Monday, April 27, 2015
The first regression was after only a few days old. The perfect baby boy who slept so well during the night and nursed like a champ was gone after the Hep B and replaced by a vomiting, colicky, sleep-deprived baby. And that's over simplfying it.
From the referral to the Early Intervention Team in our state, I made it my personal mission to learn everything they had to offer and to work non-stop to help my son catch up to his missed milestones.
Over the next few months, I would see a glimmer of speech development from time to time, but just when I thought speech was emerging, there was another ear infection, another round of antibiotics and/or another vaccination.
Once the diagnosis of Autism came, forget trying to get a doctor to treat any underlying illness! He remained sick with fevers, vomiting and rashes and my pleas fell on apathetic ears.
I didn't learn about biomedical treatment and DAN! doctors (now MAPS) until Tristen was 9 years old. We saw immediate improvements eliminating wheat and dairy and never looked back.
We made slow progress using a variety of interventions such as supplements, chelation, yeast treatment, HBOT and chiropractic.
Within the last year, we saw even more gains, especially after a homeopathy trial, and we were close to single digits on his ATEC. At 17, we had a good prognosis for his future.
Unfortunately, just after New Years, things started to go downhill.
Sometimes you have bad days, or a bad week, so in the Autism world, if he's a bit "off", I don't get too concerned right away. I wait and watch to see if it progresses or if he comes out of it.
But weeks turned into months, and as I battled my own histamine related brain fog, all I could do was watch helplessly as my sweet 17 year old boy continued to spiral downwards.
I watched as he literally jumped out of bed this morning pacing and reciting movies in his head at 4:45 am.
During his homeschool spelling lesson, he became easily agitated, EVEN as I slowly spelled out each word for him, there was stomping and frustration while he was on the verge of tears. His usual drive for his homeschooling plan has diminished, as he can barely keep his mind from wandering back to Star Wars.
Despite the Epsom salt baths and a slathering of oils from head to toe, he spends most of his day pacing and twirling and running and sliding from one end of the house to the other, reciting Star Wars episodes he has memorized.
I couldn't believe how difficult it was for him to even watch a TV show he picked out, because every 10 to 20 seconds he had to pause it to pace back and forth while reciting Star Wars.
Sometimes I just get in my car to drive to hear the silence.
I'm losing him. I'm losing him all over again. All the years of sacrifice and regimens for nothing. We are back to that same 9 year old boy, who doesn't answer questions or hear his name when it's called.
Three weeks ago, he spoke in front of the church congregation, and needed minimal help reading his paper. Yesterday, he went into fight or flight mode and nearly ran off crying.
So what do you do when you have to start over, from square one, and you are still in so much debt from previous treatments, you don't have a clue how you are going to start, if you can even figure it out?
I have about a hundred dollar a month budget to treat myself and my two boys.
Did I tell you about Tanner?
Tanner was diagnosed at 12 with sensory processing order, anxiety and school diagnosed Asperger's. He can be difficult, especially when it comes to leaving the house. He has become much more argumentative lately, which I chalked up to his 15 year old self. Feeling sick and miserable all the time, his combative tone is often more than I can bare.
A couple of weeks ago, he is talking to me and his head twitched to the side and he grabbed it and said "Ow!". He preceded to tell me he gets frequent shooting pains in his head that causes his head to twitch.
Last Wednesday night, there was finally an activity at church he was excited about. The boys had bottles of Diet Coke and Mentos to make explosions. I watched candidly from inside the building....mostly to see how Tristen was handling the activity. I was absolutely shocked to see Tanner bouncing on his tip toes and shaking his hands at the wrists. Quickly getting out my phone to video, I managed to see it two more times...the same movements some of my autistic students would make when they were super excited. I'd NEVER seen Tanner do this before.
During reading today, he could barely read because he was stuttering so badly.
So what is my next step? Do I quit the supplements I've been taking to combat histamine intolerance and Mast Cell Activation....basically essential for me to barely function so I can heal my kids? Of course! Except, if I do that, I won't be well enough or competent enough to heal them.
Is it worth it to do genetic testing on us all? If it is, how long before I can save up to have it done?
How can I afford payments to get us all back to a "real" doctor and the travel expenses of getting there and back?
Is this really about Mast Cell Activation for us all? Or is it more like PANDAS/PANS?
Do I forget about all of that and just go homeopathic?
I need help....and I HATE asking for help....
But I can't continue to watch my family's health decline. This is their future. And it means everything to me to recover them from the illness keeping them from reaching their full potential.
If you have a service or a supplement that you believe would help my family, I would love to hear from you. You can email me at Meadow.Davidson@gmail.com
If you are so inclined to make a monetary donation, see the PayPal button on the left of this page.
As we start again on this healing journey, I will be blogging about our progress here and at greenbeangirl34.blogspot.com
“I am never going that park again.” Tristen said a resolute sadness. He was ashamed for “getting into trouble”, which he rarely does, because he is very adamant about following rules.
“Honey, you didn't do anything wrong. The police came to make sure you weren't supposed to be at the High School. You are homeschooled, so you can be at the park. You didn't do anything wrong. The police were just checking on you.”
“Oh!” He exclaimed and he bounced up and galloped off with a light in his eye and a slight smile on his face.
Why didn't it make ME feel any better?
As I sit here and repeat the mantra to myself...you weren't doing anything wrong, you weren't doing anything wrong....the paralyzing fear is real and intense.
I don't feel good about my kids playing at the park this morning while I walked the exterior sidewalk, because the cops showed up and interrogated them...and because I know you don't necessarily have to be doing something wrong to get into trouble with the police or have your children taken away.
I know this for multiple reasons.
I read this week about kids being taken away from parents for walking home from a park alone.
I know this from the countless medical kidnaps going on in this country from anything from asking for a second opinion, to delaying a vaccine or the doctor just plain thinking it's all in your head . Justina Pelletier's case made national news. You can read about it here.
The Stanley's in AR are still fighting to get their kids back after they were taken for having a legal water purification substance in their house.
Now that the initial shock is over, I'm angry that I have to be afraid. My husband fought for this country and was injured for life doing so. He fought so we could have freedoms. I don't feel very free.
I'm afraid to send my child to public school. You don't have to do much googling to see all the abuse in special ed classrooms and buses throughout the country.
I've been afraid to take my kid's to the doctor for fear of being be-rated for refusing a shot or an antibiotic or worse, being reported to CPS. I'm afraid of being kicked out of the office because my kids have not had their High School boosters, or being forced to sign something admitting I'm a neglectful parent.
And now I'm afraid to go to the park.
There isn't much to do in this tiny southern town. Both of my boys, 15 and 17, have social impairments that make it hard to relate to others and make friends. Spending time outside is also a chore, but I decided to take advantage of the spring weather and take them to the park to meet up with another homeschooling family from our church from about 7-8 each morning. Today, someone in the community called the police on the kids for being in the park.
As my friend and I rounded the corner and saw three police cars parked by the steps of the enclosed basketball court where the kids were playing, we started to run. I actually hoped in my head someone was hurt rather than “in trouble”. Then the panic set in, I stopped and doubled over, sick to my stomach with terror.
You see, regardless of all the reasons a person nowadays should be worried their children will be taken away from them, I experienced this first hand a couple of years ago. My grandmother, who would give June Clever a run for her money, had her 17 year old granddaughter taken away from her over a misunderstanding due to her disability. Seeing my 85 year old grandmother taken away in handcuffs crushed me in a way I have no words to describe.
But she didn't do anything wrong.
My world crumbled. Nothing made sense anymore and I no longer felt safe. I felt like anyone could be punished for anything no matter when or where or if it was warranted.
My grandmother's lawyer reviewed everything and was in shock because the police had no legal standing to have done what they did.
She went through a year of hell anyway. Attending every meeting, counseling, court date and spending thousands of dollars on attorney fees. They even kept her granddaughter from her after she turned 18.
There is an illusion in this country of greatness and freedom.
My grandma never had so much as a parking ticket in her whole life. She retired as clerk of courts and new the judges and police in the average town well.
If it can happen to her, it can happen to anybody.
What I learned was this: It's not the actual doing of wrong, it's the perception of wrong-doing by those in charge.
We've had an unusual amount of rain here. Lots of green grass and wildflowers. I see one of my neighbors mowed all of their lawn except a about an 8 by 6 foot patch that is considerably longer than the rest. The city offers citations to those who do not keep their lawn trimmed to a certain height, so I was curious to why they did not mow such a large overgrown section.
Bluebonnets. Texas' state flower. Anyone you ask will tell you it is illegal to pick/cut them. It's taught in schools and down from generation to generation. I was intrigued and started to research.
It's not illegal. You have to be careful what you do in state parks, gardens or private property, but that's with anything and not limited to bluebonnets.
What is my point with all of this?
Even with this knowledge, I wouldn't be surprised if a police officer stopped me and prohibited me from doing so.
It's not about the real law, it's the perception of the law by the person enforcing the law.
Tuesday, March 24, 2015
You may see me posting a lot about the dangers of vaccines. The truth of the matter is, my son was injured by vaccines. Initially his brain started to swell after his first injection as an infant causing brain damage. At the age of two, he was diagnosed with Pervasive Developmental Delay, Not Otherwise Specified and an unknown fever etiology. By the time he was 8, he was diagnosed with Autism.
But you don't have to believe me. I know I must sound like a mom who is looking for someone to blame. The truth is....I never wanted or needed someone to blame. I believe this was God's plan for Tristen, no matter how it came about, and I devote my life to helping my son reach his full potential.
Despite those feelings, I will never stop fighting to keep other children from being damaged. I believe Tristen was given to me at this time on earth, so I could help bring to light the dangers of vaccines to protect others.
You don't have to believe me. I know that "God" is just as a controversial topic as "vaccines". I'm not here to agree with everyone on everything. These are my beliefs and I'm allowed to have them.
My son suffering the lasting effects of vaccine damage resulting in an autism diagnosis, I believe, was in God's plan for us; unfortunately he had to be harmed to bring to light the injustice being done to thousands of children. Those of you believing in herd immunity should understand this concept.
When something so devastating happens to your family, you want to tell the world to warn them and protect them from the same fate. It's the same way I feel about God and my Savior Jesus Christ. I want to tell the world the power and peace that comes from that faith.
The sad thing is....I don't.
There is so much negativity when one share's their beliefs. I guess that's the price we pay for freedom of speech....we have the freedom to say it and others have the freedom to disagree. The disagreements I can take, actually, it's the hatefulness that pours out of some people that is hard to stomach.
So I want to extend a challenge. Don't believe me.
Don't believe what you didn't see. You didn't see my son scream in pain or witness his head swell. You didn't see him lose the ability to nurse or keep down any food. You didn't see him continue to slip away into his own world more and more after each shot, so much so, that he was unable to speak, listen or keep himself safe.
That's ok. Sometimes it's hard to believe what we didn't see.
Don't believe me about the existence of God. You didn't experience his tender mercy of peace in my heart after my son's diagnosis. You weren't there when I prayed for him to sleep; or when I pleaded with God to heal him of his rashes and fevers. You didn't see the miracles in progress after therapies and treatments. I get it. It's hard to believe what you didn't experience. It's tough to believe what you can't see.
Don't believe the countless doctors, scientists, therapists and teachers who believe vaccines contribute to autism. That is just their opinion after all, and there are just as many of them on the other side of the fence contradicting everything they say.
Don't believe the published medical journal articles proving vaccines cause damage, because, again, there are plenty of them stating the opposite.
Do you believe what a judge rules to be true? That if they find enough evidence, they can rule a vaccine caused autism in a certain case? It might be time you checked out the Vaccine Injury Compensation Program and ask yourself, "Why would a government program such as this exist, if all vaccines were safe all the time?"
Maybe you believe it's only used in very rare cases and refuse to look into it further.
You can't make an educated decision without all available information. And I'm not talking about second hand information spewed out of bought and paid for TV news reporters. I mean really taking the time to look for your own answers from trustable resources.
Maybe that's too much work.
Have you heard of the CDC whistleblower and the Merck whistleblowers? Would you believe that the CDC admitted to omitting data from their research paper to hide the link THEY found connecting the MMR to autism?
Here is my point:
What I really want you to take a moment to pay attention to is this:
The people who MADE the vaccines and put them into packages, added a piece of paper explaining the ingredients and the risks of their product. Forget the ingredients for a moment, because it seems no one can agree if these ingredients are harmful or not. But read the RISKS from the MAKER OF THE VACCINE. It is their own admission.
"Adverse events reported during post-approval use of Tripedia vaccine include idiopathic thrombocytopenic purpura, SIDS, anaphylactic reaction, cellulitis, autism, convulsion/grand mal convulsion, encephalopathy, hypotonia, neuropathy, somnolence and apnea. Events were included in this list because of the seriousness or frequency of reporting."
Tripedia is a DTP vaccine that has recently been discontinued. However, it is proof, from the maker of the vaccine itself, that an adverse event of this vaccine was in fact Autism.
I doubt they will make the mistake of adding that to any other insert, but I hope you will take the time to read them.
At the end of the day, we all have to answer to our own conscience. We have to make the best educated decision we can for our children. Research yourself at the site listed above.
Don't take my word for it.
Monday, March 2, 2015
Birthdays are always cause for reflection. Especially in kids with autism. So many emotions. Such a long journey, filled with progress, success, and innumerable blessings.
Amongst the positives, also lies the reality. As I type this, he is pacing back and forth reciting an episode of Chowder to himself all the while inserting snippits of sliding, spinning and flapping.
He makes a slight sniffing noise from the congestion in his sinuses. I make a mental note that I need to diffuse the essential oils.
I could write until my last breath about all the wonderful things that make up my Tristen. I could write about no matter how small the gain, the joy is large and pure. I could write about his future, where it should be and where it could be.
But today, I want to write about his self-lessness.
You might think that someone with autism is selfish. In ways they can be, even when they don't mean to be. They tend to see their wants and needs over others, just like many small children. If you really get to know people with disabilities, you will see there are many very kind an generous individuals. This is just one area where Tristen excels.
Although many of us may wonder why people forget our birthdays and sulk over not even getting a text or Facebook message, Tristen doesn't.
He doesn't expect it. He doesn't look for it and use it to define his self-worth. He can feel those who love him regardless of well-wishes and presents. He knows he will have a great day.
There are many people who are close to him, that consistently forget his birthday. Some who get him gifts some of the time, but not all of the time. Family, who he knows very well, often “forget”.
Tristen isn't selfish in that way. He isn't constantly wondering why the world isn't thinking about him. Nor, is he wondering why his family isn't thinking of him either.
In this way, he has been protected from the hurt that many kids would justifiably feel.
I'm sure, if his Dad and I didn't have a cake and gifts for him, he would ask why because it's been a consistent tradition. But, I know for a fact if we told him we couldn't for a good reason, he would be disappointed, but he would understand.
I learn so many lessons from him about compassion and what is truly important in life. It is not the number of friends you have at your birthday party or how many gifts you get. Celebrating another year of life is about feeling love, being loved and loving others....and a day to reflect on all that is good and has been good in your life. It's a day of gratitude.
And in this, I can be grateful and content on this birthday, and overlook the spinning, flapping and pacing, because what is in my son's heart, is worth a lifetime of birthday gifts.
Monday, February 16, 2015
I was visiting my Grandmother and she was reading over the paper as she did every morning. She shouted to me from the other room, “Did you hear this? It says there might be a link between autism and the MMR.”
“Sounds like a bunch of sad angry parents looking for someone to blame.”
I didn't read the article. I didn't even ask her for any details. I completely dismissed it. It was an incredulous idea....a childhood vaccination having anything to do with autism. Why would doctors expose infants and children to such a thing? It couldn't possibly be true.
I went on for years never hearing about it again.
During that time, I was focused on teaching my son. I was involved in his school and talked daily with his teachers, aides and therapists. I continued behavior plans and followed through with expectations at home.
I was focused and never strayed.
I was never in an autism support group; never even heard of one.
I never searched the internet about autism or tried to find other moms online. It was relatively new and I didn't have time.
I had two little kids who were constantly sick even though they never went to daycare. I was overcome with worry and took them to doctors, who never seemed too concerned and never really helped.
When Tristen was about 9 years old, I received a book for my birthday from my mother-in-law. It talked about kids like him who were chronically ill. The kids described in the book had the same issues my kids did. This was the first time I had some kind of direction how to get my kids healthy.
I took him to a new doctor who tested his blood. He told me how sick he was and that most of the vaccines he had been given had not provided him with immunity. I was shocked that I had done what I was told by our previous doctors, and put him through so much trauma, just to have them not work. This is where I started to question what had been taught to me my whole life.
I started to look back through their baby books and journals. I started to see where they had been affected by their vaccinations. My youngest son, Tanner, even had a severe reaction to the DTP where the doctor who finally stabilized him told me he should never have that vaccine again. The next doctor we saw disagreed and mocked me for my concerns. There were all these red flags never set right with me, but I didn't know what to do about it. Everything started to come together.
I wanted to continue to learn more about how to heal my son's health issues so I decided to go to my first ever autism conference and meet people who were just like me.
I took what I learned about autism and vaccines from lecturing doctors I met in person. And lots and LOTS of books.
I never believed the headline my Grandmother read to me 15 years ago, because it was easier to dismiss. Juggling a 2 year old with autism and a newborn baby while my husband was deployed left no time or energy to go down a rabbit hole of questioning everything I had ever been taught.
Last year I learned about the CDC covering up a link between the MMR vaccine and autism. They knew if the children received that vaccination on time (at 12 moths per the CDC recommendation) there was a dramatic increase in chance of autism. They found it in their own study, and they covered it up.
I'm not saying the MMR caused my son's autism, but it has definitely caused some kid's autism.
It is easy to dismiss something when it seems it can't possibly be true....when deep down you don't want it to be true because it upsets the foundation of what your life has been based on....being responsible and following the rules.
Saturday, January 10, 2015
I've watched Forrest Gump enough times to have the movie just about memorized. I watched it before I had a child with autism, and cried at the end and knew it was undoubtedly a uniquely touching movie. I watched it post-autism diagnosis with fresh eyes and an grew an even deeper love for the characters. I loved how Forrest's momma knew how to explain things to him so he could understand. I loved how Forrest tried so hard. I loved how Jenny was his childhood friend who stood up for him. As Tristen grew up, his dad and I often joked that Tristen would be content to mow football fields on a riding lawn mower when he grew up. This was a fond thought for us, because of what the movie said to us when we watched it. We marveled at his accomplishments. Forrest Gump led an inspiring and full life. Even though it is fiction, it gave us hope for great things for our son with autism because even with his disability, Forrest was a success.
One endearing thing about Tom Hanks' character, is that for the most part, Forrest doesn't really realize he has a disability. He doesn't seem to fully understand the impact when kid's call him stupid; he just replies with a quick phrase his mother taught him,"Stupid is as stupid does." It doesn't seem to hurt his feelings really, or sink in, he just continues to go about his business.
Tristen is about to turn 17, and luckily, I have not had to witness anyone saying something so cruel. When he has become frustrated from time to time over the years because he couldn't remember something, or a task was too hard, we would simply explain to him that it was OK, some people take longer to learn than others. We assured him he would get it with practice and patience. We never told him he was "autistic". We never labeled him in that way because we felt that he would take the term in a negative way and some how feel like he was "less".
I don't ever want him to feel limited; I feel there are so many ways for him to excel in life. I home school both my boys so I can give them a well rounded education that would go outside the norm of most public schools. We discuss values, morals and the future. I told the boys how infinitely important it is to me that they lead a good life, which meant being kind, generous, trustworthy and thoughtful. I often express the important of making good life choices so that they can be happy adults. After the short discussion, Tristen was about to leave the room, and stopped in the door way. He glanced back at me with a solemn look and heavy eyes.
"Mom, how long do I have to wait to have a "good life"." (he did the air quotes appropriately) His demeanor had changed so drastically...he was so visibly concerned...I called him over to sit by me on the bed and rubbed his back. He stiffened up with his arms folded across his chest.
"Tell me what you mean, honey."
He looked down at the ground...let out a long breath and said, "I mean....when am I going to be smart."
The scene played in my head: "I may not be a smart man, but I know what love is."
It was the same look that Forrest had. It was the same despair Forrest felt. It was the same understanding of the difference between him and others.
As my heart breaks, my eyes start to fill and my chin quivers. I search for the words he needs to hear.
"Everyday, Tristen. Everyday you are getting smarter and learning more and growing up. You don't have to wait...it's happening every minute of everyday."