9.02.2011
8.19.2011
Reflections... rambling & then some
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.
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).
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?
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.
6.18.2011
PSA/Press Release Team Schoonveld - Els for Autism Golf Challenge
EVENT TEAM SCHOONVELD & SCHOONVELD for Els for Autism Golf Challenge
INSPIRATION
An ordinary (local Chicago-land) family navigates an extraordinary journey of Autism, times four (four children born in four years -- now ages 3/5/5/7). We were pregnant with our 4th child when our only son regressed & was diagnosed with Autism. Over the next 2 years our other 3 children, also each regressed, & are diagnosed at different areas of the Autism spectrum. It was & sometimes still remains unclear why God chose this path for our family. Though our journey into parenthood has not been as we imagined, we are better people for the ways our children continue to teach us wisdom beyond their years. We look to God & the hope of tomorrow for answers to unlock the many doors into the world of Autism. Foundations with vision like the Els Center for Excellence are opening some of those doors. To all those supporting this charity, E. & I give our most sincere thank you on behalf of the entire Autism community.
GOAL By 8/29/11: To raise over $10,000 (through monetary sponsorships) for the Els for Autism Center for Excellence mission!
Click here to donate --> SPONSOR TEAM NOW EVENT LOCATION/TIME
Cog Hill Golf Club - #4 Dubsdread
Lemont, IL 60439
Monday, August 29, 2011 · 8:00am
Follow OUR EVENT
Our Family Blog
http://detourautism.blogspot.com/2011/06/were-sponsoring-team-schoonveld-for-els.html MORE INFORMATION
Our 1st Ever Autism Fundraiser -- Team Schoonveld @ Els for Autism Golf Challenge
In honor of our children: Bella, Roo, S-bear & SJo-- We will be sponsoring “Team Schoonveld” for The Els for Autism Golf Challenge on Monday, August 29, 2011, in Lemont, IL at Cog Hill.If you would like to sponsor our team and help contribute to Team Schoonveld’s initiative to support Ernie Els for Autism Foundation's mission. Click “SPONSOR TEAM NOW” at the top of the Page above “Fund Raising Target” to make a tax deductible donation to a 501C-3 charitable organization! Our goal is currently $10,000—yet we want to blow this goal away! Each & every dollar counts; any amount contributed is deeply appreciated by all parents (loving someone with Autism) and individuals with Autism. Or, simply help us spread the word about this event by sharing our blog or Els for Autism golf challenge home page. See our Team progress here.
Els for Autism is one of the Initiatives for championing Autism Awareness, Acceptance & Advocacy for positive change which our family believes in. http://www.e4agolf.com/elsvideo1.html
6.09.2011
The Illinois State Budget & Affects on our Developmentally Disabled Citizens
Many people are shocked to know, myself included, that the current state of our Illinois budget will greatly impact services for our most vulnerable citizens, the Developmentally Disabled. The link below will explain more in detail. This is a MUST TAKE ACTION NOW-- item to have ANY CHANCE @ turning the tables before the end of our fiscal year-- June 30th.
The State of the Illinois Budget?
If you haven't done so already-- please call/fax/email/mail (all) Governor Pat Quinn's office to make our voices heard to protect our challenged loved ones & their support systems.
HERE'S MY CORRESPONDENCE.........................................................................
The State of the Illinois Budget?
If you haven't done so already-- please call/fax/email/mail (all) Governor Pat Quinn's office to make our voices heard to protect our challenged loved ones & their support systems.
Governor's contact information:
Phone 217.782.0244 or 217.782.6830
Fax 217.524.4049
email governor@illinois.gov.
Office of the Governor
James R. Thompson Center
100 W. Randolph, 16-100
Chicago, IL 60601
HERE'S MY CORRESPONDENCE.........................................................................
June 6, 2011
Dear Governor Quinn,
I am absolutely sickened by the thought process behind the eminent decision to eliminate all Illinois DHS Respite programs, downsizing home based programs (that allow families to keep their children out of institutions) & other vital DHS programs.
I am mother to 4 young children in 4 years, all autistic-- having regressed after the pregnancy with our 4th child. Our eldest child has Down syndrome as well. All 4 children have profound medical & support needs. We have no nearby family to help us. We did not choose this life for our children. God chose for us to be parents to these amazing 4 gems; we cannot raise them alone without these vital services. All of children have intensive care needs between medical, supervision & self care. Our eldest daughter recently has been completely immobile in a body cast & still requires 100% assistance for care.
It's taken us 2 years to finally get any assistance in state respite, even with such immense needs & now we may be back to ground zero.
My husband & I are responsible taxpaying citizens whom want to raise our children in our home, with our values, not give them over to state institutions. We need help desperately to provide for all their daily needs, through the very programs that are to be eliminated.
I do not understand why our state leadership would target our most vulnerable population (those with special needs) -- by cutting the lifeline of services to support them, in order to rectify our state budget. If this decision goes through, more families will end up losing their children & the state will be responsible for much more costly upkeep of its disabled citizens in state institutions. Our disabled children have great promise of being PRODUCTIVE & CONTRIBUTING citizens, when raised in their loving family homes, with the early intervention & intense support we parents must provide.
It would be incredibly IRRESPONSIBLE decision (financially & ethically) for Illinois leadership to make a decision NOW that would only grow our State’s financial problems infinitely in the future, as the needs & care requirements would absolutely grow for this population having these services removed.
The idea of these program cuts are both heartbreaking & in my opinion, a shameful reflection of the values present in our Illinois leadership. God help us all if this decision somehow makes it through now; as I understand, this bill has cleared both the house & senate now & resides on YOUR DESK, Governor Quinn.
I IMPLORE YOU, to get some perspective on this MATTER. Read our family’s blog entries (search medical, help, respite, etc) & you will begin to gain some hefty perspective of *what it requires* to parent a child with these extraordinary needs. www.detourautism.blogspot.com You will also understand quickly how the divorce rate amongst our population is above between 80-90%, which further bogs down our judicial systems, etc, etc. The financial repercussions for our state, ripple out much further than the direct point of care for our challenged & disabled citizens.
HELP US KEEP OUR FAMILIES TOGETHER!
If you personally, ever come to be in my shoes, as a parent/ family member to/or disabled yourself (special needs aren’t occurring just at birth—people become disabled EVERYDAY)—
what would you feel, knowing our very closest country’s leadership simply turned their back on those people truly most vulnerable & defenseless?
Sincerely,
Momma T
Mom to: Bella 7 (DS & Autism), Roo 5(Autism), S-bear 5(Autism) & SJ 3(Autism)
6.06.2011
Our 1st Ever Autism Fundraiser -- Team Schoonveld @ Els for Autism Golf Challenge
In honor of Bella, Roo, Sbear & SJ-- We will be sponsoring “Team Schoonveld” for The Els for Autism Golf Challenge on Monday, August 29, 2011, in Lemont, IL.
If you would like to sponsor our team and help contribute to the The Els for Autism Foundation's mission. Click “SPONSOR TEAM NOW” at the top of the Page above “Fund Raising Target” to make a tax deductible donation to a 501C-3 charitable organization! Every dollar counts and any amount contributed is greatly appreciated by all parents (loving someone with Autism) and individuals with Autism. Or simply spread the word about this event by sharing our blog or Els for Autism golf challenge home page.
Els for Autism is one of the Initiatives for championing Autism awareness, acceptance & advocacy for positive change which our family believes in. See our Team progress here.
http://www.e4agolf.com/elsvideo1.html
Thank you to our sponsor, J.A. Watts, Inc., Julie Watts and Uncle Mark Schoonveld, and all of our family and friends whom support us on this mission daily and year after year.
If you would like to sponsor our team and help contribute to the The Els for Autism Foundation's mission. Click “SPONSOR TEAM NOW” at the top of the Page above “Fund Raising Target” to make a tax deductible donation to a 501C-3 charitable organization! Every dollar counts and any amount contributed is greatly appreciated by all parents (loving someone with Autism) and individuals with Autism. Or simply spread the word about this event by sharing our blog or Els for Autism golf challenge home page.
Els for Autism is one of the Initiatives for championing Autism awareness, acceptance & advocacy for positive change which our family believes in. See our Team progress here.
http://www.e4agolf.com/elsvideo1.html
Thank you to our sponsor, J.A. Watts, Inc., Julie Watts and Uncle Mark Schoonveld, and all of our family and friends whom support us on this mission daily and year after year.
5.23.2011
Meet one of our Earth Angels -- Ms. Stacey Rhodes
Let me start with I cannot say enough about this amazing lady whom has become a true friend. We met Stacey nearly 4 years ago when she first began working with S-Bear through early intervention. I was impressed with her positivity, passion & talent upon meeting her. What makes her a standout are all those things, plus she truly wants to COLLABORATE! I never take that for granted in working with the myriad of professionals surrounding my nest of 4 extraordinary blessings. Before meeting Stacey, I had never known a therapist to want to have a team meeting, share a binder of written team notes, etc, etc. I always felt the weight of being the integrator as the family matriarch & scheduler of all therapy work amongst the 4 kids.
Stacey has seen us through some of the roughest times of our journey. When she started, Bella & S-Bear alone had been enveloped into Autism. Within the following 2 years we hit rock bottom, witnessing our 15 mo old baby drift away & only months later, Roo then 3.5 years old regressed sharply & became very ill. Stacey was one constant whom kept me grounded. She truly has an unmatched compassion for others and is driven to HELP them. Her love of music & enrichment for others comes through her work so apparent. Though our youngest has really cycled through MAAAANY regressions, Stacey never gave up on her. Even when my mind was fragmented & not so sharp-- she never gave up on me. She even came back to us after having her own little one & did so much more than could ever be expected of a professional-- all out gift of her beautiful heart.
Today Stacey is still a key contributor to SJ through her SonRise home program, and soon she will be expanding to S-Bear this summer. We'd never be where we are today without this remarkable & ambitious professional. She brought SonRise back into my sights, after ABA failed for SJ. My kids are blooming in front of my eyes & you've had a tender hand in it; I'm forever grateful, Stacey.
It is with pleasure that I share this very talented professional's Summer Programming information.
Stacey has seen us through some of the roughest times of our journey. When she started, Bella & S-Bear alone had been enveloped into Autism. Within the following 2 years we hit rock bottom, witnessing our 15 mo old baby drift away & only months later, Roo then 3.5 years old regressed sharply & became very ill. Stacey was one constant whom kept me grounded. She truly has an unmatched compassion for others and is driven to HELP them. Her love of music & enrichment for others comes through her work so apparent. Though our youngest has really cycled through MAAAANY regressions, Stacey never gave up on her. Even when my mind was fragmented & not so sharp-- she never gave up on me. She even came back to us after having her own little one & did so much more than could ever be expected of a professional-- all out gift of her beautiful heart.
Today Stacey is still a key contributor to SJ through her SonRise home program, and soon she will be expanding to S-Bear this summer. We'd never be where we are today without this remarkable & ambitious professional. She brought SonRise back into my sights, after ABA failed for SJ. My kids are blooming in front of my eyes & you've had a tender hand in it; I'm forever grateful, Stacey.
It is with pleasure that I share this very talented professional's Summer Programming information.
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