative medicine. Probiodics have been proven to be beneficial to help promote good bacteria in the gut, hyperbaric oxygen therapy has been proven in different children to be a beneficial tool as well. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3472266/)

Now on to the most controversial topic in the Autism community, vaccines. First I would like to say that yes I think vaccines are very important, I do believe they played a HUGE factor with our daughters regression but I don't think it was the single thing that caused her Autism.  After reading this (http://www.sciencedaily.com/releases/2013/02/130225162231.htm), I am so anxious to see if Payton does have dangerously high toxic metals in her blood stream. Maybe her body couldn't handle all of the vaccines she received when she turned 1. Maybe she was already damaged and it caused her to go into a complete regression. Although we will never know exactly what caused her Autism, we will soon know everything we can medically about how her body is functioning and what she is lacking to get her to the best place she can be so she can continue learning.

Everyone who has donated has a part of my heart in this journey because without amazing friends and family, this wouldn't be possible.

We are getting her the best doctor, check her our here
(http://www.ageofautism.com/2011/01/dr-julie-buckley-on-treating-underlying-medical-conditions-of-autism.html) Please read about her! She is so brilliant and I think because of her personal experience she will do everything in her power to help Payton lead the best life possible. So thank you, Thank you all for contributing to our daughters fund.

Last, but not least, When Payton started the most recommended therapy, A.B.A, we were anxious and praying to see some results. We needed to break the barrier and enter our daughters alternate world and let her know we were there. We happened to get one of the BEST in the business. Within weeks our daughter turned when a noise was made, when door opened, when the T.V. turned on. She finally left her little world for seconds to figure out what was going on in ours. The doctor who diagnosed her told us that with her severity she might not ever talk. Ugh those words still crush my soul. A few months ago Payton said her first word, GO! For awhile she said it randomly, then she would say it after we would say, Ready, set.... GO! Now she is using it in context. When she is done with therapy she will grab my hand and tell me go! She is adding words slowly and mostly for a salty pretzel or a m&m, but she is following vocal cues and again that is huge. She is showing that doctor that Autism will not define who she is. We are on a long journey, a road that unfortunately is traveled quite a bit, but we will not stop. Knowledge is power. We will do everything we can to help her. If by chance we don't see any improvement, then at least we tried EVERYTHING we knew about to help her be the best she can be. We love this girl more than words can ever express. She has completed this family. She has already taught us more than I could of imagined. Autism will not define her.

Look how far we've come!

It has been almost 5 months since Payton was diagnosed on the Autism Spectrum. A spectrum I have come to study and gain a better understanding to know our daughters way of thinking. Devin and I were talking about how far she has come since July. In the beginning of therapy we didn't exist at all. It was like groundhogs day all over again everyday. She never looked at us. She never wanted us to play or even come for hugs or kisses when she fell or was sad. She didn't know she had brothers. Since July, she has grown so much. Baby steps of progress but important steps that are essential for life. She is responding to her name when she is not hyper focused. She looks at us in our eyes more often than not. She has mastered two inter verbals. She is trying to say set when we say ready set go and two when we say one, two, three. She is making more sounds than ever before.
 She can wait for about 60 seconds which is HUGE.

She holds hands better when we are outside. She still doesn't have receptive language or much expressive language, but we are working hard to get her there. She has been very in tune watching our mouths move when we talk. She has started to mimic clapping and blow kiss when asked. Little things to some parents but HUGE for us. The holiday season is upon us and I always feel like it is bitter sweet. Its one month closer to the 3 year anniversary of my sisters passing, the 1 year of my uncle passing and its hard to ignore the holes in my heart that are yearning for one last hug or one last conversation. Life is so incredibly short. We are full of gratitude for Payton's progress. She has a long way to go but we have come so far already. I cannot wait to see what she can accomplish with the life she was given because the Lord knew she was strong enough to live it. We are leaving for Phoenix for Christmas in a few weeks and we are excited to be with family again because life can get quite lonely when your so far away from the ones you love especially during the months after adjusting to our new normal. What I would give to call my sister and say hey can you come watch the kids while I...... One day I will be able to!

We are so blessed beyond words. We have been given a challenge we never thought we would have to do but it has grown our family stronger. Devin and I have grown so much as parents and we both have our moments of why us, why her, why why why? We quickly think why not? We can do this. The worst part about it all is not being able to just make her better. There is no cure and there is no one reason why and there is no two kids alike on the spectrum, nothing to compare and each and every child's journey is different. The unknown is what eats me inside. When I am down and think I cannot do this anymore, Devin lifts me up. When he is upset and sad I can make him laugh and feel like everything will be OK. We don't know what the future holds for Payton, but we can wake up every morning and say that this girl will change the world and we are so lucky to be her parents.

Everything has changed

It has been awhile since I have given a detailed update on Payton and our life lately. First I want to thank everyone who donated to Devin's bike ride! He starts the 200 mile journey on Saturday morning and you all donated to such a great cause. The EOD wounded warrior foundation is amazing and your money is going to help service members who have been injured. Thank you again!

Everything in our life has changed. I used to have one child in school and two at home and now I have three gone. I was not ready for this! I get about an hour and 45 minutes alone each day and I get very lonely! My brother and sister can attest because I call and bug them! Love ya Lex and Ty! We have been laughing at how fast life changes. Our worry years ago isn't the same as our worry today. We not only have mastered military acronyms, but also Acronyms associated with Autism. ABA,BCBA,ASD,IEP,IFSP,VMAP,BMP,NV,DAN and the list goes on!!! We are getting the hang of it and sometimes we feel like we talk in code. :)  Payton just started at a new center because her therapist opened her own! She is so amazing and loves our daughter like she is her own which literally is all I could ever ask for. We did get so lucky.

We have had a lot of progress this past month and a lot of new behaviors that we are working on. Payton turns to her name about 30% of the time which I will take because it was 0% a few months ago. She is using her PECS book to communicate so much more. She is a happy girl and that is all I need is a smile on her face and a belly laugh to get through the days. My heart aches for my husband who so deeply wants his daughter to know he is there. She uses me as a tool and sometimes just needs her mommy and usually only pulls me around for things she needs. He wants her so bad to want him. It breaks my heart and we are working on her noticing him and letting him touch and love her. One day it will happen and until then he enjoys her smile from a distance and occasionally tortures her with kisses.

                            Trenton is trying the lure her out of the corner and out of her blanket :)

Payton enjoys flipping objects over and over, lining up her mini animals, flipping through books, flipping over puzzle pieces and playing with Mr. Potato head and squishing play dough. She is slowly learning how to do functional play with toys. She is slowly making progress and we are happy about that. She really enjoys being outside and listening to the Tangled soundtrack. She is going to be Rapunzel for Halloween and the boys are a blue power ranger and a ninja! We are blessed beyond words and have such beautiful kids and are grateful for the boys and all their hard work and the love they have for their sister.

Just when the Caterpillar thought the world was over, it became a butterfly....

It has been an interesting month to say the least. Payton is such a sweet girl and I love all of her little quirks! She has a fascination with putting a blanket on her head and has started to cover her ears. It seems like she is becoming more sensitive to noise and her blanket is her hiding place and security to get away. I encourage her to not do it but I understand she needs an output and when you can't tell mommy what is wrong or go away, the blanket works! I have had some awful experiences recently and I wanted to share them with you all.

I had a rough day about two weeks ago on Friday and got in my first real life fight over my child. I hate confrontation and I prefer to keep to myself but when it comes to my kids, you better know I will fight to the death.  Before Payton was diagnosed we were receiving therapy through the State of Florida. She had seen this particular therapist twice before we got her diagnoses and enrolled her in a wonderful place that insurance would  cover. They apparently have to do home visits quarterly(the state of Florida) and I agreed that the same therapist would come and do an evaluation in my home and mark her progress for the records. She walked through my door and we sat and chatted while Payton stacked her blocks in a row. She asked where she was going and how much ABA she receives. I told her she gets 10 hours a week and that's all she can tolerate right now. She then tried to get Payton to finish a puzzle by doing hand over hand and forcing her to the point of her screaming to finish her task. I asked why she was doing that and she said,"Do you not sit in on her therapy at the center?" I said, "I have and do multiple times and it is always about what motivates Payton. Lots of floor time and using what her interests are and reinforcing that way." She then said,"Oh, well it doesn't sound like the ABA that I agree with and if you let it continue and you don't force her to finish things and sit for longer than two seconds, she will end up in a home because her behavior is going to get worse and you are not doing everything you can for her." At that minute my blood was boiling, my body was raging in anger and I did everything I could not to just karate chop her in the throat." I said, "GET OUT OF MY HOUSE." She continued on and on about how the floor time is not helping her,(we have seen so much progress already with what we are doing.) and it is my responsibility as her mother to make sure she is a "normal" functioning girl. I walked her to the door and said,"You are not welcome here and I am calling your supervisor." I slammed the door and cried and cried and cried some more. Then I got the courage to call my husband to let him know what happened and tried to call her supervisor. I got no where with it except questioning myself AGAIN on if we are doing all that we can for Payton.

She has grown just in the past month and will give us amazing eye contact and will grab others to play. I do want to preach about Autism Awareness. Today at Walmart, I was grabbing some cookies for Jackson's class and this lady approached me and she had a daughter the same age as Payton. Her daughter looked at Payton and said, Hi! What is your name? Obviously Payton didn't look or pay attention. I said to her mom that she doesn't quite talk yet and her mom looked at me and said, "Oh you better get that checked out because my daughter has been talking for almost a year. She is two right?" I wish I just had a business card that says, " My daughter has Autism." The definition is.... and hand them out whenever that happens. I then told her about Autism and she was shocked because she looks "normal". Can I say that I hate the word "NORMAL" What is normal anyways???? I educated this poor girl and in the end she did feel bad but at least HOPEFULLY she doesn't do it to someone who is not so nice about it and she caught me on a good day! In the end we helped someone who was unaware and made sure that she understood exactly what it was. Anyways that is my update! I hope everyone is doing well and we are ready for fall here in Florida! The boys are doing great and we take it one day at a time!!!!