I've started about 3 or 4 posts over the past 2 months only to leave the computer for a break following the opening sentence. My personal energy has been thwarted & I've been experiencing a sense of survival autopilot with the intensity of the kids regiments & my outside responsibilities this summer. Even with an army of helpers & therapists (we love you - , Stacey Rhodes, Kaelyn Shaw, Erika Kicher, Shannon Kicher, Steven Pozeg, Tania Pope, Dr. G.) it has been just an astounding & profound whirlwind over the summer days.
This summer was our first with an intensity that has tripled past years programming. 100 hours weekly of programming across 4 children with an intensive focus in SonRise for S-bear & SJ. I mistakenly thought such a heightened structuring for the kids would also afford me time to work more for myself, as the kids were getting what they needed. Foolishly, I didn't take into account the contingent spectrum of *medical issues*, for all 4 of them. That, my friends, is a major project management violation.... ahh, yes-- contingencies.
Thankfully, we made it through the meat of the season & a lot of productive therapeutic programming until the wheels blew off the bus again.We've taken the past few weeks off the intense STRUCTURE (for those of you who dig SpaceBalls-- we have come down from "Ludacrous speed") & worked on health, *loving what is* (thanks, Stac) & just recovering to a baseline to get back on the actual recovery pursuit once again. Following our 1 week family vacation, ironically, E & I both started to feel sick again. Yes, we are not in the youngster category anymore, but the evolving symptoms of aches/pain/fatigue/etc were really escalating.
This year has been skyrocketing by in some senses... & painfully slow in others. There have been some big-time challenges & thankfully blessings. As I'm preoccupied with my own nest of little ones, I don't often get the luxury to see our extended family. We went on a flying quick trip back to the farm in WI to visit with Grammy/Papa, my brother's family, & even including a trip down memory lane back at my Papa's house, as my brother's family are moving in. It was just so surreal seeing the house with a new energy in it, yet with the old familiarity & love of our elders whom built our family there. Life is so PRECIOUS & it doesn't stop with our preoccupations, nor challenges.
I couldn't help but feel a little emotional leaving there, knowing the house would never occupy my Grandparents physically anymore. The emotional flip-side is that I'm positive Gram & Gramp would be so happy to know young exuberant life like my niece B. & nephew B. will bring to the house again. Regardless, I'm just so grateful to have my brother & to witness this new chapter that he well deserves. Having him, Mom & Dad together in only moments; I couldn't help but feel an overwhelming sense of gratitude. Thank you, God. REFLECTIONS, Reminiscing ... the onset of Fall always delivers unto me this mood.
On our trip up North, I only had our 3 girls & S-bear was gonna stay with Daddy for boy time. I had that pang in my stomach upon leaving, Momma's intuition... my boy was gonna need me. He had been so emotional that week, stimmy & full of new/odd tic behavior, even aggression like we've never seen in him. He is 5 years old & I still have a hard time separating out our little flock... even with his very capable Daddy. Roo even sensed it (big Surprise-- she has a 6th sense when it comes to her twin). She told me, "But, I will miss S-bear-- he's my favorite boy." We were only going up for about 24 hours.
The kids had not responded favorably to their last round of monthly detox a couple weeks earlier. Especially our twins. Though their monthly screening revealed a more detailed confirmation of this fact, I thought we could tough it out & delay their treatment for a couple days in order to make the trip. Besides, I hate how weeks stretch into months b/t seeing my family again.
That decision didn't bode well; especially since I started them on their overdue new medication to treat the new medical marvel discovery... again confirmed that week. All but SJ, have had a lot of sleep disturbance, wild mood swings, extreme emotional outbursts & aggression. Bella's stimming had so amped up, that she hadn't been even acknowleding our presence around her. Her new tic-- spitting on her skin, then smearing it. She wasn't opposed to spitting on others either. Ironically, people whom don't know our kids would just say "that's Autism". I say it is "Regression" with proof-filled medical deterioration.
So, the new medical discovery... Congenital Lyme Disease. It's a huge piece to our family's puzzle, but I find myself still not so excited to learn that they have a confirmed/named neuro-immune disease that has been destroying their body systems since their births 7/5/5/3 years ago. I don't know why having a name makes it any different because we've had these answers in piecemeal from the last 4 years of working in recovery mode for each of them. Dysfunctioning CNS, endocrine, metabolism/energy production, heart/lung/circulatory, lymphatic, renal disease, nerve damage, musco-skeletal, gastrointestinal, & hormone systems (to name a few).
Still it's a heavy burden my heart carries knowing that in the {assumed} safety of my womb-- a stealth bacteria was introduced to them (unknown to me), which changed the course of each of their lives & threatened their survival, even in pregnancy. Each pregnancy endured serious threatened, near miscarriages. I am ok with this neuro-immune disease for myself, but not gifting our innocent children. For further Mommy guilt, I unknowingly, poisoned these children with loads of metal laden vaccines & the infections they became sick with afterwards were treated with immune system annihilating antibiotics, which genetically they could not get rid of. By the way, I've read the genetic methylation mutations my kids have are present in approximately 25% of our population (I'm anticipating this figure is grossly under-reported).
**RANT WARNING** [If I seem bitter-- I'll clarify, I AM pissed. Because I followed a ironically named *well-baby* medical protocol a random panel of business suit wearing, Big Pharma pocket liner$ have the mainstream convinced both are saving our lives, even in absolute excess with no precautionary screening (excuse me while I vomit)]. Brutal honestly, it's a heavy cross. IMO we only traded one set of problems for another.
The only thing that pulls my heart & head upward sometimes is that no matter how hard this journey is-- I do see God is with me/us. I know He allowed each of these little complex beauties to grace our lives with divine purpose. That He continues to help them fight forward in this marathon, to blaze a trail & continue to beat such grueling odds. He reminds me, most often daily, even when I'm too tired or weak to see myself. I may hear His message from an unexpected person amongst the everyday mundane & remember something I hadn't connected earlier. He is with me, even when it seems we are so alone.
So, I'm not sure where all of this reflective brain dump is leading...
ok, got the message-- For the record... "AUTISM IS MEDICAL" - YES, NEEDS TO BE SAID DIRECTLY. I am one of hundreds of thousands of parents that see/live this daily.
I will bold now for re-emphasis... AUTISM IS MEDICAL.
Shall I highlight now?... well, I hope you get my jest.
People, including professionals, whom regurgitate medical diagnoses as if they were granite carved, non-evolutionary, non-medically founded conditions are not thinking about the NATURE we live in. We are biophysical beings, living in a world where disease evolves to the demands & pressures we humans put on nature, hence our environment. Autism is no more a static mental condition than a mosquito bite.
It breaks my heart to finally hear my son speak (after 4 years of tedious alternative medicine intervention), "mommy, I'm sIIIIIIIIIIIIck-- in my belly button (surrounded by tantrum like flailing & waves of innocent tears)." His words replace the screaming sometimes. Bella & SJ aren't so lucky-- they have only crying & *odd* behavior to express their pain & discomfort. Yesterday S-bear told me, "Mom, you (meaning *I'm*) so tired today." Roo tells me at least 6 times a day how tired she is, as she lays her little waif frame over my lap. And, because she was the lucky one to communicate with words from 18 months on-- her complaints of hand/foot pain, headache, fatigue, tummy aches, etc were answered by our ex-pediatrician with "she's fine, she's just seeking attention". When she lost complete control of her bladder, then bowel function following a year of being day/night potty trained-- this doctor suggested she will outgrow it, when even a slew of Urology tests revealed nothing significant. When I did my own research & asked a lot of in-depth questions, he retorted "well, Mrs. Schoonveld-- that's one theory. You are very good at coming up with them." Seriously. I had to choke Satan out of my voice when I told him, "at least I'm looking for some theories!" I wonder if this was his child(ren) would he be so casual?
So, maybe this little epidemic called Autism, could give us some valuable insights about the future of our human race? It's just like Cancer, Diabetes, Heart disease, etc, etc... we are predisposed by some genetic factors to underlying medical challenges (& mutations) perhaps, yet the meat of this disease ignition is Environmental. I witnessed this 4 times over & it ain't done yet. We CAN make a difference... we have to fight for more *appropriate* research funding. God help us.
