12.06.2011

Something EVERY parent & red-blooded American should watch... share with others for EDUCATION

I wish I had the privilege of this knowledge prior to vaccinating my children. Then I could have actually made an *informed choice* & asked questions, seen signs that my children were not tolerating vaccines I was loading them with. I know God's plan is perfect, and I know I am not to be silent. Autism is not the only possibility... people are suffering from autoimmune conditions, loss of neurologic function, seizures, and other damage following routine flu vax, gardisil vax, from ages spanning infant-teen-adult years -- this is REAL.




And one more... Parents-- trust your instincts.

12.04.2011

Happy Birthday My Love

Honoring our firstborn angel. We love you... you've enriched our lives more than ever we could have dreamed.

watch here -> Loving Bella

11.24.2011

Happy Thanksgiving!

In honor of three very precious people in our lives... in addition to the vast spectrum of blessings we have received in this year. Thank you, Lord! Love you Michelle, Mom & Shawn. Each day is a gift and each day we have you we are blessed. T. 
**click on link to LISTEN... Karen Drucker "I am so Blessed"

SJ (4)drew this morning

11.20.2011

Family photo opp from Summer

We tried-- LOL! How many takes will it take? 
Shooting film of multiple kids with Autism is like herding cats. 

11.11.2011

Progress - Looking back & then to today *A Place of Miracles*

Today I'm taking the time to pause & step outside of the *circle* of our family's life. I find myself drawn to take the vantage point of spectator, in order to remove myself from the emotions of this journey. This is quest of comprehension, rather than needing to shut off from reality. A conscious effort to take in, recall events, and celebrate today.

My children are changing; YES, as kids do, but moreover ours are evolving profoundly; I feel a need to pause and purposely observe. The constant daily circuit of care-giving & family routines often preoccupies my mind; I often am not focused on how magnificent this journey has been & IS. I don't want to succumb to the complacency of *taking for granted*-- where we are today and the miracles beneath this roof. 

From experience, we've lived this life understanding it is delicate, with full realization that nothing is certain or untouchable. Our world can and has been turned over in fractions of a second. Daily I'm in awe so often of my children and each millimeter of their movement, that when I step back to see the whole horizon, honestly it's none other than astounding. My mind finally sees the giant work God has carved out with details & purpose I never recognized in the moment. Maybe I saw a shadow of the beautiful mountain, yet He had created an entire breath-taking universe in comparison. Through everything... absolute exhaustion, unparalleled stress, calamitous illness/regression, & my absolute uncertainty of tomorrow-- He has had our plan & continues to carry us.

We've bottomed out more times than I can recall or even truly want to, yet somehow, with the help of someone(s) our family propels forward. The children are champions, even on their worst days-- my neuro-typical mortal frame pales in comparison to the will, light, & energy of their tenacious spirits. These unique people don't know how to be disappointed, lose, complain or give up-- they've never had the choice. The world as we know it does not vibrate harmoniously for their inner workings & yet the rest of the unscathed population can learn so much from even one day in their life with their challenges and triumphs. I fully believe, as parents of Autistic children, we are raising AN EPIDEMIC OF TEACHERS... beyond our complete comprehension.

Today I focused in terms of only one year ago & what this time has brought to each of my babies. I'm left with a sense of gratitude so enormous, I'm singing praises. Thank you, Lord!

A YEAR AGO...

- Bella had unexplained acute onset of bilateral hip dysplasia. She had no social interest beyond getting her most basic of needs met. She preferred to be completely exclusive, not even in the same room with any of us & chose to partake in repetitive isms like a broken record. OCD-like tendencies ruled her world. Today she is cast-free, brace-free & doing gymnastic feats with vigor. She is making eye contact, pointing to request, addressing whom she is speaking to, answering to her name, excited to see friends, engage-able, less obsessive & desires independence in being the big girl she is.

- Roo was cycling through immune crashes/viral wipe-outs/infection every 2 months, she wasn't growing or putting on weight. Her lungs were severely vulnerable, her eyes sunken with dark rings, & her body wasted compared with today. She battled rigid fears, specific phobias, and consistent separation anxiety. Now though still immune compromised, she has energy each day in bursts & large growth of physical coordination (still alternated with fatigue, but huge gains), she has outgrown her brother in height, her appetite is improving, she is aware of social nuances, working constantly to learn flexibility in this unpredictable world, she's growing significantly in confidence & even competitive, she's really starting to blossom with independence & expressing empathy actively.

- S-bear was speaking nearly entirely in scripts & playing exclusively to himself. He could not make direct eye contact with out covering his eyes afterwards, was up 2-3 times per night, & was oblivious to our social world. His auditory processing was firing on about 10-25% of our spoken language. His exclusive play was rigidly repetitive & his isms were compulsive & occupied his entire day. Today he is expressing his thoughts & feelings in real, as well as abstract details, he is seeking to engage others across environments, processing spoken language/following directions, & verbalizing thoughts nearly equal to his twin sister (just not quite so bossily). He seeks friends, talks of other people & allows us into his world of imaginary play. He is concerned about others, how they are feeling & protective of them. He prompts me with the coping scripts I once fed to him line by line.

- SJ was outwardly displaying seizures, stunted growth, repeated systemic infections, extreme withdrawal to the extent of long periods mutism daily, constant cyclic regression, and her speech was in one or two words for basic needs. She never called to me as Mommy, sought help, & her eye contact was only in accidental fleeting glances. She was content most often, but in a completely separate world from ours. She occupied herself in infinite repetition of isms. Today, she looks at us, protests & calls out to Mommy, dances & performs dipped in her own propetual sunshine vibrantly. She loves school, verbally comments on her surroundings & the people in them. She is excited by PEOPLE, acknowledges them (even those she doesn't see often) & is truly fond of her siblings. She has an opinion larger than her little body & is growing! Her speech has expanded & she has an amazing sense of humor. A true character, she is.

We have a long path ahead, yet in this moment I acknowledge God's grace & light upon these children, His hand in the angels He sends to us, & the perfection of His design in these unique little beings. The road has not been straight, nor do I expect it ever will, yet in 3 words for today: Progress, Love, Celebration. This home IS *A Place for Miracles*.

In celebration of the true essence or our: Bella, Roo, Sbear & SJ. 
"What lies behind us and what lies before us are tiny matters compared to what lies within us." Ralph Waldo Emerson



11.04.2011

Thankful for the little things

Recent I'm grateful for...


Sharing a field trip experience with my twins... they are nearly 6 & it is only maybe my 3rd or 4th field trip I've been able to do with any of our 4. So amazing to see them outside their normal environment. My little girl had some difficulty, yet I'm so amazed by how incredible she is & how far she has come. My little guy, was *at one* with nature. The frog riding on his head was the animal we were exploring *how it would live in the habitat*. At one point he contributed to the discussion that "penguins would not live here"- lol. The wheels are always turning.































11.03.2011

Photos from Els for Autism Grande Finale & Cog Hill event

What an event. Amazing on so many levels. Feeling empowered & recharged.


T, Big E., Little E.










Beautiful Cascata course


 
Check out little man front & center-- Mr. Ben Els


M. & E. far left & below.

 Kinda remind me of Roo & S-bear.

Our finale party view from PH rooftop. S-bear would have loved the animal presence :^)





If only I could get this group's energy in the SonRise focus room.





Awesome couple, with true & genuine about making a difference NOW.




Above photos courtesy of Els for Autism & Sponsors
for more, see website @ http://e4agolfgrandfinale.com/news-and-media/2011-photo-gallery





Friends, Family, Comradeship-- A Common Cause


10.27.2011

The Grande Finale

October 23, 2011


It's Sunday morning -- E & I are seated on a plane to Las Vegas, Nevada. This trip is for E & I to attend Ernie Els Grande Els for Autism event. at the end of September our team had $11,700 raised for the Center of Excellence benefiting families like ours, with children on the spectrum. Even though it's only been just over 2 months-- the event seems a long time ago. Time is never stagnant these days. I'm excited to be going with E. alone to share in this monumental event together. 
_________________________________________________________________


It has been 5 years since we knew Autism was in our home, altering our lives & at the time stealing away the soul of our baby boy. Now when I think back to then, the wound is still there, though buried beneath volumes of time, prayer, tactics, emotion, etc. There is no other torture great than watching your child fade away into a distant self-exclusive world. Especially when he was such an affectionate, alert, fun & vibrant little guy up until then. I knew in my heart at that time, our beauty Bella had also been transforming, yet her descent into Autism's grip was not as defined as S-bear's. Physicians had convinced me it was another dimension to her intellectual challenges of Down syndrome, yet deep inside my Momma's intuition knew better... discovery was yet to be found.


In general at that time, I remember feeling so unbelievably busy with Bella, whom then was a 3 year old with a multitude of therapies, our twin 1 year olds, and our baby SJo whom was nested securely in my womb. It truly was a blur keeping up then & dealing with the onset of new and greater challenges. Though today is every bit of busy as then, it is only different busyness. I have to consciously reflect upon our family today to really comprehend it as a whole, with all the multifaceted intricacies involved. The medical needs and supports are still profound, yet the children are healing more often than not (sometimes in inches, sometimes in yards). Finding Dr. MKG was a divine intervention that has changed our course of supporting our unique little tribe; for which we will ALWAYS sing praises. We LOVE Dr. Gs (plural- as my son calls him).


In our journey I have been trained to appreciate where we are-- simply by knowing where we've come from (rather, where the children have traveled from on this journey). Even in each of their uniqueness with REAL challenges-- they are more magnificent more than I ever could have imagined in becoming a parent, furthermore parenting those with special needs. The daily minutia takes the lion-share of my attention, yet there is a ever evident trickling stream of God's light that shines through in moments among the everyday. The connections I have with these little feisty beauties-- is the true GIFT I will never tire of. I do get tired after the big waves & even in endurance of this marathon, yet my babies give me the adrenaline, the will, the drive to never stop.


Bella, Roo, S-Bear, & SJo are making PROGRESS and come out winners each day for just enduring and processing all the daily sights, sounds, feelings, et all-- which the neurotypical population takes for granted. Autism in some ways is a silent disease, because on the outside-- they appear fine when not completely in meltdown, but I know they endure so much and that is why they are the CHAMPIONS, not me or any of us around them. THEY ARE THE TEACHERS, if only we will listen.


Their progress is wonderful, a precious treasure, even great for some of them-- but, I savor the connected-ness I have with each. I will never ever take our connection for granted, because their were times for each of them, when they were aloof, completely isolated from this world, indifferent to my presence, or even preferred solace. Thank you God, for equipping me with the resources and tenacity to build bridges, even if these bridges are always changing. Thank you for sending us the people whom have helped build these bridges with enthusiasm, acceptance, joy & celebration. We are blessed. 


A connection may be a twinkling beaming smile from SJo, a moment of discovery and comprehension with Roo, a genuine pure affection from my boy wanting Koala cuddles, or just the awe I have in soaking up the innocence and light within Bella's beauty-- her star-laced eyes, soft freckles, amongst her vibrant diva-ness. GIFTS are abundant, where we care to see them.
________________________________________________________________


October 27th, 2011


The Grande Finale event far surpassed anything I had imagined. Speaking with the parents and loved ones to those on this journey was so commanding because they all radiated proactive in a positive light. It was refreshing to see all these families  together in one place *doing* & not just off to the side in Autism’s trample. Yes, this journey is challenging, yet being surrounded by people knowing WE CAN & DOING something about it was powerful. Meeting Ernie and Liezl Els was amazing; they both are so approachable, loving & open. I've never had the feeling of the simple common bond of another mother championing for her child, as I did while speaking with Liezl, in comparison with other high profile parents we've met. Ernie is as lovely as his persona shows on the big-screen; he is a gentle (and handsome) giant, with a fabulous sense of humor and genuineness. A lovely and inspiring couple, the Els. Of course the event itself was INCREDIBLE & first class-- way outside our normal reality, though we are grateful for the experiences & generosity and work the Els for Autism staff and leadership put towards it. All I can say is W.O.W.!!



It was so exciting to have this whole experience with my partner E. I'm proud of him in choosing this endeavor and leading us in our first ever Autism Awareness family event. With all his responsibilities he doesn't often have the time alone to lead, though he is a natural. We are so blessed to have such great family support (LOVE YOU ALL) along the way as well, standing alongside E. throughout this process, meant so much to both of us in our "coming out" into the Autism community. We know, believe, & continue to pray for guidance in our purpose and how we are to put to use the gifts we each have in leading and making a difference, not only for our own family-- but the astronomical numbers of families on a similar journey.


To all the Els for Autism families-- see you next year! We're ready to rock again in Illinois, Wisconsin & Minnesota. => And, Blessings to EVERYONE WHOM supported Team Schoonveld!!!


T.

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. 

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.





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.



EVENT         TEAM SCHOONVELD (Ernie) Els for Autism Golf Challenge FUNDRAISER


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
http://www.e4agolf.com/e4a_bio.cfm?sid=114325

Our Family Blog
http://detourautism.blogspot.com/2011/06/were-sponsoring-team-schoonveld-for-els.html




EMAIL           detour.autism@live.com




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

Thank you to our initial team sponsor, J.A. Watts, Inc., Julie and (Uncle) Mark , and all of our family and friends whom support us on this mission daily and year after year. Thank you for loving & celebrating our beautiful children just as they are!

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. 

Governor's contact information: 
Phone 217.782.0244 or 217.782.6830
Fax 217.524.4049

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)