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.