Yes, Indeed - "They Say" and we must do our own THINKING

The "Thinking Moms Revolution - *They Say*" post link (bottom) struck me square in my heart. ALL PARENTS NEED TO READ THIS.

I was told each and every one of these things, more than once, and was still encouraged to vaccinate our baby even though our eldest 3 regressed all about the same time prior. Our Bella was at a biochemical disadvantage from birth with an inability to clear anything from her body (due to her chromosome anomaly) and we were continuously baited by fear into medicating her the most, in irony to prevent future illness.

When are doctors going to start *THINKING FOR THEMSELVES* and think about how to prevent Autism-- THE ILLNESS, yes I said illness because it starts as illness and progresses into disease. It can be lifelong-- oh yes, it can. Depending on the cumulative damage done before a parent starts *thinking* for themselves out of desperation to save their evaporated child.

My best friend in the world has a beautiful child they are diligently fighting for each day to recover, she too has Down syndrome, like our Bella. Her angel succumbed to an Autism presentation after a hospitalization at 6 years of age-- she was not Autistic before the hospitalization which changed their lives forever & she did not have Autistic behaviors. She DID come out of the hospital with damage and had reached a tipping point where their lives changed abruptly. IT CAN and DOES HAPPEN.

Our Bella was 4 when she lost all speech the second time, we believe from seizures subsequent to the injuries she received in her first 3 years of mass-medication and an overwhelming vaccination schedule (combined with a perfect storm of inherited toxicity). No one ever took her treatment into an individual scope until we ourselves took on that role, pouring over labs, research, and more research. Working with the heroes that were willing to look outside the box and help us find the answers on how to help our child(ren).

My husband and I have spent 5+ years working on recovering the 4 children we lost to Autism. It has taken Bella all that time to recover the speech she had at 2.5 years-- she is now 8.5 years old. Our twins now, 5 years later,  have likely lost their Autism diagnosis, with lesser challenges remaining. Our baby is blooming before our eyes, one layer at a time, as we work to teach and engage her in all the 'natural learning' her Autism illness interrupted. Yet all our kids remain Medically Fragile and we don't take their current state for granted. There is damage underneath that we will always be working to support and we have learned that this damage to the brain, gastrointestinal, & overall neurological function is indeed extremely complicated. That said, we happily embrace the lifestyle routines we go through daily, weekly, monthly to be where we are today. We thank God above for His light & grace in leading this journey we are on, for the recovery we have seen, experienced and are still finding-- not all are so fortunate, which turns my stomach in knots knowing all the kids suffering so profoundly out there yet today.

Lastly, know that our family is a subset of the rare, most of the families I know have one child with a full blown autism presentation. Maybe a second child, or a second has ADD, asthma, food allergies or something. Point is-- our current human physical evolution cannot keep pace with the toxic burdens our American culture so openly supports as the norm, in our modern world. Autism touches plenty of families only in 1 child, while the other siblings escape our western way of toxic life practices. 99% of the families I know have only 1 affected child... YOURS ARE NOT UNTOUCHABLE. AT ANY AGE. Don't be fooled by the "Autism is GENETIC" madness. We are living in a toxic world and Mother Earth is screaming for us to listen. 

PARENTS, READ & HEED THE ADVICE W/I---> http://thinkingmomsrevolution.com/they-say/

An inconvenient painful TRUTH

Am charting, in DETAIL, Roo's medical history to prepare for upcoming Immunology & Pulmonology specialists. I. AM. SICK.

By her 6 mo. vaccinations the data stored only in the Pediatrician's records clearly shows, we killed her immune system (& no, that is not drama, but TRUTH). After that visit, she was in PED office for 3 sick visits in 1.5 mos following those vax. THEN SHE WAS VAX'ED AGAIN!! @ 9 mos. 3 more sick visits with unexplained whole body rashes, cold symps, fevers & EXTREME FUSSINESS (I'll never forget her screaming). Only to be VAX'ed the FINAL BLOW (7 vaccines). 5 more sick visits over 2 mos following the pluthera of VAX on her distressed body. Last of 5 sick visit she was positive for STREP. She didn't have any defense system any longer-- for infections, viruses, or environmental toxins of our world (including vaccines). At this point, I left the majority of mainstream medicine to try to help my babies. They started to improve through alternative approaches, yet so much damage had already been done & we're still in the marathon of supporting their injuries.

The most disturbing thing to me about Roo... if her twin hadn't regressed so fast & lost his language, etc. we would have kept on vaccinating her. She could have died-- his regression saved her life. I was uneducated, overwhelmed & couldn't see the bigger picture. I was there (PED office) each time expressing concerns that were downplayed & the PED DIDN'T SEE THE BIGGER PICTURE EITHER. Their office told me to bring her in for 15 mo. visit (which I delayed 3 mos.) & that they could still vaccinate even though she & her twin had a FEVER! This message followed the 5 sick visits & STREP. 

Thank GOD I didn't vaccinate them again.

Post STREP. Her illness list is so very long that I'm too tired to summarize it here. Her immune system was completely overloaded & short circuited. She cycled through regressions more subtle than her twin, yet succumbed fully into an Autism presentation at 3.5 years old (able to be diagnosed by medical criteria). If you meet a child with Autism, it is very very likely this child is SICK & their sickness is not from AUTISM, rather their AUTISM is a result of their SICKNESS.

I AM SHARING SO YOU OR SOMEONE YOU LOVE DOESN'T GO BLINDLY WITH THEIR CHILD INTO THIS ABYSS. We've lost a lot-- my children have SUFFERED GREATLY, our family still suffers and fights to maintain. If you think I'm dramatic, please discontinue reading. I simply cannot go on pretending this atrocity didn't happen & ISN'T still happening to our kids. AFRAID? That's good-- you are on your way to THINKING your way into protecting your child(ren).

Cliff notes: Do not vaccinate your child when they are sick, EVER. A symptom of a rash, swollen injection site, fever, diarrhea, or subsequent infection (even a month after vaccines) is a note-able reaction & needs to be reported to pediatrician. Some pediatricians aren't really open to reporting what they may see as a subtle reaction-- insist on this being noted in your child's file anyway. PROCEED with caution when your child shows a reaction; listen to your gut instincts & stand strong with your instincts. Tell your pediatrician you want to work together to lessen chances that reactions re-occur (by spacing out vax, doing singularly, et all). Your child should not get the disease they are being vaccinated against! If they do-- RED FLAG their immune system cannot process. Did you know Hep vax is for sexually transmitted disease & this is recommended at birth (seriously?)-- do you think your baby needs this? IMPORTANT-- NEVER GIVE YOUR CHILD TYLENOL BEFORE/AFTER VACCINATING as it suppresses body's Glutathione production (the body's chemical produced to get rid of toxic substances), instead give Vitamin C & a probiotic when you choose to vaccinate. Lastly, READ on this topic FURTHER so you can become educated on risks vs. benefit & make INFORMED choices. These are my opinions from lessons learned in great hardship, suffering & loss. I am not a medical doctor with credentials-- so take my notes within as my opinions and encouragement to research these things further on your own. YOU alone protect your child & you (like me) live with the decisions you make for your child. I wish I had had any of this information when my kids were infants. GODSPEED.

http://www.tacanow.org/family-resources/vaccination-choices-for-families-with-autism/
http://www.tacanow.org/family-resources/living-in-a-toxic-world/
http://www.tacanow.org/family-resources/flu-prevention/

Loving RECOVERY

 

Imagine losing your child to a flawed medical system, combined with an ambush of American culture conveniences that only cause toxic overload (gmo food, killing chemicals for: weeds, insects, rodents, our water supply {& us}, cleaning supplies, et all . These conveniences are delivered without delay to your delicate and developing infant, as we hurried parents participate in ignorance. 

The RESULT-- 1 in 6 American children currently are diagnosed with a developmental disability. (that is diagnosed peeps-- what about those not identified?) 

For our son... he evaporated into a medical debacle of Autism at 13 months. He hass worked tirelessly with his Daddy, myself, and a VILLAGE to help his little body heal & expel the assaults of multiple environmental agents (primarily first year's vaccines & environmental toxins) which preyed upon his delicate vulnerability. 

Some people say we parents working to recover our children from Autism are nuts, others call us Warriors. We are both and for good reason (nuts over the preventable, yet covered-up smoke & mirror act which leads the kidnapping of our children's innocent life (resulting in AUTISM presentation) & nuts by default in order to remain sane amidst the aftermath). Let's hope you never have to understand personally the WARRIOR aspect... REALLY. At the pinnacle Warrior-hood is the spirit inside our sick/injured children. They are the real Warriors.

Give S-Bear a listen in this YouTube with his SonRise facilitator & favorite playmate (his *Daisy* {sniff, sniff}). A component of S-Bear's healing is through the SON-RISE therapy modality, the rest is all MEDICAL.

I write a lot about S-Bear's experience because his regression & healing are both so dramatic. I hope you never have to know where he's come from, where we've been as a family. I hope this finds parents early on, so they may assess & make informed decisions in real consciousness. For now, I'm glad to share S-Bear's amazing spirit.


THIS PROJECT THE RESULT & PROOF OF HIM HEALING & US GETTING OUR BOY BACK.

Twas the night before Christmas by S-Bear & Ms. Stacey

You've come a long way, buddy & we're not done yet. 

Amongst Chaos we acknowledge Healing

This past week has been another blur, as there has been a rapid stomach bug which nuked the family home and we had another extreme infection for Roo which required hospitalization. The stomach bug, I can deal-- it's part of life, right? The infection (ear infection gone to heck in a hand basket)-- Mastoiditis. Now this was just too close for comfort. 

From Wikipedia, the free encyclopedia....

Mastoiditis is an inflammation of mucosal lining of mastoid antrum and mastoid air cell system inside^[1] mastoid process, the portion of the temporal bone of the skull that is behind the ear which contains open, air-containing spaces.^[2][3] It is usually caused by untreated acute otitis media (middle ear infection) and used to be a leading cause of child mortality. With the development of antibiotics, however, mastoiditis has become quite rare in developed countries. It is treated with medications and/or surgery.^[2] If untreated, the infection can spread to surrounding structures, including the brain, causing serious complications.^[4]

She literally was millimeters from having direct pocket of infection in her brain. That is a big 9-1-1, unequivocally. The thing that it is most sobering to me is the line "used to be a leading cause of child mortality". This could have been our child still today. Because Roo deals with ongoing damage to her immune system from vaccinations, systemic bacterial infections, prior toxic insults of: antibiotics (now allergic to), heavy metals, chemical exposures etc -- so she is used to LIVING IN PAIN. This is why she didn't tell me anything other than she had a headache & her tummy was starting to hurt the evening before I discovered her engorged ear. Her long blonde locks could simply flow over her ear enough to mask this looming threat.

I feel it is so important to point this out, because she IS VERBAL (excessively sometimes & I say that with compassion, because we've only come from non-verbal, not all that long ago, with 3/4 of our four-some). Roo is considered to be extremely high functioning (for lack of any other descriptor). She can tell me she is in pain & yet she doesn't because that is her NORMAL. This makes my own stomach tumble with nausea.

Children today affected with regressive onset of Autism or other neuro-immune disorders are medically SICK. I have 3 other children more verbally impacted by their regressive onset Autism, 2 profoundly (which I delineate in their spoken words are 90% basic needs and often they are unable to answer simple questions). I hear families in our own Autism community discussing how different Autism is from a low functioning child to a high functioning child. I'm here to tell you, yes- all kids ARE different, yet despite my own 4 being spread out on this *spectrum of injury*-- THEY ARE ALL STILL SICK KIDS. They live in pain. EVERYDAY. Roo is able to cry & tell me "I'm just never going to feel well" & my Bella can only cry & not indicate where/why. Both scenarios for a parent are torturous. 

I think we are missing the boat when we start focusing on where a child resides within the broad Autism spectrum, when really it should be where they are at medically. Yes, living with a child whom will smear feces on surroundings, themselves & otherwise is awful (we still live that somedays)-- yet, so is seeing a vibrant soul at age 6 shrink in such crippling anxiety because that is how her Autism affects her outward >behavior<, all from the sludge of the medical battle going on within. 

Parenting a child with high functioning Autism is not easier from parenting a child with low functioning Autism, when I look at it foundationally (medically that is). Behaviorally it is different, neither is easy. Across all 4 of our Autistic children, we are still searching, adjusting, researching, trialing each & every painstaking intervention to support them the best we can. I still have many people I have to spend excessive time with to educate on my highly verbal child's medical issues, even much more so because she is higher functioning. In summary, many people we come into contact with tend to judge Roo's behavior out of thinking she is being babied, or has a mother with Munchausen syndrome-- simply because Roo is able to talk & is a bright child. This is a sad misinterpretation of the truth. Furthermore, even she is unable to express effectively when she is in elevated PAIN. Half of her hospital stay this past weekend was filled with silence and me interpreting her body language because she could NOT verbalize even to basic yes/no questions.

All this aside-- I am grateful, that God was with us once again & we discovered her infection in the nick of time. I am grateful she did not react adversely to the IV antibiotics which cross-reacts with a class she has become very allergic to. I am grateful, to have my girl still in my arms in this broken world. And, I am grateful that each of my children ARE HEALING, through the rescue recovery mission we have been on these past 4 years after discovering the MEDICAL foundation, under each of their presentations of regressive Autism.

On the eve of Autism One, I cannot be anything but humbled seeing what my children endure daily. I had an absolute torturous day encompassing a pluthera of specialty appointments, yet my own whining is a fleck of dust in the sandstorm of challenges my babies power through each & EVERY day. Thank you God for giving them the tenacity you have, and me the ability to move forward with each of them, even if I am not graceful, I am moving. Thank you for the incredible loving spirits you have equipped each of our babies with. And THANK YOU Lord, for carrying us to HEALING because I feel you with me. In YOUR name, LORD, I Celebrate YOUR HEALING work.

My prayers for the many new families at Autism One (and everywhere on this journey) is that you will walk away with Hope and the next single step to take to helping your child recover. That's all you need-- the hope, will & love to reach your child. God Bless.

Celebrating the soul within - an account of S-bear

In February 2011, an au pair came to reside with us. We took a huge leap of faith to make a bold financial commitment & do this for the purpose of helping us implement fully our SonRise therapy for our children, and also get the help we so desperately needed. P. was with us for 8 of 12 months, when she relocated to another state and family au pair assignment. It was a huge transition for us because we were not prepared. For those of you reading this which have children on the autism spectrum-- you know the shock waves of ramifications I'm eluding to.

Anyhow, P. left our home in October of 2011 and just a  few weeks ago (nearly 6 months later), out of the complete blue, S-bear asked me, “Mom, does P. live in China?” I said, “Well, she is from China.” I paused to see if he would express more about what he was thinking about. He just sat there at the kitchen table reading his books for a few minutes, then he said to me, “Mom, is P. coming home soon?”

This whole spontaneous conversation blew me away, because it was completely random, and when P. was here, S-bear didn't outwardly show much of a connection with with her. For one, he is less expressive outwardly (it's only been about 20 months since he first uttered a 3 word sentence for something beyond a basic need); secondly, he has such sensory challenges that he doesn't tend to show emotional attachment beyond Momma & Daddy. 

S-bear is truly changing & really healing. We are so grateful for his healing. This reminded me again &  showed me how his feelings have always been there inside & that he had truly bonded with P., just in a way that maybe wasn’t as identifiable outwardly to us around him. This is a very teachable lesson for me & such a blessing because it absolutely fuels me to always keep on the road of S-bear's recovery. ENDLESSLY.

Even further, it reminds me to celebrate the beautiful soul he is, TODAY and everyday forward-- right where he is in each day (without judgement, assumptions, and full respect that he 100% is complete). Every inch of the iceberg of my son, S-bear, which is revealed as it comes above the water level of autism is a gift, and everything below water level I do not comprehend is also a gift ; &, by God's plan and direction we WILL see our boy's whole spirit & being through our faith & service.

I love you my beautiful, beautiful, beautiful boy.

The power of Music

My daughter is 6 years old, has Asperger's syndrome, an Autism spectrum disorder. Outside of the medical foundation of her diagnosis, for her this behaviorally manifests in her: extreme anxiety, agoraphobia, rigidity of rules, need for sameness, extreme sensitivities to stimuli (sound, light, etc), difficulty with spontaneous interactions outside our home (& sometimes within), a brilliant mind with severe social deficits, including her self-knowledge of her being *different* & struggles with balanced self esteem because of.

When she regressed, she hated being sung to-- it was such a weird thing because it's a normal comforting action to soothe your distressed child with song, as a parent. She would scream, cry & tantrum. Years later, she herself would sing, but no one could sing to her. It was then our Developmental-Music Therapist told me that she had a remarkable ability for pitch (2 years old). I knew this was because she has such hypersensitivity to sound, she hears things I cannot, including accurate pitch.

Anyhow, it's 4 years later & Roo just began to work with one of our Earth angels, the same dedicated Music therapist-DT that has been with us for the past 4+ years. It has taken 6 weeks of time with the therapist to do what I'm going share with you. Yesterday, Roo told her MT that she wanted to lead the song, made up the endings to the verses & made eye contact with her the entire time. She was confident, engaged & her true personality shined through. I love this little girl & am grateful for the blessing of the gifts and healing energy of one very talented Music-Developmental therapist. We love you Stacey! Thank you for keeping on knocking on my door-- you are a powerfully positive anchor in this journey.

The following is proof that Music therapy offers healing, growth to everyone-- even the Mommy & Daddy of the client. Now if I could just stop the happy tears... =>

click here ----> Roo singing "Down by the Bay"

The fight of this world... philosophical thoughts

As much as I know there are blessings all around us & our family is taking action to provide for, heal, and truly celebrate our tribe of 4 young extra-ordinary kids-- IT (the reality of the life we fight for daily) still stinks at times. I feel it's important to vocalize this, because more & more I am aware our fast paced American culture trains us to push away and suppress the feelings and thoughts which are negative or unpleasant. A perfect analogy of this is the overall health epidemic spreading like wildfire throughout our nations' children (encompassing asthma, juvenile diabetes, allergies, cancer, mental illness/mood disorders, neurological injury spanning everything from ALS to Epilepsy to Autism). I have blogged a lot on the topic within the previous sentence, yet my purpose today is to go beyond this, as I believe the individual epidemics alone do not account for the burden, despair & fears real people feel today.

It has been a very emotional struggle personally these past 3 months, and not really due to any one issue. If I were to focus down and look in summation of challenges that have contributed to this struggle for me, I'd say-- lack of connection, feeling of isolation, and feeling no one can possibly understand what it is to live this life, my life, our life day in and day out. The exhaustion, the worry, the constant triage of 4 very complicated little humans, plus mine and my husband's health challenges, not even getting to our needs. The feeling of time passing by & just making it. The daily effort it requires to "sustain" any form of acceptable quality of life, all while managing the constant tide of NEEDS of the children, the home, the family, the bank, the world we exist in.

Take out the fact that our family has 4 children with extreme medical, daily care, and overall supportive needs-- I think ANYONE can relate to feelings of "disconnection, isolation, and being alone". It happens to everyone at some point/time in their journey, regardless of the challenges of their earthly circumstances. I am reminded of this Life fact, by knowing, feeling & experiencing not only our own hardships-- but seeing it in so many people outside of my home. This reflection makes me think, wonder & ponder our human nature, and perhaps our selfish limitations of being mortal. If we acted in the love of our Father, and built the communities upon His Love as He desires would we be so lost?? My thought-- NO. We are all subjects within a broken world and yet we have the power to overcome, connect & support each-other in our journey HERE. Frankly, I think it's evident that our own human race survival depends on this very Intended communal design.

I think about the Moms & Dads that have shared the road in pursuing healing for their injured children (like E. & I); & how that sliver of mankind is a community which has truly supported one another, as I believe God knows we can do... only we can do so on a much grander scale. Regardless of our challenges, beliefs, and subsequent judgements... we are all in this world together. Don't we want to make it better, sustainable, a global village of honor and human integrity? Even though there are times, I'm truly at my bottom - I still believe that if we each think of this Life from our Creator's viewpoint (or whatever higher power you believe in) we would see the hope that will be actualized by real communities of people taking action to make a difference, not just for today, but for always. We humans (in search of control?), create divisions amongst ourselves and allow empowered hierarchies to further segregate us, rule (just & unjustly), and take our collective human brother/sisterhood of power. However; we often overlook that we together truly posses the power, innate love and the divine nature to overcome these obstacles in union, community for all brothers and sisters... if we only see the bigger picture. God's picture.

This alone gives me hope & helps me make sense of the challenges we all face. Doesn't mean it's all glorious, and makes me realize the *feelings* we have been gifted with can be catalysts for positive change, if only we recognize & process them, rather than pushing them away. Our feelings and senses are the intuitive means for perseverance, building a better tomorrow.

Don't give up; the devil is hoping we will. However, our: children, neighbors, family & friends are all counting on that we won't. Ever. GIVE-UP.

Happy Easter. The wishes of happiness and health, through rebirth to all-- starting with each self.

Momma T.

Autism - Not a genetic disease

Autism isn't a genetic disease, as Autism Speaks (R) touts. It is caused by the systematic environmental attack of the immune, central nervous, and neurological systems from the first day of life, and even while in utero. There are genetic vulnerabilities, if you can consider what we pass along cellularly outside of DNA: the toxic waste of mercury, other heavy metals, infection, viruses, and all the chemicals we as parents cumulatively carry... which then are passed to our baby.

As an expectant carrying mother, we detox to our unborn children in utero. This is the first environmental hit. Add to that mass vaccinations (containing poisons like mercury, formeldahyde & aluminum; not to mention biological matter sourced from aborted fetuses, pig, monkey, etc and so much more!) on an immature immune system, the convenient pharmaceuticals prescribed to clean up the immunization's after affects (ear infections, respiratory ailments, unexplained skin erruptions, etc etc), the processed garbage in our national food system (genetically modified food, harmful preservatives, petroleum based food dyes, synthetic carcenogenic sweeteners, plus toxic elements everywhere (from the fillings in our teeth, fluoridated public water, household cleaners, chemicals doused on our lawn living spaces, e-smog, etc). The assaults on our human existence are infinite.

If Autism were genetic, there would be genetic lineage traced in families, spanning generations. Instead, we are now living in the Biohazard Corruption of all times, with greed as the ultimate evil. Our healthcare system/providers are funded and trained to prescribe and vaccinate (by the Pharma corps which fund the medical training programs). Even our own Federal Vaccine Injury Court has granted immunity to the Pharma companies producing vaccines, so they will not be held accountable for the injury caused. How can any of this be ethical, legal, or simply allowed?

INDUSTRIAL CORRUPTION, GOVERNMENT ENDORSEMENT OF SAID CORRUPTION, SCIENTIFIC CONFLICT OF INTEREST & DENIAL, plus MONETARY GREED

causes the condition called Autism.

These are my children. They were not born with Autism. They regressed into a *state* of Autism (you know, the behaviors one exhibits to be diagnosed with an ASD). I had no idea of the medical foundation of complications within Autism upon our 1st diagnosis, yet have learned in a turbo tidal wave these past five & a half years, in order to reclaim my children.


Bella was born with Trisomy 21, a heart defect & an engaging personality larger than life.
  
She was not born with Autism. She is now 1 in 88*.  

 *the # the CDC now reports as the incidence of Autism (which doesn't account for kids under the age of 12. My children are all under 9 years old).

  
Sbear & Roo are twins whom were born premature, yet healthy weights with no assistance needed after birth & no health issues. They developed beautifully, were vibrantly interactive, affectionate & full of spunkiness.
  
They weren't born with Autism. They're now 2 in 88.



SJ was a healthy full term baby. She was as sweet as the day is long, and a virtual superstar in development.

 
She was not born with Autism. She is now 1 in 88.





HOW ELSE DO I KNOW AUTIM IS NOT GENETIC?
They (our kids) are healing, improving, recovering as we work diligently to address the cumulative medical complications of their health injuries. If it were genetic, they would be static, because haven't you heard??... There is no cure for what is called "Autism".

----------------------------------> from a remarkable group educating and advocating for the rights of humankind, including our most precious resource - our children. Please read below.

"‎1 in 88 does not even count children under 12. Hundreds of thousand of kids. Yours and ours. PLEASE. Educate! stand up...and FIGHT FOR THEM! Respectfully, LJ Goes (the rev)" from TACA-IL on facebook.com

read/watch here -----> OUR CHILDREN

Now imagine one of these innocent faces 
were one of YOURs.

Your son, daughter, grandchild, etc.

The Story of Roo - her road to autism

She's 6, part diva, part princess with a rainbow of colors in between. Roo is a twin, technically a middle child though developmentally the eldest. From the day she was born she was delicate, almost fragile. Demanding, intense, yet the sweetest baby girl. Her Uncle Shawn summed it up best when he described our little Irish lass as having devil horns to hold up her halo. Despite being born 6 weeks early, a twin, and under 5 lbs when she first came home - she has always had a warrior's strength/spirit.

At 6 weeks she was hospitalized with RSV. It was the start of a long chain of medical events she has encountered day in and out since then. She was often extremely fussy even when there were not explained outward signs of sickness. Other times she would get peculiar rashes, sunken dark circled eyes, a never ending runny nose, and blistering diaper rashes, despite chemical free: detergents, baby wash, diapers and homemade wipes.

 Each well baby check in which she was vaccinated, 2 or more sick visits followed. Endless crying, overall notable discomfort, rashes and infections that were treated by her pediatrician's direction, with antibiotics, steroids, pain relievers, and a virtual slew of other pharmaceuticals. I was naive, overwhelmed with 3 children under 2.5 years of age. My eldest child, Roo's big sister, already had extremely complicated medical issues ongoing and a developmental delays associated with Down syndrome. In that time, I couldn't see the forest for the trees. All of the now glaring signs of Roo's intolerance of her vaccinations, in hindsight were buried amongst the chaos of caring for psuedo-triplets, while 85% of the time I was solo in doing so. I was nursing preemie twins, and caring for a toddler whom had profound special needs. Meanwhile, back in that time, I wasn't connecting the downward slope of my Roo's health, and I thought we were doing everything we could, as we were always under the pediatrician's roof. Even so, the unexplained fevers, watery eyes, clear runny nose, asthma, colic, diarrhea, skin erruptions... by 1 year the list was long. 

At 13 months, Roo's twin (S-bear) regressed sharply into autism following his last group of vaccinations. The twins had received 9 total in that well baby appointment, including the MMR. For the first time her twin became more sick than she; he was feverish, lethargic, had crazy night waking, loss of language, stopped smiling and looking toward his name being called, nearly oblivious to our existence, etc. His extreme decline masked Roo's less drastic slope downward. I was frantic at what had occurred with our son's plummet into regression. I spoke to our pediatrician multiple times, specialists, and was told over & over, there is no connection between vaccines and autism. It was shortly after this time when we were surprised with news of our last pregnancy.

After her 13 month vaccinations, Roo's existing medical issues ramped up and she began to cry at sudden/unexpected/ high pitched noises, didn't like to be sung too, made fleeting eye contact, resisted affection, and often struggled to simply be still. I was always brought back to an explanation that "she was a preemie, her immune system is premature too. She will catch up. She's sensitive... It's her personality." She was/is sensitive, but its the bio-chemical/physical sensitivities she had which lead to her neurological and physical regression. It was a slow slope until 3.5 years old when she fell off the canyon wall, full on into hard regression.

 

She wasn't always so impacted, but the cumulative medical (immune system) damage had been done by the same tipping point of her twin, in the first year of vaccinations. By 15 months she was very verbal - knew her alphabet and numbers, by 18 months - speaking in fluid conversation by 2 years. Her twin was non verbal then. Around 18 months she would talk to herself about her hands hurting, ask herself "are you ok?" then would recite to herself the words of comfort in a script as I would typically do in reassurance to her. A complete blood work up revealed a big fat nothing and the pediatrician told me likely she was seeking attention over her siblings. Yes, she was demanding of my attention, although she wasn't seeking attention for this, because she was speaking to herself not knowing I saw her. This is when I began to look outside western medicine in a much broader scope. We went to a highly recommended Naturopath MD around this time for all 3 of the children to get food allergy testing done & in addition began working on healing their inflammed and damaged gastro-intestinal systems. They became a little better in behavior & sleep, although it was a long road. More on this in another post.

Roo continued to be susceptible to all & any virus, which often turned into an infection. Her environmental allergies were immense (atop the numerous food allergies) & she generally always looked tired. Her little immune system had been nuked and we did so much to keep her stable, although again, it was such a circus having now 2 kids in Early Intervention therapy & 3, under the age of 3; while expecting our 4th baby. Special diets, crazy routines that seemed like rituals to just survive the "need for sameness" of Sbear & Bella (really Roo, too). I'm sure, a lot of our family thought we were crazy-- we were nearly so, but not because of the things we chose to *take care* of our children. Our sanity was challenged by the energy, physical, mental, emotional, financial & overall life exhaustion that came along with it. We didn't see the choices of their special diets, supplements, intense therapy, & all the intricate details of their care, as a choice. They deserved our utmost support & how could we choose otherwise knowing all of it helped them.

Because Roo's immune system was so poor & her health so complex, she got to a point at 3.5 years old when she harshly crashed. Her body was simply worn out, by constantly working overtime just to be. She got a virus that spiked very high fevers, couldn't walk, didn't eat. I had to syringe water/pedialyte into her mouth in very small amounts around the clock to keep her hydrated. We had two ER trips over a couple weeks time, in addition to the regular pediatrician visits, the second ER trip ended in an ambulance ride, as she was unresponsive to spoken language or our touch & she appeared to be hallucinating. The ER physician said she looked septic, and she was whisked away to the nearest Children's hospital. We were released later that evening after IV fluids, oxygen & nebulizer treatments, but she was far from better.

Fevers remained intermittent & she still could not sustain any energy. She completely lost her toilet training, with continuous daytime wetting; when she had been previously 100% potty trained day & night time for over 6 months. The following month's time brought a loss of her bowel control. We saw several specialists, but a neurologist was never recommended. Meanwhile, I still had other children with extreme needs at home to manage. Her kidney damage was diagnosed and information from the treating physicians was frankly useless.

Roo's social connectedness became much more disjointed. She had difficulty relating to others in her peer group, preferred only adults. Separation anxiety & just anxiety became major obstacles. Her sensory challenges were even more so amplified. This In itself triggered her anxiety & it was a vicious cycle. She spoke much more in scripts repeating entire dialouges in proper contexts, just as I would have said them to her. She had difficulty expressing spontaneous speech, recalling information and answering simple questions. Her mind was brilliant, yet she lacked empathy, resisted touch & affection. Her self-inflicted rules were specific & not even remotely flexible. All these other things that followed the major physical, medical regression, left her in the category of Autism. Her official diagnosis came on her 4th birthday following 3 days of intense neuropsych evaluation.She wasn't even the same child outside our home, especially at school-- she chose to be silent & withdrawn. The evaluating doctor first told me she thought she was "selectively mute" after the initial school room visit. My heart sank, because I knew how much she must have struggled at school, while the staff there must have just thought she was intensely shy. That representation of Roo was the complete opposite of her abilities and her personality. At home she was a dominating conversationalist & a force to be reckoned with. I wonder how many *high functioning* kids slip through the cracks in this regard.

Two and a half years later, she has come a long way. We have spent that time diligently working on all aspects of her health. She falls into the autism spectrum near Asperger's syndrome. Health is still her number one struggle and the medical issues are deeply entwined into her presentation of Autism. She is recovering, progressing, and blossoming. It is just a delicate dance between the setbacks of her fragile health. Her challenges are still REAL, and though perhaps subtle to those not familiar with the spectrum of Autism and all the intricacies involved, her struggles cause her much stress. She is a warrior disguised as a princess. She is a success driven angel who strives to be better everyday. I am proud of you, my darling Roo & I will never give up on helping you heal. xoxo Momma

Cannot believe it is February!

This life often seems like a blur. Not in a negative way, in a house with 4 little kids, 3 schools, 5 teachers, 11 regular therapists, many helpers/visitors at any given time, a momma, daddy, and Mercy our 3 month old puppy. Not to mention outside the home work, let's not forget about that, and the diligent routine of health supports doctors appointments needed ongoing.

When things are going steady on the health front we have 6 hours of general maintainence doctoring, plus another 4 hours of travel time on top in one month. Plus some sort of diagnostic checkup whether be for hip dysphasia, eyes, dental, cardiology, ent, endocrine, urologist, bloodwork etc etc. When health is on the decline we have weeks like the past 6 encompassing additional sick visits of two/week on average, weighing important decisions of damage a medication may cause vs benefit, very needy little ones, and a sleepless mom and dad. Ongoing fevers, remedies and sick supports, laundry laundry and more laundry, cabin fever, and a good month plus of missed school due to illness across these 4 babes. Did I mention stress? I think I can take Vitals on my kids nearly telepathically.

Anyhow, all that to be said. February is Here! Whew, it's amazing how time flies and we survive. :-) Couldnt resist that last part. Hubby and I are coming up on our 16th wedding anniversary. We have seen a lot in that time, gained a lot of insight, acquired unexpected knowledge, and yes we have a relatively advanced aging involved, but we are still kicking and doing and learning. I can't imagine my life without him, as demanding as it can be on us individually and together, he is my love and partner. I think back to 1992 when we met-- wow, no words for the journey other than nothing I ever could have imagined. I am grateful for this man and God's blessing of him to me.

2012 Here we go!

So it's nearly 4AM and I have been awake since 2AM, when Bella first came downstairs. She has this darned Influenza virus that has blazed a trail through the family, so I am sure she awoke from the head congestion or body aches. My entire back and neck feel like I have fallen from a third story onto the ground below. Anyhow, I am awake, which is a normal for me in this house... But even worse miserably so (yes, I am whining).

It has been a brutal week and a half of illness. Roo and Sbear first spiked temps last Monday and Sbear is still not well. He rarely runs fevers and especially not to the tune of 104. Makes me nervous even though I know his body is doing its job to fight off the viral invader. Takes me back to a not so distant memory segment when he first became so sick following 7 vaccinations he was given at 12 months of age. For 2 weeks he had intense fevers with no explanation. We had multiple ER trips with no source or explanation for his smoking high fevers, so the ER doc sent us home with an antibiotic. This makes my gut ill now as I recall the details. No medical professional ever asked if he had recently been vaccinated. Unfortunately I was clueless and the damage had been done. Roo's descent was more subtle into the autism abyss.

I spent some reading this weekend "Thinking in pictures" by Dr. Temple Grandin, an individual with high functioning autism. It has been extremely informative to see inside her world and hear her words, explanations, and research on how an autistic mind works. It also has been a bit emotional as a Momma to read about the unpleasant feelings, emotions, and even overall brain damage and have it apply to all four of your children. It is a stop and pause on how truly atypical our family is, for me. I am submerged into our reality so deep that I don't often see it from the outside in. Seeing my husband sick himself and me feeling strained makes me wonder how I don't feel hopeless the majority of the time. I guess it is a mystery blessing that I needn't understand. I just pray for healing and health for all 6 of us.